Foundation Leads Coalition of More than 100 Organizations in Support for Clinical Trials Bill

September 28, 2009 

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 Foundation and the coalition submitted a letter to Congress today asking for rapid approval of the bill.

“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.”

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 keeps significant numbers of people with rare diseases from participating in clinical studies.

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.

Both the House of Representatives and Senate have introduced versions of this important legislation. Currently, 64 members of the House have co-sponsored the bill, which was introduced by Congressional Cystic Fibrosis Caucus Chairs Ed Markey (D-MA) and Cliff Stearns (R-FL). Sens. Ron Wyden (D-OR), James Inhofe (R-OK), Richard Durbin (D-IL), Richard Shelby (R-AL), and Chris Dodd (D-CT) introduced the I-ACT Act in the U.S. Senate.

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