PPMD Hails House Passage of MD-CARE Act Amendments

Bill will help ensure law focuses adequately on needs of adults with Duchenne and other forms of muscular dystrophy

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Parent Project Muscular Dystrophy (PPMD)

Jul 29, 2014, 10:03 ET

WASHINGTON, July 29, 2014 /PRNewswire-USNewswire/ -- The House of Representatives today approved legislation to update the landmark Muscular Dystrophy Community Assistance, Research, and Education (MD-CARE) Act so the law continues getting results for all patients impacted by Duchenne and other forms of muscular dystrophy.

The House approved the bill, H.R. 594, sponsored by Congressman Dr. Michael Burgess of Texas and Eliot Engel of New York, by unanimous voice vote. It must now clear the Senate to be signed into law by President Obama. Once that occurs, it will update the MD-CARE Act, which was enacted in 2001 and last updated in 2008.

"Today's action is another significant milestone for all of us in the Duchenne and broader muscular dystrophy communities," said Pat Furlong, Founding President and CEO of Parent Project Muscular Dystrophy, the leading advocacy organization fighting to end Duchenne. "With this bill, we will ensure the MD-CARE Act keeps pace with the scientific and clinical needs of today and tomorrow, particularly for those with Duchenne and other forms of muscular dystrophy who are now living into adulthood."

"We commend Congressmen Burgess and Engel for their tremendous leadership on behalf of all families impacted by muscular dystrophy, and I thank Energy & Commerce Committee Chairman Fred Upton and Ranking Member Henry Waxman, and Health Subcommittee Chairman Joe Pitts and Ranking Member Frank Pallone for moving this bill through the committee," Furlong added.

The legislation will, among other things, ensure cardiac and pulmonary issues receive the research attention they need, update and enhance the Centers for Disease Control and Prevention's muscular dystrophy surveillance efforts, ensure all necessary federal agencies participate in the Muscular Dystrophy Coordinating Committee, and update and strengthen the standards of care for all forms of muscular dystrophy.

Last week, the legislation cleared the Senate Health, Education, Labor and Pensions (HELP) Committee. This means that approval by the full Senate is now all that is needed for the bill to be sent to President Obama's desk.

"We urge the Senate to promptly take up and pass this bill so this much-needed update to the law can be made as quickly as possible," Furlong said.

About Parent Project Muscular Dystrophy

Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.

We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.

Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne.

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SOURCE Parent Project Muscular Dystrophy (PPMD)