Many with inoperable pancreatic cancer are not prescribed cheap-but-essential medication

A University of Birmingham-led study has found almost half of people diagnosed within inoperable pancreatic cancer are not prescribed inexpensive yet essential tablets without which they cannot digest food—placing them at risk of starvation or being less able to tolerate treatment.

In light of the research findings, charity Pancreatic Cancer UK today (Wednesday 26 May) launches its “Transform Lives: Prescribe’ campaign, urging the NHS to ensure everyone who could benefit from the tablets, known as Pancreatic Enzyme Replacement Therapy (PERT), are prescribed them at the point of diagnosis.

As pancreatic cancer grows, it stops the pancreas producing enzymes needed to digest food and absorb nutrients. PERT tablets are therefore essential to help patients eat, stay healthy enough to tolerate treatment and to manage debilitating symptoms from the cancer—including pain, diarrhea and extreme weight loss.

The new research, due to publish in journal Pancreatology and partly funded by Pancreatic Cancer UK and Midland Gastroenterological Society, was led by a team from the University of Birmingham and Midland-based NHS hospital Trusts. It involved an audit of the records of 1,350 patients with pancreatic cancer between April and August 2018 in the UK.

The research team, part of the RICOCHET Study Group, found huge variation in prescription rates for PERT across 84 NHS hospitals (59 non-specialist and 25 specialist surgical hospitals).

The study found that of the patients who had been diagnosed too late to have surgery (the only cure for the disease), just 45% were prescribed PERT tablets. Meanwhile, of those whose cancer was deemed operable, 74% were prescribed PERT.

Around 9,900 people are diagnosed with pancreatic cancer per year in the UK, and sadly for 80 percent of them it is too late to have surgery. The disease’s vague symptoms, such as back-pain and indigestion, mean it often goes undetected until after it has already spread.

Pancreatic cancer has the lowest survival of all the 20 common cancers, with less than seven percent of people with the disease surviving beyond five years after diagnosis in the UK, and survival rates having improved very little since the early 1970s.

The cost of PERT for one person per day is approximately £7, although the exact cost will vary depending on the number of tablets taken, the supplier of PERT and the dosage. PERT is not new and is already recommended for people with pancreatic cancer by the National Institute for Health and Care Excellence (NICE).

Mr Richard Wilkin, Clinical Lecturer at the University of Birmingham and corresponding author of the research, said: “Our important research has highlighted that, despite national guidance, there is a wide variation and under-treatment with Pancreatic Enzyme Replacement Therapy (PERT).

“This is a very simple tablet that allows patients with pancreatic cancer to absorb their food and is a vitally important part of their treatment.

“Given that most patients with pancreatic cancer cannot be treated with surgery and are treated in non-surgical hospitals, where prescribing is lowest, strategies to disseminate best practice and overcome barriers to prescribing are urgently required.”

Pancreatic Cancer UK is deeply concerned by the low prescription rates uncovered by this latest research, but especially that so many people with incurable pancreatic cancer are not being given the medication—which could not only improve their quality of life, but also help them tolerate life-extending treatment.

Health professionals’ lack of awareness of PERT tablets appears to be the most significant reason why they are not prescribed more frequently. The majority of those with a terminal diagnosis are more likely to be treated by health professionals who do not specialize in the disease and have lower awareness of PERT tablets and their benefits.

Marie Morris, aged 44, has seen the devastating impact of the disease. Her mum, Josephine, was diagnosed with pancreatic cancer at a late stage and was never prescribed PERT tablets. Josephine was offered six cycles of chemotherapy to prolong her life but she managed just two before being unable to tolerate anymore. She lost at least two stone in weight from being unable to eat due to the cancer. Frequent vomiting meant she struggled to drink or even swallow painkillers. Josephine died in April 2020 just seven months after diagnosis, aged 73.

Marie said: “It’s hard to see somebody who’s confined to a bed and who can’t eat anything without vomiting. In full health and fitness, she weighed about nine-and-a-half stone. A couple of stone off that, it makes quite a dramatic difference. By the end she was skeletal. There was nothing left, really. Maybe PERT would have made a difference to the length of her life—but perhaps more importantly—also to the quality of her life.”

Through its Transform Lives: Prescribe campaign, Pancreatic Cancer UK is urging the NHS across all four nations to implement targets to make sure people with pancreatic cancer are prescribed PERT tablets routinely. Currently more than half of people with pancreatic cancer die within three months of diagnosis. They cannot afford to wait for essential medication and the charity is asking the public to support the campaign by signing its open letter calling for change:

Diana Jupp, CEO of Pancreatic Cancer UK, said: “Nobody should have to watch someone they love waste away from pancreatic cancer when proven, inexpensive medication is available to stop that from happening. It needs to become second nature to see people with pancreatic cancer and prescribe PERT tablets, in the same way an immediate link is already made between diabetes and insulin. They are just as vital.

“Health professionals care for people with pancreatic cancer with great skill and compassion year after year, but many will typically see patients with this devastating disease far less frequently than other types of cancer. People diagnosed with pancreatic cancer cannot wait for the expertise of specialist cancer hospitals to be shared naturally to other parts of the health service.

“We need targeted action now across the NHS to raise awareness of PERT tablets and ensure everyone who needs them is prescribed them—regardless of whether or not their cancer is curable. A simple prescription could give so many people with pancreatic cancer more—and better quality—time with their loved ones.”

Keith Roberts, Pancreatic Subspecialty Lead, Royal College of Surgeons of England said: “People with heart, lung or kidney failure would not be left untreated, but far too often pancreas failure is. This leads to very predictable problems namely weight loss, abdominal cramps and lack of ability to undergo treatment. Pancreas enzyme replacement therapy is simple and corrects this.”