---
kind: "diff"
citation: "H.R. 594"
bill: "113-hr-594"
heading: "Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014"
from: "ih"
from_label: "Introduced in House"
to: "rh"
to_label: "Reported in House"
sections_amended: 4
sections_added: 0
sections_removed: 0
url: "https://uscodex.org/bills/113/hr/594/changes/rh"
---
# H.R. 594 — what changed
H.R. 594, Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014 — 4 sections amended between Introduced in House and Reported in House.
Edits are marked `struck` and `inserted`.
## Section 1 Short title
- This Act may be cited as the “Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013”.2014”.
## Sec. 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, myotonic, facioscapulohumeral muscular dystrophy (referred to in this section as “FSHD”), Congenital congenital muscular dystrophy, Limb-girdle limb-girdle muscular dystrophy,” after “Duchenne,”;
- (2) in subsection (b)—
- (A) in paragraph (2), by inserting “cardiac and pulmonary function,” after “imaging, genetics,”; and(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), by striking “children with muscular dystrophy, such as the Department of Education” and inserting “children and adults with muscular dystrophy, such as the Department of Education, the Social Security Administration, the United States Administration for Community Living”; and(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 “, and but shall meet no less fewer than two times per calendar year” before the period;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), by striking “and rehabilitative issues, including studies of the impact of such diseases in rural and underserved communities” and inserting “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”; and(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), (2)(D), by adding at inserting after “including new biological agents” the end following: “and new clinical interventions to improve the following:health of those with muscular dystrophy”.
- “(F) The development of clinical interventions to improve the health of adults with various forms of muscular dystrophy.”
- (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 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 of muscular dystrophy”.
## Sec. 3 Surveillance and research regarding muscular dystrophy
- Section 317Q The second sentence of section 317Q(b) of the Public Health Service Act (42 U.S.C. 247b–18) 247b–18(b)) is amended—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”.
- (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”; and
- (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.”.
## Sec. 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: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”
- (4) in paragraph (4), as redesignated, by inserting “various” before “other forms of muscular dystrophy”.
- “(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.”