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A pivotal moment in the history of Duchenne Muscular Dystrophy occurred when The Muscular Dystrophy Community Assistance, Research, and Education (MD-CARE) Act was signed into law by President George W. Bush in December of 2001. This was the first legislation in the history of the US Congress that focused on muscular dystrophy. The bipartisan MD-CARE Act provides important authority and direction for muscular dystrophy research, including Duchenne.
This legislation included 4 major points:
In 2006, the MD-CARE Act expired. The community rallied in support of re-authorization and Congress agreed. Considerable progress had been made in the Duchenne arena, and Congress agreed it was important to continue the work that had been started. In 2008, the MD-CARE Act was re-authorized.
As stipulated in the legislation, the Muscular Dystrophy Coordinating Committee (MDCC) was to oversee the creation of an MD Action Plan (PDF), the plan was completed in 2005. The help inform the MD Action plan update, PPMD held a "One Voice Summit" in early 2011 that emphasized the patient voice and produced the following recommendations to the Committee.
Since passage of the MD-CARE Act, $463 million has been leveraged for muscular dystrophy research and education programs, and of that, $192 million being Duchenne specific.
2014- Reauthorizing the MD-CARE Act
The MD CARE Act is a shining legislative success, exemplifying what can be achieved through genuine public-private partnerships to transform the biomedical research and drug discovery landscape. So many critical programs were made possible because of the bill and follow on reauthorization. But while much has been accomplished, more remains undone and in need of federal support to continue driving and leveraging non-federal funding. Some of the major challenges today include:
The Muscular Dystrophy CARE Reauthorization Act will address these issues to ensure the law continues driving toward improved outcomes for all Americans impacted by the muscular dystrophies and to achieving the scientific discoveries and breakthroughs necessary to develop treatments and therapies to increase patient lifespan and to enhance quality of life. By enacting the reauthorization bill, Congress will ensure this landmark law retains its focus on the most pressing issues, drivers greater levels of coordination and collaboration, and encourages continued public-private partnership.