SALT LAKE CITY--(BUSINESS WIRE)--As part of the Cystic Fibrosis Foundation’s annual “March on the Hill” event in Washington D.C., volunteer advocates from Utah joined others from across the country to recognize Senator Orrin Hatch (R-UT) for being a champion of the cystic fibrosis community.
Sen. Hatch received this award for sponsoring and advancing the Ensuring Access to Clinical Trials Act (EACT), which was signed into law on October 7, 2015. The law permanently allows those with rare diseases, like CF, to participate in, and benefit from, clinical trials without fear of losing vital benefits through Social Security or Medicaid.
Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.
Volunteers from his home state of Utah were present as a member of the Senator’s staff accepted the award on his behalf. Senator Ron Wyden (D-OR) and Congressman Lloyd Doggett (D-TX) were also recognized for their support in the fight against cystic fibrosis by championing the clinical trials law.
“Thanks to the dedication of our volunteers and the inspiring leadership of Senators Hatch and Wyden and Congressman Doggett, the Ensuring Access to Clinical Trials Act was signed into law. This award is an important demonstration of how our community comes together with members of Congress to make meaningful progress in expanding access to vital care and treatments for people with CF,” said Laura Hadley, executive director of the Utah and Idaho Chapter of the Cystic Fibrosis Foundation.
“I’m grateful for this recognition from the CF community and am proud to have helped make a difference for thousands of families in Utah and across the nation who struggle with rare diseases. The Ensuring Access to Clinical Trials Act is a tremendous step forward for everyone who wants to participate in clinical trials for potentially life-saving treatments and also continue to have critical support systems,” said Senator Hatch.
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 CF 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 CF Foundation is a donor-supported nonprofit organization with 70 chapters and branch offices across the country. For more information, visit www.cff.org.