Cancer survivor issues desperate plea for lifesaving medication

A pancreatic cancer survivor from Misterton in Somerset has issued a plea to the Government for lifesaving medication. Iain Rowland is calling on the Government to urgently address medication shortages.

Pancreatic enzyme replacement therapy (PERT) is as vital for people with pancreatic cancer as Insulin is for people with diabetes, helping them to digest food and absorb nutrients every time they eat. Not taking it can leave them less able to tolerate treatment, with poorer quality of life and at risk of starvation.

Iain, 78, was diagnosed with pancreatic cancer in 2003. Fortunately, the cancer was successfully removed by surgery, but he is now dependent on PERT to digest food and absorb nutrients and must take multiple tablets with every meal.

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Before the shortage, he typically took six tablets a day, with his prescription lasting him a month, but now he’s having to limit his intake.

Iain said: “Hopefully, by drastically altering my diet, I might be able to survive for a couple of months from the remaining pills I have. However, what happens if at the end of that couple of months I can't get the pills again?

“It makes me feel frustrated. Just hearing 'we haven't got any'.

"It's not good enough. What am I meant to do?

"Many of the healthcare professionals or receptionists I speak to do not realise what PERT is and how important it is to people like me. They don't appreciate the seriousness of the situation.

"I worry about what happens after I go on the low-fat diet, and it doesn't work? What if I get all my symptoms back again?

"I definitely wouldn’t be able to leave my house. It's important we get the message out there, put pressure on those who need to get off their backsides and do something, so that these medicines are back in the system.

"The lack of communication, knowing there was a shortfall, really frustrates me. Now I have to do the running around when other people should be doing it.”

A new survey by Pancreatic Cancer UK shows that 70% of people affected by the disease are taking desperate measures to cope with the shortages. Supplies of the tablets to the UK have been disrupted for over a year and this could last until at least 2026.

The charity estimates the shortages could be affecting at least 61,152 people across the UK, as people with cystic fibrosis, chronic pancreatitis and neuroendocrine cancers also rely on PERT. Pancreatic Cancer UK surveyed 572 people affected to understand the impact of shortages. It found that 82% of people have struggled to obtain their usual PERT prescription on more than one occasion, 19% have frequently gone without taking PERT and 71% are taking a lower dose of PERT than they need or have altered their diet.

The consequences of going without or not taking the correct dose of PERT can be very serious: people may become too unwell to have surgery (the only potentially curative treatment); less able to tolerate harsh treatments such as chemotherapy; or struggle to manage debilitating symptoms, diminishing their quality of life. Nearly three-quarters (73%) of those surveyed said their ability to manage their symptoms had become more difficult.

They reported experiencing diarrhoea (47%), nausea (25%), and vitamin deficiency (27%). The shortages have also had a negative impact on mental wellbeing, with half of those surveyed saying they felt significantly more stressed, anxious or worried.

People affected by the disease must take multiple PERT tablets every time they eat. Disrupted supply to their local pharmacy is forcing people to travel outside their local area (30%) or enlist the support of family and friends (19%) to help them find alternative supplies.

Such is the level of uncertainty, over a quarter (28%) of those surveyed said that they would consider taking PERT offered to them from a non-medical source, which is unsafe. Pancreatic Cancer UK is calling on the new Government to develop a national action plan to address PERT shortages and the ongoing impact on patients.

The charity wants to see a taskforce - similar to the successful Vaccine Taskforce established during the COVID-19 pandemic – deliver the plan and lead a national effort to import more PERT into the UK to meet demand. Production problems at the main plant supplying the UK mean that the shortages could last until at least 2026.

Pancreatic Cancer UK has published its own five-point plan here to address the issue after consulting with patients, medicine suppliers, health professionals and other charities:

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.”