At the Cystic Fibrosis Foundation, we are committed to improving health outcomes and experiences so that no person goes undiagnosed, every person has access to a treatment for the underlying cause of their disease, and each person’s care is tailored to their needs. The research highlighted here helps inform our work to ensure that every person with CF has the opportunity to live a long, fulfilling life. 

Starting CF Care 

Early diagnosis and timely connection to multidisciplinary care can have a lasting impact on an individual’s health. Newborn screening helps diagnose infants with CF and start care sooner, which is associated with better nutrition, an increase in lung function, and delayed chronic Pseudomonas aeruginosa infection. When multidisciplinary CF care is delayed, people with CF may miss opportunities to help prevent or slow some of the most serious disease complications. 

• Delayed diagnosis: All 50 states and the District of Columbia screen newborns for CF, but screening methods can differ from state to state, including some that test only for the most common CF-causing mutations. This may make early diagnosis less likely for people with rarer mutations. As a result, infants of color with CF are disproportionately diagnosed later than non-Hispanic white infants.
• Global diagnostic access: People in low- and middle-income countries more often lack access to essential diagnostic tools, which can delay diagnosis of CF.
• Delayed first evaluations: Infants of color with CF are often older when they are first evaluated at a CF care center and have poorer nutritional outcomes than non-Hispanic white infants.

Staying Connected to CF Care

Managing CF requires consistent access to specialized, multidisciplinary CF care, supportive resources, and healthcare environments where people can fully engage in their care. This is critical to staying healthy with CF and can help improve quality of life and extend life expectancy. 

• Access to care: People with CF in low- and middle-income countries often lack access to specialized, multidisciplinary care.
• Affording care: People with CF who have any financial burden are eight times more likely to delay or skip care compared to those without financial burden. People with CF and their families can face financial burdens regardless of income level.
• Food insecurity: More than three-quarters of people with CF who live below the federal poverty line reported that they experience food insecurity.
• Engagement barriers: Black and Hispanic people with CF describe navigating systemic biases in healthcare — such as longstanding misconceptions that CF only affects white people — along with limited representation and challenges that can impact trust in healthcare settings.
• Transplant approval: People of color with cystic fibrosis who face certain social and economic challenges are less likely to be approved for lung transplants.

Differences in Health Outcomes

Research shows measurable differences in health outcomes across the CF community. These findings help identify where more attention, resources, or action may be needed to support better outcomes for all people with CF.

• Experiences of Hispanic people with CF: Hispanic people with CF have an increased risk of Pseudomonas, lower lung function, and a higher rate of death than non-Hispanic white populations.
• Social and economic factors: Certain social and economic factors, including food insecurity and lower income, are associated with poorer outcomes in weight, lung function, healthcare utilization, and survival in children with CF.
• Sex-based factors: The female sex is associated with worse clinical outcomes and decreased life expectancy in people with CF when compared to the male sex.  

Effective CF Treatments

All people with CF need treatments that address the underlying cause of the disease. CFTR modulators have transformed care for many, but not everyone can benefit from or access these therapies. It’s possible to delay or prevent serious complications from CF, especially when treatment is done early. which is why the Foundation is working to advance additional approaches, including treatments that address the CFTR gene.

• Low representation in clinical trials: In 29 studies that reported race and ethnicity, Hispanic and Black people with CF made up only 2% and 1% of participants, respectively, despite comprising a larger portion of the CF population.
• CFTR modulator access and availability:
  • Among people with CF born between 2021 and 2025, half are predicted to live to age 66 or beyond. However, this does not reflect individual variability. The median survival is lower — by approximately two decades — for those who are ineligible for CFTR modulators.
  • Black people with CF are the least likely to have CFTR mutations that respond to current modulators that address the underlying cause of cystic fibrosis. Hispanic people and people of other races are also less likely to be eligible for modulators than white, non-Hispanic people.
  • People with CF who cannot take modulators because they don’t work for their mutations, they can’t tolerate them, or they can’t access them continue to face severe disease and poorer mental and physical health-related quality of life compared to those taking modulators.
  • Lack of access to CFTR modulators in certain low- and middle-income countries has led to inequities in health outcomes globally.

The CF Foundation's Efforts

The research highlighted here helps guides the Foundation’s work to advance health experiences and outcomes for all people with CF, with a focus on:

• Delivering more effective treatments to more people by investing in the science and innovation needed to ensure that future breakthroughs benefit everyone with CF
• Meeting the evolving health needs of people with CF so they receive the right care, at the right time, in a supportive environment — and advocating for affordable access to that care