Yesterday, the U.S. Senate passed the “Improving Access to Clinical Trials Act” (I-ACT), bipartisan legislation that enables patients with rare diseases to participate in clinical trials without losing eligibility for public health care benefits. The Cystic Fibrosis Foundation and 120 other health advocacy organizations had advocated for the legislation.
“We are one step closer to breaking down a serious barrier to participation in clinical trials, which one day could deliver a cure for cystic fibrosis,” said Robert J. Beall, PhD, president and CEO of the Cystic Fibrosis Foundation. “This legislation represents an important opportunity for people with CF to take part in groundbreaking research that was previously out of their reach.”
Current law prevents many people who receive Supplemental Security Income (SSI) from accepting research compensation because it makes them ineligible to receive government medical benefits. The penalty has prevented some people with rare diseases from participating in clinical studies.
With Senate approval, the bill now awaits consideration by the U.S. House of Representatives.
Source: Cystic Fibrosis Foundation