New Legislation Would Ensure Access to Clinical Trials for People with Neuromuscular Diseases
The Muscular Dystrophy Association has partnered with the Cystic Fibrosis Foundation, the National Organization for Rare Disorders, and more than 70 other organizations — who together represent millions of individuals—in support of the Ensuring Access to Clinical Trials Act of 2015 (“EACT”) (S.139/H.R.209) You can read the sign on letters by clicking a link below:
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.
The legislation would make 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.
“Removing barriers for people and families living with neuromuscular diseases is a critical step to accelerating research and discovering urgently needed treatments,” said Valerie Cwik, M.D., Executive Vice President and Chief Medical and Scientific Officer of the Muscular Dystrophy Association. “There has never been a more hopeful time in the fight against neuromuscular disease research, but we must clear the way for promising drugs to move more quickly from the research lab to our families’ living rooms.”
Contact your elected officials and encourage them to support the Ensuring Access to Clinical Trials Act of 2015 (S 139/HR 209):
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