MD-CARE Act on Muscular Dystrophy Research Passes in the Senate

The MD-CARE Act, a piece of legislation designed to accelerate research and provide infrastructure needed for the development of new treatments to treat all nine forms of muscular dystrophy, has passed in the Senate by unanimous consent on September 18th. The Muscular Dystrophy Association (MDA), which has been a major advocate for passage of the act, as well as the muscular dystrophy community are now celebrating and waiting for the President to sign it, the last step that is missing for its final approval.

The MDA has been working for more than a decade on the Muscular Dystrophy Community Assistance, Research and Education Amendments Act (MD-CARE Act), which was passed by the House in July. The association has been dedicated to improving the legislation for muscular dystrophy, and have worked with a community of advocates on Capitol Hill as well as elected officials in localities to make an effort to keep the MD-Care Act visible to the public.

The association believes that by increasing social awareness and attention to muscular dystrophy and legislation for fighting the disease, policymakers will also be aware of its political value, which in turn will spur on increased governmental support. MDA believes that the approval of the MD-Care Act and increased federal support is key to accelerating the efforts to improve treatments for muscular dystrophy. The Act notes cardiac and pulmonary research as specific special interests, and focuses on resources for adults living with muscular dystrophy.

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“Together, our combined voices and tireless fight helped ensure the MD-CARE Act passed in the Senate this week and in the House earlier this summer,” said MDA president and CEO, Steven M. Derks. “MDA salutes our Congressional champions, Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN) and Representatives Michael Burgess (R-TX) and Eliot Engel (D-NY), as well as their extraordinary staffs for their vision and leadership.”

The MD-CARE Act had already passed in 2001 and was reauthorized in 2008. Since that time, research into the disease has become more and more common, as muscular dystrophy has gained increased attention from the scientific community. As a result, many clinical trials have been conducted, and improvements in patients’ quality of life have been made. However, there is still no cure for the disease, and the current available treatments are only able to slow its progression.

“The passage of the MD-CARE Act in 2001 was a game-changer for our muscular dystrophy community,” said Derks. “Now, together with our advocates, we have ensured the lifesaving research and clinical momentum put in place through this bill remains strong and focused. We thank the community for being the strength that fuels MDA’s mission to save and improve the lives of people fighting muscle disease.”

In addition to its work among lawmakers and advocates, as well as in promoting public policy efforts that benefit individuals and families living with muscle diseases, the MDA is also dedicated to improving the quality of life of patients suffering from  muscular dystrophy, amyotrophic lateral sclerosis (ALS), and other neuromuscular diseases, through the support of research worldwide, providing comprehensive health care services and support to MDA families in the United States, and by rallying communities to fight back through advocacy, fundraising, and local engagement.