More than 100 Organizations Support Bill to Boost Participation in Clinical Trials for Rare Diseases

Legislation Would Remove Financial Penalties for Participating in Research Studies

Sept. 28, 2009 | 2 min read

(Bethesda, Md.) -- More than 100 patient, academic and industry organizations representing millions of Americans have joined the CF Foundation to support legislation that enables patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits.
The bill is sponsored by Senators Wyden (D-OR), Dodd (D-CT), Durbin (D-IL), Inhofe (R-OK), & Shelby (R-AL) and Representatives Markey (D-MA) and Stearns (R-FL). It is pending in Congress.

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. This penalty stops significant numbers of people with rare diseases from participating in clinical studies.

“We strongly support passage of this important legislation and are pleased that so many organizations nationwide have joined us in this effort,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “Clinical trials are critical for developing effective therapies for cystic fibrosis and dozens of other rare diseases. Quick passage of this bill by Congress will support life-saving research for many people in need.”
Organizations that support this legislation include: BIO, FasterCures, Genetic Alliance, Genentech, Johns Hopkins Hospital, National Health Council, National Organization of Rare Disorders, Pharmaceutical Research and Manufacturers of America (PhRMA), PTC Therapeutics, Research!America, Seattle Children's Hospital, and Yale University School of Medicine.

Researchers who are developing drugs for rare diseases struggle to recruit participants for clinical trials because of limited patient populations. This is particularly true for cystic fibrosis. More than 30 promising CF drugs are in development, yet only about 30,000 people in the United States have this life-threatening, genetic disease.

About the Cystic Fibrosis Foundation 

The Cystic Fibrosis Foundation is the leading organization devoted to curing and controlling cystic fibrosis. Headquartered in Bethesda, Md., the Foundation funds CF research, has more than 70 chapters and branch offices throughout the country, and supports and accredits a nationwide network of 110 CF care centers, which provide vital treatments and other CF resources to patients and families.

Media Contact

Laurie Fink, director of media relations: 301-841-2602,

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