Should more be done to inform patients of shortages?

soupdragon said:
Apparently part of the problem is increased demand for lean rather than fatty pork! Presumably because pigs fed on a lower fat diet produce less lipase.
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All I can say is that I do my bit to help out. Always buy the fattiest belly pork or chops or steaks and I hunt through the bacon packs for the fattiest ones.
 
rebrascora said:
All I can say is that I do my bit to help out. Always buy the fattiest belly pork or chops or steaks and I hunt through the bacon packs for the fattiest ones.
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Surely that’s the point of pork, it’s fatty and juicy and yummy. Lean pork is so dry you can’t chew it!
 
How do they get the jelly in pork pies with lean piggies?
It was the bit I really disliked before I stopped eating meat but still not a proper port pie without the jelly.
 
I had some pre- filled pens originally and used one out of a box of five. The GP changed me onto the re-fillable pens with vials. I gave the remaining four unused pens back to the surgery, but was surprised when they told me they would throw them out as they had left the clinic.
I think Brexit is to blame for these shortages. There were benighted to being in the EU.
 
You'd really hope that the new govt has a grip on this.

Just digging a bit, I see that the Creon license holder Viatris was making noises last year about exiting the UK market for some (unspecified) products, based on lack of profitability. https://www.reuters.com/business/he...ial-drugs-uk-without-changes-drug-2023-03-02/

I see no indication that Creon is one of these products. But on the other hand, Creon is a small part of their portfolio - in 2023, USD $305M in global sales out of total $15.4 billion total across all products, so around 2%, Losing all UK Creon revenue would be a rounding error for them.

A relevant risk factor discussion, from their 2023 annual report:

In the EU, U.K. and some other international markets, the government provides healthcare at low cost to consumers and regulates pharmaceutical prices, patient eligibility and/or reimbursement levels to control costs for the government-sponsored healthcare system. These systems of price regulations may lead to inconsistent and lower prices. The availability of our products in some markets at lower prices undermines our sales in other markets with higher prices. Additionally, certain countries set prices by reference to the prices in other countries where our products are marketed. Thus, our inability to secure adequate prices in a particular country may also impair our ability to obtain acceptable prices in existing and potential new markets and may create the opportunity for third party cross-border trade. In addition to the impacts of these government-sponsored healthcare systems, in the EU, U.K. and other international markets, certain governmental agencies have enacted, or are considering enacting, further measures to decrease the costs of providing healthcare, including government mandated price reductions and/or other forms of price controls, including retrospective “clawback” price reductions.


Anyway, I'd say that putting Viatris in the reputational crosshairs is warranted in public campaigns and messaging. Make them risk feeling reputational pain more severe than just piddling lost Creon revenue.

Abbott too: they contract manufacture for Viatris, and there is some buck-passing in Viatris' statements. Govt: "We are doing our best to get info from and resolve issues with ..." => Viatris: "We are doing our best to get info from and resolve issues with ..." => Abbott.
 
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See some of us could cut our carbs down if we knew about the shortages, not that we should have to but people do elsewhere in the world where they pay for insulin.
And we are told not to stockpile for various reasons but this sort of issue makes me want to over order just to be sure I have it. I can’t can’t make to novorapid and changing in the past has made me very ill.
Scares me so much.
There must be a way that manufacturers tell someone who could tell patients. And it should be a legal requirement of supplying this type of medication.

But in short there should be something done about it!
 
I wonder if the reason they don't forewarn people is that some people will try to stock pile and make the problem worse quicker as a result. It does make you feel more vulnerable when you hear about these issues.
I wonder if it might be possible for some people to go abroad to get some Creon (perhaps whilst on holiday) to tide them over. Obviously not everyone can afford to do that but if it is an NHS contract issue with Creon, then at least there should be access to it abroad. Of course, you probably would not want to risk travelling once you have run out, so perhaps something to consider for those who need it as 2026 is a very long time to be without supplies.
 
