People with cystic fibrosis need adequate, affordable health insurance that covers their daily treatments, visits to care centers, and unexpected events such as hospitalizations. Our policy work aims to ensure health insurance is affordable and adequate and remove barriers to the highly specialized care and innovative treatments that people with CF need to manage their disease.

Payer Engagement and Education

We educate health insurers, legislators, and other decision-makers about cystic fibrosis, available treatments, the care center network, and the challenges people with CF face in accessing and affording their care. When we learn that people with CF are experiencing barriers to care, we take an evidence-based approach to advocate for coverage and 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.

Adequate, Affordable Insurance Coverage

In order to access high-quality, specialized care, people with CF need adequate, affordable insurance. Although nearly everyone with CF has public or private health insurance, most individuals and families rely on multiple sources of coverage to afford their care and address the cost burden associated with the disease. Often, this is because health insurance plans are unaffordable or have gaps in coverage for CF care and treatments.

We strive to ensure availability of adequate, affordable coverage so people with CF can take advantage of all the CF care model has to offer and have full access to all available treatments. We work to protect and expand access to public programs, such as Medicaid and other state health care programs. 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.

Our work also includes supporting efforts to stabilize insurance markets so people without access to employer-sponsored or public insurance have adequate, affordable coverage options.

The Patient Protection and Affordable Care Act

Over the last decade, the Patient Protection and Affordable Care Act (ACA), the health care law of the United States, has fundamentally changed the way people with cystic fibrosis access care and treatment, providing protections that were not previously available them. The law has made it so that people with CF cannot be denied coverage, charged more, have their benefits limited, or be subjected to annual and lifetime limits on their coverage simply because they were born with CF.

While the ACA has helped millions of people gain coverage, we believe there is opportunity to strengthen the law, making it easier, and less expensive, for people with CF to find and pay for insurance that will cover their care.