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,” explains Kristin Stephenson, Vice President of Policy & Advocacy of the Muscular Dystrophy Association (MDA), “because rare disease clinical trials are already challenging to fill due to the relatively small number of eligible participants—so any barrier to participation could impact whether a trial can go forward.”