IB Union Calendar No. 416 113th CONGRESS 2d Session H. R. 594 [Report No. 113–556] 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. Cárdenas , 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.

1. Short title This Act may be cited as the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014 . 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 . 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 . 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. .

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