Boy ‘held to ransom’ in row over £104,000 drug
ABLACK Country schoolboy has been left ‘living with a death sentence’ as a US pharmaceutical company and the NHS are in deadlock over the price of a drug.
Eight-year-old George Monckton was born with cystic fibrosis, and must take 30 pills a day, along with daily physiotherapy, to combat his decline in lung function.
Wonderdrug Orkambi, manufactured by US company Vertex, could stop George’s lung deterioration in its tracks.
But despite being approved by the European Medicines Agency three years ago, the life-changing drug is still not available in the UK.
US drug giant Vertex is demanding a crippling £104,000 per year per patient for the drug, and talks with NHS England have completely bro- ken down. It refused an offer from NHS England of £500 million over five years for the use of its medicines.
Meanwhile, more than 200 people in the UK have died from the cruel disease, without having a chance to get the miracle drug.
“It’s a remarkable drug,” says George’s mother, Nicola Johnson. “It means that children like George won’t having a death sentence hanging over their heads any more.
“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.
“It’s a huge amount of money. But the drug is also preventative, so it could stop the use of other drugs needed further down the line to treat other symptoms. Rather than George reaching his 30s or 40 mark, Orkambi could mean he could live into his 60s.
“The reality is that three people a week die with cystic fibrosis. We don’t know whether helped them – they chance to find out.”
Shadow health secretary Jon Ashworth says families are now being ‘held to ransom’ by the pharma- it would have never had the giant, who posted a 40 per cent increase in profits at the end of the last quarter 2018 to $337 million.
“Those living with cystic fibrosis who are currently denied this lifesaving drug will be disgusted at these profits,” he said.
“This big pharma firm, by refusing to play fair with the NHS, is holding lives to ransom.
“The price they want for Orkambi is simply unjust.
“Ministers should step in and use what means they have to ensure an affordable version of Orkambi is available for those who need it.”
Ms Johnson and son George have joined other families and taken to the streets in protest as they urge the Government to end the deadlock.
They have launched a petition, backed by Dudley North MP Ian Austin, to make the drug available.
“Not having access to Orkambi fills me with fear, anger and a great sadness,” added Ms Johnson.