This bill, which the CF Foundation helped successfully pass in October through robust advocacy efforts, means that those people with rare diseases can permanently participate in clinical trials without the fear of losing critical government benefits.
CF volunteers from across the country celebrated the three elected officials at a reception one day prior to the Foundation's annual signature advocacy event, March on the Hill. Finance Committee staffer, Jeff Wrase, accepted the award on behalf of Senator Hatch at the reception. Morgan Rawson, a CF advocate from Utah, introduced the work of Senator Hatch and thanked him and his staff for their work in passing this vital legislation.
"Senator Hatch has dedicated a great deal of his career to working with the rare disease community," said Rawson. "He exemplifies CF advocacy and the spirit to protect those with CF and their families. We are grateful to have him as one of our champions on Capitol Hill."
Congressman Doggett and Senator Wyden were unable to attend the reception but received their awards the following day during March on the Hill in meetings with volunteer advocates and CF Foundation staff.
"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.
"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," said Rep. Lloyd Doggett.
The CF Foundation is extremely grateful for the support and dedication of all of our champions in Congress and the hard work of our volunteer advocates in passing the Ensuring Access the Clinical Trials Act. Our volunteers held hundreds of meetings with their elected officials about the importance of this legislation and sent more than 11,000 emails urging their members of Congress to pass this critical bill into law.