VORASIDENIB FOR TREATING TREATING ASTROCYTOMA OR OLIGODENDROGLIOMA WITH IDH MUTATIONS

UPDATE 29^TH OCTOBER 2025

NICE DRAFT GUIDANCE CONSULTATION

COMMITTEE MEETING 18^TH SEPTEMBER 2025

Read about the INDIGO trial courtesy of BNOS here https://www.bnos.org.uk/wp-content/uploads/2025/06/Vora-in-LGG_FINAL-June-2025.pdf

You will be aware that NICE at the above mentioned committee meeting, did NOT recommend that vorasidenib be used by the NHS for treating astrocytoma or oligodendroglioma with IDH mutations.

https://www.nice.org.uk/consultations/3089/2/recommendations

However, this is not a final decision and the guidance is currently under consultation and all stakeholders have until 4^th November to submit their responses – there is a second committee meeting taking place on 20^th November 2025 where it will be reconsidered with new evidence.

Astro Brain Tumour Fund has been busy collecting “patient experiences” – thank you to everyone who has responded in this way.  We have also been collecting evidence to dispute NICE’s evidence as to why the drug has not been passed.  We have drawn up a pretty large consultation document!

You can comment on the NICE draft guidance document – you need to first create and activate a NICE account – go to https://accounts.nice.org.uk/register then go to

https://www.nice.org.uk/consultations/3089/2/recommendations

Also, please sign the change.org petition asking NICE to reverse their decision

Petition · Urge NICE to Reverse Its Decision on the Life-Saving Drug Vorasidenib – United Kingdom · Change.org

Thank you for your help!