Discomfort talking about CF costs keeps patients from financial aid

Many people with cystic fibrosis (CF) struggle with steep healthcare bills, but those who hesitate to discuss money with their doctors face the highest barriers to getting financial help, a U.S. survey has found.

Patients often keep quiet simply because they do not know what questions to ask or worry their clinic cannot help, researchers wrote, emphasizing that CF care teams must take the lead in discussing costs during routine visits.

“Not knowing what questions to ask hindered [people with CF] from sharing financial issues,” researchers wrote. “Teams should proactively assess financial needs and connect to resources.”

The study, “Comfort discussing financial challenges and accessing resources in cystic fibrosis care among people with cystic fibrosis and their care partners: A cross-sectional survey study,” was published in the Journal of Cystic Fibrosis. It was supported by a grant from the CF Foundation.

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Living with CF requires lifelong daily therapies, specialized medications, and frequent clinic visits that carry high out-of-pocket costs. While earlier research showed that patients who skip or delay treatment due to expense often feel uncomfortable talking about money, it remained unclear whether that silence actively blocked them from finding assistance.

To find out, the 2024 Cystic Fibrosis Outcomes, Social Needs and Tradeoffs due to Coverage and Financial Burden study surveyed 875 patients and family caregivers across the U.S. Only about half of respondents (51%) said they felt fully comfortable bringing up financial worries with their care team, while 38% felt only slightly or somewhat comfortable, and 11% felt not comfortable at all.

Barriers to discussing care costs

Overall, more than two-thirds of participants (69%) reported facing financial barriers, with the heaviest strain on low- and middle-income households. In contrast, patients who felt at ease discussing their financial concerns generally reported better household finances, stronger mental health, and a higher quality of life. Half (50%) of the participants said their care team had discussed whether healthcare costs created a financial burden in the previous year.

Furthermore, one-third (33%) reported that out-of-pocket costs were never brought up when a doctor recommended a new treatment. This was most pronounced among people who were uncomfortable discussing finances. Yet, two-thirds of respondents (67%) stated that care teams should review treatment expenses regularly.

When patients did receive guidance on financial assistance, clinic social workers served as the primary resource, cited by 45% of respondents.

More than one-quarter of patients (27%) noted they simply did not know what questions to ask. Others cited limited appointment time, concerns that team members lacked the knowledge or resources to help, and fear of negative consequences from sharing financial concerns.

Navigating aid programs and next steps

Although 84% had received co-pay assistance, insurance subsidies, or charitable grants to pay for CF therapies, many stated that existing aid falls short.

“Additional financial resources are not enough. Also, they often run out of available funding, so they involve uncertainty as well,” said one woman with CF, who felt slightly comfortable discussing financial concerns with her team. Another participant described administrative delays: “I would apply and never hear back, so I would call and the organization would need more information. It is taking forever.”

Patients who felt least comfortable talking about money were also the least informed about available relief. Roughly one-quarter (24%) had no confidence they could find programs to reduce their cost burden, while 23% lacked confidence in planning for unexpected healthcare costs or finding financial resources for everyday needs.

To bridge these communication gaps, the researchers recommended structured financial training for clinic staff, using CF Foundation educational modules and center-wide workshops so care teams can proactively connect families with financial relief.