Patients with deadly brain tumours being denied life-saving genetic testing, charity warns

Patients with deadly brain tumours are being denied potentially life-saving genetic testing, a charity has claimed.

The UK has one of the worst survival rates for the cancer in the developed world.  

But according to campaign group Brain Cancer Justice, there are new drugs that could benefit NHS patients.

To access them, however, they would need to be offered genetic testing, which currently isn’t available on the health service for this group.

Brain Cancer Justice is now petitioning the Government to provide all brain cancer patients with this testing. 

The petition has already been signed by more than 100,000 people, meaning it will have to be considered for a debate in Parliament.

Brain cancer affects around 12,000 Britons every year. It is one of the most aggressive forms of the disease, killing around 5,000 annually. 

Average survival time for glioblastoma – the most severe grade of brain tumour – is between 12 and 18 months, according to The Brain Tumour Charity. 

Only 5 per cent of patients survive five years.

Over the past decade, the NHS has expanded access to genetic testing for some cancer sufferers, because many new drugs are only effective for patients with certain genetic mutations. 

But brain cancer patients are not routinely offered tests because most forms of the disease are not triggered by genetic mutations.

Brain Cancer Justice says that means a number of drugs are off-limits to them.

The charity points to vorasidenib, an immunotherapy drug, for patients with a specific mutation – called IDH – which research has shown significantly slows tumour growth.

‘We now have drugs that specifically target gene mutations,’ says Matthew Wilson, co-founder of Brain Cancer Justice. ‘Given the survival rate of the disease, we are asking that patients have the right to try these new drugs.’

To sign the Brain Cancer Justice petition visit petition.parliament.uk/petitions/738881