[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 594 Reported in House (RH)]
Union Calendar No. 416
113th CONGRESS
2d Session
H. R. 594
[Report No. 113-556]
To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy
Community Assistance, Research, and Education Amendments of 2008.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
February 8, 2013
Mr. Burgess (for himself and Mr. Engel) introduced the following bill;
which was referred to the Committee on Energy and Commerce
July 24, 2014
Additional sponsors: Ms. Schwartz, Mr. Hall, Mr. Peterson, Ms. Matsui,
Mrs. Carolyn B. Maloney of New York, Mr. Bishop of Georgia, Mr.
Andrews, Mr. Rush, Mr. Runyan, Mr. Graves of Missouri, Mr. Poe of
Texas, Mr. Sessions, Mr. King of New York, Ms. Shea-Porter, Mr. Owens,
Mr. Welch, Mr. Bachus, Mrs. Lowey, Mr. Markey, Ms. Slaughter, Ms.
Brownley of California, Mr. Holt, Mr. Ellison, Mr. Kilmer, Mr. Gene
Green of Texas, Mr. Loebsack, Mr. Luetkemeyer, Mr. Tierney, Mr. Smith
of Washington, Mr. Sam Johnson of Texas, Mr. Wittman, Mr. Kind, Mr.
Gerlach, Mr. Polis, Mr. Michaud, Mr. Perlmutter, Ms. DeGette, Mr.
Gardner, Mr. Lipinski, Mr. Coffman, Mr. Guthrie, Mr. Rigell, Mr. Young
of Alaska, Ms. McCollum, Mr. Renacci, Mr. Forbes, Mr. Himes, Mr.
Higgins, Mr. Hudson, Mr. O'Rourke, Mr. Griffin of Arkansas, Ms. Pingree
of Maine, Ms. Schakowsky, Mr. Rangel, Mr. Olson, Mr. Bishop of New
York, Ms. Clarke of New York, Mr. Culberson, Mr. Van Hollen, Mr.
Huffman, Ms. Jackson Lee, Mr. Posey, Mr. Fitzpatrick, Mr. Tonko, Mr.
Cohen, Mr. Matheson, Mrs. McCarthy of New York, Mr. Enyart, Mr.
Stivers, Mr. Duncan of Tennessee, Ms. Lofgren, Ms. Lee of California,
Mrs. Kirkpatrick, Mr. Israel, Mr. Cardenas, Mr. Larsen of Washington,
Mr. Meehan, Mr. Connolly, Mr. Keating, Mr. Sires, Mr. Lance, Ms. Clark
of Massachusetts, Mr. Doyle, Mr. Fincher, Mr. Wolf, Mr. Daines, Mr.
Sensenbrenner, Mr. Carson of Indiana, Mr. Pascrell, Mr. Kennedy, Mr.
Moran, Mr. Lynch, Mr. Garcia, Ms. Frankel of Florida, Mr. Nugent, Mr.
Wilson of South Carolina, Mr. Delaney, Mr. Smith of New Jersey, Mr.
Deutch, Mr. Rahall, Mr. Turner, Mr. Benishek, Mrs. McMorris Rodgers,
Mr. Grimm, Mr. Hastings of Florida, Mr. Bishop of Utah, Mr. McGovern,
Mr. Chaffetz, Mr. Mica, Mr. Stewart, Mr. Miller of Florida, and Mr.
Latham
July 24, 2014
Reported with amendments, committed to the Committee of the Whole House
on the State of the Union, and ordered to be printed
[Strike out all after the enacting clause and insert the part printed
in italic]
[For text of introduced bill, see copy of bill as introduced on
February 8, 2013]
_______________________________________________________________________
A BILL
To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy
Community Assistance, Research, and Education Amendments of 2008.
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''.
Amend the title so as to read: ``A bill to amend the Public
Health Service Act relating to Federal research on muscular
dystrophy, and other purposes.''.
Union Calendar No. 416
113th CONGRESS
2d Session
H. R. 594
[Report No. 113-556]
_______________________________________________________________________
A BILL
To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy
Community Assistance, Research, and Education Amendments of 2008.
_______________________________________________________________________
July 24, 2014
Reported with amendments, committed to the Committee of the Whole House
on the State of the Union, and ordered to be printed