Ed Markey: “Nearly 50 percent of the CF population receives public benefits, including SSI and Medicaid. While the average clinical…”

“Nearly 50 percent of the CF population receives public benefits, including SSI and Medicaid. While the average clinical trial compensation amount for a cystic fibrosis drug is $700, an individual with cystic fibrosis often has medical expenses totaling nearly $80,000 per year. 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. The bipartisan 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 treatment, and ultimately, saved lives, without having to worry that they could lose SSI benefits. Our bill has been endorsed by more than 120 organizations, including the Cystic Fibrosis Foundation, the Biotechnology Industry Organization, the National Health Council, and Research!America. Research is medicine's field of dreams from which we harvest the findings that give hope to millions of Americans that the disease that runs through their family's history may finally be cured. That is what this bill is all about, ensuring clinical trials are conducted that give families hope.”