Stroud pancreatic cancer survivor, Bryony Thomas is calling on the Government to urgently address shortages of a medication she depends upon taking every time they eat to digest food and absorb nutrients.
Pancreatic enzyme replacement therapy (PERT) is as vital for people with pancreatic cancer as Insulin is for people with diabetes – not taking it can leave them less able to tolerate treatment, with poorer quality of life and at risk of starvation. 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 (1), 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. Worryingly it found: 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.
Bryony was diagnosed with pancreatic cancer in December 2019. Fortunately, the cancer was successfully removed by surgery at the start of 2020, but she is now dependent on PERT to digest food and absorb nutrients. She usually takes 8-12 tablets with a typical meal, with a pot of 100 lasting her around 2-3 days.
Bryony, 46, said: “At the beginning of March, with a month in hand, I put through my repeat prescription. Within a few days I’d not had my usual text to collect, so called the pharmacy. I was told that there was a supply issue and that could only issue one pot of 100. I spoke with my GP who first issued the Creon prescription to another pharmacy, who couldn’t fulfil. We then tried a prescription for Nutrizyme, which also couldn’t be fulfilled. I was down to 5 days’ supply when I posted on social media. I looked into buying some and could only find the 10,000 tablets – which would mean taking up to 30 tablets per meal. There were also some overseas sites seemingly selling 25,000, but a month’s supply would have cost £2000+.
“Then a fellow patient who had already switched to Nutrizyme, and had a supply of that, offered to send me some leftover Creon they had. They arrived just in time as my supply dwindled. I know sharing supplies is against the law, but I had no other option.”
Bryony continued: “Living without PERT isn’t just about nutrition. It’s quality of life. When I was getting used to it, and unintentionally under dosing, there were days when I couldn’t leave the house for fear of soiling myself. I couldn’t be away from a toilet. I fear for people in end of life whose dignity and independence will be so affected if PERT is not readily available. Not least through hastening death, but in making the last weeks intolerable. I fear for people having chemotherapy interrupted or stopped due to weight loss. For me, I live with the constant stress of not knowing if my life-giving treatment will be available. I’m currently trying to take less to make my precious supply last longer, but have again started losing weight and experiencing diarrhoea.”
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%) 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 5-point plan to address the issue after consulting with patients, medicine suppliers, health professionals and other charities: https://www.pancreaticcancer.org.uk/news-and-blogs/our-plan-to-address-pert-shortages/
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.”
