Inside desperate hunt for lifesaving drugs as pharmacy crisis hits cancer patients

Cancer patients and people living with cystic fibrosis are among thousands affected by shortages of life-sustaining medicines.

Over the past year, UK pharmacists and those on the frontline of the NHS have warned of the devastating impacts of drug shortages.

Hundreds of medications have become hard or impossible to obtain. They include drugs for serious conditions including Parkinson’s, Alzheimer’s, ADHD, pancreatic cancer and cystic fibrosis.

Millions of people also face shortages of common migraine, diabetes and acne medicines.

In November, pharmacists told The i Paper they are running out of money as the sector is on the verge of collapse.

Many said they had already started closing at weekends and reducing weekday opening hours, forcing patients to wait longer and travel further for prescriptions.

‘Supplies are dangerously low – I spend hours chasing it ‘

Cancer patients and people living with cystic fibrosis are among thousands affected by the shortage of a life-sustaining medicine they depend on to digest food and absorb vital nutrients from it.

Michael Harvey, 72, from Northallerton, North Yorkshire, was diagnosed with pancreatic cancer in 2017. Following successful treatment he was prescribed pancreatic enzyme replacement therapy (PERT).

There has been a shortage of PERT for more than a year, but it has intensified recently, with patients saying is the worst they have ever experienced, and pharmacists reportedly breaking down as they are forced to ration customer’s medicines.

Mr Harvey takes eight capsules of Creon – a form of PERT – before every meal and four before every snack. It means he requires 800 per month.

However, he said supply issues have been at their worst ever in the past 12 months, and he now hands in prescriptions with “hope rather than expectation”.

He has struggled to get his complete prescription fulfilled recently, with pharmacists telling him they cannot get hold of Creon because of a national shortage.

Retired biology teacher Mark Rixon has also spent days chasing Creon in around where he lives in Dover, Kent, after experiencing the shock of finding out it was not available.

The 64-year-old has had to travel up to 10 miles to a pharmacy in Folkestone and return to his oncologist for a prescription that could be fulfilled by a hospital pharmacy.

Mr Rixon said: “Ringing around can take half an hour, but then driving somewhere and finding it that would take another half an hour or so – it depends where it is.”

The situation is frustrating but he tries not to get stressed and upset about it as that would only make things worse, he added.

Diana Jupp, CEO of Pancreatic Cancer UK, said: “Thousands of people affected by pancreatic cancer rely on taking PERT tablets every time they eat simply to digest their food and absorb nutrients – something most of us take for granted.

“That they are having to take desperate measures which can put their health, wellbeing and their eligibility for treatment at risk is totally unacceptable.”

Pharmacists breaking down in tears as pills are rationed

Mr Harvey has changed pharmacies multiple times, made a 25-mile trip to Sedgefield in Durham, and accepted rationed capsules just to get by.

He said: “After various delays and my supplies dangerously low, I went to the pharmacy attached to the doctor’s surgery, who said, ‘Yes, we have some, but not as much as we’ve ordered. So we’re having to ration it.’”

The pharmacist was only able to provide him with 200 capsules – the equivalent to a week’s supply.

Desperate to get hold of the capsules, Mr Harvey contacted his gastroenterologist, who was able to prescribe them.

But when he went to collect the medication, a pharmacist at South Tees Hospital told him they were also rationing Creon and could only provide him with a further 200.

“I resent the hours that I have to spend chasing what is a life-sustaining drug,” Mr Harvey said.

“What really upset me through all of this was seeing pharmacists in tears because they had to administer the rationing of the shortage of supply. And a pharmacist or a pharmacist assistant shouldn’t be put in that position.”

Patients’ care delayed so they can’t leave hospital

To help address medicine shortages, Community Pharmacy England is urging the Government to consider giving community pharmacists greater authority to make quantity, strength or formulation changes to some medicines without requiring prescriber approval.

However, it may not be appropriate for pharmacists to substitute certain PERT preparations as they contain different amounts of pancreatic enzymes.

Janet Morrison, chief executive of Community Pharmacy England, told The i Paper that the medicine supply situation is worsening, and severely affecting patients and pharmacy teams across the country.

Drugs across a range of clinical and therapeutic areas are being affected by daily supply disruptions, she added. “Supply chain issues are causing delays in patient care and putting extra financial pressure on pharmacies.

“We are calling for more action to protect patients and pharmacies from these ongoing disruptions. Patients should be able to access the medicines they need when they need them.”

There is also a knock-on impact on hospitals, according to Dr Ajay Verma, a consultant gastroenterologist based in Northamptonshire. He said it could contribute to patients spending longer in hospital.

“It is delaying their care, whether their care is in the community or in hospitals. The fact that one of the most important drugs we give them is not readily available does impact on things,” he said. “It’s a contributory factor in slowing down their discharge.”

Distributors set up emergency phone line

A number of reasons are cited for PERT shortages. Distribution of Creon has been disrupted due to demand for the medicine outstripping supply of the raw ingredient – enzymes from pigs’ pancreas.

With patients moved to another treatment, Nutrizym, due to Creon shortages, there has not been enough of the former to keep up with increased demand.

Dr Verma said: “The point is, with these shortages, the emails [notifications to NHS staff] never tell us the reason.”

Viatris, the UK distributor of Creon, said it was notified by its third-party manufacturing partner, Abbott, of “a global supply constraint of Creon”.

A spokesperson for Viatris said “constrained supply” was due to “high global demand and reaching maximum manufacturing supply output”, adding: “Creon is a biological product that is made using a complex manufacturing process.”

Viatris has set up a phone line for customers in response to the issue.

It recommends anyone experiencing difficulties obtaining Creon from their regular pharmacy “try an alternative pharmacy or ask your regular pharmacist to try another wholesaler”, and speak to their doctor to “discuss treatment options”.

Although it acknowledges there are issues with supply, Viatris maintains it is currently in stock of all marketed strengths of Creon, and is receiving a continuous supply of Creon from manufacturer Abbott.

The i Paper contacted Abbott for comment.

Government patient safety alert

The Department of Health has issued a patient safety alert in response to limited supplies of PERT. Serious shortage protocols (SSP) have also been issued for Creon 25000 and 10000 capsules.

Although these do not permit pharmacists to give patients an alternative PERT brand such as Nutrizym, only a reduced quantity of Creon.

“If I’ve got a prescription for Creon and the pharmacy hasn’t got Creon but has Nutrizym, I can’t get the Nutrizym with the Creon prescription, I have to go back to the doctor and say, ‘can you give me a prescription for Nutrizym,” Mr Rixon said.

Ms Jupp said government has not made enough progress on addressing the issue.

“For over a year we have been discussing the shortages with Department of Health and Social Care officials and PERT suppliers, urging them to prioritise finding solutions that reduce the impact on patients. But not enough progress has been made.

“We need strong leadership from the new UK Government and a national approach to ensure that PERT is available when people need it.

“It is critical that they take a more active role and explore all possible means to increase supply, including directly purchasing this vital medication from countries with a surplus. This situation cannot be allowed to continue.”

The i Paper contacted the Department of Health for comment.