Legislation Helps Ensure Access to Clinical Trials for People with Rare Diseases

On October 7, 2015, President Obama signed into law the Ensuring Access to Clinical Trials Act of 2015 (S. 139/H.R. 209) (EACT), which removes a barrier to participating in rare disease clinical trials. EACT makes permanent a law that allows individuals to participate in rare disease clinical trials and receive up to $2,000 of compensation, without those funds counting against their income eligibility for Medicaid and SSI.

“This legislation is critical,” explained Kristin Stephenson, Vice President of Policy & Advocacy of the Muscular Dystrophy Association (MDA). “Passing this law is an important step toward making sure all eligible participants can engage in clinical trials to help find treatments and cures for muscular dystrophy, ALS, and related diseases.”

As potential treatments enter the drug development pipeline, it is essential that as many eligible individuals as possible can continue to participate in clinical trials.

“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., MDA’s Executive Vice President and Chief Medical and Scientific Officer. “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.”

MDA thanks Senators Ron Wyden (D-OR), Orrin Hatch (R-UT), and Representatives Lloyd Doggett (D-TX), Tom Marino (R-PA), and Jim McGovern (D-MA) in the House for championing this legislation.

MDA is a strong supporter of the Act and is proud to be part of an effort that brought so many members of the rare disease community together, as more than 75 organizations—together representing millions of individuals— joined in support of the bill.