Missing out - Cystic Fibrosis Trust calls for urgent access to latest diabetes tech
Despite already living with a life-long life-limiting condition, people with cystic fibrosis (CF) who also have CF diabetes, do not have consistent access to hybrid closed loop systems, a technology that has shown powerful improvements in health and quality of life for people with type 1 diabetes.
What is cystic fibrosis diabetes?
People with CF experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body. When this build up occurs in the pancreas it causes scarring which prevents it from producing insulin properly.
When the pancreas can’t produce enough insulin, blood sugar levels rise and this can lead to CF diabetes, a form of diabetes that is different to but has features of both type 1 and type 2 diabetes.
What are Hybrid Closed Loop systems?
Hybrid closed loop (HCL) systems link continuous glucose monitoring (CGM) with insulin pump technology to monitor blood glucose and automatically adjust the amount of insulin given through a pump.
This avoids the need for insulin injections, and means the insulin given is calculated more precisely.
The system has transformed the lives of people with type 1 diabetes by keeping blood sugar levels steadier, improving diabetes control and reducing the risks associated with low blood sugar.
Why are people with CF diabetes missing out?
Current NHS guidance states that closed loop systems are recommended for those with type 1 diabetes. Although CFD shares features of type 1 diabetes, it is different from type 1 and people with CFD cannot access HCL systems on the same basis.
A small change – a big impact
Latest data from the UK CF Registry identifies 2,327 people with CF receiving treatment for CFD. Making the technology available to this group, who are already managing the tough realities of CF would represent a tiny addition to the overall population of approximately 480,000 people with type 1 diabetes who already have access to HCL systems.
Cystic Fibrosis Trust is calling for equitable access to HCL systems to improve the quality of life for those living with CFD.
People with CF diabetes should not be excluded from beneficial technology simply because their diabetes isn’t classified as type 1. We are calling on governments and health services across the UK to establish clear, funded routes to access hybrid closed-loop systems for people with CF diabetes who could benefit.
David Ramsden, Cystic Fibrosis Trust CEO
For many people with cystic fibrosis, life is too hard. They never get a day off and may spend hours every day taking medicine or doing treatments to remain well. This burden is huge, and anything that can help lift this limit will make a big difference to quality of life.
Joseph's story
Sophie’s story
Sophie, 23, was diagnosed with CFD at the age of 16. She explained, “I felt like I’d been thrown in the deep end. I was just told I have CFD and I would need to take injections. Up to this point my CF was very well managed and I took pride in keeping myself well and keeping up my care routine.
"I suddenly had to have so much focus on everything I was eating and doing. I didn’t know who to go to for support. The diabetes team didn’t understand why I couldn’t limit my diet (because of my CF), and my CF team didn’t know me very well as I’d just changed from paediatric to adult care.
"I then developed an eating disorder because I was so focused on calories and carbs. I gained weight and my body was changing and I wasn’t happy with it. I wasn’t taking my insulin as I should and was limiting my diet. I thought if I didn’t have any carbs, I wouldn’t have to take it. I’m still getting treatment for this today. I’m also currently in the process of trying to fight my corner about getting an insulin pump.
"For me it would be a big weight off my shoulders. It would remove the anxiety I feel about what’s going on inside my body and I could be reassured my body is being looked after by the pump."