Joy for Thorpe St Andrew student over life-saving treatment – but fight against NHS goes on

Jack Royall, who suffers from tuberous sclerosis, celebrates with mum Ali and sister India, after be

Jack Royall, who suffers from tuberous sclerosis, celebrates with mum Ali and sister India, after being offered the treatment he needs by the drug company that makes the medicine.Picture by SIMON FINLAY. - Credit: Archant Norfolk

There were tears of joy for Jack Royall and his family today as his life battle received a huge boost.

Readers had rallied to support the 23-year-old after hearing that NHS bosses had refused to pay for vital medication for the incurable genetic disease he suffers from, tuberous sclerosis.

But now drug company Novartis has offered to pay for the £36,000 a year treatment on compassionate grounds.

When Mr Royall, of Catherine Gardens in Thorpe St Andrew, heard the news – he wept. 'I cried at the thought of still being alive,' he said.

'If Novartis hadn't made that decision, I could end up not being here.'

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But the fight is not over as Mr Royall is spearheading a campaign to get the drug for others suffering with tuberous sclerosis. The medication has proved vital to him, having already shrunk the non-cancerous tumours on his brain, kidney, liver and eyes by 90pc.

Mr Royall's childhood was blighted by major brain surgeries and severe seizures and his mum feared she would bury her only son.

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His mum Ali Royall, 49, of Lucas Court, Dussindale, said: 'It's a wish come true.

'The thought of going back to where we were is devastating. Now we know he will be kept alive, I can't believe it.

'But Jack doesn't want others to suffer and he wants to help them now.'

Mr Royall has fought the disease all his life, missing major milestones and qualifications because of the aggressive condition.

Yet in the past five years he has been able to live independently after the drug trial dramatically shrunk the tumours and gave him hope.

Although the treatment is not a cure, it is an effective treatment.

Mr Royall has said he is disgusted that NHS England will not pay for the Everolimus drug, despite it being licensed, and is campaigning for others' cause.

Already he has got 2,700 signatures on a petition for the prime minister David Cameron.

Mr Royall said: 'I don't want other people to go through what I was going through, to suffer like I did. I have got to carry on helping.

'If Novartis hadn't made that decision, I could end up not being here.

'I am fighting for these other people because I don't want to see their childhoods like mine, having surgery, in hospital, missing school. This drug saves lives.'

There are 32 adults and children in the UK who have an urgent need for treatment, and may die because they cannot access it.

NHS England says they are considering forming clinical policy on the drug and offer specialist funding in the interim.

But Mr Royall was previously told he is not eligible for that cash pot.

Jayne Spink, chief executive of the Tuberous Sclerosis Association, said sick people are crying out for the NHS to step in.

'NHS has been aware of this drug for two years,' she said. 'That's enough time for them to do the research.

'It's unacceptable to be placing patients at risk for the sake of a process.'

To sign Mr Royall's petition visit

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