A charity has launched a new fundraising appeal to investigate links between cystic fibrosis (CF) and diabetes – and why CF sufferers are five times more likely to develop bowel cancer.
CF is a life-limiting genetic condition caused a fault gene which controls the movement of salt and water in and out of your cells, meaning sticky mucus dangerously clogs up your lungs and bowels
The Cystic Fibrosis Trust has found that almost a third of sufferers over the age of 10 will develop CF diabetes (CFD) – and are also more likely to develop bowel cancer and heart disease than the general population.
Now the CF Trust is looking to raise £750,000 to help fund a new Strategic Research Centre to investigate the link between the condition and these other serious diseases.
Professor Steve Renshaw, a CF Trust funded scientist, respiratory physician and Head of Medicine at the University of Sheffield, said: “It’s becoming clear that as people with CF get older, they have an increased risk of developing other life-threatening diseases such as heart disease, cancer, and diabetes and we need to better understand why this is.
“There is a clear link between cystic fibrosis and an increased risk of bowel cancer and if our lab studies prove our approach is effective, we hope to launch further research to test existing drugs targeting these pathways in a clinical trial.
“This could mean in future we have a simple and easily affordable treatment to help people with CF spend more time with their loved ones.”
People with CF are five times more likely to develop bowel cancer than the general population, and this risk increases to 30 times more likely following a transplant. Although, the risk of an individual with CF developing bowel cancer still remains low.
Research has also found that people with CF and bowel cancer had an average age of diagnosis of 52 years, which is significantly younger than in people without CF, which is an average of 73 years.
Urgent research is needed to understand the cause of this increased risk, and why it affects people with the condition so heavily.
Dr Lucy Allen, Director of Research at Cystic Fibrosis Trust, said: “We hope that this new research can address one of the most pressing factors of an aging CF population, which is the increased risk of cancer and other life- threatening diseases.
“We urgently need support to help raise funding for this new research, which we hope will one day help us prevent the risk of bowel cancer in those with cystic fibrosis, and create a future without the limits of CF.”
CF sufferers have been facing a particularly difficult time in the last six months after a bombshell preliminary ruling potentially meant newly-diagnosed, child patients would be denied life-saving drugs.
For years the Daily Express fought for UK patients to access US drug firm Vertex’s miracle CF tablets like Kaftrio and in the summer of 2020 families celebrated when a deal was done to make them available on the NHS.
But last autumn the National Institute for Health and Care Excellence (NICE), who approve drugs for NHS use, dropped their bombshell draft guidance saying despite the treatments being hugely effective, their ‘list price’ was too high to allow future patients to start taking them.
The ruling does not affect the around 8,000 of the UK’s 11,000 CF sufferers who are already taking the treatments but could affect newborn babies diagnosed who are as yet too young to take the medication.
Recently NICE announced they are “pausing publication of final draft guidance” to allow for further discussions between NHSE and Vertex – and it is hoped they can agree a deal to allow all UK CFers to have access to the wonder drugs.
* To help the CF Trust and to donate visit: https://www.cysticfibrosis.org.uk/donate
