Journal of CF Highlights Cost Burden Prevalent in the Cystic Fibrosis Community

Two-thirds of people with cystic fibrosis in the U.S. experience debt, food insecurity, or housing issues.

Feb. 21, 2023 | 4 min read

In an article published last month by the Journal of Cystic Fibrosis about the acute, pervasive cost burden people with CF and their families experience, results from a 2019 study showed that two-thirds of people with cystic fibrosis in the United States experience debt, food insecurity, or issues paying for housing and other health services. The Cystic Fibrosis Foundation commissioned the study to understand how people with CF pay for their care, and what tradeoffs are made to ensure access.

The Foundation uses research such as this to inform our work to address and ease the financial burden many people with CF face. This includes our advocacy for high-quality and affordable health care coverage, support for CF care center, initiatives to champion patient experience and help make daily care sustainable, efforts to address social determinants of health, CF Foundation Compass, and community support programs.

In 2019, researchers from George Washington University surveyed more than 1,800 people with cystic fibrosis. (The survey was completed before the approval of Trikafta® and the COVID-19 pandemic.)

Income is the most significant risk factor for financial burden. However, even those at the highest income levels confronted financial limitations that forced them to make tradeoffs in other aspects of their lives to protect their care and treatments.

“Cost burden is not unique to the CF community, though people living with cystic fibrosis have become an example of the unsustainable financial responsibility placed on people living with a chronic rare disease,” said Anne Willis, senior director of health system innovation and navigation at the Cystic Fibrosis Foundation. “Because of advances in care and treatment, people with CF are living longer and healthier than ever before, fundamentally changing what it means to live with the disease. This progress cannot be jeopardized because of unacceptable cost burden.”

Health insurance is critically important to people with CF 

Despite near-universal health care coverage — with more than 90% of people with CF insured for the entire year — 74% of those surveyed utilized financial assistance or grant programs to cover or offset their health care costs. The survey also showed that 84% of people with CF report that their insurance poses at least one limitation in their access to care.  

  • 45% of respondents report delaying or forgoing care due to cost  

  • 10% of respondents skipped a routine visit to their CF care center  

  • 7% of respondents experienced a gap in insurance coverage 

  • 74% of respondents who experienced a gap in coverage also reported skipping a medication dose, taking less medicine than prescribed, or delaying filling a prescription due to cost

People with CF routinely make tradeoffs to manage the financial burden 

Sixty-five percent of respondents reported that their concerns about insurance status have affected major life decisions such as switching jobs, getting married, or moving to another state   

  • 71% of respondents reported at least one financial issue resulting from the high costs they face 

  • 39% of respondents were contacted by collection agencies    

  • More than 50% of respondents put off a major purchase due to medical bills 

  • 25% of respondents have had issues paying for basic needs such as utilities, rent, or mortgage payments due to health care costs 

  • 39% of respondents reported using most or all of their savings

Social factors pose significant barriers in the cystic fibrosis community 

In addition to tradeoffs that impact quality of life, a substantial portion of people with CF struggle to afford basic necessities such as food and transportation.   

  • 33% of respondents experienced some type of food insecurity, three times the national average 

  • 20% of respondents reported that they were unable to afford the balanced meals recommended by their CF care team 

  • 10% of respondents reported that the cost of transportation prevents care center visits  

If you have concerns about your financial situation, we encourage you to reach out to Compass by calling 844-COMPASS, emailing, or submitting an online request form.

We acknowledge that financial issues are often a difficult subject and would like to thank all of those in our community who graciously shared their experiences to help inform how we can better serve you and your needs. 

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