SOME DISEASE SUFFERERS ON SSI ARE PENALIZED FOR JOINING IN CLINICAL TRIALS

Washington, Jun 16, 2009 - “Clinical trials are essential to the approval of new drugs and treatments, and under established ethical standards, many clinical trials offer compensation to participating patients,” stated Rep. Cliff Stearns (R-Sixth). “However, Supplemental Security Income (SSI) rules count such compensation as income, making some sufferers of rare diseases ineligible for SSI because the compensation forces them over the eligibility threshold. This measure modifies the SSI rules to increase patient participation in these vital clinical trials.”

Stearns, and Rep. Ed Markey (D-MA), co-chairs of the Congressional Cystic Fibrosis Caucus, joined in offering H.R. 2866, the Improving Access to Clinical Trials Act. This measure would allow patients with rare diseases to participate in critical clinical research without losing their SSI benefits. “This legislation 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 Stearns.

In addition, Rep. Ginny Brown-Waite (R-Fifth) signed on as a cosponsor of H.R. 2866. “We depend on clinical trial participants to help us develop cures for some of the rarest diseases in the world,” said Brown-Waite. “However, current SSI eligibility rules force patients to choose between participating in these critically important trials and receiving their monthly Social Security check. This is a choice that no one should have to make. I am a proud cosponsor of this legislation because it eliminates this burdensome offset and allows Social Security recipients to participate in these potentially life saving trials, without having to worry about losing their Social Security benefits.”