A new law that allows patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits went into effect yesterday. The bill, known as the “Improving Access to Clinical Trials Act” (IACT), was signed into law in October 2010.
Because of the new law, patients receiving federal assistance will no longer have to choose between access to healthcare benefits and participating in a clinical trial that could result in a new treatment for CF.
Previously, many people who received Supplemental Security Income (SSI) were prevented from accepting research compensation because it made them ineligible to receive government medical benefits. This penalty stopped significant numbers of people with rare diseases from participating in clinical studies.
The legislation was introduced by Senator Ron Wyden, D-Ore., in the Senate, and by Cystic Fibrosis Caucus Co-Chairs Reps. Edward Markey, D-Mass., and Cliff Stearns, R-Fla., in the House.
Source: Cystic Fibrosis Foundation