[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 594 Engrossed in House (EH)]

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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

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

            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 Federal research on 
              muscular dystrophy, and for other purposes.