A YORK couple paid £10,000 for their son to receive an effective new treatment against tumours in his brain because the NHS wouldn’t fund it.

Sam Dale, eight, of Copmanthorpe, suffers from Tuberous Sclerosis Complex (TSC), a genetic disease which can lead to benign tumours throughout the body, including the brain.

York Outer MP Julian Sturdy said a highly effective drug treatment for TSC-related tumours of the brain, called Everolimus, was approved in the EU in 2011 but NHS England had not approved a prescribing policy, resulting in an estimated 20 deaths per year.

He said that under a new prioritization process, sufferers lost out as the treatment was deemed ‘unaffordable,’ even though it cost less than dialysis for kidney failure, and he called on NHS England to urgently publish a new prescribing policy.

“Without this treatment, all patients with inoperable brain tumours will suffer progressive neurological deterioration and die, usually within two years, but treatment with Everolimus results in up to 95 per cent of patients living long and healthy lives, according to the Tuberous Sclerosis Association.

Sam’s father Nicholas said: “All everyone wants is a transparent and fair system. In our case, the only reason we currently have our son’s medication funded is because we paid for it ourselves to prove that it worked.

“Sam is very lucky that we have family and friends who wanted and are capable of supporting us financially.”

His wife Jo said they raised about £10,000 for about 18 months of a cheaper treatment which halted the growth of multiple tumours in his brain, and a hospital had now agreed to fund this.

York Press:

Mr Dale said most people were not so lucky to be able to raise such money. “No family should have to watch their child deteriorate towards death whilst the NHS hides behind an unworkable administrative procedure.”

Mr Sturdy said he was organising a joint letter from MPs to lobby NHS England to ensure patients get access to the treatments they so desperately needed.

The Dales said they would attend a protest outside Parliament today, calling for Everolimus to be made available involving actor David Suchet and his wife Sheila, whose grandson suffers from TSC.

NHS England did not yesterday respond to The Press's request for comment.