Access to hybrid closed-loop insulin systems for people with CF diabetes
People with CF diabetes (CFD) face significant challenges managing their blood glucose levels. Yet they cannot access hybrid closed-loop insulin systems on the same basis as people with type 1 diabetes.
We are calling for the NHS in England, Scotland, Wales, and Northern Ireland to extend access to hybrid closed-loop insulin systems for people with CFD.
Hybrid closed-loop systems combine continuous glucose monitoring and insulin pump therapy. Evidence in type 1 diabetes shows that these systems have transformed treatment and quality of life, while reducing the risks associated with low blood glucose.
Why people with CFD need better access
Cystic fibrosis (CF) is a serious, lifelong, life-limiting condition. It can damage the pancreas, reducing its ability to produce insulin. This can lead to CFD, a distinct form of diabetes that can be particularly difficult to manage.
Insulin requirements in CFD can be highly variable, which makes it harder to predict blood glucose levels and adjust insulin doses.
For people already managing the daily demands of CF, the additional burden of managing unpredictable blood glucose levels can be substantial. Access to hybrid closed-loop systems would help to alleviate these challenges.
A third of adults with CF have CFD. Latest CF Registry figures identify 2,327 people with CF receiving treatment for CFD. This would represent a tiny addition to the overall population of approximately 480,000 people with type 1 diabetes who already have access to hybrid closed-loop pumps.
Living with CFD: the "rollercoaster" of blood glucose management
I got diagnosed with CF diabetes when I was 11 years old. I’d describe it as like constantly being on a rollercoaster. It’s juggling what I eat with how much insulin I’m giving myself – sometimes it feels like half mental maths and half guesswork!
Annabelle, who lives with CF diabetes
Sometimes the rollercoaster is going up and you end up going really high and that makes you feel ill. Sometimes the rollercoaster goes really low and that makes you feel ill. And then sometimes you’re straight in the middle, which is great, but that doesn’t happen all the time.
The difficulty with CF diabetes is the unpredictability of it. I could eat the exact same thing one day and have an amount of insulin, and I’d be fine. And then I can eat the exact same thing another day and have the same amount of insulin and be off, because sometimes our bodies do release insulin and sometimes they don’t.
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What is cystic fibrosis diabetes (CFD)?
Cystic fibrosis (CF) is a genetic condition affecting over 11,000 people in the UK. You are born with CF and cannot catch it later in life. One in 25 of us carries the faulty gene that causes it, usually without knowing.
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. This prevents the pancreas from producing insulin properly. When the pancreas can’t produce enough insulin, blood sugar levels rise and this can lead to CF diabetes (CFD).
CFD is different from type 1 and type 2 diabetes but has features of both. Most people with CFD have insufficient endogenous insulin and require additional insulin, titrated against blood sugar levels. In addition, many have a relative and variable insulin resistance. Blood sugar control is further complicated by pancreatic insufficiency, where the pancreas does not produce enough digestive enzymes leading to variable absorption of nutrition. Respiratory exacerbations triggered by repeated infections and continuous or intermittent steroid use also complicate blood sugar control. Access to hybrid closed-loop systems would help to alleviate these challenges.
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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 to people living with diabetes.
Evidence has shown that hybrid closed-loop systems improve diabetes control and quality of life whilst reducing the risks associated with low blood sugar in people with type 1 diabetes.
HCL technology is available to people with type 1 diabetes across the UK. Read more about the NHS's implementation strategy on the NHS England website.