This year’s 10th annual March on the Hill, a Cystic Fibrosis Foundation advocacy event, saw Texas volunteers join advocates from across the country to recognize Congressman Lloyd Doggett, a Texas Democrat, as “a real champion” for his work on behalf of the cystic fibrosis (CF) community.
Rep. Lloyd Doggett was recently given the award for sponsoring and advancing a bill titled Ensuring Access to Clinical Trials Act (EACT), which became law on Oct. 7, 2015. The law upholds the important right of patients with rare diseases, such as CF, to participate in clinical trials without fear of losing vital Social Security or Medicaid benefits.
“Thanks to the dedication of our volunteers and the inspiring leadership of Senators [Orrin] Hatch and [Ron] 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,” Stacy Dollar, the executive director of the Central Texas Chapter of the CF Foundation, said in a press release.
CF is a life-threatening, genetic disease that causes persistent lung infections, progressively limiting a patient’s ability to breathe. It is estimated that 30,000 children and adults suffer from CF in the U.S., and 70,000 globally. The CF Foundation is dedicated to searching for a cure for the disease. The Foundation funds most current research on CF and is responsible for many of the drugs that are available today. It also supports and accredits a National Care Center Network, with over 70 chapters and branch offices throughout the country, which has been recognized by the National Institutes of Health (NIH) as a model of care for chronic diseases.
“Patients with rare diseases and their families need our support. Now they can better explore alternative treatments for their life-threatening illness without fear of losing their medical benefits. Working with the Cystic Fibrosis Foundation, I am very pleased we have succeeded in permanently removing a barrier to life-saving research,” Rep. Doggett said at the event.
Sens. Hatch (Republican, Utah) and Wyden (Democrat, Oregon) were also recognized at the Washington, D.C., event for their support in moving the EACT bill into law.