[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):
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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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