Bill Allows People Receiving Supplemental Security Income and Medicaid to Participate in Rare Disease Clinical Trials Without Losing Benefits
WASHINGTON –Senate Finance Committee Ranking Member Ron Wyden, D-Ore., Senate Finance Committee Chairman Orrin Hatch, R-Utah, and Senator Edward J. Markey, D-Mass., today applauded the House of Representatives’ passage of the “Ensuring Access to Clinical Trials Act,” bipartisan legislation that makes it possible for people receiving Supplemental Security Income (SSI) and Medicaid to continue participating in rare disease clinical trials. The bill will now go to the President’s desk for signature.
“Those suffering from rare diseases should not have to choose between their benefits or potentially life-saving treatment,” Wyden said. “This bipartisan legislation ensures that choice is a thing of the past. I applaud my colleagues in the House for being a part of the effort to improve opportunities and medical care for the patients battling these rare and life-threatening illnesses.”
“Clinical research plays a vital role in the discovery of new treatments and cures for diseases affecting patients across our nation,” Hatch said. “I’m pleased the House acted to pass this bipartisan bill that ensures those fighting rare diseases can continue to participate in important clinical trials. With this bill signed in to law, patients will be allowed to work towards improving their own health and the health of others.”
“Thanks to this bipartisan legislation, now patients won't be forced to choose between their benefits and the promise of a life-saving clinical trial,” Markey said. “Passage of the Ensuring Access to Clinical Trials Act will mean more people with rare diseases can participate in these critical trials, improving the chances of finding cures and better treatments. My thanks to the House for passing this life-saving legislation, and my gratitude to Senators Wyden and Hatch for their on-going partnership in our effort to give hope to patients suffering from rare diseases."
The bill, which was authored by Wyden, Hatch, and Markey, makes permanent a change instituted in 2010 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.
The Government Accountability Office (GAO) reviewed the program last year and could not find any negative aspects from the 2010 law. That determination cleared the way for the legislation the Congress has passed today. GAO’s report can be found here.
The Senate passed the bill in July of this year.
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