Hello everyone,
In July 2025, UK brain tumour charities issued a statement on their joint mission to ensure all patients with a brain tumour – including those with highly aggressive glioblastoma – receive fair access to the latest innovative treatments. Together we wrote: “With no new approved therapies for glioblastoma since the introduction of temozolomide nearly 20 years ago, access to innovative treatments must be a priority for NHS England and National Institute for Health and Care Excellence (NICE).”
Tumour Treating Fields (TTFields) therapy is an innovative, licensed wearable-device treatment option for patients with newly diagnosed GBM receiving temozolomide.
TTFields therapy is currently unavailable to patients within the NHS. This is a decision made by NICE based on a cost-benefit analysis, which evaluates the benefits and whether the benefits outweigh the expenses of the therapy.
This situation contrasts with those living in countries such as France, Austria, Germany, Sweden, Switzerland, Japan and Israel, where the treatment is accessible to eligible patients with glioblastoma.
Most recently, Spain has been added to this list which prompted an unprecedented outreach from brain tumour campaigners to their MPs and to the Chief Medical Officer of NICE, Professor Johnathan Benger. This follows on from questions on this matter from both the clinical community and senior politicians.
It is in the wake of this outreach Brain Tumour Research has produced a further update to inform the brain tumour community.
Our update is based on regular meetings of a UK BT Charities Optune Collaborative Group, interaction with the company Novocure and a recent one-hour call with Professor Benger.
Our position remains that we will always strive for the earliest possible access via the NHS for the most promising and innovative therapeutics and devices for brain tumour patients.
Following discussions with Prof Benger, NICE’s position is that:
- NICE has considered TTFields on several occasions and has found TTF not to be cost effective at the thresholds NICE uses to recommend treatments for routine adoption in the NHS
- NICE examined TTFields in March 2024, in line with published processes and found that “evidence relating to clinical effectiveness and quality of life outcomes had not changed significantly since 2021."
- NICE is actively monitoring any new evidence that becomes available on this treatment. While more research has been published since the guideline was last updated, the view of NICE’s surveillance team is that this evidence would not change the current recommendation
- NICE continues to monitor the available research evidence and the topic will be reconsidered once ongoing trials have been completed
Professor Benger has stated in a letter to Brain Tumour Research CEO Dan Knowles: “Please accept my continuing assurance that I fully support your charitable ambitions, and that if the situation changes in a way that means TTFields has a reasonable chance of demonstrating the required cost-effectiveness for routine adoption into the English NHS, NICE will look at it immediately.”
We understand and respect the NICE methodology. However, we remain perplexed by the ability of other European countries to make this technology available.
Novocure’s opportunity to change the NICE decision and for it to look again at TTFields lies in its ability to present new data and/or to show flexibility on cost.
The new evidence route includes two currently running clinical trials.
The TRIDENT clinical trial, which is no longer recruiting, is a randomised, open-label study designed to enrol 950 adult patients with newly diagnosed glioblastoma. Following maximal debulking surgery, patients enrolled in TRIDENT were randomised to receive either TTFields therapy, along with temozolomide and radiation therapy, or temozolomide and radiation therapy for six weeks. The TRIDENT clinical trial is expected to report in the spring of 2026.
The EF-41/KEYNOTE D58 study, currently recruiting into UK sites, is for newly diagnosed patients with a glioblastoma. This clinical study is evaluating the safety and efficacy of the TTFields Optune device, along with maintenance temozolomide and pembrolizumab, an immunotherapy drug, compared to Optune and maintenance temozolomide and placebo. We aren’t expecting data from this trial until 2029.
For NICE to approve or recommend a therapy, both clinical effectiveness and cost effectiveness must meet certain thresholds. When it comes to the cost of Optune, we understand that Novocure have made offers to negotiate the price.
What we are committing to do next:
- Gather information to ensure our international comparisons are robust and, where possible, compare like with like. Clearly, the US model, for example, isn’t the same as the UK NHS model and these differences are important. We are currently seeking clarity on how, following the Spanish decision, a Spanish glioblastoma patient might access Optune: Are there hidden costs? Is it available for all glioblastoma patients?
- Recognise that this is a two-sided issue and the role of the company in providing new data and a movement in cost is as essential as the stated willingness of NICE to actively monitor this data and enter a new appraisal process
- Offer support to facilitate further conversations between NICE and Novocure
We know that glioblastoma patients are desperate for new hope, new trials, new options, a route to improved survival times, kinder treatments and ultimately a cure.
We all are.
As soon as we have further updates, we will pass them on.
The Medicines and Healthcare products Regulatory Agency (MHRA) has approved licensing for the medicine Vorasidenib. This medicine is used to treat adults and children of 12 years of age and older, with grade 2 astrocytoma or oligodendroglioma with a susceptible isocitrate dehydrogenase mutation (IDH1 or IDH2). The medicine is for patients who do not need immediate chemotherapy or radiotherapy following surgical intervention. You can read more about the journey of Vorasidenib and next steps in our Latest News article.
The journey of Vorasidenib is one the APPG on Brain Tumours has been following closely and key members of the group, including our Chair, Dame Siobhain McDonagh, and APPG member, Rt. Hon John McDonnell MP met with the drug manufacturer at Westminster to see what could be done to expedite the availability of the drug to UK patients.
Dr Karen Noble, Director of Policy, Research and Innovation at Brain Tumour Research, commented:
“I’m pleased to see the MHRA taking steps to improve outcomes for brain tumour patients. Too often, we hear stories of people waiting endlessly for treatments that could improve their prognosis. I hope this licensing approval marks the beginning of faster access to effective therapies.
I’m also encouraged to see the role our external stakeholders, through the APPG on Brain Tumours, have played in contributing to this milestone, once again proving the group’s value in advocating for patients and their loved ones in Parliament.
The next move is for NICE to appraise Vorasidenib for reimbursement through the NHS, a process that Brain Tumour Research is fully involved with.”
Next week we will say goodbye to Thomas as he reflects on his three years at Brain Tumour Research and we’ll introduce Katherine Dew, the newest member of our team. We are also delighted to have had Jana Abdal Rahman join our team as Policy and Public Affairs Officer.
By way of introduction, Jana said: "I come from a lobbying background, where I represented a range of organisations across the life sciences, semiconductor, and other sectors in the West Midlands.
My passion for the brain tumour cause began while working with a life sciences client who was supporting the scale-up of a company researching treatments for brain tumours. Through that work, I was introduced to many powerful and personal stories from the brain tumour community.
I’m now committed to ensuring those voices are heard and to helping improve outcomes for all brain tumour patients, and there’s no better place to do that than at Brain Tumour Research."I’m now committed to ensuring those voices are heard and to helping improve outcomes for all brain tumour patients, and there’s no better place to do that than at Brain Tumour Research."
Parliament is now in recess while the conference season is in full swing and we will report back from the Lib Dem conference next Friday too.
Until then, wishing you all a peaceful week.
Karen, Hugh, Thomas and Jana
