Open Letter to the Prime Minister over the PERT shortgage

The main function of the pancreas is to produce the enzymes needed to digest food. If the pancreas is removed following a pancreatic cancer diagnosis, then these crucial enzymes the pancreas would have created need to be replaced. As a result, these patients will spend the rest of their lives on PERT to help them digest food, get the vital nutrients they need to live and enjoy food as much as possible.

PERT can also be used throughout treatment for pancreatic cancer, supporting the patient to benefit from the nutrients in their food. Research suggests that taking PERT during treatment for pancreatic cancer can improve your expected life span. This is especially important to ensure patients are strong enough to withstand the gruelling treatment that comes from a pancreatic cancer diagnosis.

Whilst crucial for pancreatic cancer patients and survivors, PERT supports patients with other diseases and trauma that affect the pancreas, e.g. neuroendocrine cancers, pancreatitis, those who have undergone surgery to their pancreas, stomach and duodenum. We have collaborated with fellow charities whose patient cohort are affected by the PERT shortage to work together and campaign for change. These activities include:

• Endorsing patient guidance for adults with pancreatic exocrine insufficiency.
• Endorsing guidance for clinicians on management of adults with pancreatic exocrine insufficiency, e.g. pharmacists and dieticians.
• Challenging pharmaceutical companies on their PERT supplies and what changes they ate making to increase supply.
• Working with governmental departments to regulate the current supply disruptions.
• Lobbying politicians and government officials to make urgent intervention to improve the supply chain of PERT in the UK and across Europe.

We are continuing to take our fight for patients to the very highest levels of Government. Pancreatic Cancer Action joined with partners to call on the Prime Minister to:

• Facilitate an urgent meeting with the Secretary of state and our clinical and charitable organisations, to discuss how we can alleviate this medicine shortage.
• Support a national process to import PERT and introduction of imports into the normal wholesalers, making PERT accessible to all.
• Review all medicines where one product dominates the UK supply to prevent issues like this from occurring again.

We jointly published an open letter of our demands in the hope of gathering further attention for our cause. This letter can be viewed below.