Senate HELP Committee Approves MD-CARE Act - Another Critical Step Forward for our Bill

MD-CARE Act Clears Senate HELP Committee 

 

Today, the Senate HELP Committee approved the MD-CARE Act - another huge step in the right direction for our bill. This follows recent action by the House Energy and Commerce Committee. PPMD and advocates across the country have championed for co-sponsors for more than a year and to date the bill is cosponsored by 112 members of the House of Representatives and 29 US Senators!  PPMD appreciates the work of many offices, particularly that of our sponsors – Rep. Michael Burgess of Texas and Eliot Engel of New York in the House and Senators Wicker and Klobuchar in the Senate.


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?

With momentum on our side, we are now hopeful that the full House and Senate will take up the legislation.


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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