In Brain News, Campaign News, Research News

Three weeks ago, we celebrated Scotland becoming the first nation in the UK to approve vorasidenib on NHS Scotland and called on England not to be left behind. Today, England has caught up.

NICE has published its final draft guidance recommending vorasidenib (Voranigo) for use in NHS England. For people living with a grade 2 IDH-mutant astrocytoma or oligodendroglioma who have had surgery and don’t immediately need chemotherapy or radiotherapy, this marks the end of a long and at times painfully slow road and the beginning of something transformative for people living with a grade 2 brain tumour.

This is the first targeted therapy for low-grade glioma in a generation. It crosses the blood-brain barrier, it acts directly on the molecular biology that drives tumour growth, and it gives people something they haven’t had before: a treatment option between surgery and the heavy burden of chemotherapy or radiotherapy.

Interim funding is now available through the Cancer Drugs Fund, and the final guidance is expected to be published on 29 April 2026. Once published, the NHS has 90 days to make vorasidenib available.

What this means in practice

The evidence base for this decision comes from the INDIGO trial, which showed that vorasidenib nearly tripled the time people went without disease progression compared to placebo – a median of 27.7 months versus 11.1 months. Follow-up data published in late 2025 added to this picture, showing benefits for tumour growth rate, quality of life, neurocognitive function and seizure control.

Those last two matter enormously. Living with a low-grade glioma isn’t just about scan results. It’s about whether you can drive. Whether you can work. Whether you can be fully present with your family without the shadow of the next MRI looming over you. Active surveillance, the current standard, is not a treatment. It is a monitoring strategy, and for many people it comes with a significant psychological weight that never quite lifts.

NICE’s committee heard this directly. It acknowledged the anxiety that comes with watching a tumour grow without actively treating it, the seizure burden that shapes daily life, and the particular impact on people diagnosed in their twenties, thirties and forties, often with young children and careers in full swing. These aren’t side notes; they are the point, and ones that we were vocal about in our joint campaign with IBTA and other charities for getting this over the line in Scotland.

Dr Helen Bulbeck, director of services and policy at brainstrust, said:

“This is genuinely good news for people with low-grade glioma in England, and we’re proud of the part we’ve played in getting here. We have been advocating for access to vorasidenib since the INDIGO data first emerged, and we know how much this moment means to the people who have been waiting for it, some of them for years. The decision recognises not just the clinical evidence, but the real human cost of having no active treatment option. And that matters.”

A note for people currently accessing vorasidenib through named patient supply

If you have been receiving vorasidenib through named patient supply, your access will continue. People who do not meet the NICE eligibility criteria will still be able to continue treatment until their treating clinician determines that disease has progressed and they are no longer benefiting, they choose to withdraw consent, or they experience side effects or a change in their condition that means treatment is no longer appropriate. More detailed information is being shared directly with affected patients following publication of the final guidance.

If you are unsure what the NICE decision means for you specifically, please get in touch with your clinical team. Contact us at  if you need support navigating the conversation.

It took too long but it happened

When Scotland’s medicines regulator approved vorasidenib earlier this month, we said that England must not be left behind. Today, it hasn’t been. NICE’s original draft guidance from October 2025 recommended against routine use. The appraisal was paused in January 2026. The revised thresholds being introduced in April 2026 shifted the cost-effectiveness calculus, but it was also the weight of patient and caregiver evidence, about what active surveillance really feels like, about what seizures take away, about the particular cruelty of watching a tumour grow when something might slow it, that shaped this final decision.

None of us is as smart as all of us. This is what it looks like when patient voices are part of the process that matters.

We will continue to monitor implementation closely and will be here to support anyone navigating access to this treatment.

For more information, visit our vorasidenib coverage or call our helpline on 01983 292 405.

Are you living with a meningioma? Tues 14th April 13.00Events, Patient & Carer Events

Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php