I still haven’t heard back from the GP surgery. Mr Eggy has been Googling for Britain! We thought we might be able to buy it, but although lots of digestive supplements pop up there isn’t any Creon, and I need to ask the GP’s advice on what alternatives I can try. I’m going away tomorrow for a couple of days, not abroad unfortunately, Chester, and I’m trying not to think too much about eating out. I will either have to “ break the bank” and dose normally or make very careful choices about what to eat, or not. I’m not sure about the going abroad to get it, although I’m going to Madeira in October so will take my prescription as I always do anyways, surely they’d only be able to give me my usual four tubs anyways. And goodness knows what it would cost! But I’ll keep trying.
 
@eggyg It might be worth taking your prescription with you to Chester and hawking it around the pharmacies there in case one of them still has a little bit of stock left on a shelf somewhere. Probably not what you want to spend your time doing on an away trip I know, but just a thought. As you say, it is still likely to be a drop in the ocean compared to what you need. Really feel for all you Creonistas and hope something gets sorted sooner rather than later. I wonder what is going to happen in 2026 to change the situation. Could it be that the manufacturer's NHS contract is due for renegotiation then. I imagine they will have a very strong hand to negotiate a higher price with so many people absolutely desperate for it.
 
I'm sure you've seen the shortage alert but fwiw: https://www.cas.mhra.gov.uk/ViewandAcknowledgment/ViewAttachment.aspx?Attachment_id=104177

Have you tried contacting the unlicensed importers mentioned in that? Can't hurt to try!

The following specialist importers have confirmed they can source unlicensed PERT preparations (please note there may be other companies that can also source supplies):
The enzyme composition of unlicensed imports may differ from UK licensed products; please refer to corresponding Summary of Product Characteristics for specific product information.
•
Alium (PANCREAZE® Delayed-Release Capsules)
•
Durbin (Zenpep® Delayed-Release Capsules)
•
Mawdsleys (Creon®)
•
Smartway (Creon®)
•
Target (Creon®, PANCREAZE® Delayed-Release Capsules, Zenpep® Delayed-Release Capsules)

The linked position statement from various expert bodies has some detailed advice tho maybe not adding much value for you: https://www.psgbi.org/media/resourc...Patient_Advice_Version_3_24th_June_2024_1.pdf
 
rebrascora said:
@eggyg It might be worth taking your prescription with you to Chester and hawking it around the pharmacies there in case one of them still has a little bit of stock left on a shelf somewhere. Probably not what you want to spend your time doing on an away trip I know, but just a thought. As you say, it is still likely to be a drop in the ocean compared to what you need. Really feel for all you Creonistas and hope something gets sorted sooner rather than later. I wonder what is going to happen in 2026 to change the situation. Could it be that the manufacturer's NHS contract is due for renegotiation then. I imagine they will have a very strong hand to negotiate a higher price with so many people absolutely desperate for it.
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That crossed my mind actually. I can always ask.
I wondered how they know it’ll be resolved by 2026. It’s a bold statement to make. Money and politics as I said. :(
A very kind forum member has offered me some but I’ve told them to hang on to them for now.
 
Eddy Edson said:
I'm sure you've seen the shortage alert but fwiw: https://www.cas.mhra.gov.uk/ViewandAcknowledgment/ViewAttachment.aspx?Attachment_id=104177

Have you tried contacting the unlicensed importers mentioned in that? Can't hurt to try!

