On the 9th of January, NICE announced that the appraisal for Vorasidenib has been paused, at the request of the company who manufacture it, and draft guidance is now expected on 29 April 2026.
Why the delay? The Government is introducing a change to how NICE judges whether a medicine is cost-effective for the NHS, and from April, the cost-effectiveness threshold will increase. This threshold is the benchmark that NICE uses to judge whether a medicine provides enough health benefit for its cost, and with a higher cost to judge new drugs against, NICE will therefore be able to approve more drugs that were previously seen as not cost effective.
For Vorasidenib, although the delay is frustrating, the reason for it can be seen as good news. Being assessed under the new threshold could improve its chances of approval. However, it can’t be reviewed using the new rules until April, which is why the timeline has been pushed back.
If NICE recommends Vorasidenib in April, the NHS has up to three months to make it available to all eligible patients.
What has happened so far?
In October 2024, Vorasidenib was discussed at the NICE Prioritisation Board, and it was decided that it was suitable for a technology appraisal, to assess if it is cost effective and ultimately available for patients on the NHS, in England.
Evidence was then submitted by a range of stakeholders through early 2025 and a Committee Meeting was held in September 2025, where they discussed evidence provided. The Brain Tumour Charity fed in evidence about the significant impact of a low grade glioma diagnosis and the urgent need for new treatment.
In October 2025 we received news that the draft decision was to not recommend Vorasidenib for use. This triggered a consultation period, where we reached out to the community to gather views on this decision and the impact of a diagnosis.
We manged to collect over 1,300 responses in a week. These were powerful testimonies that highlighted the frustration from the community and that the approval of Vorasidenib represented far more than access to a new treatment. For people living with low-grade gliomas, it symbolised long-overdue progress and renewed hope.
Through their own words, they described the emotional, social, and practical challenges of living with ongoing uncertainty, disrupted daily life, and gaps in support. Families spoke of shared responsibility and advocacy, while patients described the strain of navigating treatment pathways, managing work and finances, and coping with the emotional and psychological toll.
A second committee was held in November 2025, where they considered this new evidence.
Why the pause?
In December 2025 NICE announced that they were aiming to improve the operating environment for the pharmaceutical sector in the UK in order to maximise the government’s commitment to unlock innovation and support the sector. As part of this they agreed to apply new thresholds of £25,000 to £35,000/QALY from April 2026.
Unfortunately, they cannot be assessed against this threshold yet, and so ongoing appraisals where this may make a difference must be paused. This has come at the request of the company submitting the application.
What does this mean for patients?
Unfortunately, this does mean a delay. If something is recommended by NICE, the NHS in England has three months to make it available. As such, this means that if it is recommended in April, it may not be available to all eligible patients until July.
This decision is independent of any agreement that individual patients may have via an expanded access programme, and they should speak to their clinician about this.
What happens next?
We will continue to monitor this and remain hopeful. We will update the wider community as soon as possible. We also understand the frustration that many of you may be feeling at this news.
Ultimately, we are exceptionally proud of the evidence we submitted which would not have been possible without the candidness of the community in sharing their stories.
In the meantime, the Scottish Medicines Consortium is also assessing Vorasidenib for its use in Scotland. We are active participants in this, having submitted evidence, and we are attending meetings to help represent the patient voice.
Why does this matter?
It’s clear from the emails we received and from the results of our survey that making Vorasidenib available on the NHS represents far more than access to a new treatment.
The staggering 1,316 responses to our survey demonstrate that for people living with or researching low-grade gliomas, it provides renewed hope, the chance to lead a more normal life and a real sense that medical advances are within reach.
Patients, relatives, and healthcare professionals have highlighted the profound impact that approval would have – restoring dignity, reducing anxiety, protecting quality of life, and addressing long-standing inequalities in brain tumour care.
To read more about why it matters, please read our blog back in November that looked at some of the personal stories.
Why approving Vorasidenib matters
Vorasidenib – a promising new drug to treat low grade gliomas