Legislation Introduced to Protect Access to Clinical Trials for People with CF

Legislation introduced today will help more people with cystic fibrosis, and other rare diseases, participate in clinical trials without fear of losing important benefits or health coverage. The bill is sponsored by a bipartisan group of senators and legislators.

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The Ensuring Access to Clinical Trials Act of 2015, introduced by Senators Ron Wyden (D-OR), Orrin Hatch (R-UT), Sherrod Brown (D-OH) and Edward Markey (D-MA) would make permanent the Improving Access to Clinical Trials Act of 2009 (IACT). Without congressional action, this legislation is scheduled to expire in October 2015. The law has enabled those with rare diseases to receive compensation for participating in clinical trials without having that compensation count as income when calculating eligibility for Supplemental Security Income (SSI) and Medicaid.

The CF Foundation championed the original IACT legislation and worked closely with its Congressional sponsors to pass the bill.

Because of IACT, patients receiving federal assistance do not have to choose between access to health care benefits and participating in clinical trials for much-needed treatments. Previously, some people with rare diseases who received SSI and Medicaid could not participate in clinical research for fear that the compensation received would make them ineligible to receive government medical benefits, harming enrollment in clinical trials for critical potential treatments.

"We are grateful to Senators Wyden, Hatch and Markey and Representatives Doggett, Marino and McGovern for introducing this important bill, which will permanently remove a critical barrier to participation in clinical trials for those with rare diseases like cystic fibrosis," said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. "As innovative new treatments move through the pipeline, it is more important than ever that we clear the way for promising drugs to move more swiftly from the research phase into the hands of the people who need them."

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