Through careful, aggressive, and continuously improving disease management, the average life expectancy for people with cystic fibrosis has risen steadily. This reflects decades of hard work to improve CF treatments, develop evidence-based standards of care, and encourage adherence to a lifetime of necessary, highly specialized care. However, this system of care and the improvements in quality and length of life for those living with CF can only be realized if they have access to adequate and affordable insurance. People with cystic fibrosis need health insurance that covers their daily treatments, visits to care centers, and unexpected expenses — such as hospitalizations —without imposing unaffordable costs.

Adequate, Affordable Insurance Coverage

Although nearly everyone with CF has public or private health insurance, most individuals and families also rely on additional financial assistance. And, despite having health insurance and additional financial assistance, the lifelong, high cost of care means people with CF and their families still routinely make tradeoffs in other aspects of their lives to meet their health care needs.

We work to protect and expand access to public insurance such as Medicaid, and other state programs to help people with CF afford their care. We advocate for funding for these programs so states can maintain or enhance program eligibility, and we support Medicaid expansion in every state to allow as many people with CF as possible to benefit from the program. With Medicare, we seek to remove barriers to care, such as streamlining the prior authorization process, and improving patient access and affordability to essential therapies.

For individuals enrolled in private insurance, either through their employer or the individual marketplace, we advocate for access to protect access to essential care by addressing cost and administrative burdens that ultimately delay care and may force those with CF to skip necessary treatments. We also support efforts to fortify patient protections included in the Affordable Care Act and combat the spread of less adequate insurance products to help ensure people with CF get the coverage they need.

Payer Engagement and Education

When we learn that people with CF are experiencing barriers to care, we connect public and private payers with local CF experts. Our goal is to build long-term, meaningful relationships with key decision-makers to support evidence-based decision-making that enables people with CF to get the care they need.