Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014
PL 113-166 (H.R.594), enacted 09/26/2014

[113th Congress Public Law 166]
[From the U.S. Government Publishing Office]



[[Page 128 STAT. 1879]]

Public Law 113-166
113th Congress

                                 An Act


 
 To amend the Public Health Service Act relating to Federal research on 
     muscular dystrophy, and for other purposes. <<NOTE: Sept. 26, 
                          2014 -  [H.R. 594]>> 

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled, <<NOTE: Paul D. 
Wellstone Muscular Dystrophy Community Assistance, Research and 
Education Amendments of 2014. 42 USC 201 note.>> 
SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Paul D. Wellstone Muscular Dystrophy 
Community Assistance, Research and Education Amendments of 2014''.
SEC. 2. INITIATIVE THROUGH THE DIRECTOR OF THE NATIONAL INSTITUTES 
                    OF HEALTH.

    Section 404E of the Public Health Service Act (42 U.S.C. 283g) is 
amended--
            (1) in subsection (a)(1)--
                    (A) by striking ``Muscoskeletal'' and inserting 
                ``Musculoskeletal''; and
                    (B) by inserting ``Becker, congenital muscular 
                dystrophy, limb-girdle muscular dystrophy,'' after 
                ``Duchenne,'';
            (2) in subsection (b)--
                    (A) in paragraph (2)--
                          (i) by striking ``genetics,'' at the second 
                      place it appears; and
                          (ii) by inserting ``cardiac and pulmonary 
                      function, and'' after ``imaging,''; and
                    (B) in paragraph (3), by inserting ``and sharing of 
                data'' after ``regular communication'';
            (3) in subsection (d)--
                    (A) in paragraph (2)--
                          (i) in the matter preceding subparagraph (A), 
                      by striking ``15'' and inserting ``18''; and
                          (ii) in subparagraph (A)--
                                    (I) by striking ``and the Food and 
                                Drug Administration'' and inserting ``, 
                                the Food and Drug Administration, and 
                                the Administration for Community 
                                Living'';
                                    (II) by inserting ``and adults'' 
                                after ``children''; and
                                    (III) by striking ``such as the 
                                Department of Education'' and inserting 
                                ``including the Department of Education 
                                and the Social Security 
                                Administration''; and

[[Page 128 STAT. 1880]]

                    (B) in paragraph (4)(B), by inserting ``, but shall 
                meet no fewer than two times per calendar year'' before 
                the period; and
            (4) in subsection (e)--
                    (A) in paragraph (1)--
                          (i) in the matter preceding subparagraph (A), 
                      by striking ``through the national research 
                      institutes'' and inserting ``through the agencies 
                      represented on the Coordinating Committee pursuant 
                      to subsection (d)(2)(A)''; and
                          (ii) in subparagraph (A)--
                                    (I) by inserting ``public 
                                services,'' before ``and rehabilitative 
                                issues''; and
                                    (II) by inserting ``, studies to 
                                demonstrate the cost-effectiveness of 
                                providing independent living resources 
                                and support to patients with various 
                                forms of muscular dystrophy, and studies 
                                to determine optimal clinical care 
                                interventions for adults with various 
                                forms of muscular dystrophy'' after 
                                ``including studies of the impact of 
                                such diseases in rural and underserved 
                                communities''; and
                    (B) in paragraph (2)(D), by inserting after 
                ``including new biological agents'' the following: ``and 
                new clinical interventions to improve the health of 
                those with muscular dystrophy''.
SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUSCULAR DYSTROPHY.

    The second sentence of section 317Q(b) of the Public Health Service 
Act (42 U.S.C. 247b-18(b)) is amended by inserting before the period the 
following: ``and, to the extent possible, ensure that data be 
representative of all affected populations and shared in a timely 
manner''.
SEC. 4. INFORMATION AND EDUCATION.

    Section 5(c) of the Muscular Dystrophy Community Assistance, 
Research and Education Amendments of 2001 (42 U.S.C. 247b-19(c)) is 
amended--
            (1) in paragraph (2)--
                    (A) by inserting ``for pediatric and adult patients, 
                including acute care considerations,'' after ``issuance 
                of care considerations'';
                    (B) by inserting ``various'' before ``other forms of 
                muscular dystrophy''; and
                    (C) by striking ``and'' at the end;
            (2) by redesignating paragraph (3) as paragraph (4);
            (3) by inserting after paragraph (2) the following:
            ``(3) in developing and updating care considerations under 
        paragraph (2), incorporate strategies specifically responding to 
        the findings of the national transitions survey of minority, 
        young adult, and adult communities of muscular dystrophy 
        patients; and''; and

[[Page 128 STAT. 1881]]

            (4) in paragraph (4), as redesignated, by inserting 
        ``various'' before ``other forms of muscular dystrophy''.

    Approved September 26, 2014.

LEGISLATIVE HISTORY--H.R. 594 (S. 315):
---------------------------------------------------------------------------

HOUSE REPORTS: No. 113-556 (Comm. on Energy and Commerce).
CONGRESSIONAL RECORD, Vol. 160 (2014):
            July 28, considered and passed House.
            Sept. 18, considered and passed Senate.

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