Washington, D.C.-- Representatives Edward J. Markey (D-Mass.) and Cliff Stearns (R-Fla.), co-chairs of the Congressional Cystic Fibrosis Caucus, today introduced the Improving Access to Clinical Trials Act, H.R. 2866. This bi-partisan bill modifies Supplemental Security Income (SSI) eligibility rules to increase participation in clinical trials for rare diseases. In accordance with established ethical standards, many clinical trials offer compensation for patient participation. Current eligibility rules for SSI count such compensation as income, making some individuals suffering from rare diseases ineligible for SSI benefits because compensation for participation in the trial would put their income over the SSI eligibility threshold. The Improving Access to Clinical Trials Act allows patients of rare diseases to participate in critical clinical research without losing their SSI benefits.
“Clinical research is critical to our progress towards curing rare diseases such as cystic fibrosis, especially at a time of tremendous opportunity and hope in medical research,” said Rep. Markey. “Current SSI eligibility rules are forcing patients to choose between participating in important clinical trials and keeping their SSI benefits – a cruel choice no one should ever have to make. The bi-partisan Improving Access to Clinical Trials Act will encourage patients suffering from rare diseases to participate in promising clinical research that may lead to cures, better treatments, and ultimately, saved lives, without having to worry that they could lose the SSI benefits they depend on.”
“As the Co-Chair of the Congressional Cystic Fibrosis Caucus, I am honored to be the lead Republican sponsor of this legislation that will help ensure that individuals suffering from rare and life threatening diseases, such as Cystic Fibrosis, can participate in vital clinical trials that will lead to new treatments and cures for these diseases,” said Rep. Stearns.
“We are grateful to Representatives Edward Markey and Cliff Stearns for introducing this important bill that will allow more people with rare diseases -- including cystic fibrosis -- to participate in clinical trials,” said Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation, an endorser of the bill. “Cystic fibrosis is a devastating disease and this new legislation clears the way for promising drugs to move more swiftly from the research phase into the hands of people who need them to live a longer and better life.”