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New Legislation Seeks to Boost Participation in Clinical Trials for Rare Diseases

Bill would remove financial penalties for participating in research studies

June 15, 2009

(Bethesda, Md.) — New legislation introduced today would allow patients with rare diseases to participate in clinical drug studies without losing their eligibility for government healthcare coverage.

The “Improve Access to Clinical Trials Act” is co-sponsored by Representatives Edward J. Markey (D-MA) and Cliff Stearns (R-FL) and nearly 30 members of the House of Representatives.

Current law prevents many people who receive Supplemental Security Income (SSI) from accepting research compensation because it would make them ineligible to continue receiving government medical benefits. This financial penalty prevents significant numbers of people with rare diseases from participating in clinical studies.

Researchers developing drugs to treat rare diseases struggle to recruit participants for clinical trials because of limited patient populations. This is particularly true for cystic fibrosis (CF). 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.

“We are grateful to Representatives Edward Markey and Cliff Stearns for introducing this important bill that allows more people with rare diseases — including cystic fibrosis — to participate in clinical trials,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “Cystic fibrosis is a devastating disease and this new legislation clears the way for promising drugs to move more swiftly from the research phase into the hands of people who need them.”

Said Rep Markey, “Clinical research is critical to our progress towards curing rare diseases such as cystic fibrosis, especially at a time of tremendous opportunity and hope in medical research. Current SSI eligibility rules are forcing patients to choose between participating in important clinical trials and keeping their SSI benefits — a cruel choice no one should ever have to make." He added, "The bi-partisan Improving Access to Clinical Trials Act will encourage patients suffering from rare diseases to participate in promising clinical research that may lead to cures, better treatments, and ultimately, saved lives, without having to worry that they could lose the SSI benefits they depend on.”

“As the Co-Chair of the Congressional Cystic Fibrosis Caucus, I am honored to be the lead Republican sponsor of this legislation, which will help ensure that individuals suffering from rare and life-threatening diseases, such as cystic cibrosis, can participate in vital clinical trials that will lead to new treatments and cures for these diseases,” said Rep. Stearns.

Fifty years ago, there were no drugs for people with CF and those with the disease rarely lived to attend elementary school. Today, because of the Cystic Fibrosis Foundation’s focus on innovative and aggressive research, there are more than 30 potential therapies in development, and the median life expectancy is higher than 37 years.

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) 951-4422; lfink@cff.org 
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The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.