Across the globe, in the next decades the number of patients newly diagnosed with cystic fibrosis is expected to increase dramatically.
Meanwhile, breakthrough therapies for cystic fibrosis patients are being developed and approved that increase patients’ life expectancy and improve their quality of life. As the need for CF therapies grows, issues concerning patient access to such approved therapies will undoubtedly increase. While a global issue, this trend has manifested in the United States, where several states’ Medicaid plans have limited access to recently approved therapies.
In response to these challenges, in 2017 the Cystic Fibrosis Engagement Network (CFEN) launched as a project of the Alliance for Patient Access (AfPA), to serve as a central voice of patients advocating for policies that further patient access to approved CF therapies. In so doing, CFEN seeks to serve as leading educational and advocacy organization focused on policy matters impacting CF patient access to optimal care.
Under the leadership of its steering committee members, CFEN is the home to vibrant coalition of CF patient advocates with the mission of:
- Recruiting and engaging CFEN patients and healthcare providers as policy advocates
- Developing educational materials highlighting access barriers to optimal care
- Increasing public awareness through engaging the media
- Fostering interactions on policy issues across social media platforms
- Advocating at the federal, state and health plan level for policies that support patient access