MEASURE REMOVES BARRIER TO PARTICPATING IN LIFE-SAVING CLINICAL TRIALS
 

Washington, Sep 23, 2010 -

“I am a proud co-chair and co-founder of the Congressional Cystic Fibrosis Caucus, along with my colleague Rep. Ed. Markey (D-MA), where we work closely with the Cystic Fibrosis Foundation,” stated Rep. Cliff Stearns (R-Sixth).  “We learned that low-income patients with rare diseases, such as cystic fibrosis, face a serious barrier to taking part in potentially life-saving clinical trials because the modest fee they receive for participating can impact their eligibility for public health benefits such as Supplemental Security Income and Medicaid.  This barrier forces patients to decide between their health benefits and the chance to join in clinical trials that could improve their condition.”

To correct this problem, Stearns and Markey offered H.R. 2866, the Improving Access to Clinical Trials Act (I-ACT), that allows people with rare diseases to participate in clinical trials that provide nominal compensation without the risk of losing their health care coverage.  The Senate approved identical legislation, which the House joined in approving today with passage of S. 1674, and it will be sent to the President for his approval.  

Added Stearns, “There are about 30,000 people in our nation with cystic fibrosis, and sadly nearly half of them receive public benefits.However, there are also over 30 new drug therapies and treatments for cystic fibrosis in the pipeline that can improve their health and their lives.  Because cystic fibrosis is rare, there are not enough patients who can participate in clinical trials because they are afraid of losing their benefits.This measure removes this barrier to future treatments and possible cures.”