    [United States Statutes at Large, Volume 128, 113th Congress, 2nd Session]
    [From the U.S. Government Publishing Office, www.gpo.gov]

    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. <>

    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

    [[Page 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 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.