Legislation Ensuring Access to Clinical Trials for People with Neuromuscular Diseases

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MaxEidswick

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PALS
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July 17, 2015
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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.

The Muscular Dystrophy Association (MDA) is committed to bringing safe and effective treatments and cures to children and adults living with life-threatening neuromuscular diseases as quickly as possible. To this end, MDA has invested more than $1 billion in research grants that fund groundbreaking science to accelerate the development of potential therapies and cures. MDA is proud to be a continued leader in scientific discovery and drug development, and we remain dedicated to bringing urgently needed treatments and cures to our community. Passage of this legislation helps ensure access to clinical trials, which are key to finding treatments and cures.

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.






Thank you for your advocacy on this important legislation.

Kristin Stephenson
Vice President Policy & Advocacy
 
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