We’re calling on the Government to address Creon shortages

The term ‘enzymes’ is used throughout this blog to refer to all types of PERT. 

The most common PERT is Creon, but other forms include Nutrizym and Pancrex. The continued supply issues have been a deep source of worry and frustration for the CF community.

Most people with CF in the UK need some kind of pancreatic enzyme replacement therapy (PERT) and we’re aware that the supply issues are having widespread and varying impact on the CF community. 

We recently asked you to share your personal experiences with us to give us a detailed view of the current situation. Your responses add powerful evidence to support and guide our ongoing campaigning activity, while ensuring we are providing the most useful information to support the community during this period of uncertainty.

Nearly 750 people with CF along with their families and carers from all across the UK completed our survey and we’d like to say a huge thank you to everyone that took the time to take part. Each response describes the personal impact that the reduced availability of these essential treatments is having on the health of people with CF. 

It’s deeply concerning, but sadly unsurprising, to see the toll this situation has taken on our community. 1 in 2 told us that they had experienced digestive issues, such as bloating and diarrhoea, and 1 in 5 told us that they have been losing weight due to Creon shortages, being unable to absorb fats and certain medications such as Kaftrio. This reinforces our critical message: that enzymes, such as Creon, are not a ‘nice-to-have’, they are a non-negotiable for people with CF.  

The shortage of this basic medicine, which I need to digest food properly, has been a nightmare. I've had to skip meals to avoid the side effects of not taking the medication, I've spent hours every month trying to find supplies and traveling to get them when my pharmacy hasn't had any stock, and it’s impacted how my other medications work.

Our recent survey results

Our findings also confirm what we’ve heard loud and clear from the community - that the impact extends beyond just physical health. 4 in 5 shared that the ongoing challenges have left them feeling stressed and anxious. Although this was felt higher among the 8% of respondents who said they’d completely run out of enzymes – even those who had been able to get some enzymes recently described the stress and anxiety caused by the uncertainty of future supply.

It has been a needless source of stress. Life with CF is challenging enough and this is just one of many, many medicines I take! I took it for granted that enzymes would always be there (I can't remember a me before them) and to have the possibility of running out hanging over me was surprisingly distressing.

Something needs to be done urgently to resolve this issue as it is very stressful thinking about having to cope with the digestive issues I experienced before being prescribed PERT.

The additional pressures forced upon people are also sobering. 54% have needed to travel further or make more frequent trips to get enzymes, and of these, 90% said that they’d experienced increased travel costs. 21% spent an additional 4 or more hours per week finding and collecting their supply.

I had to travel for 3 hours to my CF centre to pick up 1 tub of Creon 10k as that was all they could spare for outpatients.

…it has been incredibly stressful for us as parents spending hours phoning round dozens of pharmacies and travelling for miles to collect what little stock they have.

Renewed call to the Government 

It is crucial that the Government finds lasting solutions to resolve and alleviate the impact of supply issues. With 43% of respondents describing the situation as having had a ‘significant’ or ‘severe’ impact on their health and wellbeing; it is clear that the measures that have been taken by the Government to date are not enough.  

The Government needs to step up and sort this out immediately. This is people’s lives this is affecting.

Cystic Fibrosis Trust is issuing a renewed call to the Government to urgently establish a medicines shortages taskforce, with an immediate focus on developing a national action plan for addressing and resolving PERT supply issues. 

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

How you can help: write to your MP

It's important to ensure that politicians in Westminster are aware of interruptions to supply in medicines and your experiences. The more they are aware of the challenges their constituents face, the more they will raise awareness of this in Parliament. 

Find out who your MP is and contact them [parliament.uk]

Make sure you copy us in, using the email address [email protected].

We've put together a template letter you can use to get started with writing to your MP. Your MP will be more likely to respond to a personal letter, so make sure to include some information about why you need to take enzymes, and how the enzyme shortages have impacted your life.

Download our template letter to MPs

If you’re unable to access Creon via your pharmacy, you should speak to your CF team before you run out as they may be able to order directly from the distributor.  You can also call the free Viatris customer support line for information about supplies of Creon in your area on 0800 808 6410.

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