Seven in ten pancreatic cancer patients taking desperate measures to cope with PERT shortages
We asked our supporters how they are dealing with medicine shortages and uncovered that seven in ten people with pancreatic cancer are taking desperate measures to cope. This leaves them less able to tolerate treatment, with poorer quality of life and at risk of starvation.
The findings of our survey reveal, for the first time, the ongoing physical and mental health impacts from shortages of pancreatic enzyme replacement therapy (PERT) on pancreatic cancer patients.
We are calling on Government to urgently produce a national plan to address PERT shortages, which we estimate could be affecting 61,152 people across the UK.
PERT is as vital for people with pancreatic cancer as Insulin is for people with diabetes. However, supplies of the tablets to the UK have been disrupted for over a year and could last until at least 2026. We surveyed 572 people affected to understand the impact of shortages. Worryingly, we found:
- 82% of people have struggled to obtain their usual PERT prescription on more than one occasion
- 19% have frequently gone without taking PERT
- 71% are taking a lower dose of PERT than they need or have altered their diet.
PERT provides the enzymes people affected by pancreatic cancer need to digest food and absorb nutrients. The consequences of going without or not taking the correct dose 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%) 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.
Mark Gibson-Bell from Lewes has been living with terminal pancreatic cancer for five years and relies on PERT to remain well enough to tolerate his life-extending chemotherapy. He is finding it increasingly difficult to obtain PERT and is having to travel beyond his hometown, a situation that is affecting his mental health.
Mark Gibson-Bell [right] with his husband, Michael
Mark, 57, said: “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?
“I haven’t yet had to go without any as I’ve always managed to source a few to get me by but with it getting so much harder to find, I may have to soon. I have even felt a bit guilty going to another town to get it because someone in that area must also need it. Did I take it off them by going to collect some myself?
“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.”
We are calling on the new Government to develop a national action plan to address PERT shortages and the ongoing impact on patients. We want 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. As well as the pancreatic cancer community, people with cystic fibrosis, chronic pancreatitis and neuroendocrine cancers also rely on PERT.
We have published our own 5-point plan 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.”