A schoolboy is 'living with a death sentence' because the NHS aren't able to fork out for the cystic fibrosis drug Orkambi.
George Monckton, from Oldbury, West Midlands, must take 30 pills a day, along with daily physiotherapy, to combat his decline in lung function.
Orkambi, often labelled a 'wonder drug', could stop the clock on the schoolboy's lung deterioration, the main cause of death for those with cystic fibrosis (CF).
But despite being approved by the European Medicines Agency three years ago, the life-changing drug is still not available in the UK.
The NHS is in deadlock with US pharmaceutical company Vertex who is demanding £104,000 per year per patient for the drug.
Protests are due to be held outside Parliament in March to urge progress in the availability of Orkambi - which could help 50 per cent of cystic fibrosis sufferers.
George Monckton, 8, is 'living with a death sentence' is one of thousands of children unable to access the drug Orkambi for cystic fibrosis. Pictured, using a nebuliser to take medication
George's mother, Ms Johnson, said she is filled with anger as the NHS remains in a deadlock with US pharmaceutical company Vertex over the price of the drug
Geroge's mother, Nicola Johnson said: 'Not having access to Orkambi fills me with fear, anger and a great sadness.
'It's like a veil over us, knowing CF can strike George and damage him at any time.
'It's always there. You're getting on with life and someone talks about the future, and suddenly grief hits you.'
Conventional cystic fibrosis treatments target the symptoms, but precision medicines tackle the underlying genetic mutations which cause the condition.
Orkambi received its European license in November 2015. But despite the National Institute of Health and Care Excellence (NICE) recognising Orkambi as an important treatment, they rejected its use.
The decision was based on cost factors and the lack of long-term data on Orkambi's effectiveness.
Vertex refused an offer from NHS England of £500million for a five-year supply, the biggest offer it has ever made, and talks have completely broken down.
Orkambi is therefore unavailable in the UK and is only ever prescribed on rare compassionate grounds.
Meanwhile, more than 200 people in the UK have died from the cruel disease, without having a chance to get the miracle drug.
Ms Johnson said: 'It's a remarkable drug. It means that children like George won't having a death sentence hanging over their heads anymore.
'When it got approved three years ago, we could have partied on the streets.
'But we still can't get it, and meanwhile George has got early onset liver disease.'
Ms Johnson and George have joined other families and taken to the streets in protest as they urge the Government to end the deadlock over the drug. US drug giant Vertex is demanding £104,000 per year per patient for the drug, and talks with NHS England have broken down
Orkambi, often labelled a 'wonder drug', could stop the clock on George's lung deterioration, the main cause of death for those with CF. Pictured at home using a nebuliser
George was born with cystic fibrosis and must take 30 pills a day, along with daily physiotherapy, to combat his decline in lung function
Cystic Fibrosis, of which 30,000 people are living with in the US and 10,400 in the UK, affects the lungs and digestive and reproductive systems in particular.
Around 40 per cent of people with CF will
