On Oct. 15, 2010, President Obama signed the "Improving Access to Clinical Trials Law". This was legislation championed by over 120 health advocacy organizations. It will enable patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits.
"We are thankful to the rare disease advocates and our champions in Congress who made this momentous achievement possible," says Robert J. Beall, PhD, president and CEO of the Cystic Fibrosis Foundation. "This important legislation will benefit 25 million Americans with rare diseases and will help swiftly move promising new treatments from the research stage to the patients who need them most."
Previous law barred many people receiving Supplemental Security Income (SSI) from accepting research compensation because it could make them ineligible to receive government medical benefits. This penalty had prevented significant numbers of people with rare diseases from participating in clinical studies. With limited patient populations with rare disorders, this barrier presented challenges for finding enough people to participate in research studies evaluating the effectiveness of promising new drugs.
Passage of this legislation should remove the concern of losing public health care benefits for participants and facilitate accrual of patients with rare diseases for clinical research.
