SCUK brings lived experience to Scotland's appraisal of zolbetuximab

Stomach cancer is designated a less survivable cancer, yet it sees few new treatments reviewed for use in the UK and community voices are seldom heard in national decision-making.

Stomach Cancer UK is pleased to be a patient group stakeholder in the Scottish Medicines Consortium (SMC) appraisal process for Astellas’ claudin 18.2 inhibitor, zolbetuximab (Vyloy), for use in NHS Scotland.

Zolbetuximab is a new targeted treatment for advanced stomach and gastro-oesophageal junction (GOJ) cancer that is already approved in the USA, EU, and elsewhere. It has been proven to extend life as well as increase the number of people who have a complete response to treatment, which could pave the way to curative surgery for a small subset of patients. Around 40% of stage IV stomach and GOJ cancer patients in Scotland could be eligible for treatment with zolbetuximab.

The SMC’s Patient and Clinician Engagement (PACE) group invited Stomach Cancer UK to prepare a patient impact submission for the appraisal committee to consider alongside medical and economic factors. We centred our submission on the lived experiences of seven UK patients, survivors and caregivers in their own words to highlight the devastating impact of stomach cancer as well as the difference zolbetuximab could make if it were approved.

Across these conversations, people described the realities of living with a cancer that is often diagnosed late and treated with limited options. They spoke about the impact on daily functioning, independence and emotional wellbeing, and the burden of navigating a rapidly progressing disease with few meaningful choices. These experiences underlined the importance of treatments that can offer more time, stability and dignity in advanced illness.

SCUK and a stomach cancer survivor from our community attended the PACE meeting in October 2025, where we worked alongside clinicians to develop a consensus statement that reflected both doctors’ and patients’ perspectives on the benefits of zolbetuximab. This statement was read at the SMC committee appraisal meeting in November.

Executive Director and founder Sheena Dewan attended the meeting and made the closing statement of the meeting. She highlighted the desperate need for more and better treatments for stomach and junction cancers, along with the shocking and often swift course of the disease.

The experiences of patients, survivors and caregivers are essential to NHS drug appraisal processes, because trials and economic data alone cannot speak to the human impact of this deadly disease. Those making decisions on drug approvals need to know the real, lived cost of stomach cancer to factor in alongside clinical and financial information.

Stomach Cancer UK strongly supports the adoption of zolbetuximab for use in NHS Scotland, and the SMC will report its decision later in January 2026.

If you would like to help SCUK bring change to the treatment landscape for stomach cancer by sharing your experiences in future drug appraisals, please contact us, [email protected]