As part of the Cystic Fibrosis Foundation’s annual “March on the Hill” event in Washington D.C., volunteer advocates from across the country joined to recognize Senator Ron Wyden (D-OR) for being a champion of the cystic fibrosis community. He received the “Legislative Champion Award” from the Cystic Fibrosis Foundation.
Sen. Wyden 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 cystic fibrosis, 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 cystic fibrosis.
Senator Wyden is joined by Senator Orrin Hatch (R-UT) and Congressman Lloyd Doggett (D-TX) in receiving this award from the Cystic Fibrosis Foundation in recognition of their support in the fight against cystic fibrosis.
“Thanks to the dedication of our volunteers and the inspiring leadership of Senators Wyden and Hatch 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 cystic fibrosis,” said Jan Klepinger, executive director of the Oregon Chapter of the Cystic Fibrosis Foundation.
“I’m pleased to accept this award on behalf of the families in Oregon and across the country whose lives are affected by cystic fibrosis and other rare diseases. These families now can have access to vital, potentially life-saving research without fear of losing their medical benefits,” said Senator Wyden.