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Energy and Commerce Committee Clears MD-CARE Act for House Vote

One Step Closer

Progress! Today the House Energy & Commerce committee voted unanimously to advance H.R. 594, the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014. This action moves the bill to consideration and hopefully passage by the full House of Representatives.  


PPMD has championed for co-sponsors for more than a year and to date the bill is cosponsored by more than 100 members of the House of Representatives!  PPMD appreciates the work of many offices, particularly that of our sponsors – Rep. Michael Burgess of Texas and Eliot Engel of New York – that has gotten us to this stage. 


The legislation – a focal point of the past two PPMD Advocacy Conferences – will update the landmark MD-CARE Act, first signed into law in 2001 and updated in 2008. The updated legislation keeps pace with the clinical, research, and public health needs of today. For example, the amendments will:

  • Ensure adequate attention is focused on cardiac and pulmonary research, an increasingly important issues as Duchenne patients age.
  • Add additional federal agencies to the Muscular Dystrophy Coordinating Committee (MDCC) and require the MDCC to meet at least twice each year.
  • Expand surveillance of the disease and will update existing care standards and develop new ones, particularly for adults with Duchenne and other forms of muscular dystrophy

What's next?

House: We are hopeful that the bill will be taken up by the full House for a vote before summer recess.

Senate: We are currently awaiting action by committee on the Senate side, which we hope for later this month.
It will then need to move to the full Senate for a vote.

We are getting closer to our goal of updating the MD-CARE Act Amendments! Stay tuned for continued updates and thank you for all of your hard work!

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