Meet Keira – the little girl who could have a price put on her life by the NHS.
The eight-year-old from Wootton has around 20 tumours inside her brain.
Her rare genetic condition, Tuberous Sclerosis complex, means the tumours could grow and become potentially fatal at any time.
A ‘miracle’ drug called Everolimus could save the life of Keira and hundreds of other children and adults by shrinking their inoperable brain tumours.
But, with a year’s supply of the one-a-day tablets costing between £18,000 and £32,000, the NHS has now deemed it too expensive to prescribe.
Despite spectacular results with Tuberous Sclerosis patients who had been given as little as 12 months to live, NHS bosses decided earlier this year that Everolimus is “not currently affordable.”
This week Keira’s mum Juliette Felce joined other parents and patients in a protest outside the houses of Parliament.
She took Keira along in her special reclining wheelchair – which the NHS also refused to provide.
Juliette said: “It should be automatic that children who need this drug, get it.
“We have to fight for lots of things as parents, but we should not be fighting for this.
“It is like they are putting a price of my daughter’s life. Yet she is priceless.”
Keira suffers from severe epilepsy due to the tumours, and has to be monitored constantly as she sleeps because the fits affect her oxygen levels and breathing. She also has autism.
Juliette said: “At the moment she doesn’t need Everolimus, but that could change at any time if the tumours grow.
“I need the reassurance of knowing the drug is available for her immediately she starts needing it to survive.”
The drug would cost between £40 and £87 a day to prescribe – less than the cost of treatment for a kidney dialysis patient.
Backing the Everolimus campaign is MP Greg Mulholland, who said: “NHS England cannot let these children and their families down. They have suffered enough.”
Julie Spink, chief executive of the Tuberous Sclerosis Association, said: “The medicine these young people need in order to continue living is sitting on NHS pharmacy shelves.
“It is totally abhorrent that their families should be forced in planning for the end of life for these patients.”