Creon shortages: “It’s just another thing patients with cystic fibrosis could do without”

Summary

There is a current shortage of Creon, a pancreatic enzyme replacement therapy, which is expected to last until 2026. In this blog for the hub, Sophie, a patient with cystic fibrosis, tells us about her experience of trying to get hold of Creon and the challenges she has faced.

Content

The absurdity of everything is best digested with a little knowledge. I take Creon 25,000, 2–3 tablets every time I eat (or have fatty drinks), averaging 15 tablets a day. And if these tablets are not taken… then I can say goodbye to two days due to severe stomach ache and uncontrollable toilet troubles! Hence the misery at the idea of not having a supply.

My start to the journey of no Creon was walking into my usual chemist and them saying: “sorry we don’t have any”. I was like “eh?” To which they replied: “you need to go and try somewhere else”.  I asked them for my prescription back, but because it had been made with other items on it, and these had been prescribed, I couldn’t have this one back!

I then thought, instead of getting another prescription straight away, I would visit all the chemists in my local area—we have about four chemists in a 4-mile radius—to see if they had any in stock, but only for them all to say they had also run out. Then one pharmacist asked: ”can you tolerate the 10, 000 instead of the 25, 000?”. I was fine with that as long as I got some tablets. However, then the battle began with my GP, because a prescription for Creon had already been prescribed (even though not dispensed) and they told me I couldn’t have another until next month. And that was that, even with explanation, the computer said no. So, I asked to speak to someone who dealt with prescriptions. I was put in for a call the next day where I explained my situation. I was treated like a patient that knew nothing and likewise I was thinking the same about them for not being informed, which of course didn’t help. By the time they gave me a prescription for 10, 000 over 24 hours had gone and, yes you’ve guessed it, now these supplies had gone too.

At this point I rang my cystic fibrosis team to ask them what was going on. They informed me there was a national shortage but kindly sent Creon through to my local chemist for me to pick up.

Realising that this wasn’t going to be fixed any time soon, I decided that I needed to help myself here.

My usual prescription is for 10 pots (one pot is 100 tablets) of 25, 000, so I asked the GP surgery to give me two prescriptions of five so I could at least go out and try different chemists. I have learnt all sorts of new words and meanings, like the ‘spine’ (where a prescription can be recalled from one pharmacy and called into another) and ‘digital bar code prescriptions’ (a text with a series of digits so I could just hand this over to the pharmacy). These little tweaks made the hunting process a little easier.

This new routine became every month—hunting for more tablets; finding shortcuts by ringing chemists beforehand to see if they had the stock in.

In the early days I had rung one chemist that was over 20 miles away who said they had stock … When I arrived, they said yes we have three. I was elated and handed over the barcode to which they came back out and said: ”this prescription is for five packets”. I said “yes, it’s ok I can take just the three”. They look confused and said “no we only have three tablets”, which is not even one meal’s worth! I had driven over 30 minutes to get to the chemist; the frustration was real.

I knew I could contact my cystic fibrosis team, but they had the same issue as of course they were dealing  with many patients with cystic fibrosis in the same situation, so I continued hard to find pharmacists in my area.

The one positive was seeing the charity Cystic Fibrosis Trust recognising the challenges and publishing the helpline details for Viatris (the company that distributes Creon in the UK). It meant that I could then ring them and find out where they had distributed stock and drive there. But of course, the pharmacist couldn’t hold the medication until I got there with the prescription, so this has become quite stressful—the relief of finding stock, but then travelling there thinking I am racing against another cystic fibrosis patient to get these drugs and feeling horrible that I have to be so selfish.

The battle continues every time my supplies get low. I have to brace myself to start the process again, for either the arguments with the GP for more prescriptions, the disappointment of nowhere local having any stock, and the travel and time taken out just to get them.

This has eased a little since the start of the problem—not necessarily the stock shortage, but at least everyone knows the problem and so is a little more understanding. I can get a prescription early, I request this on its own so I can move it from one chemist to another if I have to, and then keep them dotted around with different chemists and wait for stock to arrive.

I’ve been told the problem will be here until 2026, which is still so far away. It’s just another thing patients with cystic fibrosis could do without!

Statement from Cystic Fibrosis Trust

Clare Corbett, Director of External Affairs at Cystic Fibrosis Trust, said:

“Pancreatic enzyme replacement therapy (PERT) are vital medicines for people with cystic fibrosis, and the shortages have caused significant upheaval and worry with people forced to travel large distances to get hold of tablets, change their diet or skip meals. Following campaigning by Cystic Fibrosis Trust and the whole cystic fibrosis community, the situation has improved, but we know that some people are still experiencing difficulties accessing the supplies they need. We continue to meet regularly with government, manufacturers and pharmacists to ensure that everything is being done to address and reduce the impact of shortages. The latest updates are on our website and you can also contact our Helpline team.”

More on Creon supply updates from Cystic Fibrosis Trust: www.cysticfibrosis.org.uk/what-is-cystic-fibrosis/cystic-fibrosis-care/treatments-and-medication/creon-supply-update

Join the conversation

Have you (or a loved one) ever been prescribed medication that you were then unable to get hold of at the pharmacy? 

• Was there an impact on your health (physical and mental)? 
• Were you told the reason for it not being available? 
• Was the issue resolved? If so, how long did it take?If you are still impacted by medication supply issues, have you been told when you will be able to access them again?

To help us understand how these issues impact the lives of patients and families, please share your experience and insights in our community forum. You'll need to register with the hub first, its free and easy to do. Or you can email us at [email protected].

Related reading on the hub:

• Medication supply issues: Mast cell activation syndrome (MCAS)
• Medication supply issues: A pharmacist’s perspective
• Medicines shortages: minimising the impact on patients (a blog by Catherine Picton)