Brain tumour patients and their families in the UK have called for a new drug to be made available on the NHS to treat low-grade gliomas. The Guardian reports that the drug, known as Vorasidenib, has been proved to be effective in clinical trials but is not yet used within the NHS.
Vorasidenib works by inhibiting the enzymes IDH1 (isocitrate dehydrogenase) and IDH2 and is able to cross the blood-brain barrier, according to the The Brain Tumour Charity. A phase 3 clinical trial involving 331 patients showed that the drug significantly slowed the progression of residual or recurrent grade 2 gliomas.
Patients who took the drug required less frequent treatments and had few side effects. It has been approved by the Food and Drug Administration (FDA) in the US and is available to be fast tracked by those patients in most need. However, it has not yet been approved for use in the UK.
The Guardian reports on the case of Shay Emerton, a 26 year old biochemistry graduate. He was diagnosed with a slow-growing grade 2 glioma in 2021. He had surgery which successfully removed 98% of the tumour, but the remaining tumour requires regular six month monitoring because there is a risk that it might regrow.
Emerton said: “It’s so frustrating that there is something out there which could potentially help me to live a longer life and I can’t access it. They stopped the clinical trial because it was so successful.” His mum Dawn added: “People say you can wait until the drug is approved, but these patients do not have time. The tumour can progress at any stage.”
There has been widespread criticism from campaigners and researchers regarding the poor progress and funding levels for brain tumour research.
According to the National Cancer Research Institute, since records began in 2002, £10bn of funding into cancer research in the UK has been provided, but just £126m (1.3%) has been allocated to brain tumour research.
A Department of Health spokesperson said: “Brain cancer is a devastating disease, which is why we’ve allocated £40m for research in this area, on top of £1bn a year for wider health research.”
They added: “We’ve invested in every suitable research application made and the funding will continue to be available for further studies to develop new treatments and therapies for brain tumours.”
Brain tumours are currently the biggest killer of adults under 40 in the UK, with over 12,000 people being diagnosed with a primary brain tumour each year. There are over 130 different types of brain tumour that can cause a variety of symptoms.
These may vary from person to person, but common signs include headaches, changes in vision, seizures, nausea, dizziness, tiredness, and loss of taste and smell. Most of the time, these symptoms will have other causes, but anyone experiencing persistent or recurrent episodes of two or more symptoms is advised to consult a doctor.
For information about treatments for glioblastoma and Gamma Knife surgery, please contact Mr George Samandouras of Amethyst Radiotherapy.