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Pancreatic cancer patients must travel up to 40 miles to neighboring towns and cities in a desperate attempt to find a life-extending treatment while others often go without due to drug 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 depend on to eat, digest food and undergo chemotherapy. Pancreatic Cancer UK said PERT is as important for people with pancreatic cancer as insulin is for people with diabetes.
Ultimately, patients need the drug to digest their food. The drug helps control bloating and diarrhea and helps the body absorb fats, oils, fat-soluble vitamins, and certain medications. PERT is also essential for patients with cystic fibrosis.
In recent months, supply of PERT, branded Creon and Pancrease, has dried up due to limited availability of raw materials and constraints on production capacity to produce the volumes needed to meet demand.
Campaign and support groups have said so a global push for lean pigs has resulted in fewer available enzymes, making it more difficult to meet demand and requiring greater production capacity.
A patient survey by Pancreatic Cancer UK highlights the desperate measures people are having to take to cope. More than seven in ten people (71 percent) told the charity they take less PERT than necessary to keep their supply going for longer or adjust their diet.
One in five (19 percent) has often not taken their medication, despite the serious consequences this can have for people’s health. A small portion of people (7 percent) have even gotten PERT from a non-medical source, which health experts say is not only unsafe but also illegal. Some patients share supplies via social media, either a surplus they have or leftovers from a loved one who has passed away.
Others have bought enzymes online without a prescription that don’t contain the right components to be effective, according to Pancreatic Cancer UK. As a last resort, others have purchased medications from abroad without knowing exactly what is in the medication.
Nearly a third of people told Pancreatic Cancer UK they had to travel outside their local area in search of supplies.
Mark Gibson-Bell, from Lewes, East Sussex, was diagnosed with inoperable pancreatic cancer in 2019 during his stay in France. Because the tumor was located on a main artery, he began receiving chemotherapy every two weeks to prevent the cancer from spreading.
However, he was not given PERT until he returned to England last year. By then he weighed just 60kg at 1.80m, which made him less able to tolerate chemotherapy. Since being prescribed PERT, Mark, 57, has put on weight and feels much stronger, but ongoing shortages of the drug across the UK are threatening his quality of life and his ability to continue treatment, a situation that is now affecting his mental health. affects health.
“I now weigh just under 90 kilos and that is all because of PERT and the dietician who prescribed it to me. My quality of life has improved because I am not losing weight. I’m not losing any vitamins,” Mark said.
“Now I only have to go to the toilet first thing in the morning and then I’m fine for the rest of the day. Whereas before PERT I was constantly running to the toilet. I couldn’t really go anywhere. It really cannot be understated how much of a difference PERT has made in my life.
Mark, who worked for a holiday company in France until his diagnosis, said he had no problems getting his tablets until May this year. He takes 12 to 16 a day and his prescription normally lasts about two months.
“The pharmacy told me they were having trouble getting one. I got a couple hundred (at a time),” he said.
“It has become more difficult in the past month; when I last went in I was told they couldn’t get any at all. This caused me to panic as I only had 100 left, and I figured I could continue that until next Wednesday. It did cause a few sleepless nights. I’d be lying and thinking I only have a week left now. What am I going to do?”
Realizing that he could no longer rely on local pharmacies, Mark looked for PERT on the Boots website last week, only to discover that there was none available in Brighton at all and that the nearest place he could get it was Uckfield, a round trip of 39 kilometers. which was a struggle for someone without a car.
“It’s worrying that there isn’t one in Brighton at all,” said Mark. “I shouldn’t have to pay for the bus that takes me somewhere miles away to pick up tablets that I need to live comfortably. Plus, it’s frustrating to get your hands on the recipe. Usually my prescription is sent to my pharmacist, so if it has to go somewhere else because they don’t have stock, he can’t release the prescription because it’s intended for him.
“So I then have to contact the doctors again and ask for a new prescription to send to the new pharmacy that has stock so I can go and pick it up. This can take hours.
“The whole situation is becoming more hopeless. It stresses me out because if I can’t get anything at some point, what should I do? What do I take? What are the alternatives?
“I even felt a bit guilty going to another town to pick it up this week as I would assume the pharmacy in Uckfield has PERT in stock for some reason, someone in that area must have it too need.”
He added: “It’s incredible that something as small as a tablet helps with my digestion, maintains my weight and makes me healthy enough to continue to tolerate chemotherapy, and to lose this would be devastating.”
With more than 61,000 people potentially affected – across the pancreatic cancer, cystic fibrosis and chronic pancreatitis groups – and disruption likely to continue until at least 2026, Pancreatic Cancer UK wants the government to set up a taskforce, similar to the Vaccines Taskforce that has been so successful was during World War II. pandemic, to lead a national effort to import more PERT into Britain. The charity points out that damaging shortages have now persisted for more than a year and that progress in improving supply lines has been too slow.
It has published a A five-point plan to tackle the problem following consultation with patients, drug suppliers, healthcare professionals and other charities, providing both short and long-term solutions, such as reintroducing a stronger PERT capsule into the NHS, to prevent the same situation from happening again.
Diana Jupp, CEO of Pancreatic Cancer UK, said: “Thousands of people suffering from pancreatic cancer rely on taking PERT tablets every time they eat, simply to digest their food and absorb nutrients – something most of us as take for granted. That they have to take desperate measures that could jeopardize their health, well-being and suitability for treatment is completely unacceptable.
“For more than a year we have been discussing the shortages with Department of Health and Social Care officials and PERT suppliers, urging them to prioritize 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 PERT is available when people need it. It is crucial that they take a more active role and explore all possible ways to increase supply, including directly purchasing this essential medicine from surplus countries. This situation cannot be allowed to continue.”
The government has established Serious Shortage Protocols (SSP) for Creon 10,000 and 25,000 capsules to limit prescriptions to a one-month supply to ensure the drug remains in circulation in the supply chain and available to patients who need it. An SSP allows community pharmacists to dispense a specific medicine or device, with the patient’s consent and without the prescriber’s consent.
A spokesperson for the Department of Health and Social Care said: “We know how frustrating and distressing medicine supply problems can be for patients and the pharmacists and doctors who care for them.
“This government has inherited a broken NHS alongside global supply issues that continue to impact the availability of medicines, including Creon, and we are working closely with industry, the NHS, manufacturers and other supply chain partners to resolve the current issues as quickly as possible unload. .”
If you suffer from pancreatic cancer or have questions about your diagnosis, please call Pancreatic Cancer UK’s free specialist nurse support line.
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