Bill Would Maintain Ability of People Receiving Supplemental Security Income and Medicaid to Participate in Rare Disease Clinical Trials

WASHINGTON – Senate Finance Committee Ranking Member, Ron Wyden, D-Ore.; Finance Committee Chairman Orrin Hatch, R-Utah; and Senator Edward Markey, D-Mass., today introduced the bipartisan Ensuring Access to Clinical Trials Act, legislation that would maintain the opportunity for people receiving Supplemental Security Income (SSI) and Medicaid to participate in rare disease clinical trials. 

The bill would make permanent a change instituted in 2010 that expires this year that allows people receiving SSI and Medicaid benefits to take part in clinical trials without jeopardizing their eligibility for those benefits. The 2010 law included a sunset after five years so its effects could be studied and assessed.

That has occurred and the Government Accountability Office (GAO) has issued a report that did not find any negative aspects from the 2010 law.

“We all know what’s at stake and how it’s often difficult to find participants for rare disease clinical trials,” Wyden said. “This law has helped increase the number of people who can participate and, hopefully, be a part of the effort to improve treatments and find cures.”

“Clinical research is the key to unlocking the cures of the future. Patients should never be forced to choose between their benefits and the promise of a clinical trial,” Markey said. “This legislation will help more people with rare diseases participate in these critical trials, improving the chances of finding cures and better treatments for those with rare diseases.”

Representative Lloyd Doggett (D-TX) also introduced a companion bill today in the House.