Jack Royall who has had life saving drug treatment to treat tuberous sclerosis. Pictured with his mum Ali. Picture: ANTONY KELLY
Rosa McMahon Saturday, April 4, 2015 10:25 AM
A student who has fought an incurable genetic disease all his life has today pleaded with health bosses after they refused to pay for his life-saving treatment.
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A spokesperson for NHS England said: No new treatments are made routinely available on the NHS without having been approved by NICE (National Institute for Health and Care Excellence) or forming part of a NHS England clinical commissioning policy.
NHS England is considering the formation of clinical policy on Everolimus for a number of indications as part of our work programme for the coming year, along with a large number of other competing priorities, including working with NICE to determine whether any of those indications will be included in their work programme.
In the interim, the Individual Funding Request route remains open to clinicians for patients with exceptional need.
Jack Royall suffers from tuberous sclerosis, a condition which causes non-cancerous tumours to grow in major body organs.
The family of the 22-year-old, from Catherine Gardens in Thorpe St Andrew, have watched as he fought back from major brain surgeries and resuscitations after severe seizures.
In the past five years he has been able to live an independent life after a drug trial shrunk the brain, kidney, liver and eye tumours by up to 90pc. But now Mr Royall could be plunged back into a desperate fight for survival as the funding for the drug Everolimus could end in May and the NHS will not foot the bill.
Link:
Norwich students desperate plea to NHS for life-saving treatment