Portsmouth mum accuses Orkambi drugs company Vertex of putting greed before lives after executives’ £15m windfall

A MUM whose daughter has cystic fibrosis has accused a drug company of putting greed before lives after it emerged two of its UK executives were paid £15m.

Wednesday, 20th February 2019, 1:59 pm
Updated Wednesday, 20th February 2019, 3:04 pm
Gemma Weir and her four-year-old daughter Ivy, from Portsmouth, delivered hundreds of letters to Downing Street calling for drug Orkambi to be free. They are pictured with Grace Paget from the Cystic Fibrosis Trust

US-based Vertex Pharmaceuticals manufactures Orkambi, which can stop the symptoms of cystic fibrosis getting worse.

The NHS says the price that Vertex wants for a course of treatment – £104,000 per person per year – is too high. Vertex has rejected the NHS's £500m offer for the life-saving drug after long negotiations over the price, so it has only been available privately since it was approved for use in 2016.

During this time it is feared that up to 220 people have died needlessly from cystic fibrosis.

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It has now been revealed that in 2017 two UK Vertex executives, Simon Lem and Simon Bedson, pocketed more than £15m through their share options. The pair also received pay above £1.1m.

Mr Bedson retired last year after seven years as a senior vice-president after Vertex's unsuccessful attempts to get the NHS to fund Orkambi.

Mr Lem, the firm's general manager for northern Europe, said last year the company’s ‘priority since the medicine was approved two and a half years ago has been to work with NHS England to secure access to our medicines as soon as possible’.

He also said Vertex ‘shared the cystic fibrosis community's sense of urgency’.

But the huge payouts have been met by fierce criticism from Paulsgrove campaigner Gemma Weir, whose daughter has the condition which causes a thick mucus to clog up the lungs and digestive system.

Gemma told The News: ‘There are people dying out there so before they line their pockets they should make sure they get the job done.

‘I understand these companies will have huge payouts but it should not be at the expense of people’s health when there is a deal on the table. Mr Bedson was pushing for the NHS to have the drug but it didn’t actually happen so he was not successful.’

Vertex bosses have agreed to meet health secretary Matt Hancock to breach the impasse – a move Gemma admitted she was pinning her hopes on. ‘Lots of people have tried but nothing has been successful. Hopefully Matt Hancock can be the missing piece of the jigsaw,’ she said.

The mum added: ‘Vertex is quite happy to sit back and wait on other drugs it has coming out in the pipeline where they know they have a deal rather than accept a deal on Orkambi it is not happy with.

‘Vertex gives the spiel about caring for people’s health but it is obviously not important enough for them to accept a deal.’