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

113th CONGRESS
  1st Session
                                H. R. 594

  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

_______________________________________________________________________

                                 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 2013''.

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 muscular dystrophy, 
                Limb-girdle muscular dystrophy,'' after ``Duchenne,'';
            (2) in subsection (b)--
                    (A) in paragraph (2), by inserting ``cardiac and 
                pulmonary function,'' after ``imaging, genetics,''; 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
                    (B) in paragraph (4)(B), by inserting ``, and shall 
                meet no less than two times per calendar year'' before 
                the period;
            (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
                    (B) in paragraph (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) 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 of the Public Health Service Act (42 U.S.C. 247b-18) 
is amended--
            (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:
            ``(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.''.
                                 <all>
```