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Our work on Creon shortages

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In this blog, we talk about the work that the Trust is doing to ensure policy makers understand how important Creon is to the health of people with CF, and that all steps are being taken to address and reduce the impact of shortages. 

Most people with CF in the UK need some kind of pancreatic enzyme replacement therapy (PERT). This is essential to help control symptoms such as bloating and diarrhoea and to absorb fats, oils, fat soluble vitamins and certain medications such as Kaftrio. The most common PERT is Creon, but other PERTs include Nutrizym and Pancrex. 

In recent months, we’ve seen worrying fluctuations in the availability of Creon across the UK. Many hospital and community pharmacies have struggled to maintain their usual supply, leading to increased demand for alternatives like Nutrizyme and Pancrex. Supply issues have now become more severe, prompting the Department of Health and Social Care (DHSC) to implement a Medicines Supply Notification specifying that access should be prioritised for those who need Creon the most, including  people with CF. 

What’s causing the shortage?

The production of Creon relies heavily on pancreatic enzymes sourced from pigs. Viatris, the distributor of Creon, has told us that a shortage of these raw ingredients is straining the manufacturing process and disrupting global supply chains. 

A global push for leaner pigs has resulted in fewer available enzymes, making it harder to meet demand and requiring increased manufacturing capacity.

Viatris is working with its manufacturing partner to boost Creon production, but this is not expected to have an impact until 2026. There are still regular shipments of Creon coming into the UK, but as the amount coming in is less than what is needed, this presents challenges for ensuring that Creon is distributed to the parts of the UK where shortages are most acute. 

Unfortunately, we’ve already heard troubling reports of people having to adjust their diets and nutrition due to these shortages.

Our response

The Trust and CF clinicians, dietitians and pharmacists are working hard to ensure that the impact of shortages of Creon on the health and wellbeing of people with CF is minimised.

We’re meeting regularly with Viatris and the NHS to ensure that all possible measures are being taken to resolve these issues. We’ve written to the Secretary of State for Health, calling for better communication to the community about what is happening, as well as long-term solutions, including research into alternative enzyme sources and new product development to reduce dependency on current raw materials.

Prescribers and pharmacies are being asked to prioritise people who are most in need and to prescribe a maximum of one month supply for all patients at a time, though in some cases pharmacies will only be able to prescribe less than this, eg one or two weeks supply, depending on availability. CF dietitians have also developed specialist guidance for their prescribers, dietitians and patients for managing diet and health whilst the issues are ongoing.  Please do speak to your CF team if you have any concerns about your health.

We need your support to raise vital awareness about the impact of these shortages. Visit our general election hub to find out how you can engage with your local  parliamentary candidates and have your voice heard.

We won’t stop until everyone with CF has access to the medications they need. 

Need support?

If you need more information or support regarding the current issue with Creon, or any aspect of cystic fibrosis, please contact our Helpline or visit the Creon hub on our website. Lines are open Monday–Friday, 10am–4pm.

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