A Norwich mother said she is 'disgusted' that the NHS will not fund treatment which she said saved her son's life after a genetic condition left him months away from death.
NHS England says it will not fund everolimus for the treatment of refractory epilepsy for people with Tuberous Sclerosis Complex (TSC) in England.
TSC is a genetic condition which can lead to benign growths in various organs of the body – most commonly the brain, eyes, heart, kidney, skin and lungs – and affects 10,000 people across the UK. Epilepsy is the most common neurological feature of TSC.
Last month, the Scottish Medicines Consortium recommended everolimus for patients, while in March NHS England consulted on draft guidance which said there was 'enough evidence' to consider making the treatment available for many of those affected by seizures.
Ali Royall's son Jack, 26, has TSC and refractory epilepsy. Almost a decade ago, doctors told him he only had a year to live.
The 52-year-old, from Dussindale, said: 'I cannot believe that NHS England have done this. At 17 my son Jack was suffering multiple seizures daily, and was months away from death due to inoperable tumours in his brain.
'On his 18th birthday he was put on everolimus on a trial basis, and it has not only saved his life, but mine too as the strain of caring for him had left me on the verge of suicide on more than one occasion. I am disgusted that the powers that be have ignored all the evidence of just how life-changing this drug is and condemned hundreds of people in England to serious risk and wholly preventable suffering.'
The treatment shrunk the tumours on Mr Royall's brain, kidney, liver and eyes by 90c, allowing him to live independently.
Maxine Smeaton, chief executive of the Tuberous Sclerosis Association, the only UK charity supporting those affected by TSC, said the decision to ignore the evidence was 'disappointing beyond words'.
A spokesperson for NHS England said: 'The panel of doctors, clinicians, and the public assessed everolimus for refractory seizures associated with tuberous sclerosis complex and concluded that it delivered limited benefits compared to other treatments being considered. This treatment can be considered again for funding in November but drug companies have an important part to play by pricing their treatments responsibly.'
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