[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. 315 Reported in Senate (RS)]
Calendar No. 478
113th CONGRESS
2d Session
S. 315
To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy
Community Assistance, Research, and Education Amendments of 2008.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
February 13, 2013
Ms. Klobuchar (for herself, Mr. Wicker, Mr. Sanders, Ms. Collins, Mr.
Menendez, Mr. Isakson, Ms. Mikulski, Mr. Leahy, Mr. Lautenberg, Mr.
Nelson, Mr. Schumer, Mr. Cochran, Mrs. Boxer, Mr. King, Mr. Bennet, Ms.
Stabenow, Mr. Blunt, Mrs. Shaheen, Mr. Markey, Mrs. Gillibrand, Mr.
Brown, Mr. Tester, Mr. Graham, Mr. Coons, Ms. Warren, Ms. Cantwell, Mr.
Pryor, Mr. Booker, Mr. Franken, and Mr. Harkin) introduced the
following bill; which was read twice and referred to the Committee on
Health, Education, Labor, and Pensions
July 23, 2014
Reported by Mr. Harkin, with an amendment and an amendment to the title
[Strike out all after the enacting clause and insert the part printed
in italic]
_______________________________________________________________________
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,
<DELETED>SECTION 1. SHORT TITLE.</DELETED>
<DELETED> This Act may be cited as the ``Paul D. Wellstone Muscular
Dystrophy Community Assistance, Research and Education (MD-CARE)
Amendments of 2013''.</DELETED>
<DELETED>SEC. 2. INITIATIVE THROUGH THE DIRECTOR OF THE NATIONAL
INSTITUTES OF HEALTH.</DELETED>
<DELETED> Section 404E of the Public Health Service Act (42 U.S.C.
283g) is amended--</DELETED>
<DELETED> (1) in subsection (a)(1)--</DELETED>
<DELETED> (A) by striking ``Muscoskeletal'' and
inserting ``Musculoskeletal''; and</DELETED>
<DELETED> (B) by inserting ``Becker, myotonic,
facioscapulohumeral muscular dystrophy (referred to in
this section as `FSHD'), Congenital muscular dystrophy,
Limb-girdle muscular dystrophy,'' after
``Duchenne,'';</DELETED>
<DELETED> (2) in subsection (b)--</DELETED>
<DELETED> (A) in paragraph (2), by inserting
``cardiac and pulmonary function,'' after ``imaging,
genetics,''; and</DELETED>
<DELETED> (B) in paragraph (3), by inserting ``and
sharing of data'' after ``regular
communication'';</DELETED>
<DELETED> (3) in subsection (d)--</DELETED>
<DELETED> (A) in paragraph (2)--</DELETED>
<DELETED> (i) in the matter preceding
subparagraph (A), by striking ``15'' and
inserting ``18''; and</DELETED>
<DELETED> (ii) in subparagraph (A), by
striking ``children with muscular dystrophy,
such as the Department of Education'' and
inserting ``children and adults with muscular
dystrophy, such as the Department of Education,
the Social Security Administration, the United
States Administration for Community Living'';
and</DELETED>
<DELETED> (B) in paragraph (4)(B), by inserting ``,
and shall meet no less than two times per calendar
year'' before the period;</DELETED>
<DELETED> (4) in subsection (e)--</DELETED>
<DELETED> (A) in paragraph (1)--</DELETED>
<DELETED> (i) in the matter preceding
subparagraph (A), by striking ``through the
national research institutes'' and inserting
``through the represented Federal agencies'';
and</DELETED>
<DELETED> (ii) in subparagraph (A), by
striking ``and rehabilitative issues, including
studies of the impact of such diseases in rural
and underserved communities'' and inserting
``public resources, and rehabilitative issues,
including studies of the impact of such
diseases in rural and underserved communities,
health economic 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''; and</DELETED>
<DELETED> (B) in paragraph (2), by adding at the end
the following:</DELETED>
<DELETED> ``(F) The development of clinical
interventions to improve the health of adults with
various forms of muscular dystrophy.''; and</DELETED>
<DELETED> (5) in subsection (g), by striking ``for the
various forms of muscular dystrophy by prioritizing the
achievement of the goals related to this topic in the plan
under subsection (e)(1)'' and inserting ``and shall, not later
than 6 months after the date of enactment of the Paul D.
Wellstone Muscular Dystrophy Community Assistance, Research and
Education (MD-CARE) Amendments of 2013, in coordination with
appropriate Federal agencies, including relevant offices within
the Food and Drug Administration and supported by the National
Institutes of Health and Department of Defense, develop a plan
to expedite the evaluation and approval of emerging therapies
and personalized medicines that have the potential to decrease
fatal disease progression across the various forms of muscular
dystrophy''.</DELETED>
<DELETED>SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUSCULAR
DYSTROPHY.</DELETED>
<DELETED> Section 317Q of the Public Health Service Act (42 U.S.C.
247b-18) is amended--</DELETED>
<DELETED> (1) in the second sentence of subsection (b), by
inserting before the period the following: ``and ensure that
the program captures data from different racial and ethnic
populations, and that such data are made publicly available to
investigators conducting public or private research on muscular
dystrophy''; and</DELETED>
<DELETED> (2) in subsection (c), by adding at the end the
following: ``The Secretary shall also foster ongoing engagement
and collaboration between the surveillance program and centers
of excellence.''.</DELETED>
<DELETED>SEC. 4. INFORMATION AND EDUCATION.</DELETED>
<DELETED> Section 5(c) of the Muscular Dystrophy Community
Assistance, Research and Education Amendments of 2001 (42 U.S.C. 247b-
19(c)) is amended by adding at the end the following:</DELETED>
<DELETED> ``(4) Update and widely disseminate existing
Duchenne-Becker muscular dystrophy care considerations for
pediatric patients, develop and widely disseminate Duchenne-
Becker muscular dystrophy care considerations for adult
patients, and develop and widely disseminate acute care
considerations for all muscular dystrophy populations. The care
considerations should build upon existing efforts currently
underway for congenital muscular dystrophy,
fascioscapulohumeral muscular dystrophy, limb-girdle muscular
dystrophy, and myotonic muscular dystrophy, and incorporate
strategies specifically responding to the findings of the
national transitions survey of minority, young adult and adult
communities of muscular dystrophy patients.''.</DELETED>
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 for other purposes.''.
Calendar No. 478
113th CONGRESS
2d Session
S. 315
_______________________________________________________________________
A BILL
To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy
Community Assistance, Research, and Education Amendments of 2008.
_______________________________________________________________________
July 23, 2014
Reported with an amendment and an amendment to the title