MD-CARE Act Amendments become law

Capping a two-year advocacy campaign led by Parent Project Muscular Dystrophy (PPMD), today President Barack Obama signed the MD-CARE Act Amendments of 2014 into law, providing a significant victory to the Duchenne and broader muscular dystrophy communities.

The law makes a number of important updates to the original Muscular Dystrophy Community Assistance, Research and Education (MD-CARE Act) of 2001 and its 2008 amendment to ensure the landmark law keeps pace with the scientific, clinical, and care needs of today's patients and families.

"The MD-CARE Act has transformed the muscular dystrophy landscape," said PPMD Founding President and CEO Pat Furlong. "For those of us there in 2001, the journey over the past 14 years has been remarkable in terms of advancements in clinical care for people living with Duchenne and in innovative research breakthroughs. At the same time, our work is far from done, and this most recent set of amendments will ensure the law remains focused on making effective treatments, optimal care, and accessible resources a reality for our community."

"PPMD is particularly grateful to our champions and supporters in Congress. Nearly 150 Senators and Representatives cosponsored the amendments, and the legislation passed both chambers unanimously. None of this would have been possible without the tireless efforts of our champions – Congressmen Michael Burgess of Texas and Eliot Engel of New York and Senators Amy Klobuchar of Minnesota and Roger Wicker of Mississippi," Furlong said.

The amendments will strengthen the law's focus on research into cardiac and pulmonary issues, areas of critical importance to older patients with Duchenne and other forms of muscular dystrophy. It will also strengthen and enhance the operations of the Muscular Dystrophy Coordinating Committee (MDCC), improve disease surveillance and data gathering activities, will update existing care standards to inform clinical care, and will address much needed new resources for adults living with Duchenne.

"PPMD has been privileged to lead a multi-organization campaign to achieve this victory during our 20th anniversary year. Now that the MD-CARE Act amendments are law, we look forward to working with various federal agencies, Congress, and our partners to ensure this law is implemented swiftly, optimally, and effectively," Furlong said.