The following specialist importers have confirmed they can source unlicensed PERT preparations (please note there may be other companies that can also source supplies):
The enzyme composition of unlicensed imports may differ from UK licensed products; please refer to corresponding Summary of Product Characteristics for specific product information.
•
Alium (PANCREAZE® Delayed-Release Capsules)
•
Durbin (Zenpep® Delayed-Release Capsules)
•
Mawdsleys (Creon®)
•
Smartway (Creon®)
•
Target (Creon®, PANCREAZE® Delayed-Release Capsules, Zenpep® Delayed-Release Capsules)

The linked position statement from various expert bodies has some detailed advice tho maybe not adding much value for you: https://www.psgbi.org/media/resourc...Patient_Advice_Version_3_24th_June_2024_1.pdf
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Thanks Eddie. I’m waiting for GP to get back to me to see what they think about these alternatives. It could be my only option.
 
eggyg said:
Thanks Eddie. I’m waiting for GP to get back to me to see what they think about these alternatives. It could be my only option.
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Fingers crossed!
 
I'm hitting the same problem and I've already got some alternatives on my prescription list. None of which seem to be available. The Pharmacy suggested I contact my hospital consultant as hospitals should have supplies. As my cancer treatment was spread across three health boards and several hospitals not entirely sure where to start but guess its time to start getting those calls in.
 
Yesterday we reluctantly cancelled our forthcoming holiday to Madeira in October. The balance was due at the end of the month so we only lost the deposit. I can’t possible go if I can’t get any Creon and we would lose more and more money the longer I wait. We were going half board, which isn’t something we usually do, but we thought we’d treat ourselves for a change. But I just can’t chance it and I don’t want to spend over £2k to just sit in my room because I’m too scared to go out. We’re very sad about it as Madeira is somewhere we’ve never been and we were looking forward to getting some good walks in. We’re going to book a cottage in the UK instead nearer the time, that way I can cater for myself and know exactly how my body will react and plan accordingly.
I still haven’t had any word from my GP, I rang last Monday and someone was supposed to get back to me. I’m going to chase it today. @Eddy Edson kindly forwarded me some links re the shortage and there’s some advice on there on what to do if I do run out. Apparently us pancreatectomy patients should be top priority along with CF patients. I’ll point that out to my GP, when or if he ever returns my call.
 
Oh @eggyg - that’s really sad news about your holiday :(

It doesn’t feel like these shortages are getting anything like enough attention, and the tone of the financial commentary in Eddy’s post above is just horrific, “Well, if we can’t price-gouge and charge unlimited amounts for everything, there’s no point in us even supplying these items essential for your life”
 
eggyg said:
Yesterday we reluctantly cancelled our forthcoming holiday to Madeira in October. The balance was due at the end of the month so we only lost the deposit. I can’t possible go if I can’t get any Creon and we would lose more and more money the longer I wait. We were going half board, which isn’t something we usually do, but we thought we’d treat ourselves for a change. But I just can’t chance it and I don’t want to spend over £2k to just sit in my room because I’m too scared to go out. We’re very sad about it as Madeira is somewhere we’ve never been and we were looking forward to getting some good walks in. We’re going to book a cottage in the UK instead nearer the time, that way I can cater for myself and know exactly how my body will react and plan accordingly.
I still haven’t had any word from my GP, I rang last Monday and someone was supposed to get back to me. I’m going to chase it today. @Eddy Edson kindly forwarded me some links re the shortage and there’s some advice on there on what to do if I do run out. Apparently us pancreatectomy patients should be top priority along with CF patients. I’ll point that out to my GP, when or if he ever returns my call.
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Blah!

Have you tried the hospital route - do you have a hospital-based team?

(Looking at the alternative suppliers, their usual business seems to be supplying hospitals with unlicensed drugs.)

I still think it wouldn't hurt trying to contact those suppliers directly - chances are you'll get the brush-off, but on the other hand maybe you'll find a kind soul who can give you some intel about where to find supplies.
 
everydayupsanddowns said:
Oh @eggyg - that’s really sad news about your holiday :(

It doesn’t feel like these shortages are getting anything like enough attention, and the tone of the financial commentary in Eddy’s post above is just horrific, “Well, if we can’t price-gouge and charge unlimited amounts for everything, there’s no point in us even supplying these items essential for your life”
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I know, all about the money and politics. 😡
 
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