Latest cystic fibrosis data highlights realities of the lifelong condition with no cure

Cystic fibrosis (CF) has seen significant progress in treatment and care over the last few years, meaning the CF population has grown in size and is aging. There are over 11,300 people with CF living in the UK. Latest figures show that over 65 per cent of all people on the Registry were aged 16 or older, with more than 260 people aged 60 or over. 

Yet there still remains no cure. In 2024, median predicted survival estimates that half of people born today will live to at least 66 years old. But half may die before this age, with CF still having life expectancy much lower than the general population.

Cystic fibrosis is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food. 

And, though today’s report reveals positive trends in improving lung function, and a decrease in those receiving IV antibiotics, 1 in 5 people are still regularly needing these treatments. 

The report also reveals that over 85% of those with CF used a CFTR modulator therapy during 2024, after a decade of campaigning for access to the medicines. Yet some people are still unable to benefit from these treatments. 

CF also carries a large treatment burden – we know from our 2024 Your Life and CF survey that on average, people with CF take 34 tablets a day, though some people take more than 100. In 2024, more than 27% of people living with CF were also dealing with treatments for CF-related diabetes and almost 1 in 4 (23%) of adults were living with liver disease, an increase of 5% since 2019. Most (80%) people with CF are prescribed a pancreatic enzyme supplement, and many live with gut conditions such as gastro-oesophageal reflux disease (GORD) and Distal Intestinal Obstruction Syndrome (DIOS).

There are also an increasing number of adults with higher BMIs, where in the past many people with CF struggled to put on the weight they needed to stay fit and well. These changing health needs continue to pose a challenge for those living with the condition, and those treating it.

Paul, who has CF and is in his 70s, said: “When I was younger there was no such thing as adult CF patients. There were no adult clinics. I had to go to the children’s clinics... By the time I was 18, mostly everyone I knew from the CF clinic and hospital had sadly passed away. I felt like the last man standing and found it quite difficult mentally. I felt like I wasn’t supposed to live that long.”