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More Than 100 Organizations Support Bill to Boost Participation in Clinical Trials for Rare Diseases
September 28, 2009More than 100 patient, academic and industry organizations representing millions of Americans have joined the Cystic Fibrosis Foundation to support legislation that enables individuals with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits. The bill is sponsored by Senators Ron Wyden (D-OR), Christopher Dodd (D-CT), Richard Durbin (D-IL), James Inhofe (R-OK), and Richard Shelby (R-AL), and Representatives Edward Markey (D-MA) and Cliff Stearns (R-FL). Current law prevents many people who receive Supplemental Security Income from accepting research compensation because it makes them ineligible to receive government medical benefits. This penalty stops significant numbers of people with rare diseases from participating in clinical studies. Full release.