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[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 594 Reported in House (RH)]

                                                 Union Calendar No. 416
113th CONGRESS
  2d Session
                                H. R. 594

                          [Report No. 113-556]

  To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy 
   Community Assistance, Research, and Education Amendments of 2008.

_______________________________________________________________________

                    IN THE HOUSE OF REPRESENTATIVES

                            February 8, 2013

Mr. Burgess (for himself and Mr. Engel) introduced the following bill; 
       which was referred to the Committee on Energy and Commerce

                             July 24, 2014

Additional sponsors: Ms. Schwartz, Mr. Hall, Mr. Peterson, Ms. Matsui, 
    Mrs. Carolyn B. Maloney of New York, Mr. Bishop of Georgia, Mr. 
   Andrews, Mr. Rush, Mr. Runyan, Mr. Graves of Missouri, Mr. Poe of 
Texas, Mr. Sessions, Mr. King of New York, Ms. Shea-Porter, Mr. Owens, 
   Mr. Welch, Mr. Bachus, Mrs. Lowey, Mr. Markey, Ms. Slaughter, Ms. 
  Brownley of California, Mr. Holt, Mr. Ellison, Mr. Kilmer, Mr. Gene 
 Green of Texas, Mr. Loebsack, Mr. Luetkemeyer, Mr. Tierney, Mr. Smith 
  of Washington, Mr. Sam Johnson of Texas, Mr. Wittman, Mr. Kind, Mr. 
   Gerlach, Mr. Polis, Mr. Michaud, Mr. Perlmutter, Ms. DeGette, Mr. 
Gardner, Mr. Lipinski, Mr. Coffman, Mr. Guthrie, Mr. Rigell, Mr. Young 
   of Alaska, Ms. McCollum, Mr. Renacci, Mr. Forbes, Mr. Himes, Mr. 
Higgins, Mr. Hudson, Mr. O'Rourke, Mr. Griffin of Arkansas, Ms. Pingree 
  of Maine, Ms. Schakowsky, Mr. Rangel, Mr. Olson, Mr. Bishop of New 
   York, Ms. Clarke of New York, Mr. Culberson, Mr. Van Hollen, Mr. 
 Huffman, Ms. Jackson Lee, Mr. Posey, Mr. Fitzpatrick, Mr. Tonko, Mr. 
    Cohen, Mr. Matheson, Mrs. McCarthy of New York, Mr. Enyart, Mr. 
 Stivers, Mr. Duncan of Tennessee, Ms. Lofgren, Ms. Lee of California, 
 Mrs. Kirkpatrick, Mr. Israel, Mr. Cardenas, Mr. Larsen of Washington, 
Mr. Meehan, Mr. Connolly, Mr. Keating, Mr. Sires, Mr. Lance, Ms. Clark 
  of Massachusetts, Mr. Doyle, Mr. Fincher, Mr. Wolf, Mr. Daines, Mr. 
 Sensenbrenner, Mr. Carson of Indiana, Mr. Pascrell, Mr. Kennedy, Mr. 
 Moran, Mr. Lynch, Mr. Garcia, Ms. Frankel of Florida, Mr. Nugent, Mr. 
  Wilson of South Carolina, Mr. Delaney, Mr. Smith of New Jersey, Mr. 
 Deutch, Mr. Rahall, Mr. Turner, Mr. Benishek, Mrs. McMorris Rodgers, 
 Mr. Grimm, Mr. Hastings of Florida, Mr. Bishop of Utah, Mr. McGovern, 
  Mr. Chaffetz, Mr. Mica, Mr. Stewart, Mr. Miller of Florida, and Mr. 
                                 Latham

                             July 24, 2014

Reported with amendments, committed to the Committee of the Whole House 
          on the State of the Union, and ordered to be printed
 [Strike out all after the enacting clause and insert the part printed 
                               in italic]
    [For text of introduced bill, see copy of bill as introduced on 
                           February 8, 2013]

_______________________________________________________________________

                                 A BILL

 
  To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy 
   Community Assistance, Research, and Education Amendments of 2008.

 

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Paul D. Wellstone Muscular Dystrophy 
Community Assistance, Research and Education Amendments of 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, 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''.

SEC. 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)) 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''.

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--
            (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''.
            Amend the title so as to read: ``A bill to amend the Public 
        Health Service Act relating to Federal research on muscular 
        dystrophy, and other purposes.''.
                                                 Union Calendar No. 416

113th CONGRESS

  2d Session

                               H. R. 594

                          [Report No. 113-556]

_______________________________________________________________________

                                 A BILL

  To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy 
   Community Assistance, Research, and Education Amendments of 2008.

_______________________________________________________________________

                             July 24, 2014

Reported with amendments, committed to the Committee of the Whole House 
          on the State of the Union, and ordered to be printed
```