There are concerns a life-changing treatment is not being prescribed to enough people with pancreatic cancer in New Zealand.
The treatment — called pancreatic enzyme replacement therapy (PERT) — is known to improve digestion, slow down the rate of weight loss, improve quality of life and allow people with pancreatic cancer to better tolerate chemotherapy.
Described by some as a “miracle pill”, the therapy is a straight enzyme replacement which is also used in other conditions such as cystic fibrosis.
“You’re putting the enzymes in at the time you’re putting your food in and it helps to break up the food and act in the way the pancreas would,” said lead researcher for the ASPERT research group Dr Amanda Landers.
Results from a recent study published by Otago University showed 40% of pancreatic cancer patients had never heard of PERT treatment. That figure raised to 45% for Māori patients.
However, Landers told 1News a lack of education among clinicians and patients about PERT meant very few of the 700-800 people diagnosed each year were being offered the treatment.
“That’s not helped by the fact only a quarter of New Zealand patients diagnosed with pancreatic cancer even get to see a cancer specialist,” she said.
“It’s not really taught in medical school because it’s a very niche area, so where it’s probably taught is amongst dietitians and dietitians haven’t had a huge role in cancer treatment up until recently,” Landers said.
The Gut Cancer Foundation’s chief executive Liam Willis also expressed concern over the lack of education and underutilisation of the drug.
“The reality is that there are actually only a few treatment options for a lot of these patients but PERT is something that can have a real positive impact and it’s something that is readily available and is funded.”
“We think there needs to be a significant increase in education for all types of clinicians who are dealing with patients with pancreatic cancer,” he said.
To improve access to the therapy, a patient-reported registry and survey has been launched, to help educate patients and provide them with a letter to take to their clinicians.
“Our mission is to make sure every New Zealand and Australian patient with pancreatic cancer gets assessed by a dietitian and given access to PERT medication, if possible,” Landers said.
Willis said the Foundation would like to see more focus on diet and nutrition.
“There’s a systemic issue with lack of importance given to diet and nutrition. There’s also a lack of dietitians within the public health system so we would love to see everybody referred to a dietitian in the first instance but that’s not happening,” he said.
‘It improved my quality of life’ – patient
Shaun Liddy was diagnosed with stage 4 pancreatic cancer in April, which has since spread to his liver and lymph nodes.
“I get a lot of fatigue and there’s a lot of disrupted bowel motions, a real rollercoaster of that.”
To help alleviate symptoms, his oncologist suggested taking PERT which he said had contributed to a “huge improvement” in his quality of life.
“Because I lost 20kg of weight in the first month of being treated for this cancer, nutrition was really important so actually getting those enzymes to absorb as much nutrition as possible to stabilise my weight and help me heal was really important,” he said.
“It’s stabilised my bowel movements which is fantastic but it’s also given me more energy throughout the day and that allows me to actually go and do some activities and live my life.”
He encouraged other pancreatic cancer patients to reach out to their doctors to see if PERT could be a viable option for them.
“I had no awareness that it was a thing. I was just lucky my medical professionals who were helping me were aware of it and were advocates for it.”
Pancreatic cancer information and resources can be found on the Gut Cancer Foundation’s website, while anyone who wants to join the patient registry can do so here.
