DRUG FIRM CANCELS TALKS OVER NHS DEAL
CYSTIC FIBROSIS SCANDAL
A DRUGS giant stunned Labour’s health chief yesterday by cancelling their meeting – after he blasted the American firm’s refusal to agree an NHS deal for the Orkambi cystic fibrosis “wonder drug”.
In Monday’s Daily Express, shadow health secretary Jon Ashworth revealed his hope of positive talks with Vertex Pharmaceuticals.
But while on BBC Two’s Victoria Derbyshire show, his office was told by Vertex it was not turning up.
Last night he said the company “did not give an explanation but my staff were left with the impression they were angry I had been in the media discussing it.
“I’m very disappointed with this as they would have had the opportunity to put their case about not agreeing a deal for these drugs to me.
“I would be negligent in my responsibility as shadow health secretary if I did not discuss the concerns of the whole CF community over Orkambi.”
He added: “I can understand that a drug company that has invested huge amounts in a research capacity will want to get the best deal. But we have got to find a way through.
“It is heart-breaking for a parent to know they will probably outlive their child who has CF yet know there is a drug out there that can help them.
“NHS England and NICE want to get back round the table with Vertex but the NHS has a finite pot of money.”
Jeni Beviere, 42, whose 12-year-old son Josh is in hospital having intravenous antibiotics for a lung bug, called Vertex’s decision “disgusting”.
“This is the life of my son they are messing with. His lungs are desperate for these drugs,” said Jeni from Tunbridge Wells, Kent. “I’m stunned and so upset. How can we get this resolved when the parties can’t even agree to meet up to discuss it?”
Tory MP Paul Scully said the NHS should not “pay over the odds”. He said: “I hope Vertex will come back to the table with a more reasonable offer so people in the UK with CF can get the huge benefit of Orkambi as soon as possible.”
Labour MP Rachael Maskell said: “It is absolutely right pharmaceutical companies are challenged over their drug pricing policies. If the Government cannot negotiate a deal, then it should be using the power of office to make sure that Orkambi, and other drugs, are released.”
Of the estimated 70,000 people with
CF, 30,000 are in America and 10,000 are in the UK.
Vertex is the major developer of life-saving cystic fibrosis drugs.
Last year its profits soared by 40 per cent with £2.41billion in revenue, with shares rising 13 per cent since the new year. Chief executive Dr Jeff Leiden last week reportedly sold 32,250 shares for a total of $6million.
Last year NHS England saw a £500million-plus, five-year offer rebuffed for the firm’s current and future CF products, including Orkambi. The drug’s price is £104,000 per person, per year and “stops the clock” in deterioration of around 50 per cent of CF patients.
Studies show at 96 weeks a decline in lung failure by 42 per cent, the main cause of CF deaths.
NHS England’s £108million-a-year Vertex offer was for the firm’s entire portfolio – Orkambi, Kalydeco, Symkevi and a super “Triple Therapy” drug under development.
Triple Therapy – a combination of Kalydeco, Tezacaftor and a third drug – could potentially help 90 per cent of UK sufferers, about 7,000 CF patients.
NHS England currently has a rolling £55million-a-year deal with Vertex for Kalydeco, which tackles a specific mutation that affects just 460 sufferers of the condition.
That means NHS England wanted – for an increase of £53million – to get treatment for just under 7,000 more CF patients.
Vertex says by only doubling its expenditure it can treat around 15 times more patients. The drugs giant also argues countries like Germany pay almost 90 per cent more for Orkambi than the NHS.
Stephen Hyde, an associate professor of molecular therapy at the University of Oxford, stressed there are two powerful opposing arguments.
He said it costs $2.5billion to bring a new drug to market.
“There is a relatively small CF patient population so the manufacturer has to get its drugs development costs back, and do that in the lifetime of the patent, so something like 10 years or so,” he said.
“So it needs to charge a bunch of money and we want new drugs to be developed. So I get that side of it.
“But I absolutely get the other side of it – which is there is no question that this drug would benefit a large number of people.”
The Health and Social Care Committee is launching an inquiry into the issue, which sits on March 7.
The Department of Health and Social Care said: “Despite being offered the largest ever commitment in the history of the NHS, Vertex refused to accept.”
Vertex claims it has already supplied products for free to around 600 UK patients with “serious medical need”.
A company spokeswoman said: “We are determined to find a solution that allows the NHS to provide patient access to our precision medicines across the UK with budget certainty and which also allows Vertex to continue its research.”