Short title

This Act may be cited as the

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

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.

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.

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.