Cystic fibrosis scandal: Fury over US firm's 'refusal' to set price for ...

cysticA US drugs firm is "playing with people's lives" by refusing to do a deal over a life-saving drug (Image: Getty Images)

Meanwhile, a Daily Express-backed petition urging the NHS and drugs giant Vertex - headed by chairman Jeffrey Leiden - to thrash out an arrangement on the drug has topped 53,000 signatures. Orkambi, which is market-priced at £104,000 per person, per year, "stops the clock" in deterioration from the genetic disease - which affects lungs and other organs - of 50 per cent of UK patients. It has now emerged that a rebuffed £500million NHS England deal last year was not just for Orkambi - but all the firm's current and future CF drugs for the next five years.

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In financial results that will inflame the row, the company has posted a 40 percent increase in revenues for the last quarter of 2018, with £2.3billion in the bank.

Today's Labour health spokesman Jon Ashworth is hoping to meet Vertex executives. He told the Daily Express: "Vertex is making huge profits but is behaving disgracefully. They are playing with people's lives.

"The NHS and National Institute for Clinical Excellence (NICE) have offered them a very good deal.

"This big pharma firm is holding lives to ransom. The price they want is unjust.

"If they refuse to budge, ministers should step in and use what means they have to ensure an affordable version of Orkambi is available."

cysticVertex chairman Dr Jeffrey Leiden (Image: Dina Rudick/The Boston Globe via Getty Images)

The Commons Health and Social Care Committee is holding an inquiry on the impasse, to sit on March 7.

Last week the Daily Express started telling the heartbreaking stories of British children who need Orkambi to stay alive. Vertex Pharmaceuticals Phar-DRUG SCANDAL is the world's main developer of cystic fibrosis drugs.

We can reveal that NHS England's offer for its portfolio included Orkambi, Kalydeco, Symkevi and a now-being-developed super "Triple Therapy" drug.

Although NHS England previously had a £55million-a-year contract with Vertex for Kalydeco, that would have been renegotiated as part of the five-year deal.

Triple Therapy - a combination of Kalydeco, Tezacaftor and a third compound - could actually tackle the cystic fibrosis mutation and benefit 90 per cent of all CF patients.

orkambi protestCampaigners stage a protest outside Downing Street (Image: PA Archive/PA Images)

Britain is the second biggest market for Vertex, behind the USA.

Of the 70,000 people worldwide with cystic fibrosis, 30,000 are in America and 10,000 in the UK.

Orkambi is available in Austria, Australia, Denmark, Germany, Ireland, , Netherlands, Sweden and the USA.

Last December, the Scottish Medicines Consortium agreed a patient-by-patient deal with Vertex for its medicines.

Orkambi has been withdrawn by Vertex from the NICE assessment on effectiveness and value for money, so it is not available on the NHS in England, Wales and Northern Ireland.

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Newer drug Symkevi has also been withdrawn from NICE's process.

But as Vertex is the only firm researching a cure for CF, some UK families feel NHS England has not offered it a good enough deal.

NHS England is urging Vertex to "re-engage" with it and NICE.

Health Secretary Matt Hancock has vowed not to "let big pharmaceutical companies hold the NHS to ransom". He said the offer was "incredibly generous" and added: "They need to accept the deal."

Some MPs want to use 1977 legislation - "Crown use licensing" - to override Vertex's patents on Orkambi and let others make a cheaper version. 

orkambiOrkambi Oral Granules (Image: Vertex)

But the fear is that it would make Vertex unwilling to deal with the NHS again. Meanwhile, Stephen Morgan, Labour MP for Portsmouth South, has urged all MPs to trying breathing through a straw - so they know how it feels having cystic fibrosis.

Ivy Weir, aged five, in his constituency, has CF.

Mr Morgan said: "Though Orkambi has been made available in the UK, sufferers still do not have access to it.

"The Prime Minister said she wanted a quick resolution to the negotiations.

"But we are no further along than we were 1,000 days ago."

cystic70,000 people worldwide live with cystic fibrosis and 10,000 are in the UK (Image: Getty Images)

Ivy's mother Gemma Weir, 35, from Portsmouth, told us: "Ivy dreams of being a vet as she loves animals. She rides her horse Storm but is unable to groom her due to risk of bugs in her lungs.

"We want her to have a full life and a career and the drugs can help that happen."

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."

A NICE spokesman said: "We are still very keen for the company to engage with us but as it stands they are not doing that."

Vertex claims that since the NHS England row, it has supplied products for free to around 600 UK patients with "serious medical need".

Vertex's Rebecca Hunt said: "We are determined to find a solution that

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