Alarm over shortage of life-saving cystic fibrosis drugs | UK | News

10 year-old Oscar Watts desperately needs his Creon pills (Image: handout)

Anxious parents have told the Daily Express of an NHS medicine supply crisis – as they desperately hunt supplies of a life-saving drug cystic fibrosis (CF) sufferers must take with every meal. 

CF causes sticky mucus to clog up the lungs but also clog up tiny tubes in pancreas, meaning it cannot release crucial enzymes that release all the nutrients in our food. 

Creon replaces that missing enzyme but 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. 

Now families have told us they are travelling for miles up and down England to different pharmacies hunting stocks of the vital supplement, due to a recent alarming shortage. 

Ten year-old Oscar Watts, of Ampthill, Beds, takes around seven Creon tablets per meal but his parents have found them so hard to come by, they been travelling to London pharmacies just to source a week’s supply.

Mum-of-two Michelle Watts, 44, told the Daily Express: “It’s a nightmare!

“We’ve been getting the prescription for Creon and taking it to pharmacies and not getting the necessary amount – literally leaving with just a few days’ or a week’s worth.

“Then we have to get another prescription and go out searching for pharmacies that might have more. My husband recently had to travel into London just because he saw some chemists there had a few boxes.

“There is still no Creon at our local pharmacy which is so worrying. We have some now just because Oscar had a hospital appointment this week and while there we able to ask the CF unit for some.

“But I’ve no idea what we will do if this carries on. Clearly there is an issue with the supply chain but no-one seems to know what’s gone wrong.”

The Daily Express first featured Oscar in campaigns for NHS access to life-saving CF drugs – and some patients on wonder drug Kaftrio have seen their pancreas issues vanish.

10 year-old Oscar Watts exercises to boost health

10 year-old CF sufferer Oscar Watts exercises to boost his health (Image: handout)

There are over 11,500 CF sufferers in the UK and around 8,000 are on Kaftrio – but sadly many have found despite the miracle drug, they still need to keep taking Creon. 

Creon 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. 

Mother-of-three Chantelle Atarinejad(ok), 35, and partner Bekim Bashkurti(ok), 39, of Harpenden, Herts, also have had to drive for an hour into London – to Great Ormond Street Hospital – just to source Creon for their 10 year-old son Rezart(ok). 

Businesswoman Chantelle told us: “Rezart has been very fortunate with his lung health and is very sporty, playing football four times a week – but CF really does affect his digestive system badly. 

“His doctors have suggested he move on the 25,000 dose but said not yet – because that does is more scarce at the moment where we are. 

“I normally get a month’s supply on prescription at a time as we need to make sure Rezart always has some pills on him in case he has a snack, and that his school also has some – but recently that’s been hard to do. 

“CF sufferers are on a high calories diet anyway due to the inefficiency of their body in absorbing nutrients and fats – and that’s with Creon. 

“If he didn’t have Creon he would lose weight fast and that would cause a trickle-down effect of other serious issues such as being prone to infections.”

A report by the industry body Community Pharmacy England reveals that of nine out of the 10 pharmacies surveyed in England, around 6,000 in total, had seen a significant increase in medicine supply issues in the past year. 

Chief Executive Janet Morrison said: “For some patients, not having access to the medicines they need could lead to them needing to visit A&E.” 

Drug companies alert the government when they expect a supply problem. The number of alerts has doubled since 2020, rising from 648 that year to 1,634 in 2023.

CFer Oscar Watts with family

10 year-old CF sufferer Oscar Watts with his family (Image: handout)

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. 

Their third-party manufacturing partner Abbott, in Germany, warned them of a “global supply constraint” of Creon, due to “high global demand and reaching maximum manufacturing supply output.” 

A Viatris spokesperson added: “Due to this, our third-party manufacturing partner’s current production is unable to meet all demand.  

“In the UK, Creon strengths 25,000 and 10,000 are in constrained supply. However, our current expectation is that during this period of constraint, we will be able to meet the majority of demand. 

“Creon is a biologic product made using a complex manufacturing process. Given this complexity, the local supply status may vary during this period of constrained supply. 

“Plans to reduce the constraints and increase capacity are underway. Viatris and Abbott entered a long-term strategic initiative to increase the supply output of Creon, which has already been started.” 

A Department of Health and Social Care spokesperson told us: “We are aware of supply issues affecting Creon and are working with the manufacturer to help resolve them. These supply issues do not only affect the UK. 

“We have issued comprehensive guidance to healthcare professionals about these supply issues, which provide advice on how to manage patients whilst there is disruption to supply.

“This guidance is being kept under review and updates will be made, as necessary. We advise any patient with concerns to speak to their clinician.”

10 year-old Oscar Watts and family

Little Oscar enjoying a break with his mum, dad and older sister (Image: handout)

But the situation has become so alarming, patient representative body the Cystic Fibrosis Trust have even created a special web page on Creon shortages – to help advise patients. 

It read: “We’ve been monitoring issues with Creon supplies across the UK since late 2023, when some people with CF, their families and clinicians began experiencing short-term interruptions in supply. 

“This has caused significant worry and stress for those affected who have sometimes needed to travel to multiple pharmacies to find Creon, a vital medicine.” 

While David Ramsden, Chief Executive of CF Trust, told the Daily Express: “People affected by CF are having to spend hours phoning pharmacies or visiting in person, and in some cases are even reducing their food intake, because they can’t access vital medicines. 

“Manufacturers and the Government must ensure that all steps are being taken to address these shortages and provide clear updates and advice to avoid risks to health.”

How can I study when I can’t digest food?

Budding vet Maisy Pilloli-Wall, 21,

Budding student vet Maisy Pilloli-Wall, 21, can’t source her Creon anywhere (Image: handout)

EXCLUSIVE 

VETERINARY student Maisy Pilloli-Wall has told Daily Express readers how her struggles to find Creon at pharmacies all-round the UK has left her anxious, worried and stressed – when she should be studying. 

Maisy, 21, if from Nottingham but is currently on her third of six years studying to be a vet at the Royal Veterinary College (RVC) in London and usually takes around 25-40 Creon 10,000-dose tablets a day. 

But she has struggled to source them, explaining: “As I am a student, I have pharmacies in both London and Nottingham. 

“Before I came back to University for my final 2024 term, I had completely run out of Creon, as I had been waiting for four weeks to get my hands on some. 

“I’ve been having extreme issues with my Creon dosage recently, so have been moved onto the 25,000, but I still had some 10,000 just in case. 

“After four weeks of using the last of my 10,000, and promised I would have more 25,000 before I had used all of my stores, I went to the Wolfson CF Centre in Nottingham after my Nottingham pharmacy said they still had no Creon. 

“I got an emergency prescription and supposedly a ‘months-worth’ of Creon. But it was one bottle of 100 tablets – yet I was needing up to 40 tablets a day, so one bottle was not a month’s supply at all. 

“After kindly explaining this to the pharmacist, they gave me one more bottle – so once again it was a waiting game. 

“I’m back in London now, and for the past three weeks I’ve been here with no Creon, waiting on some from my second pharmacy.

“As a student this has tampered with my degree – as you can imagine it’s hard to focus when I can’t eat, or digest, the food that gives my brain power and body energy. 

“It’s an appalling situation, and I feel so sorry for those in even worse scenarios – sadly my situation is mild compared to the dire struggles of some of my CF peers.”

Student vet Maisy Pilloli-Wall, 21, with animals

Student vet Maisy Pilloli-Wall, 21, with animals on a farm placement (Image: handout)

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