Drug maker 'will make $21bn from treating cystic fibrosis'

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https://www.theguardian.com/society/2019/aug/12/drug-maker-will-make-21bn-from-treating-cystic-fibrosis

Drug maker 'will make $21bn from treating cystic fibrosis'

Sarah Boseley Health editor

Mon 12 Aug 2019 06.00 BST

A US company, which is refusing to drop its price for the life-changing cystic fibrosis drug Orkambi to make it affordable to NHS England, is set to make $21bn (£17bn) in profit from that and a sister medicine, according to research.

Countries around the world are struggling to pay for Orkambi, made by Vertex, which has a list price of £104,000 per patient per year and is not a cure. The National Institute of Health and Care Excellence (Nice) in England has said it is not cost effective. On Monday, the Scottish Medicines Consortium will decide whether to approve the drug for children.

Parents in England have campaigned, demonstrated on the streets and pleaded for their children with cystic fibrosis to be allowed Orkambi for more than three years since it was licensed. Vertex claims it has invested billions in research, has made a loss and needs a price that will allow it to invest in future drugs for the disease.

But a research paper by Aidan Hollis, professor of economics at Calgary University in Canada, disputes that. It estimated that Vertex will make $21.1bn in profit over the lifetime of Orkambi and an earlier drug called Kalydeco that is available on the NHS but treats only a small proportion of patients.

Early funding for research into the two drugs came from a cystic fibrosis foundation in the US, which received a royalty on future profits in exchange. That was bought by a company called Royalty Pharma in 2013 for $3.3bn. Hollis calculated in his paper, shortly to be published in the journal Healthcare Policy, that the anticipated future profits at that time were $33bn. Deducting Vertex’s costs, he calculates the figure to be $21.1bn.
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