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2014- Updating the MD-CARE Act Amendments

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: 

  • Expanding and sustaining research efforts across the muscular dystrophies including an expanded focus into cardiac and pulmonary functioning and into the health care needs of adults with muscular dystrophies; 
  • Updating existing Duchenne-Becker care standards, developing for the first time care standards for adults living with Duchenne and developing and disseminating care standards for those with other forms of muscular dystrophy; 
  • Intensifying surveillance of tracking of all the muscular dystrophies and ensuring that this valuable data informs the biomedical research agenda; and 
  • Ensuring that when potential therapies are submitted for evaluation they are reviewed as quickly as possible.

The Muscular Dystrophy CARE Act Amendments of 2014 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 amendments, 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.

Learn how you can help make this happen. 

About Original MD-CARE Act

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 lawby 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:

  • NIH would support Centers of Excellence focused on muscular dystrophy. These Centers would have several components – basic research, extensive collaboration, shared resources, as well as, a clinical study.
  • CDC would establish programs focused on Duchenne muscular dystrophy. This would include improving diagnosis, data collection, and care considerations. 
  • NIH and related government agencies would convene the research and clinical community to develop a research plan.
  • NIH and related government agencies would establish a steering committee to oversee progress (MDCC).

View the MD CARE Act (PDF)

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.

 

Related links

MD-CARE Act (download)
Press Release: President Bush Signs Bill Into Law (12/21/01)
Press Release: Reauthorization of Bill Signed into Law (10/9/08)
MD Action Plan (download)

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