Living With Cystic Fibrosis

Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB).  Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United. It's a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Amanda Boone I would say is a rock star advocate in the CF and rare disease community.  She has cystic fibrosis and lives in Colorado.  She truly rose to what I consider fame in the rare community when the Prescription Drug Affordability Drug (PDAB) was introduced in her state.We're going to talk about the PDAB and all sorts of legislation the Amanda is fighting for, and how it impacts you.Amanda Boone is an advocate who lives with Cystic Fibrosis (CF), a chronic and fatal chronic illness. Prior to 2019 Amanda’s