Ensuring Access to Clinical Trials

The MDA sent out the following update this morning.

July 17, 2015

Legislation Ensuring Access to Clinical Trials for People with Neuromuscular Diseases Passes U.S. Senate

On July 16, 2015, the U.S. Senate passed the Ensuring Access to Clinical Trials Act (S.139), which removes barriers for those with neuromuscular and other rare diseases to participate in clinical trials.

The bipartisan legislation makes permanent the Improving Access to Clinical Trials Act of 2009 ("IACT") that is scheduled to expire in October 2015. The bill stipulates that up to $2,000 of compensation will not be counted as income toward patients' eligibility for Supplemental Security Income (SSI) or Medicaid. By making the IACT permanent, those with muscular dystrophy, Amyotrophic Lateral Sclerosis (ALS), Spinal Muscular Atrophy (SMA) and other neuromuscular and rare diseases will be able to continue to participate in clinical trials without the risk of losing vital benefits.

MDA is proud to partner with the Cystic Fibrosis Foundation, the National Organization for Rare Disorders, and more than seventy other groups- who together represent millions of individuals-in support of the Ensuring Access to Clinical Trials Act of 2015 ("EACT") (S.139/H.R.209).

An identical bill is currently pending in the U.S. House of Representatives (H.R. 209). Please click the button below to receive advocacy alerts and updates about this and other important policy initiatives.

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It is good to hear that more than 70 organizations have come together to support the passage of this Act.  Additional information and details about the act can be found at Congress.Gov .