The Government has been accused of making an astonishing mistake by signing an estimated £100 million deal with a US pharmaceutical firm for an obsolete cystic fibrosis drug.
Following an often bitter four-year battle with manufacturer Vertex, Health Secretary Matt Hancock announced in October that the drug Orkambi would be available to 5,000 cystic fibrosis sufferers.
The genetic disease causes a build-up of thick mucus in the lungs, and sufferers rarely live into middle age.
Following an often bitter four-year battle with manufacturer Vertex, Health Secretary Matt Hancock announced in October that the drug Orkambi (file photo) would be available to 5,000 cystic fibrosis sufferers
Mr Hancock described the breakthrough – thought to cost the NHS about £10,000 per patient every year – as ‘wonderful news’.
However, another cystic fibrosis drug developed by Vertex and considered far superior to Orkambi was approved for use in America just days before the agreement with the NHS was struck.
The second drug, called Trikafta, produced impressive results in trials, including improving patients’ lung function by four times as much as Orkambi.
A source close to the negotiations said: ‘The way the two stories broke so close to each other, patients might have assumed Trikafta was part of the British agreement but it isn’t.
‘The deal itself is a fudge because it excluded an option for Trikafta and politicians didn’t make that clear. The NHS bought the wrong drug. It’s simply an astonishing mistake.’
Parents and campaigners reacted with fury last night. Sharon Cranfield, 54, whose 18-year-old daughter Jessica has cystic fibrosis, said: ‘Matt Hancock gave people false hope.
Mr Hancock (pictured) described the breakthrough – thought to cost the NHS about £10,000 per patient every year – as ‘wonderful news’
‘He gave the impression the deal they’d done for Orkambi paved the way for Trikafta, but in reality they’ve done a bargain-bucket deal for an old drug. It’s a matter of life and death that Jessica – and everyone else – gets Trikafta,’ said Mrs Cranfield.
Emma Hawkey, 50, whose 17-year-old daughter Grace also has cystic fibrosis, said: ‘We’re seeing miraculous stories on Facebook from people on Trikafta. It’s devastating for Grace because it would help her but she could be years away from getting it.’
Vertex is not expected to submit Trikafta, also known as ‘the triple’ because it contains three active ingredients, for approval by the UK authorities until January 2021, according to documents seen by this newspaper.
NHS England said last night: ‘The NHS and the National Institute for Health and Care Excellence have agreed a deal that has immediately benefited 5,000 CF patients. Trikafta is not licensed for use in Europe.’
Mr Hancock said: ‘We are determined to get cystic fibrosis patients the treatments they need, and we are continuing to engage with Vertex.
‘The deal was great value for money for the NHS and most importantly will improve thousands of lives.’
A spokesman for Vertex said: ‘We will be submitting the triple combination to NICE following the European Medicines Agency’s appraisal.’
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