VORASIDENIB FOR TREATING TREATING ASTROCYTOMA OR OLIGODENDROGLIOMA WITH IDH MUTATIONS

UPDATE 21ST NOVEMBER 2025

SECOND NICE COMMITTEE MEETING 20TH NOVEMBER 2025

The committee meeting was held on 20th November to further consider  approval (or not) of vorasidenib within the NHS.  Astro Brain Tumour Fund submitted a comprehensive document spelling out the advantages of the drug and also included patients/carers comments within the document as well as separately submitting all the ‘stories’ which were accumulated.

Shay attended the meeting once again as a patient expert and eloquently told of the challenges of living with an LGG and how much difference vorasidenib has made to his life and his family.

It’s now a case of waiting for the decision which we think won’t be until January.

Many thanks to everyone who took the trouble to write their life stories which we forwarded and also to others who wrote directly to NICE.  We think these stories really hit home regarding the challenges of living with an LGG.

UPDATE JANUARY 2026:

We are now expecting a decision from NICE in April 2026 after this was delayed.

SCOTTISH MEDICINES CONSORTIUM (SMC)

Meetings, attended by representatives of Astro Brain Tumour Fund, have been held and a decision for approval of vorasidenib within NHS Scotland is expected on 9th March 2026.

The trustees would like to once more say a huge thank you to all patients and their families who took the trouble to send in their stories and also gave permission for them to be used for the SMC submission – we are convicned that these made a huge difference!