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Norwich mum’s relief as NHS approves funding for drug which ‘saved son’s life’

Jack Royall, who suffers from tuberous sclerosis, with mum Ali and sister India. A drug which helps manage his epilepsy has been made publicly available by NHS England.
 Picture by SIMON FINLAY.

Jack Royall, who suffers from tuberous sclerosis, with mum Ali and sister India. A drug which helps manage his epilepsy has been made publicly available by NHS England. Picture by SIMON FINLAY.

A Norfolk mother has expressed delight after the NHS approved funding for a drug which could be “life-changing” for her son.

Jack Royall who has had life saving drug treatment to treat tuberous sclerosis. 
Picture: ANTONY KELLYJack Royall who has had life saving drug treatment to treat tuberous sclerosis. Picture: ANTONY KELLY

Jack Royall suffers from tuberous sclerosis complex (TSC) – a rare genetic condition which can lead to growths in organs such as the brain, eyes, heart and kidneys – and refractory epilepsy, a common neurological feature of TSC.

He has endured serious seizures for much of his life as a result of the illness.

His condition has not responded to standard epilepsy medication – but one drug, everolimus, which he received on a trial aged 17, helped control his seizures and shrunk a number of growths in his organs.

An application for the drug to be made publicly available was rejected by NHS England earlier this year, despite guidance which said there was “enough evidence” to support the move.

But on Saturday, following another consultation, NHS England announced its decision to fund the everolimus. It will be available for those affected by seizures from April 2019.

Jack’s mother Ally Moncur-Royall, from Dussindale, said epilepsy had “nearly destroyed” their lives.

“This drug saved me son’s life and mine. Our lives were spent in ambulances and hospital, with near-death experienced on a regular basis,” she said.

“I am elated with the news that NHS England has approved everolimus to become available for TSC patients suffering from epilepsy.”

Dr Chris Kingswood, consultant nephrologist and head of research strategy at the Tuberous Sclerosis Association (TSA), said: “NHS England has always recognised that there is enough clinical evidence to commission everolimus for TSC-related refractory epilepsy.

“The 20pc chance of seizure freedom and 60pc chance of significant seizure reduction from treating this group of patients with everolimus is a massive improvement compared to using traditional anti-epileptic drugs.”

The TSA says that around 70 people in the UK are currently prescribed everolimus for TSC-related kidney and brain tumours – but NHS England estimates a further 300 people in England will benefit from treatment with the drug for TSC-related refractory epilepsy.

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