Impact of CFTR modulator therapy on basic life needs and financial concerns in people with cystic fibrosis: Data from the Well-ME survey.

Abstract

Background: CFTR modulator (CFTR-M) therapy has led to improved clinical outcomes amongst people with cystic fibrosis (PwCF) eligible for these therapies. However, there is limited data on their impact on the basic life needs and financial concerns of PwCF.

Methods: We used data from the Wellness in the Modulator Era (Well-ME) survey, which includes data from 900 PwCF both taking and not taking CFTR-M. We examined self-reported financial well-being over time and changes associated with school or work, financial planning, and costs of living. Descriptive statistics were used to analyze responses.

Results: Most respondents reported no change in financial well-being, but 13 % identified a positive change and 16 % reported a negative change. Positive changes in basic life needs included fewer missed work and school days, while negative changes included medical out-of-pocket costs. Worries about financial problems were reported in 35 % of all respondents and were more common in PwCF who never took CFTR-M or had been taking one and then stopped, in PwCF with lower lung function, and in PwCF with Medicaid insurance.

Conclusions: These results indicate that for most PwCF, CFTR-M have not affected their basic life needs, and a substantial proportion of PwCF continue to experience financial stress and concerns. Many respondents' financial concerns focused on medical costs and insurance. These data underscore the continued need for CF care teams to address PwCF's financial stress and ability to meet basic life needs, even in the era of improved physical health outcomes due to CFTR-M therapy.