People with IDH-mutant low-grade glioma deserve more time and better treatment options. Vorasidenib is the first targeted therapy proven to delay tumour growth and preserve quality of life, yet NICE has issued a draft decision not to recommend it for NHS use. Please sign to urge NICE to reconsider and make this life-changing treatment available in the UK.

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We are starting this petition to stand with everyone in the UK living with IDH-mutant low-grade glioma and the families who love and support them.

These tumours are rare, slow-growing brain cancers that often affect young adults in their twenties, thirties and forties. Many are studying, working, raising children and building their lives when they receive this diagnosis. In the UK, around 1,200 people each year are diagnosed with a diffuse or low-grade glioma. For many, life becomes a cycle of MRI scans, surgery and years of uncertainty about when their tumour will progress.

At present, the main treatments are brain surgery, followed by chemotherapy or radiotherapy when the disease advances. These treatments can cause long-term side effects such as fatigue, memory loss and cognitive decline. For people who are otherwise young and healthy, this can mean losing their ability to work, drive, study or parent independently, sometimes for decades.

Vorasidenib represents a major scientific breakthrough. It is the first targeted treatment developed specifically for patients with IDH-mutant gliomas. Clinical trials, including the INDIGO Phase III trial, showed that vorasidenib more than doubled progression-free survival compared with placebo, delaying the need for chemotherapy and radiotherapy by several years.

That extra time matters deeply. It gives people the chance to continue working, to raise their families, to think clearly and to live fully. For many, it could mean maintaining their quality of life for years longer before needing harsh treatments.

In October 2025, the National Institute for Health and Care Excellence (NICE) issued a draft decision not to recommend vorasidenib for use on the NHS in England and Wales. This decision has caused heartbreak and disbelief among patients, families, clinicians and campaigners who understand what a vital step forward this medicine represents.

The science is clear: vorasidenib gives people more time, better outcomes and hope where there was previously none. The main barrier is cost and negotiation, not clinical benefit.

We are asking NICE to:

Reconsider its draft decision, taking into account the unique needs of people living with rare brain tumours.
Work urgently with the manufacturer (Servier) and the Department of Health and Social Care to agree a fair price that makes vorasidenib accessible through the NHS.
Recognise the long-term value of delaying toxic treatments for young adults who would otherwise need chemotherapy and radiotherapy at the height of their working and family lives.
No one should be denied access to a treatment that can safely give them more time to work, to love and to live.

Please sign and share this petition to show that people living with IDH-mutant low-grade glioma are not forgotten. Together, we can send a message of hope, compassion and fairness, and urge NICE to make vorasidenib available on the NHS as soon as possible.

#ApproveVorasidenib #BrainTumourAwareness #HopeForGliomaPatients