MD-CARE Passes

by Annie Kennedy on November 1, 2008 - 10:07am

QUEST Vol. 15, No. 6

As the 110th Congress drew to a close this fall, a tremendous victory emerged for people with muscular dystrophy: the reauthorization of the MD-CARE Act.

The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008 updates the 2001 law that coordinates and focuses federal research on different forms of muscular dystrophy, collects epidemiological (disease pattern) data and emphasizes therapy development.

The new amendments add an expanded focus on tracking disease progression and an emphasis on moving significant lab findings into clinical trials.

The MDA community, along with other sister organizations, lobbied hard for reauthorization of the MD-CARE Act. The reauthorized act continues to support:

  • the ongoing work of the National Institutes of Health (NIH) muscular dystrophy research centers of excellence, which work independently and collaboratively on clinical research projects;
  • the Muscular Dystrophy Coordinating Committee, which works to expand and intensify MD research efforts; and
  • MD STARnet, a data collection system that studies patterns of disease development.

In addition, newly passed amendments authorize:

  • enhancing the clinical and translational research infrastructure to better speed the development of promising therapies;
  • using MD STARnet to better track health outcomes and reflect patients’ changing conditions over time;
  • expanding the NIH centers to include the National Heart, Lung, and Blood Institute; and
  • naming the research centers of excellence after Paul D. Wellstone, the late Minnesota senator who introduced the first MD-CARE Act legislation.

I would like to thank all members of the MDA community who reached out to their elected officials and urged that they support the reauthorization of the MD-CARE Act. We all owe a debt of gratitude to the bill sponsors whose heroic efforts made this triumph possible: Representatives Eliot Engel (D-N.Y.) and Michael Burgess (R-Texas) and Senators Amy Klobuchar (D-Minn.) and Johnny Isakson (R-Ga.).

This bill is a true ‘force-multiplier’ and ensures that we can expand upon our existing momentum as we move toward therapies and cures for MD –- what a tremendous end-of-the-year gift to Americans affected by muscular dystrophy!

Annie Kennedy is MDA’s vice president for Advocacy.

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