Harkin Applauds Senate Passage of Bipartisan Muscular Dystrophy Bill, Which Now Heads to President’s Desk

WASHINGTON, D.C.—Today, Senator Tom Harkin (D-IA), Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee, released the following statement applauding Senate passage of the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2014. In July, this bill was passed by the HELP Committee and the companion bill was passed by the House. When the MD-CARE Act and the Emergency Medical Services for Children Reauthorization Act are signed into law as expected, 18 bills originating in the HELP Committee will have been enacted into law in this Congress under Harkin’s chairmanship.

“Senate passage of this bipartisan bill is a strong step forward in the push to strengthen support and health care for the thousands of Americans who have muscular dystrophy,” Harkin said. “Thanks to continuing advances in medical science, people with this disease are living longer than ever before. This critical bill will implement much-needed improvements to ensure these Americans are getting the care they need and I urge the President to sign it into law as soon as possible.”                        

The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2014 is sponsored by Senators Bob Menendez (D-NJ), Roger Wicker (R-MS), and Chairman Harkin. The legislation updates existing programs related to muscular dystrophy. Many of the updates reflect the reality that individuals with muscular dystrophy are living longer than ever before and, as a result, what has long been largely regarded as a pediatric disease now impacts a large number of adult patients as well. Specifically, the bill:

• Updates statute to include Becker, congenital MD, and limb-girdle MD in the various forms of muscular dystrophy.
• Requires the Muscular Dystrophy Coordinating Committee to meet at least twice per year and updates representatives of the Committee to include those from the Social Security Administration and the Administration for Community Living.
• Promotes thorough data collection and data sharing by existing programs at the Centers for Disease Control and Prevention (CDC).
• Calls for updating and disseminating the existing MD care considerations for pediatric and adult patients, as the patient population continues to live longer.

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