Bill > HR594

Introduced Session

Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014 - (Sec. 2) Amends the Public Health Service Act to revise the muscular dystrophy research program of the National Institutes of Health (NIH). Expands the range of 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. (Sec. 3) Requires the Secretary of Health and Human Services (HHS), in carrying out epidemiological activities regarding Duchenne and other forms of muscular dystrophy, to ensure that data are representative of all affected populations and shared in a timely manner. (Sec. 4) Amends the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 to authorize the Secretary to cooperate with professional organizations and the patient community in the development and issuance of care considerations, including acute care considerations, for pediatric and adult muscular dystrophy patients. Authorizes the Secretary, in developing and updating care considerations, to incorporate strategies specifically responding to the findings of the national transitions survey of minority, young adult, and adult communities of muscular dystrophy patients.

AI Summary

Committee Categories

Michael Burgess (R)*,  Robert Andrews (D),  Spencer Bachus (R),  Dan Benishek (R),  Sanford Bishop (D),  Timothy Bishop (D),  Julia Brownley (D),  Tony Cárdenas (D),  André Carson (D),  Jason Chaffetz (R),  Katherine Clark (D),  Yvette Clarke (D),  Mike Coffman (R),  Steve Cohen (D),  Gerry Connolly (D),  John Culberson (R),  Steve Daines (R),  Diana DeGette (D),  John Delaney (D),  Theodore Deutch (D),  Michael Doyle (D),  John Duncan (R),  Keith Ellison (D),  Eliot Engel (D),  William Enyart (D),  Stephen Fincher (R),  Michael Fitzpatrick (R),  J. Randy Forbes (R),  Lois Frankel (D),  Joe Garcia (D),  Cory Gardner (R),  Jim Gerlach (R),  Sam Graves (R),  Gene Green (D),  Tim Griffin (R),  Michael Grimm (R),  Brett Guthrie (R),  Ralph Hall (R),  Alcee Hastings (D),  Brian Higgins (D),  Jim Himes (D),  Rush Holt (D),  Richard Hudson (R),  Jared Huffman (D),  Steve Israel (D),  Sheila Jackson-Lee (D),  Sam Johnson (R),  Bill Keating (D),  Joseph Kennedy (D),  Derek Kilmer (D),  Ron Kind (D),  Peter King (R),  Ann Kirkpatrick (D),  Leonard Lance (R),  Rick Larsen (D),  Tom Latham (R),  Barbara Lee (D),  Daniel Lipinski (D),  David Loebsack (D),  Zoe Lofgren (D),  Nita Lowey (D),  Blaine Luetkemeyer (R),  Stephen Lynch (D),  Carolyn Maloney (D),  Ed Markey (D),  Jim Matheson (D),  Doris Matsui (D),  Carolyn McCarthy (D),  Betty McCollum (D),  Jim McGovern (D),  Cathy McMorris Rodgers (R),  Patrick Meehan (R),  John Mica (R),  Michael Michaud (D),  Jeff Miller (R),  James Moran (D),  Richard Nugent (R),  Beto O'Rourke (D),  Pete Olson (R),  William Owens (D),  Bill Pascrell (D),  Ed Perlmutter (D),  Collin Peterson (D),  Chellie Pingree (D),  Ted Poe (R),  Jared Polis (D),  Bill Posey (R),  Nick Rahall (D),  Charles Rangel (D),  James Renacci (R),  E. Scott Rigell (R),  Jon Runyan (R),  Bobby Rush (D),  Jan Schakowsky (D),  Allyson Schwartz (D),  F. James Sensenbrenner (R),  Pete Sessions (R),  Carol Shea-Porter (D),  Albio Sires (D),  Louise Slaughter (D),  Adam Smith (D),  Chris Smith (R),  Chris Stewart (R),  Steve Stivers (R),  John Tierney (D),  Paul Tonko (D),  Mike Turner (R),  Chris Van Hollen (D),  Peter Welch (D),  Joe Wilson (R),  Rob Wittman (R),  Frank Wolf (R),  Don Young (R), 

Became Public Law No: 113-166. (on 09/26/2014)