Financial and healthcare tradeoffs associated with cystic fibrosis care in the United States: A cross-sectional study

BACKGROUND: Financial challenges are common among people with cystic fibrosis (PwCF). We explored the financial and healthcare tradeoffs that PwCF and their care partners make to meet healthcare needs, and how these tradeoffs vary across people from different income levels. 

METHODS: Adults (≥18 years) with cystic fibrosis and parents/guardians/spouses of PwCF completed the Cystic fibrosis Outcomes, Social needs and Tradeoffs due to Coverage and Financial burden (COST-CF) survey between February and May 2024. We compared financial and healthcare tradeoffs and desired support over the prior 12 months across income groups, based on 2024 US Federal Poverty Level (FPL) guidelines. 

RESULTS: Sixty-seven percent of 936 respondents experienced one or more financial issues caused by CF medical bills, ranging from 80% among those with ≤500% FPL to 47% among those with >500% FPL. The most common included actions taken to manage finances (64%) (e.g., delay of major purchases), financial consequences (57%) (e.g., inability to accumulate savings), and challenges meeting expenses (31%). Fifty-five percent of 877 respondents reported using one or more strategies to save money on CF healthcare costs, ranging from 65% among people with ≤500% FPL to 39% among those with >500% FPL. While 45% reported proactive cost-reduction strategies (e.g., discussions to reduce costs of care; requesting lower cost medications), more than one-quarter reported delaying or skipping medications (29%) or care (25%). 

CONCLUSIONS: PwCF and care partners face substantial financial burdens, with greater burdens among those with lower incomes. Many also report healthcare tradeoffs, which may impact long-term health outcomes.