[Congressional Record (Bound Edition), Volume 154 (2008), Part 16]
[Senate]
[Page 22211]
[From the U.S. Government Publishing Office, www.gpo.gov]




 PAUL D. WELLSTONE MUSCULAR DYSTROPHY COMMUNITY ASSISTANCE, RESEARCH, 
                    AND EDUCATION AMENDMENTS OF 2008

  Mr. NELSON of Florida. I ask unanimous consent that the Senate 
proceed to immediate consideration of H.R. 5265, which is at the desk.
  The PRESIDING OFFICER. The clerk will report the bill by title.
  The legislative clerk read as follows:

       A bill (H.R. 5265) to amend the Public Health Service Act 
     to provide for research with respect to various forms of 
     muscular dystrophy, including Becker, congenital, distal, 
     Duchenne, Emery-Dreifuss facioscapulohumeral, limb-girdle, 
     myotonic, and oculopharyngeal, muscular dystrophies.

  There being no objection, the Senate proceeded to consider the bill.
  Mr. NELSON of Florida. I ask unanimous consent that the substitute 
amendment be agreed to; the bill, as amended, be read three times and 
passed; the motion to reconsider be laid upon the table with no 
intervening action or debate; and that any statements relating to the 
measure be printed in the Record.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The amendment (No. 5658) was agreed to, as follows:

              (Purpose: To provide a complete substitute)

       Strike all after the enacting clause and insert the 
     following:

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Paul D. Wellstone Muscular 
     Dystrophy Community Assistance, Research, and Education 
     Amendments of 2008''.

     SEC. 2. EXPANSION, INTENSIFICATION, AND COORDINATION OF 
                   ACTIVITIES OF NIH WITH RESPECT TO RESEARCH ON 
                   MUSCULAR DYSTROPHY.

       (a) Technical Correction.--Section 404E of the Public 
     Health Service Act (42 U.S.C. 283g) is amended by striking 
     subsection (f) (relating to reports to Congress) and 
     redesignating subsection (g) as subsection (f).
       (b) Amendments.--Section 404E of the Public Health Service 
     Act (42 U.S.C. 283g) is amended--
       (1) in subsection (a)(1), by inserting ``the National 
     Heart, Lung, and Blood Institute,'' after ``the Eunice 
     Kennedy Shriver National Institute of Child Health and Human 
     Development,'';
       (2) in subsection (b)(1), by adding at the end of the 
     following: ``Such centers of excellence shall be known as the 
     `Paul D. Wellstone Muscular Dystrophy Cooperative Research 
     Centers'.''; and
       (3) by adding at the end the following:
       ``(g) Clinical Research.--The Coordinating Committee may 
     evaluate the potential need to enhance the clinical research 
     infrastructure required to test emerging therapies 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).''.

     SEC. 3. DEVELOPMENT AND EXPANSION OF ACTIVITIES OF CDC WITH 
                   RESPECT TO EPIDEMIOLOGICAL RESEARCH ON MUSCULAR 
                   DYSTROPHY.

       Section 317Q of the Public Health Service Act (42 U.S.C. 
     247b-18) is amended--
       (1) by redesignating subsection (d) as subsection (f); and
       (2) by inserting after subsection (c) the following:
       ``(d) Data.--In carrying out this section, the Secretary 
     may ensure that any data on patients that is collected as 
     part of the Muscular Dystrophy STARnet (under a grant under 
     this section) is regularly updated to reflect changes in 
     patient condition over time.
       ``(e) Reports and Study.--
       ``(1) Annual report.--Not later than 18 months after the 
     date of the enactment of the Paul D. Wellstone Muscular 
     Dystrophy Community Assistance, Research, and Education 
     Amendments of 2008, and annually thereafter, the Director of 
     the Centers for Disease Control and Prevention shall submit 
     to the appropriate committees of the Congress a report--
       ``(A) concerning the activities carried out by MD STARnet 
     site funded under this section during the year for which the 
     report is prepared;
       ``(B) containing the data collected and findings derived 
     from the MD STARnet sites each fiscal year (as funded under a 
     grant under this section during fiscal years 2008 through 
     2012); and
       ``(C) that every 2 years outlines prospective data 
     collection objectives and strategies.
       ``(2) Tracking health outcomes.--The Secretary may provide 
     health outcome data on the health and survival of people with 
     muscular dystrophy.''.

     SEC. 4. INFORMATION AND EDUCATION.

       Section 5 of the Muscular Dystrophy Community Assistance, 
     Research and Education Amendments of 2001 (42 U.S.C. 247b-19) 
     is amended--
       (1) by redesignating subsection (c) as subsection (d); and
       (2) by inserting after subsection (b) the following:
       ``(c) Requirements.--In carrying out this section, the 
     Secretary may--
       ``(1) partner with leaders in the muscular dystrophy 
     patient community;
       ``(2) cooperate with professional organizations and the 
     patient community in the development and issuance of care 
     considerations for Duchenne-Becker muscular dystrophy, and 
     other forms of muscular dystrophy, and in periodic review and 
     updates, as appropriate; and
       ``(3) widely disseminate the Duchenne-Becker muscular 
     dystrophy and other forms of muscular dystrophy care 
     considerations as broadly as possible, including through 
     partnership opportunities with the muscular dystrophy patient 
     community.''.

  The amendment was ordered to be engrossed and the bill read a third 
time.
  The bill (H.R. 5625), as amended, was read the third time, and 
passed.

                          ____________________