New Legislation Seeks to Boost Participation in Clinical Trials for Rare Diseases
Bill would remove financial penalties for participating in research studies
The “Improve Access to Clinical Trials Act” is co-sponsored by 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 U.S. have this life-threatening, genetic disease.
“We are grateful to Representatives
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
SOURCE Cystic Fibrosis Foundation