Endocrine Abstracts

Background: Pancreatic Enzyme Replacement Therapy (PERT) is the gold standard treatment for Pancreatic Enzyme Insufficiency (PEI), regardless of underlying aetiology. Historically, there have been intermittent PERT supply issues, however, over the past year (2023/4) this has become a more persistent and significant issue: leading to questions being raised in both UK and EU parliaments and main media reports. PERT is potentially life-saving: for those with certain conditions, including cancer, it can significantly influence prognosis, suitability for and/or tolerability of treatment.

Methods: Brought together through the impact PERT shortages are having on their patient populations, a third sector collaborative formed. The aim of the collaborative has been to work with all stakeholders including specialist dietitians, health service colleagues, the Department of Health and Social Care (DHSC), national medicines management team, Medicines and Health Care products Regulatory Agency (MHRA) and suppliers to: a) understand underlying root causes, b) find workable interim and longer-term solutions, c) provide guidance for clinicians/prescribers and dispensers, and most importantly d) information for our patient communities.

Results: Root causes identified: from raw source materials (and yield) issues, to manufacturing capacity, and single supplier reliance. Under the auspices of the Pancreatic Society of Great Britain and Ireland a Position Statement has been published - 3rd version (June 2024) - offering advice to both clinicians and patients. In May 2024, the MHRA issued a National Patient Safety Alert. Updated information is available via the Specialist Pharmacy Service website (https://www.sps.nhs.uk/) Third sector organisations have provided information dissemination and patient resources. Two free to access online healthcare professional-focused webinars* were held September 2024: with combined total attendance of more than 450 GPs, dietitians, CNSs and pharmacists.

Conclusion: Continued collaboration and horizon scanning is needed to better quantify current and future demand, maintain and sustain PERT supply, and provide accurate, accessible, and up-to-date information provision. We would like to thank our charity partners, Pancreatic Cancer UK (chair and lead of group), Pancreatic Cancer Action, Guts UK and Cystic Fibrosis Trust, and all stakeholders. (Webinar recordings* available via HCP page at https://www.neuroendocrinecancer.org.uk/hcp/ )