Hello everyone,
The National Institute for Health and Care Excellence (NICE) has published its initial guidance on the drug vorasidenib for treatment of low-grade glioma this week. It has said: “Vorasidenib is not required to be funded and should not be used routinely in the NHS in England for the condition and population in the recommendations. This is because the available evidence does not suggest that Vorasidenib is value for money in this population.”
We understand the disappointment this decision will cause, but it is important to note that this is an interim decision while more evidence on the effectiveness and information on the funding model of the drug is gathered. This will involve questions being asked of Servier, the manufacturer of vorasidenib. It will also involve Brain Tumour Research as we retain our role as Patient Experts. Please be assured we will be working hard in every capacity available to us to influence the decision in favour of vorasidenib being reimbursed on the NHS.
You can read more about the NICE decision here, but if you have direct experience of Vorasidenib, particularly if you have experienced some symptom progression necessitating other clinical interventions, please do make direct contact with me (hugh@braintumourresearch.org) so I can make your voice heard directly to the committee at the next NICE vorasidenib appraisal meeting on 20th November.
Before that meeting we have next week’s meeting of the All-Party Parliamentary Group on Brain Tumours (APPGBT. If you’d like to read the agenda and briefing document that I send to our political stakeholders (i.e. MPs) then it is here.
As mentioned last week, and repeated here because the message is so important, we need at least eight politicians in the room at the start for the meeting to be quorate, which will mean being able to conduct the official business of an AGM.
Many of you have already been in contact with your MPs about this and thank you so much for the continued support.
If emailing your MP is still on your to do list then please weekend, could you email your MP using the template below and, as always, please Cc me hugh@braintumourresearch.org.
Subject: APPG on Brain Tumours 21st October 18:00 Committee Room 17, HoC
Dear [Your MP],
The APPG on Brain Tumours will meet on Tuesday 21st October at 18:00 in Committee Room 17 of HoC.
I have Cc’d Hugh Adams from the charity Brain Tumour Research – the group’s secretariat provider.
Hugh will provide you with an agenda and a briefing document ahead of the meeting.
I very much hope that you will be able to be there on the 21st – this is a cause of great importance to me and your support would be hugely appreciated.
Kind Regards,
[Your Name]
[Your Postcode]
Remember nearly all the MPs currently engaged with our APPG have done so because they were approached by a constituent Brain Tumour Research campaigner.
You’ll have read in our recent updates about our political activity during party conference season. Katherine has bundled all into one blog update which you can read here.
Finally, this week a quick update on the progress of the Rare Cancers Bill toward its second reading in the House of Lords. We had hoped to find a space before the New Year, but that opportunity no longer looks possible and, whilst we continue to work with our partners behind the scenes to do what we can to expedite progress, it would appear the next milestone will now be tackled at the beginning of 2026.
A big week of meetings with all types of stakeholders and collaborators awaits and we will be reporting back to you on it all next Friday.
Wishing you a peaceful time until then.
Karen, Hugh, Katherine and Jana
