Cystic Fibrosis Foundation Provides Expert Testimony to Congress in Support of the Ensuring Access to Clinical Trials Act

Bill Would Remove Barrier to Clinical Research for Rare Diseases by Ensuring that Clinical Trial Participants Don't Lose Critical Health Benefits

Sept. 18, 2015 | 3 min read

Bethesda, Md. -- Cystic Fibrosis Foundation Vice President of Therapeutics Development Michael Boyle, M.D., testified today in front of the House Energy and Commerce Committee's Subcommittee on Health. Dr. Boyle urged members to support H.R. 209, the Ensuring Access to Clinical Trials Act (EACT), which would make permanent a law enabling people to participate in clinical trials without losing critical health benefits.

EACT would make permanent the Improving Access to Clinical Trials Act (IACT) of 2009, which allows people with rare diseases such as cystic fibrosis to receive up to $2,000 annually in compensation for participation in clinical trials without it counting towards their Supplemental Security Income (SSI) and Medicaid eligibility. The IACT is currently set to expire on October 5, 2015.

“There are more clinical trials underway this year for new CF treatments than ever before.  We must ensure that nothing puts this research at risk and that no one with CF is excluded from participating in clinical trials for potentially life-saving treatments,” said Boyle.  “The Cystic Fibrosis Foundation urges Congress to pass the Ensuring Access to Clinical Trials Act without delay.”

In his testimony, Boyle spoke from experience as a physician at the Johns Hopkins University Hospital where he has witnessed the devastating effects of cystic fibrosis on patients, as well as the life-altering impact of clinical trials in developing new treatments. Boyle shared a powerful story of a young man with CF who declined to participate in a clinical trial-for a drug that was later determined to be the most effective treatment for his type of the disease-because the compensation of $750 put his much-needed Medicaid and SSI support in jeopardy. Forgoing compensation is not allowed by most hospital review boards. Approximately four months later, the young man passed away from complications of CF.

In addition to highlighting how this barrier can prevent people with CF from accessing life-saving treatments, Boyle described how it exacerbates the challenges already faced by researchers in recruiting participants from rare disease communities with very small populations.  

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 CF Foundation championed the original IACT legislation and has actively supported the Ensuring Access to Clinical Trials Act in 2015.

About the Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more cystic fibrosis research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The Cystic Fibrosis Foundation is a donor-supported nonprofit organization. For more information, go to 

Media Contact:

Laurie Fink, National Director of Media Relations, Cystic Fibrosis Foundation:

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