English denied cystic fibrosis drug to be given out in Scotland
CYSTIC fibrosis patients in England are being denied costly new treatments that are to be offered to those in Scotland, it emerged last night.
Today the Scottish government will make the life-extending drugs Orkambi and Symkevi available free on prescription.
The decision comes just weeks after the Scottish Medicines Consortium, which provides independent advice on treatments, rejected the drugs on cost grounds.
And it opens up a divide with England, where, to the dismay of campaigners, the National Institute for Clinical Excellence has ruled the drugs are too expensive.
It is understood that the decision was made after Scottish ministers agreed a discount on the previous price with the US manufacturer of the drugs, Vertex. Sources declined to give details of the discount, saying it was ‘commercially sensitive’. But the list price of Orkambi is £ 104,000 per patient per year.
The move will pile pressure on Health Secretary Matt Hancock to reopen negotiations with Vertex, whose prices have been criticised by MPs.
It is extremely rare for Scottish ministers to overrule the decision of the SMC – normally responsible for which drugs will be available on the NHS in Scotland, and last night the decision led to allegations of political interference. A Whitehall source said: ‘Putting politicians instead of clinicians in charge of which drugs should and shouldn’t be available leads to bad decipatients sions and could lead to the NHS getting ripped off.’
Tory MP Bill Wiggin, who has campaigned on the issue, said the SNP-led government had reduced the prospects of elsewhere in the UK receiving the drug.
Mr Wiggin said: ‘The Scottish government have undermined the negotiating position of the NHS. By caving in to the brutal negotiating tactics of Vertex and overruling their own version of Nice they have made life extremely difficult for the parents of children with this dreadful condition in the rest of the country.’ Cystic fibrosis causes a build-up of sticky mucus in the lungs, leaving patients vulnerable to infections.
Average life expectancy for those with the illness is only
‘Dreadful condition’
31. Orkambi and Symkevi are credited with extending life expectancy, with young children benefiting the most.
Orkambi, licensed for use in the UK four years ago, is used to treat patients aged two and older, while Symkevi is for those aged 12 and above.
More than 10,000 people in the UK have cystic fibrosis.
A Scottish government source said: ‘We should be in a place where an agreement is reached with Vertex, which will allow for these [drugs] to be available on the NHS in Scotland when they are not in the rest of the UK.’