For the second year in a row, Health Union has surveyed people living with cystic fibrosis, as well as caregivers for people with cystic fibrosis, to better understand the wants and needs for patients with this condition. Cystic Fibrosis In America, a syndicated research study from Health Union, goes beyond basic demographics and symptoms to establish a deep understanding of the holistic patient journey for those affected and to track trends over time.

With 634 total respondents, made up of 404 patients and 230 caregivers, the second annual Cystic Fibrosis In America reveals that many people living with CF are hopeful and optimistic, yet the future is unknown. 65% of respondents note that the increase in life expectancy gives them hope* and 55% feel optimistic about the long-term success of their treatment plan,* yet 43% are concerned about their future due to CF,* and 39% cite that CF has had significant negative financial impact across their journey.*

*Top 2 box on a 7-pt scale

Open-ended responses divulge that with increased life expectancy comes an increased need for resources:

“Over the years, the cost of living and caring for CF has left me with not a lot. I am now on Medicaid which thankfully pays my medical bills but I am not allowed to earn enough money through work to afford my living costs. Very irritating, just can’t ever find a way to be financially secure and comfortable.”
– Survey respondent living with cystic fibrosis

“Since patients are living longer, more info needs to be gathered and shared on aging with CF.”
– Survey respondent living with cystic fibrosis

Cystic-Fibrosis.com is just one of Health Union’s condition-specific online communities, which provide people living with chronic conditions the information, connection and validation they seek. Our continuous immersion in the patient experience delivers smarter insights and implications–so you can spend your time developing the strategies that will make a difference.