Living with cystic fibrosis demands a complex regimen of care and treatment. Across the U.S., managing this care involves navigating a maze of health insurance coverage and significant out-of-pocket expenses. These cumulative — and often overwhelming — costs frequently force individuals and families affected by CF to make difficult financial tradeoffs — decisions that can have profound short- and long-term impacts on health and overall well-being. For many, the burden becomes insurmountable, with expenses driving choices that may jeopardize both health and livelihood.

To better understand these challenges, the Foundation, in collaboration with Dartmouth College and a co-design team of multidisciplinary care team members, people living with CF, and a parent of a person with CF, conducted a survey in early 2024 to assess the scope and impact of health care costs on the CF community and identify support and intervention opportunities. The study’s results showed that though each person’s experience with the disease can look different, the associated burdens (including financial, administrative, and emotional) are universally felt regardless of socioeconomic background (including geography, employment status, income, and insurance coverage).

“Because cystic fibrosis is such a complex disease, the CF community is often one of the first patient populations to feel the impact of the systemic challenges related to affording health care,” said Anne Willis, senior director, Health Systems Innovation and Navigation at the CF Foundation. “Living with a chronic illness like CF will always come with high costs. However, the Foundation’s goal is to help ease some of these burdens. Surveys like this one are crucial in helping us identify the most effective ways to support the community.”

Financial challenges are a widespread reality within the CF community.

• Nearly 70% of people with CF experienced a financial challenge in the last 12 months due to CF-related medical bills.

• Nearly one-third of people with CF are just making or don’t make enough to meet basic living expenses.

• Over half of people with CF (54%) reported being unable to accumulate savings in the last year because of the burden of medical costs.

While nearly all people with cystic fibrosis have at least one form of health insurance, that’s often not enough.

• Almost one-third of the CF community had challenges understanding what they would need to pay for their CF care.

• Nearly 40% had difficulty paying for their insurance.

High health care costs frequently lead individuals with cystic fibrosis to make difficult choices that can negatively impact their care and treatment.

• More than one-third of people with CF delayed at least one aspect of their CF care due to medical bills in the past year.

• Nearly one in five members of the CF community delayed filling a prescription.

• More than 10% skipped doses of medication.

• 15% chose not to undergo a treatment, test, or therapy recommended by their doctor to save money.

Challenges with health care costs often lead to, or are worsened by, other health-related social needs.

• More than one in four people with CF experienced food insecurity in the last 12 months.

• Ten percent of people with CF experienced housing insecurity.

• Nearly 10% of people with CF lack reliable transportation, which may lead to delays in seeing their CF care team.

Different barriers can keep many in the CF community from talking about the financial hardships of CF and seeking support.

• 16% of people with CF felt judged, embarrassed, or ashamed when they pursued financial resources.

• 8% feared negative consequences if they discussed their hardship.

• 30% were unsure what questions to ask their CF care teams about financial challenges.

• One in four did not know where to find the financial resources they needed.

• 17% did not have time to spare to look for financial resources.

Discussing the high costs associated with cystic fibrosis, asking for help, and seeking support can be challenging. However, these conversations are important, and the majority of people with CF state that they are comfortable talking to their care team about financial challenges.

“CF is described as an invisible disease because its physical effects are often unseen. Similarly, the cost burden that comes with the disease is often overlooked and seemingly invisible to most people,” said Isaac Groenendyk, a parent of a child living with CF who served as part of the survey design team. “Understanding the cost burden through this survey is essential to illustrate a more accurate picture of what it’s like to live with CF or to be in a family with CF.”

For more information about the Foundation’s many support services, including Compass, the Foundation’s patient navigation service, visit cff.org.

For questions about the survey, contact sdoh@cff.org.

We acknowledge that conversations around financial hardships are sensitive and the Foundation thanks those in our community who graciously shared their experiences to help inform how we can better serve you and your needs.