The Cystic Fibrosis Engagement Network serves as a leading educational and advocacy organization focused on policy matters impacting cystic fibrosis patient access to optimal care.
Cystic Fibrosis Engagement Network
Advocating for Policies That Further Patient Access to Approved Cystic Fibrosis Therapies
Most patients with cystic fibrosis are just wrapping up an annual hassle of the new year – that of confirming their insurance will still cover the medications they need. It’s a process known as insurance reauthorization.
During the pandemic, people with cystic fibrosis weren’t just fighting their disease. Many were also fighting economic uncertainty.
Doctors told my parents I probably wouldn’t live past my 10th birthday. I was born with a rare disease called cystic fibrosis – a genetic disorder affecting the lungs, pancreas and other organs. Thanks to breakthrough medicine, I’m proud to say I recently celebrated my 43rd birthday.
Elated. Nervous. Hopeful. That’s how thousands of cystic fibrosis patients felt upon hearing last week’s news: the Food and Drug Administration will soon review a new triple combination therapy that could drastically improve their quality of life.