S.315 - Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014
A bill to reauthorize and extend the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008.
|Version||Word Count||Changes From Previous Version||Percent Change|
|Introduced in Senate||861||n/a||n/a|
|Reported in Senate||1,608||63 Show Changes Hide Changes||67%|
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Ms. KLOBUCHAR (for herself, Mr. WICKER, Mr. SANDERS, Ms. COLLINS, Mr. MENENDEZ, Mr. ISAKSON, Ms. MIKULSKI, Mr. LEAHY, Mr. LAUTENBERG, and Mr. NELSOMr. NELSON, Mr. SCHUMER, Mr. COCHRAN, Mrs. BOXER, Mr. KING, Mr. BENNET, Ms. STABENOW, Mr. BLUNT, Mrs. SHAHEEN, Mr. MARKEY, Mrs. GILLIBRAND, Mr. BROWN, Mr. TESTER, Mr. GRAHAM, Mr. COONS, Ms. WARREN, Ms. CANTWELL, Mr. PRYOR, Mr. BOOKER, Mr. FRANKEN, and Mr. HARKIN) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and PensionsCommentsClose CommentsPermalink
SECTION 1. SHORT TITLE.
SEC. 2. INITIATIVE THROUGH THE DIRECTOR OF THE NATIONAL INSTITUTES OF HEALTH.
(B) by inserting ‘Becker, myotonic, facioscapulohumeral muscular dystrophy (referred to in this section as ‘FSHD’), Congenital muscular dystrophy, Lcongenital muscular dystrophy, limb-girdle muscular dystrophy,’ after ‘Duchenne,’; CommentsClose CommentsPermalink
(III) by striking ‘such as the Department of Education’ and inserting ‘children and adults with muscular dystrophy, such asincluding the Department of Education, and the Social Security Administration, the United States Administration for Community Living’; and CommentsClose CommentsPermalink
(i) in the matter preceding subparagraph (A), by striking ‘through the national research institutes’ and inserting ‘through the agencies represented Federal agencieson the Coordinating Committee pursuant to subsection (d)(2)(A)’; and CommentsClose CommentsPermalink
(ii) in subparagraph (A), by striking ‘and rehabilitative issues, including studies of the impact of such diseases in rural and underserved communities’ and inserting-- CommentsClose CommentsPermalink
(I) by inserting ‘public resources, services,’ before ‘and rehabilitative issues, including studies of the impact of such diseases in rural and underserved communities, health economic’; and CommentsClose CommentsPermalink
(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’; and (B) in paragraph (2), by adding at the end the following:
(B) in paragraph (2), by adding at the end the following:‘(F) The development of after ‘including studies of the impact of such diseases in rural and underserved communities’; and CommentsClose CommentsPermalink
(B) in paragraph (2)(D), by inserting after ‘including new biological agents’ the following: ‘and new 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 inserting ‘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, in coordination with appropriate Federal agencies, including relevant offices within the Food and Drug Administration and supported by the National Institutes of Health and Department of Defense, 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 ofthose with muscular dystrophy’. CommentsClose CommentsPermalink
SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUSCULAR DYSTROPHY.
Section 317QThe second sentence of section 317Q(b) of the Public Health Service Act (
SEC. 4. INFORMATION AND EDUCATION.
Section 5(c) of the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 (
(A) by inserting ‘for pediatric and adult patients, and develop and widely disseminateincluding acute care considerations for all muscular dystrophy populations. The,’ after ‘issuance of care considerations’; CommentsClose CommentsPermalink
‘(3) in developing and updating care considerations should build upon existing efforts currently underway for congenital muscular dystrophy, fascioscapulohumeral muscular dystrophy, limb-girdle muscular dystrophy, and myotonic muscular dystrophy, andunder 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 CommentsClose CommentsPermalink