Adequate, Affordable Coverage for People With Cystic Fibrosis

We support health care policies that help people with cystic fibrosis get the care they need. This includes making sure health insurance is affordable and covers the high-quality, specialized care and treatments they need to live longer, healthier lives.

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Summary

People with CF need highly specialized care and treatments to manage their disease and lead longer, healthier lives. In the United States, this type of care can be expensive, and health insurance can be difficult to navigate.
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.
We advocate for policy and coverage priorities that help ensure health insurance meets the needs of people living with CF and helps them access the highly specialized care and innovative treatments needed to manage their disease.

Through 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

While nearly all people with cystic fibrosis have at least one form of health insurance, that’s often not enough to cover treatment and care costs associated with the disease. 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 believe health insurance should cover evidence-based CF treatments and care without undue cost and administrative burden.

Medicaid: We work to protect Medicaid and other state-based coverage programs to help people with CF afford the care they need. We support policies that expand Medicaid access, reduce administrative burdens, and strengthen the programs' ability to provide consistent, affordable coverage. We also advocate for robust, sustainable funding for state-specific programs so eligibility can be maintained or enhanced.
Medicare: We support reforms that simplify prior authorization and lower prescription drug out-of-pocket costs so people with CF can reliably afford and access the therapies they need.
Private Insurance: For individuals enrolled in private insurance — whether through an employer or the individual marketplace — we advocate for reducing cost and administrative barriers that delay or prevent necessary care. We also support strengthening Affordable Care Act protections and oppose insufficient or noncomprehensive insurance options to ensure access to robust, reliable coverage.

Payer Engagement and Education

When we learn that people with CF are experiencing barriers to care due to payer coverage policies, 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.

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Topics

About the CF Foundation | Health Care Reform | Insurance | Public Policy