110th Congress

Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments Act, 2008

P.L. 110-361 (H.R. 5265)

Impact of Public Law

P.L. 110-361 names in statute the Muscular Dystrophy Centers of Excellence as the Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers; names the National Heart, Lung, and Blood Institute as a member of the Muscular Dystrophy Coordinating Committee (MDCC); and authorizes MDCC to give special consideration to enhancing the clinical research infrastructure to test emerging therapies for the various forms of muscular dystrophy (MD).

Regarding programs affecting the Centers for Disease Control and Prevention (CDC), the Secretary of Health and Human Services would be required to ensure that any data on patients that are collected as part of the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) grant program are regularly updated to reflect changes in patient condition.  No later than 18 months after enactment, the Director of CDC is required to submit an annual report on the MD STARnet program.  Finally, the Secretary is authorized to provide health outcome data on the health and survival of people with MD.

In carrying out the information and education program required by section 5 of the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 (P.L. 107-84), the Secretary is authorized to partner with leaders in the MD patient community, cooperate with professional organizations and patient communities in the development and issuance of care considerations for Duchenne-Becker MD and other forms of MD, and disseminate the Duchenne-Becker MD and other forms of MD care considerations as broadly as possible. 

Legislative History

H.R. 5265 was introduced by Representative Eliot Engel (D-NY) on February 7, 2008, and was referred to the House Committee on Energy and Commerce.  On September 17, the bill was amended and ordered to be reported out by a voice vote.  On September 24, the bill was passed by the House by a vote of 418 to 2.  On September 27, the bill was passed by the Senate by unanimous consent.  On October 8, President Bush signed H.R. 5265 into law as P.L. 110-361.

S. 2618 the companion measure, was introduced by Senator Amy Klobuchar (D-MN) on February 8, 2008, and was referred to the Senate Committee on Health, Education, Labor and Pensions. No further action has occurred on this legislation.

October 2008