H.R. 594: Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013

Introduced:
Feb 08, 2013 (113th Congress, 2013–2015)
Sponsor:
Rep. Michael Burgess [R-TX26]
Status:
Referred to Committee

The bill’s title was written by the bill’s sponsor. H.R. stands for House of Representatives bill.

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Status

This bill was assigned to a congressional committee on February 8, 2013, which will consider it before possibly sending it on to the House or Senate as a whole.

Progress
Introduced Feb 08, 2013
Referred to Committee Feb 08, 2013
Reported by Committee ...
Passed House ...
Passed Senate ...
Signed by the President ...
Prognosis

22% chance of getting past committee.
5% chance of being enacted.

Only 11% of House bills made it past committee and only 3% were enacted in 2011–2013. [show factors | methodology]

Cosponsors
64 cosponsors (40D, 24R) (show)
Committees

House Energy and Commerce

↪ Health

The committee chair determines whether a bill will move past the committee stage.

Full Title

To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008.

Summary

No summaries available.

Text

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Last updated Feb 08, 2013.
6 pages

Primary Source

View on THOMAS (The Library of Congress)

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GovTrack’s Bill Summary

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Library of Congress Summary

The summary below was written by the Congressional Research Service, which is a nonpartisan division of the Library of Congress.

2/8/2013--Introduced.
Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 - Amends the Public Health Service Act to revise the muscular dystrophy research program of the National Institutes of Health (NIH). Multiplies the forms of muscular dystrophy included within the program.
Requires the research conducted through Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers to include cardiac and pulmonary function research.
Requires the Director of NIH to ensure the sharing of data between such centers.
Revises the composition of the Muscular Dystrophy Coordinating Committee (MDCC) to include the Social Security Administration and the United States Administration for Community Living. Requires the MDCC to meet at least two times per year.
Requires the MDCC Action Plan to provide for:
(1) health economic studies to demonstrate the cost-effectiveness of providing independent living resources and support to patients with various forms of muscular dystrophy,
(2) studies to determine optimal clinical care interventions for adults with various forms of muscular dystrophy, and
(3) the development of clinical interventions to improve the health of adults with various forms of muscular dystrophy.
Requires the MDCC to 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.
Requires the Secretary of Health and Human Services (HHS), in carrying out epidemiological activities regarding Duchenne and other forms of muscular dystrophies, to ensure that data from different racial and ethnic populations is captured and made publicly available to investigators conducting public or private research on muscular dystrophy.
Directs the Secretary to foster ongoing engagement and collaboration between the surveillance program and the research centers.
Amends the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 to authorize the Secretary to:
(1) update and disseminate widely existing Duchenne-Becker muscular dystrophy care considerations for pediatric patients, and
(2) develop and disseminate widely Duchenne-Becker muscular dystrophy considerations for adult patients and acute care considerations for all muscular dystrophy populations.
Directs that such care considerations should build upon existing efforts currently underway for specified forms of 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.

House Republican Conference Summary

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United States Code

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