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SMA Foundation

Breaking News from the Muscular Dystrophy Association: Congress Passes the Ensuring Access to Clinical Trials Act (S. 139/H.R. 209)

This afternoon the U.S House of Representatives passed the Ensuring Access to Clinical Trials Act of 2015 (EACT) (S. 139/H.R. 209). Since the U.S. Senate passed the bill in July, the Act is now on its way to President Obama’s desk to be signed into law.

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 because rare disease clinical trials are difficult to fill due to the relatively small number of eligible participants—and any barrier to participation could prevent a trial from going forward. 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.

The Muscular Dystrophy Association (MDA) has been a strong supporter of the Act and 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 recognizes the leadership of the Cystic Fibrosis Foundation (CFF) in this legislation and appreciates the collaborative efforts of CFF and the National Organization for Rare Disorders (NORD) in promoting its passage. MDA 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.

Thank you for being an advocate and for helping move this important legislation forward. Together, we are stronger.

Kristin Stephenson
Vice President Policy & Advocacy
Muscular Dystrophy Association