2 weeks Ago By Paul Gallagher
Pancreatic cancer patients are having to travel up to 40 miles to neighbouring towns and cities in a desperate bid to find life-extending treatment while others are frequently going without due to medicine shortages, i can reveal. A national shortage of Pancreatic Enzyme Replacement Therapy (PERT) has left entire cities without the drug that people with pancreatic cancer rely on to eat, digest food and cope with chemotherapy. Pancreatic Cancer UK said PERT is as vital for people with pancreatic cancer as insulin is for people with diabetes.
Ultimately, patients need the drug to be able to digest their food. The drug helps control bloating and diarrhoea and helps the body absorb fats, oils, fat soluble vitamins and certain medications. PERT is also essential for cystic fibrosis patients.
In recent months supplies of PERT, whose brand names include Creon and Pancrease, have been drying up due to limited availability of raw ingredients and manufacturing capacity constraints to produce the volumes needed to meet demand. Campaign and support groups have said that a global push for leaner pigs has resulted in fewer available enzymes, making it harder to meet demand and requiring increased manufacturing capacity. A patient survey by Pancreatic Cancer UK highlights the desperate measures that people are being forced to take in order to cope.
More than 7 in 10 people (71 per cent) told the charity they are taking less PERT than they need to keep their supply going for longer or altering their diet. One in five (19 per cent) have frequently gone without taking the medication despite the serious consequences that can have for people’s health. A small proportion of people (7 per cent) have even taken PERT from a non-medical source, which health experts say is not only unsafe but also illegal .
Some patients are sharing supplies via social media, either surplus they have themselves or left over from a loved one who has died. Others have bought non-prescription enzymes online which do not contain the right components to be effective, Pancreatic Cancer UK said. As a last resort, others have bought supply from overseas without knowing what exactly is in the medication.
Almost a third of people told Pancreatic Cancer UK they have had to travel outside their local area in search of supply. Mark Gibson-Bell, from Lewes, East Sussex, was diagnosed with inoperable pancreatic cancer while living in France in 2019. As the tumour was located on a main artery, he started to have chemotherapy every two weeks, to prevent the cancer from spreading.
However, he was not given PERT until he moved back to England last year, by which time he weighed just 60kg at 6’2”, which made him less able to tolerate chemo. Since being prescribed PERT, Mark, 57, has gained weight and feels much stronger, but persistent UK-wide shortages of the drug threaten his quality of life and ability to continue treatment, a situation that is now affecting his mental health. “I am now just under 90 kilos and that’s all down to PERT and the dietician that prescribed me it.
My quality of life has improved because I’m not losing weight. I’m not losing vitamins,” Mark said. “Now, I only need to go to the toilet first thing in the morning and then for the rest of the day, I’m fine.
Whereas before PERT, I was continually running to the toilet. I couldn’t really go anywhere. It really cannot be understated how much of a difference PERT has made on my life.
” Mark, who used to work for a holiday company in France until his diagnosis, said he had no problem getting his tablets until May this year. He takes 12-16 a day and his prescription normally lasts him around two months. “The pharmacy told me they were struggling to get hold of any.
I started being given a few hundred [at a time],” he said. “It has got harder this past month; when I went in last, I was told they couldn’t get any at all. This sent me into a panic as I only had 100 left, and I worked out that would see me through to next Wednesday.
It did cause a couple of sleepless nights. I’d lie up thinking I’ve only got a week’s worth left now. What am I going to do?” Realising he could no longer rely on local pharmacies, last week Mark went on the Boots website in search of PERT only to discover there was none available at all in Brighton and the nearest place he could get it was Uckfield, a 24-mile round trip which, for someone without a car, was a struggle.
“To have none at all in Brighton is worrying,” Mark said. “I shouldn’t have to pay for the bus to get me to somewhere miles away, to collect tablets that I need to live life comfortably. What’s more, getting hold of the prescription is frustrating, Usually, my prescription is sent to my pharmacist, so if it does need to go elsewhere as they have no stock, he can’t release that prescription as it’s for him.
“So, I then have to get in contact with the doctors again, ask for another prescription to send to the new pharmacy that has stock, so I can go and collect it. This can take hours. “The whole situation is becoming more hopeless.
It’s stressing me out because if at some point I can’t get any, what do I do? What do I take? What are the alternatives? “I even felt a bit guilty going to another town to get it this week because I would presume the pharmacy in Uckfield has PERT stocked for a reason, someone in that area must also need it.” Read Next Medicine shortages forced emergency rubber-stamp on 50 drugs in two years He added: “For something as small as a tablet to help with my digestion, to keep the weight on me and that makes me well enough to continue to tolerate chemo is incredible, and to lose this would be appalling.” With more than 61,000 people potentially affected – across pancreatic cancer, cystic fibrosis and chronic pancreatitis groups – and disruption potentially lasting until at least 2026, Pancreatic Cancer UK wants the Government to establish a taskforce, similar to the Vaccines Taskforce that was so successful during the pandemic, to lead a national effort to import more PERT into the UK.
The charity points out that damaging shortages have persisted for over a year now and progress to improve supply lines has been too slow. It has published a 5-point plan to address the issue after consulting with patients, medicine suppliers, health professionals and other charities, which involves providing both short-term and long-term solutions, such as reintroducing a higher-strength PERT capsule into the NHS, to prevent the same situation recurring. 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. “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 government has put Serious Shortage Protocols (SSP) in place for Creon 10,000 and 25,000 capsules to limit prescriptions to one months’ supply to ensure that the drug remains in circulation in the supply chain and available for those patients who need it. An SSP enables community pharmacists to supply a specified medicine or device, with the patient’s consent and without needing to seek authorisation from the prescriber. A Department of Health and Social Care spokesperson said: “ We know how frustrating and distressing medicine supply issues can be for patients, and the pharmacists and clinicians caring for them.
“This government inherited a broken NHS alongside global supply problems that continue to impact the availability of medicines, including Creon, and we are working closely with industry, the NHS, manufacturers and other partners in the supply chain to resolve current issues as quickly as possible.” If you’re struggling with pancreatic cancer of have questions about your diagnosis, you can call Pancreatic Cancer UK’s free specialist nurse support line ..
