114th Congress (Current Legislation)
The MDA Advocacy department continues to strive to be an effective voice for the hundreds of thousands of Americans whom we serve. As legislation relevant to our neuromuscular community is introduced throughout the 114th Congress, we will provide detailed overviews of the issues, as well as helpful tools to take action.
Ensuring Access to Clinical Trials Act of 2015 (“EACT”) (S.139/H.R.209)
New Legislation Would Ensure Access to Clinical Trials for People with Neuromuscular Diseases
The Muscular Dystrophy Association has partnered with more than 75 organizations—who together represent millions of individuals—in support of the Ensuring Access to Clinical Trials Act of 2015 (“EACT”) .
On January 8, U.S. lawmakers introduced legislation that will permanently remove a barrier to clinical research and allow Supplemental Security Income (SSI) and Medicaid recipients to participate in and benefit from clinical trials without fear of losing vital benefits.
21st Century Cures
This is an initiative in the U.S. House of Representatives to advance medical research and accelerate the discovery, development and delivery of treatments and cures, especially for those with unmet medical needs. The initiative was introduced in 2014 by Rep. Fred Upton (R-MI) and Rep. Diana DeGette (D-CO) and has evolved into draft legislative language that addresses issues including incorporating patient perspectives into the regulatory review process, modernizing clinical trials, and streamlining regulatory processes. MDA has been, and will continue to be, engaged in this initiative.
21st Century Cures Abbreviated Timeline:
On May 1, 2014, a Call to Action was issued by the U.S. House of Representatives Energy & Commerce Committee proposing an in depth look at how Congress could accelerate the discovery, development and delivery of cures. Read 21st Century Cures: A Call to Action 
During the remainder of 2014, the Committee held multiple hearings and roundtable discussions and asked specific questions to which many organizations and individuals responded. Read MDA’s comments .
On January 27, 2015, the Energy & Commerce Committee released a Discussion Document and white paper outlining the initiative. Read the Discussion Document  and the 21st Century Cures Discussion Document White Paper .