2022 Cystic Fibrosis In America Findings: Hope for the Future, Honoring the Present
Last updated: December 2022
In our 3rd Annual Cystic Fibrosis In America Survey, 345 people shared how the future of CF is hopeful and their goals feel more attainable with treatment advances. However, their present pain is real and can be constant. CF is expensive to manage and treat, and both people living with CF and caregivers are most interested in finding out about new CF medicines and the latest research.
CF pain is chronic and constant
Survey results show that 7 in 10 people with CF experience pain at least a few times a month. They wish others understood that while CF can be an "invisible illness," it is chronic and constant while unpredictable. One respondent described the pain as "it comes and goes, but it’s there every day").
Changes in CF outlook
For adults living with CF, there is continued concern about CF progression, which can dampen hopefulness. However, many feel certain life goals (marriage, employment, children) are more attainable with recent treatment advances.
Finding balance: Efficacy and cost
Efficacy and doctor recommendation are top treatment decision factors for CF. Results show 94 percent of respondents rating efficacy as extremely important, followed by 79 percent rating doctor recommendation as extremely important. While Trikafta does check that efficacy box for people with CF who are eligible and currently taking the medicine, fewer people rate it as affordable.
The 3rd Cystic Fibrosis In America Survey was conducted online from March 2022 through July 2022. The survey was completed by 345 people, 230 people living with CF and 115 caregivers.
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