II
113th CONGRESS
1st Session
S. 315
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, andMr. Nelson) introduced the following bill; which was read twice and referred to theCommittee on Health, Education, Labor, and Pensions
A BILL
To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008.
Short title
This Act may be cited as
the
Paul D. Wellstone Muscular
Dystrophy Community Assistance, Research and Education (MD–CARE) Amendments of
2013
.
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—
insubsection (a)(1)—
by strikingMuscoskeletal
and insertingMusculoskeletal
;
and
by insertingBecker, myotonic, facioscapulohumeral muscular dystrophy (referred to in
this section as
afterFSHD
), Congenital muscular dystrophy,
Limb-girdle muscular dystrophy,Duchenne,
;
insubsection (b)—
inparagraph (2),
by insertingcardiac and pulmonary function,
afterimaging, genetics,
; and
inparagraph (3),
by insertingand sharing of data
afterregular
communication
;
insubsection (d)—
inparagraph (2)—
in
the matter precedingsubparagraph (A), by striking15
and
inserting18
; and
insubparagraph (A), by strikingchildren with muscular dystrophy, such as
theDepartment of Education
and insertingchildren and adults
with muscular dystrophy, such as theDepartment of Education, theSocial
Security Administration, theUnited States Administration for Community
Living
; and
inparagraph
(4)(B), by inserting, and shall meet no less than two times per
calendar year
before the period;
insubsection (e)—
inparagraph (1)—
in
the matter precedingsubparagraph (A), by strikingthrough the national
research institutes
and insertingthrough the represented
Federal agencies
; and
insubparagraph (A), by strikingand rehabilitative issues, including
studies of the impact of such diseases in rural and underserved
communities
and insertingpublic 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
inparagraph (2), by adding at the end the following:
The development of clinical interventions to improve the health of adults with various forms of muscular dystrophy.
; and
insubsection
(g), by strikingfor the various forms of muscular dystrophy by
prioritizing the achievement of the goals related to this topic in the plan
undersubsection (e)(1)
and insertingand 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 theFood and Drug Administrationand supported by theNational
Institutes of HealthandDepartment 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
.
Surveillance and research regarding muscular dystrophy
Section 317Q of the Public Health Service Act(42 U.S.C. 247b–18)is amended—
in the second
sentence ofsubsection (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
insubsection (c),
by adding at the end the following:TheSecretaryshall also foster
ongoing engagement and collaboration between the surveillance program and
centers of excellence.
.
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 by adding at the end the following:
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.
.
