35 Access to Vorasidenib for Low-Grade Glioma in the UK: Voices of Patients, Carers and Clinicians

Vollständiger Abstract

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Abstract Introduction Low-grade gliomas (LGG) often affect younger adults with patients often experiencing prolonged uncertainty, cognitive difficulties, and loss of independence. Methods Following a draft decision by the National Institute for Health and Care Excellence not to recommend vorasidenib for NHS use, The Brain Tumour Charity conducted an online UK-wide survey to capture community perspectives on access, unmet need, and lived experience. The survey, open from 15 October to 22 November 2025, received 1,316 responses. Of these, 73% were from individuals affected by LGG, including patients and carers. Quantitative questions assessed perceived unmet need and support for NHS access, while qualitative free-text responses were analysed thematically. Results Support for NHS access to vorasidenib was almost unanimous (99%). A majority (86%) identified an unmet clinical need in LGG, referring to decades of limited innovation and reliance on invasive treatments including surgery, radiotherapy and chemotherapy. Qualitative analysis revealed four dominant themes: (1) hope associated with the first meaningful therapeutic advance in 25 years; (2) preservation of quality of life and independence; (3) frustration with systemic neglect and perceived inequity compared with other cancers; and (4) ethical and financial injustice. Patients and clinicians emphasised the value of delaying radiotherapy and chemotherapy, minimising cognitive harm, and reducing burden on NHS services through an oral, well-tolerated treatment. Conclusions These findings highlight a disconnect between standard cost-effectiveness assessments and outcomes that matter most to patients living with LGG. Incorporating lived experience, quality of life, and long-term societal impact into decision-making is essential to ensure equitable access to innovation in neuro-oncology.