Cure4CF Update
Ageing in Cystic Fibrosis: A New Chapter with New Challenges
Professor Jodie Simpson, Head of Research, Cure4CF
For many adults living with cystic fibrosis (CF), the idea of ageing is something previous generations never imagined. CF was once considered a life-limiting childhood disease, and families focused on helping children live as fully as possible in the time they had.
Today, thanks to decades of research, improved clinical care, and transformative CFTR modulator therapies, people with CF are living well into adulthood—and beyond. This remarkable progress brings new opportunities: raising families, building careers, travelling, planning for the future, and experiencing milestones that were once out of reach.
But with longer lives come new and important questions. Some reflect the universal experience of ageing; others are specific to the biology of CF, the legacy of lifelong treatment, and the impact of new therapies.
Emerging Age-Related Conditions in CF
Cancer Risks
Research shows that certain cancers—particularly colorectal cancer (CRC) and liver cancer—occur more often, and at younger ages in people with CF. This has led to earlier and more frequent CRC screening recommendations. However, the reasons behind these increased risks are still not well understood. More research is urgently needed to guide prevention, early detection, and management.
Metabolic and Cardiovascular Risks
For decades, a high-fat, high-calorie diet was essential to maintaining weight and supporting lung health in CF. But as nutritional needs evolve and life expectancy increases, this advice is no longer optimal for everyone.
In the modulator era, many adults experience rapid weight gain—and yet there are no updated evidence-based dietary guidelines tailored to the CF population. We are only beginning to understand how metabolism, fat mass, and cardiovascular changes interact with CF, and how best to manage these risks while preserving the benefits of CFTR modulators.
Mental Health and Ageing
Living longer is a tremendous achievement—but it also brings emotional complexity. Adults with CF may experience:
- Anxiety about long-term health
- The challenge of adjusting to a future they never expected
- The cumulative psychological load of lifelong illness
- Concerns about independence and care needs later in life
A strong focus on mental health will be essential to supporting wellbeing in the decades ahead.
Aged Care: Are Systems Ready for CF?
As people with CF age, another critical question emerges:
Are aged-care systems equipped to meet the unique needs of people with CF?
This includes infection control, access to respiratory expertise, pancreatic and gastrointestinal care, and support for complex treatment regimens. At present, little planning has been done to ensure that aged-care pathways are ready for this new generation of older adults with CF.
The Good News: Research Is Leading the Way
At Cure4CF, we know that research is the key to solving the next generation of CF challenges. As people with CF enjoy longer, healthier lives, research must evolve to meet their changing needs.
That is why we are proud to be launching our first colorectal cancer research project in 2026.
A Future Worth Planning For
Ageing with CF represents one of the most extraordinary successes in modern medicine. But it also requires new thinking—new care models, new prevention strategies, and new research.
With continued investment in world-leading research, personalised care, and health systems that can adapt to the needs of an ageing CF population, the next chapter will be defined by empowerment, evidence-based care, and healthier decades ahead.
At Cure4CF, we are committed to being part of that future—because every person with CF deserves the chance to live a long, healthy, and fulfilling life.