About This Legislation:

Congress enacted the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 (MD-CARE Act) to coordinate and focus federal research on muscular dystrophy, to develop therapies, and to develop epidemiologic data. The House of Representatives approved the MD-CARE Act without opposition; the Senate approved the legislation by unanimous consent; and President George W. Bush signed the bill into law (Public Law 107-84) on December 18, 2001.

The 2001 MD CARE Act has provided critical authority and direction for MD research:

• Six cooperative MD research Centers of Excellence were established by the National Institutes of Health (NIH). The centers work individually and collaboratively. Each has both basic and clinical research projects, and one or more core facilities to support them. Centers must also make core resources or services available to the national muscular dystrophy research community. The Muscular Dystrophy Association (MDA) provided $1.5 million to each of the first three centers, to ensure that their critical research could begin as quickly as possible.
• The public-private Muscular Dystrophy Coordinating Committee, established under the bill, has worked to expand, intensify and coordinate research activities related to muscular dystrophy.
• The MD STARnet (the Muscular Dystrophy Surveillance Tracking and Research Network) is a data collection and surveillance mechanism aimed at epidemiological research and is overseen by the Centers for Disease Control (CDC).

This reauthorization bill:

• Supports the continued work of the National Institutes of Health (NIH) muscular dystrophy research centers of excellence and expands the number of NIH institutes involved to include the National Heart, Lung, Blood Institute.
• Officially names the Centers of Excellence, the Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers.
• Emphasizes the need for an enhanced clinical and translational research infrastructure, as promising therapies emerge.
• Ensures MD STARnet data is regularly updated to reflect patients’ changing conditions over time and includes tracking of health outcomes.
• Encourages the Secretary of Health and Human Services (HHS) to work with medical and patient organizations to develop standards of care for Duchenne and Becker muscular dystrophy, and to replicate the methods used in developing these care considerations to include other muscular dystrophies.

Legislative Support:

The House bill was sponsored by Representative Eliot Engel (D-NY 17th) and had 112 cosponsors including 85 Democrats and 27 Republicans. Senator Amy Klobuchar (D-MN) sponsored the Senate bill which had 25 cosponsors including 15 Democrats, 2 Independents, and 8 Republicans.

Status:

This bill passed Congress and is law.

MDA on the Record:

Dear Colleague Letter in House of Representatives

Dear Colleague Letter in the Senate

Statement from MDA’s National Chairman, Jerry Lewis, on the introduction of the MD CARE Act Reauthorization