New advice issued for dietitians due to ongoing PERT supply issues

11 Apr 2024

Ongoing supply issues of pancreatic enzyme replacement therapy (PERT – under the product brands: Creon®, Nutrizym® and Pancrex®) mean some people are at risk of running out in the short-term or experiencing difficulties or delays in accessing their prescriptions.

New guidance has been developed by the British Dietetic Association’s (BDA) Cystic Fibrosis and Gastroenterology Specialist Groups, alongside the Nutrition Interest Group of the Pancreatic Society of Great Britain and Ireland (NIGPS) to minimise the impact of these intermittent supply issues on symptoms.

Pancreatic enzyme replacement therapy (PERT) is prescribed to support adequate digestion in patients with pancreatic exocrine insufficiency (PEI), most commonly due to pancreatic cancer, pancreatitis and cystic fibrosis. There are many other clinical situations where patients may have primary or secondary PEI, such as type 3c diabetes or following gastrectomy or gastric bypass surgery.

Symptoms of untreated PEI may include bloating, excess wind, diarrhoea, cramping abdominal pain, faecal urgency, steatorrhoea (pale floating stools), difficulty in managing blood glucose levels, vitamin and mineral deficiencies, weight loss and malnutrition. These symptoms are usually managed with PERT and will return if patients are unable to take adequate doses.

Mary Phillips, Senior Specialist Dietitian and Clinical Lead for the BDA’s Gastroenterology Specialist Group says, “Over the last few years we have seen intermittent issues with the supply of pancreatic enzyme replacement therapy. The demand for PERT has increased due to a variety of reason including the improved survival in patients living with cystic fibrosis, a recognition of need in more patients with pancreatic cancer, as well as the increased frequency of pancreatitis. This is compounded by a reduction in the pig farming industry, short-term import issues due to Brexit and the stock piling of medication during COVID. 

“We are seeing more and more patients face short-term supply issues and our guidance has been produced to support prescribers, dietitians and patients deal with this. As we have stressed in the document, at this stage there is no indication that patients will run out completely for any length of time, as supplies are still being shipped into the country regularly, so we hope that a lot of the information in this document may never be needed by most patients, however we wanted to be ready should the need arise."

The document has been endorsed by the British Society of Gastroenterology (Pancreas section), Pancreatic Society of Great Britain and Ireland, Pancreatic Cancer UK, GUTS UK, Cystic Fibrosis Trust, CF Medical Association and the BDA.

Members can access the guidance here.