Hope for the future Honoring the present

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").

Pain and CF “It isn't debilitating, but it does consume energy that I can't spend doing other more visible/productive things.”“CF is chronic. It worsens over time, despite modulators.” 71% of people with CF experience pain at least a few times a month, Over 40% report joint pain & abdominal pain within the past month

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.

42% of people with CF feel hopeful about their future with CF, VS 57% of caregivers feel hopeful about their loved one’s future with CF. Quality of life, 34% of people with CF are extremely satisfied with their quality of life.

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.

Treatment Effectiveness and accessibility 89% are satisfied overall with Trikafta But fewer find Trikafta affordable, with only 49% satisfied with the cost

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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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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