Dr. Boyle addresses the Subcommittee on Health during the “Improving the Medicaid Program for Beneficiaries” congressional hearing.

The law that the EACT makes permanent, the Improving Access to Clinical Trials Act (IACT) of 2009, allows people with rare diseases to receive up to $2,000 annually in compensation for participation in clinical trials without that compensation counting towards their Social Security insurance and Medicaid eligibility. The IACT is currently set to expire on October 5.

During his testimony, Dr. Boyle spoke from his experience as a physician at the Johns Hopkins University Hospital about witnessing the devastating effects of CF and the impact of clinical trials in developing life-saving treatments. Dr. Boyle also shared a powerful story of a young man with CF who turned down participating in a clinical trial -- for a drug that was later determined to be the most effective treatment for his type of CF -- because the modest compensation of $750 offered for the trial put his much-needed Medicaid and SSI support into jeopardy. Forgoing compensation is unfortunately not allowed by most hospital review boards and approximately 4 months after declining to enroll, the young man passed away from complications of CF.

In addition to highlighting the need to remove barriers to enrollment for clinical trials, Dr. Boyle also discussed the challenges faced by researchers in recruiting participants to test new medications.

“If the IACT expired and this barrier was reinstated, it would not only affect future trial enrollment, it could cause those with rare diseases who are participating in clinical trials to drop out of these trials for fear of losing their benefits. This would put vital clinical research at risk at a time when the medical needs of the majority of people with rare diseases are not being met,” said Dr. Boyle.

The EACT passed a vote by the Senate on July 16, 2015. It was introduced by Senators Ron Wyden (D-OR), Orrin G. Hatch (R-UT), Edward J. Markey (D-MA), and Sherrod Brown (D-OH) in the Senate and Representatives Lloyd Doggett (D-TX), Tom Marino (R-PA) and Jim McGovern (D-MA) in the House.

The Cystic Fibrosis Foundation is honored to be able to work with the committee and congressional leaders to ensure passage of this bill.

Additional Resources:

Read Dr. Boyle's EACT testimony