The Cystic Fibrosis Foundation Celebrates Passage of the Ensuring Access to Clinical Trials Act of 2015

CFF-Championed Bill Eliminates Barriers to Participation in Clinical Trials for People with CF and other Rare Diseases

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(Bethesda, Md.) -- The Cystic Fibrosis Foundation celebrates passage of a bill today in the U.S. House of Representatives that will remove barriers to participation in clinical trials for much-needed treatments of rare diseases, including cystic fibrosis. The legislation will now go to President Barack Obama's desk for his signature. 

If signed, the Ensuring Access to Clinical Trials Act of 2015 (EACT) will make permanent a law that allows people living with rare diseases to participate in clinical trials without counting up to $2,000 of the compensation they receive as income when calculating eligibility for Supplemental Security Income and Medicaid

Prior to passage of the earlier law, some people with rare diseases did not participate in clinical research for fear that the compensation would make them ineligible to receive government benefits. Due to the already limited patient population for rare diseases and the precise requirements for participating in clinical trials, this issue made it difficult for researchers to recruit the numbers needed for their trials. 

The bill, which passed the U.S. Senate in July, was introduced by Senators Ron Wyden (D-OR), Orrin Hatch (R-UT), Sherrod Brown (D-OH) and Edward Markey (D-MA) in the Senate and Representatives Lloyd Doggett (D-TX), Tom Marino (R-PA) and James McGovern (D-MA) in the House. 

“We applaud the House of Representatives for passing this critical bill that will help advance research for potentially life-saving treatments for rare diseases, like cystic fibrosis,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “The bill will be essential to people with CF who rely on government benefits as well as to the researchers who are working tirelessly to find new treatments for this fatal disease. We call on President Obama to sign this legislation without delay.” 

“Vulnerable patients contributing to vital research should never have to face the difficult decision of either dropping out of clinical trials altogether or losing their medical benefits. We need to remove barriers to life-saving research,” said Congressman Lloyd Doggett (D-TX).

“I am proud to be a part of and champion the success of the Ensuring Access to Clinical Trials Act, which passed the House today. It is an important bill for those living with rare diseases, especially cystic fibrosis. It creates greater certainty for those who want to continue participating in clinical trials without fear of losing their vital benefits. It is these trials which are so critical for our efforts to defeat these devastating diseases and we will continue to do all we can to ensure everyone who wants to participate will have the necessary support systems,” said Congressman Tom Marino (R-PA).

“For families across the country who are impacted by cystic fibrosis and other rare diseases, this is a truly exciting step forward,” said Congressman Jim McGovern (D-MA). “Patients and families shouldn't have to choose between participating in clinical trials where they can gain access to potentially life-saving treatments or social safety net programs. The health of our families must always come first. I was proud to be an original cosponsor and urge President Obama to sign it as soon as possible.”

The CF Foundation has long supported research to discover and develop new CF therapies to ensure people with the disease have the best health and quality of life possible. This has led to a robust pipeline of potential treatments targeting the disease from every angle. As a result, the life expectancy of people with CF has more than doubled in the last 30 years. Nearly every CF drug available today was made possible because of CF Foundation support.

In addition to the CF Foundation, 75 patient, industry, academic, and medical organizations have supported the Ensuring Access to Clinical Trials Act, including the National Organization for Rare Disorders (NORD), the Muscular Dystrophy Association (MDA), and the Biotechnology Industry Organization (BIO).   

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 www.cff.org.

Media Contact:

Laurie Fink: (301) 841-2602; lfink@cff.org

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About the CF Foundation | Public Policy | Clinical Trials
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