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.
The Cystic Fibrosis Foundation responds to the Institute for Clinical and Economic Review's assessment of the comparative clinical effectiveness and value of cystic fibrosis transmembrane conductance regulator (CFTR) modulators.
Today, the U.S. Senate released its version of the health care reform bill, titled the Better Care Reconciliation Act, and in response, the Cystic Fibrosis Foundation affirmed its opposition to the legislation.
The Institute for Clinical and Economic Review (ICER) developed an assessment of the comparative clinical effectiveness and value of cystic fibrosis therapies. The Foundation provided input to help inform this process.
Sr. Vice President for Policy and Community Affairs Mary Dwight reflects on the passage of the Ensuring Access to Clinical Trials Act (EACT) and what it means for the community.
March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.
Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Yesterday, the U.S. Department of Health and Human Services finalized a rule expanding short-term, limited-duration insurance plans -- threatening access to adequate, affordable coverage for people with cystic fibrosis who rely on the individual marketplace.
More than 60 teens from across the country — 25 of whom live with cystic fibrosis — participated online and on Capitol Hill in the Foundation’s Teen Advocacy Day to advocate for the CF community.