Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014

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 (MD–CARE) Amendments of 2013 2. Initiative through the Director of the National Institutes of Health Section 404E of the Public Health Service Act ( 42 U.S.C. 283g (1) in subsection (a)(1)— (A) by striking Muscoskeletal Musculoskeletal (B) by inserting Becker, myotonic, facioscapulohumeral muscular dystrophy (referred to in this section as FSHD Duchenne, (2) in subsection (b)— (A) in paragraph (2), by inserting cardiac and pulmonary function, imaging, genetics, (B) in paragraph (3), by inserting and sharing of data regular communication (3) in subsection (d)— (A) in paragraph (2)— (i) in the matter preceding subparagraph (A), by striking 15 18 (ii) in subparagraph (A), by striking children with muscular dystrophy, such as the Department of Education children and adults with muscular dystrophy, such as the Department of Education, the Social Security Administration, the United States Administration for Community Living (B) in paragraph (4)(B), by inserting , and shall meet no less than two times per calendar year (4) in subsection (e)— (A) in paragraph (1)— (i) in the matter preceding subparagraph (A), by striking through the national research institutes through the represented Federal agencies (ii) in subparagraph (A), by striking and rehabilitative issues, including studies of the impact of such diseases in rural and underserved communities 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 (B) in paragraph (2), by adding at the end the following: (F) The development of clinical interventions to improve the health of adults with various forms of muscular dystrophy. ; and (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 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 3. Surveillance and research regarding muscular dystrophy Section 317Q of the Public Health Service Act ( 42 U.S.C. 247b–18 (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 (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. 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) (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. . 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 (1) in subsection (a)(1)— (A) by striking Muscoskeletal Musculoskeletal (B) by inserting Becker, congenital muscular dystrophy, limb-girdle muscular dystrophy, Duchenne, (2) in subsection (b)— (A) in paragraph (2)— (i) by striking genetics, (ii) by inserting cardiac and pulmonary function, and imaging, (B) in paragraph (3), by inserting and sharing of data regular communication (3) in subsection (d)— (A) in paragraph (2)— (i) in the matter preceding subparagraph (A), by striking 15 18 (ii) in subparagraph (A)— (I) by striking and the Food and Drug Administration , the Food and Drug Administration, and the Administration for Community Living (II) by inserting and adults children (III) by striking such as the Department of Education including the Department of Education and the Social Security Administration (B) in paragraph (4)(B), by inserting , but shall meet no fewer than two times per calendar year (4) in subsection (e)— (A) in paragraph (1)— (i) in the matter preceding subparagraph (A), by striking through the national research institutes through the agencies represented on the Coordinating Committee pursuant to subsection (d)(2)(A) (ii) in subparagraph (A)— (I) by inserting public services, and rehabilitative issues (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 including studies of the impact of such diseases in rural and underserved communities (B) in paragraph (2)(D), by inserting after including new biological agents 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) 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) (1) in paragraph (2)— (A) by inserting for pediatric and adult patients, including acute care considerations, issuance of care considerations (B) by inserting various other forms of muscular dystrophy (C) by striking and (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 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. July 23, 2014 Reported with an amendment and an amendment to the title

Summary: 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.