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S. 315 (113th): Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014


The text of the bill below is as of Feb 13, 2013 (Introduced).


II

113th CONGRESS

1st Session

S. 315

IN THE SENATE OF THE UNITED STATES

February 13, 2013

(for herself,Mr. Wicker,Mr. Sanders,Ms. Collins,Mr. Menendez,Mr. Isakson,Ms. Mikulski,Mr. Leahy,Mr. Lautenberg, andMr. Nelson) introduced the following bill; which was read twice and referred to theCommittee on Health, Education, Labor, and Pensions

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 (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)is amended—

(1)

insubsection (a)(1)

(A)

by strikingMuscoskeletaland insertingMusculoskeletal; and

(B)

by insertingBecker, myotonic, facioscapulohumeral muscular dystrophy (referred to in this section asFSHD), Congenital muscular dystrophy, Limb-girdle muscular dystrophy,afterDuchenne,;

(2)

insubsection (b)

(A)

inparagraph (2), by insertingcardiac and pulmonary function,afterimaging, genetics,; and

(B)

inparagraph (3), by insertingand sharing of dataafterregular communication;

(3)

insubsection (d)

(A)

inparagraph (2)

(i)

in the matter precedingsubparagraph (A), by striking15and inserting18; and

(ii)

insubparagraph (A), by strikingchildren with muscular dystrophy, such as theDepartment of Education and insertingchildren and adults with muscular dystrophy, such as theDepartment of Education, theSocial Security Administration, theUnited States Administration for Community Living ; and

(B)

inparagraph (4)(B), by inserting, and shall meet no less than two times per calendar yearbefore the period;

(4)

insubsection (e)

(A)

inparagraph (1)

(i)

in the matter precedingsubparagraph (A), by strikingthrough the national research institutesand insertingthrough the represented Federal agencies; and

(ii)

insubparagraph (A), by strikingand rehabilitative issues, including studies of the impact of such diseases in rural and underserved communitiesand insertingpublic 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; and

(B)

inparagraph (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)

insubsection (g), by strikingfor the various forms of muscular dystrophy by prioritizing the achievement of the goals related to this topic in the plan undersubsection (e)(1) and insertingand 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 theFood and Drug Administrationand supported by theNational Institutes of HealthandDepartment 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 of muscular dystrophy.

3.

Surveillance and research regarding muscular dystrophy

Section 317Q of the Public Health Service Act(42 U.S.C. 247b–18)is amended—

(1)

in the second sentence ofsubsection (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; and

(2)

insubsection (c), by adding at the end the following:TheSecretaryshall 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))is amended by adding at the end the following:

(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.

.