Because of the new law, patients receiving federal assistance will no longer have to choose between access to health care benefits and participating in a
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 Sen. 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.