Wartime drugs rationing hits UK as NHS faces deadly pills crisis
EXCLUSIVE - The Daily Express highlights the growing crisis for NHS patients trying to source some vital drugs, due to a UK treatments' supply crisis.
A anxious cystic fibrosis sufferer has told the Daily Express how "WWII-style rationing" is sweeping our nation's pharmacies - with supplies of a lifesaving drug appearing to have almost run out.
As well as the lungs, CF causes sticky mucus to clog up the pancreas, stopping it releasing crucial enzymes the body needs to digest fats, proteins and starches - so instead most of the UK's 11,600 sufferers take Creon.
Yet due to a recent "constrained supply" crisis by Creon makers Viatris - blamed on their German third party manufacturer Abbott - European pharmacies, hospitals and clinicians have found Creon hard to obtain.
Now one CF sufferer Marc Cotterill, 42, has told us how he has been waiting for his prescription of Creon since February and now has just one week's supply before he completely runs out for the first time in his life.
Kind-hearted fellow patients with the genetic disease have offered Marc some of their own dwindling pills but it's feared if supplies are not ramped up, the UK could soon see an avalanche of serious health issues not just for CF sufferers but other pancreas patients reliant on Creon.
Business consultant Marc, of Stoke, Staffs, explained: "It is crazy to think that in 21st Century Britain we have patients self-imposing a WWII0-style rationing on their medications due to the sheer scarcity of these vital tablets.
"I take around 25 Creon tablets a day but all I have left now is one last pot of 100 pills. And then that's that. No More. It's a horrible situation that I know thousands across the UK are also in. It's disgraceful this has happened.
"I have tried looking for any supplies across the country and know personally of families who are travelling 100 miles to a pharmacy after hearing they have a few boxes of the pills.
"It is causing fear and anxiety as reducing the dose affects what we eat, and as CF sufferers' health is so linked to our calorie intake and weight this could cause serious health issues.
"How has this happened without alternate sources being found by the health service? I know some people are considering paying £70 to a US firm for one pot of 100 pills. That's not sustainable and outrageous."
We have been highlighting the alarming NHS Creon shortage for months, telling how families are travelling up and down England desperately hunting stocks.
Around 80 per cent of UK CF patients are taking wonder drug Kaftrio - described as being "!like a cure" for many of the genetic disease's worst symptoms.
But Kaftrio only works in the body when taken with a high-calorie meal with fats - and being high in fat that meal needs Creon for the patient to digest it.
When a CF suffer reduces fats in their diet they can easily lose weight, which can then weaken the body and make them more prone to nasty lung bugs, infections and falling gravely-ill.
With the supply shortage biting, some NHS centres have written to CF patients suggesting swapping fatty meals and snacks for low-fat ones - which therefore require less Creon tablets to be taken.
One NHS letter sent to a CF patient that the Daily Express saw read: "If stock remains an issue it may be worth swapping to snacks that do not need Creon for example jelly, sorbet, ice lollies and boiled sweets.
"Alternatively, if you remain hungry with above options you may need to reduce the amount of Creon you take with your normal snacks rather than with main meals.
"Example if you take 2 Creon with a snack then to consider reducing to 1 Creon if really struggling with supply."
We first featured Marc when campaigning for Kaftrio and later featured him thrilled when he finally started taking the wonder drug in March 2020 - dubbed "almost a cure" for the genetic disease - with it hugely boosting his wellbeing.
But now Marc and other CF campaigners feel they are back in another fight for their health due to the increasing scarcity of Creon.
He added: "I put in a Creon prescription with Lloyds Pharmacy in February and I'm still waiting for it - it's worrying and ridiculous.
"When we were fighting for Kaftrio we took Creon for granted as we always had it. But now we have the expensive lifesaving Kaftrio drug and we can't get hold of a simple tub of Creon!
"My CF team at hospital have been great and offered me a pot recently but that's now been used and I'm back to having one pot left.
