This month, 15-year-old Molly Bonnell and her sister Emily, 13, who have cystic fibrosis, discovered how easy it is to make their voices heard in Congress -- without leaving their living room.
Site Search
More than 200 CF advocates from 47 states held nearly 400 meetings with members of Congress and their staff, and more than 850 advocates from across the country called their members of Congress as part of the CF Foundation's first March on the Hill online Day of Action.
More than 200 advocates from 32 states traveled to Washington, D.C., on June 28 for the Cystic Fibrosis Foundation's 10th annual Teen Advocacy Day, which enabled teens to meet with their elected officials on Capitol Hill to fight for access to high-quality, specialized care for their friends and loved ones living with CF.
The Cystic Fibrosis Foundation has followed the health care reform discussion closely. While the Foundation has not taken a position on any particular health reform bill, we have consistently and aggressively encouraged officials to include specific reforms that are important for the treatment of cystic fibrosis.
The U.S. House of Representatives has passed the American Health Care Act (AHCA), legislation that fails to adequately protect people living with cystic fibrosis.
Yesterday, the Cystic Fibrosis Foundation met with HHS Secretary Tom Price and seven other patient advocacy groups to discuss drug pricing and the needs of the CF community. President Trump has identified drug pricing as a top priority, and this meeting was the start of a listening tour by the Secretary.