"I wrote about it on Instagram and was deluged with other sufferers offering me help because that's the wonderful CF community we have here - but then that is impacting them.
"We need the new Government to get a handle on this crisis as soon as possible and work to find a solution to returning and maintaining supplies."
Viatris, which own UK Creon marketing and distribution rights, claim supply interruptions were not due to any safety concerns and they aim to regularly provide us 90–95 per cent of their usual amount of Creon.
However they have refused to explain exactly what has caused the flow of the once plentiful drug to dry up.
Instead they said Abbott warned them of a "global supply constraint" of Creon, due to "high global demand and reaching maximum manufacturing supply output."
They added: "Due to this, our third-party manufacturing partner’s current production is unable to meet all demand."
The Daily Express send Viatris a list of questions last month related to the issues behind the shortages - but they never bothered to respond.
Cystic fibrosis sufferers, their anxious relatives, clinicians and pharmacists are all now hoping new Labour Health Secretary Wes Streeting gets to grips with the Creon supply crisis.
David Ramsden, Chief Executive of Cystic Fibrosis Trust, told us: "Creon shortages are continuing to cause a huge worry for people affected by CF, with some families visiting multiple pharmacies or eating less as they don't have enough supply.
"It’s really important that anyone who can't get hold of Creon via their local pharmacy speaks to their CF team before running out.
"We’re continuing to meet with government and Viatris, the company that distributes the medicines, to ensure that all actions are taken to address this issue and to minimise the impact on people with CF."
While a Department of Health and Social Care spokesperson could only say: "We are aware of supply issues affecting Creon and are working with the manufacturer to ensure that action is taken to help mitigate risks to patients while they address those issues.
"We have provided comprehensive guidance to healthcare professionals about these supply issues and how to manage and advise patients while there is disruption to supply. We advise any patient with concerns to speak to their clinician."
What Is Creon?
By Chris Riches
CREON is the brand name for US drug firm Viatris' pancreatic enzyme replacement therapy (PERT) that helps cystic fibrosis (CF) sufferers and pancreas-failing patients digest the fats, starches and protein in food.
Pancreatic enzymes are mixtures of amylase, lipase, protease and lactase and help patients digest food who may have CF, had their pancreas removed in surgery, suffer long term pancreatitis, or pancreatic cancer.
Factories, in this case Viatris' third-party drug maker Abbott in Germany, use enzymes sourced from pigs to make their PERT products, which are on the World Health Organization's List of Essential Medicines.
In the case of CF, the genetic condition causes sticky mucus to clog up the lungs but also tiny tubes in pancreas, meaning most CF sufferers' pancreases cannot release crucial enzymes to absorb and digest food.
That pancreas inefficiency - even when taking Creon - is why CF patients often are on high-calorie and high-fats diets constantly.
Creon replaces that missing enzyme and without it sufferers would suffer bowel pain and fail to absorb any nutrients, meaning they would dramatically lose weight, fall prone to infections and be gravely ill.
It typically comes in two different dose strengths - 10,000 for children or adults with mild pancreatic insufficiency and 25,000 for adults or those with extreme pancreatic problems.
But Creon has a secondary vital function for people with CF.
There are over 11,500 CF sufferers in the UK and around 8,000 are on CF wonder drug Kaftrio - which helps water down the mucus in the lungs and pancreas and helps keep patients healthier and happier.
The Daily Express successfully helped secure US pharmaceutical giant Vertex's wonder drug Kaftrio on the NHS in 2020 after a long campaign, with the pill hailed by its creators as "almost a cure for CF".
But patients taking Kaftrio - and Vertex's other CF drugs like Orkambi and Symkevi - need to the take the medications with a high-fat meal, recommended around 10 grams of fat, so the body can properly absorb it.
And to digest high-fat meals, CF patients also need Creon. Now patients fear a lack of Creon in Europe could have a trickle-down effect on their life-saving Kaftrio medication - and their long-term health.
