High price of cystic fibrosis drug 'not political', firm's boss tells MPs

The chief executive of a US company holding out for a high price from the NHS for its cystic fibrosis drugs was asked if he might be considered “a political minion for President Trump” as he gave evidence to MPs on Thursday.

Trump has accused the UK of “freeloading” by refusing to pay the high prices American drug companies charge in the United States, said Ben Bradshaw, a member of the House of Commons health and social care select committee and former health minister.

Jeff Leiden, chief executive of Vertex, which makes Orkambi, a drug to treat the underlying causes of the disease and which is not available on the NHS because of a price row, said it was “a much more complicated issue” than that. He denied there was a political aspect to two years of fruitless negotiations, which have been in stalemate for the last six months.

In answer to earlier statements from the head of the National Institute for Health and Care Excellence (Nice) that advertising to the public in the US consumes more of companies’ budgets than research and development, he said: “Vertex does not spend one penny and will not spend one penny on direct-to-consumer advertising.”

In the US, Orkambi sells for more than $270,000 per patient per year. The asking price in the UK is £104,000 per year, which the NHS says is unaffordable.

Leiden said the price NHS England was offering was a 90% discount on that agreed in most European countries. He cited Ireland and France among others as countries that had done deals and had patients on treatment. They would want the same price if he agreed to NHS England’s offer, which is £500m over five years for access to Orkambi and other current and future drugs for cystic fibrosis. That would amount to Vertex making $850m a year worldwide.

“Unfortunately that would not allow us to develop the next set of cystic fibrosis medicines. We’re spending $1bn a year just in [research and development]. Vertex on $850m a year would go out of business in three to five years,” he told the committee.

It would mean he could not keep his promise to patients to develop a cure for the disease, he said. “It’s not that we won’t take the offer – we really can’t, and fulfil our promise to patients around the world.”

Leiden admitted that Vertex had paid no UK corporation tax in the last five years and that two UK directors had received share options of £15m, as revealed by the Guardian on Wednesday. His own salary was $17.2m last year. However the company, he said, was making a loss. It would be paying UK and US taxes once it went into profit in a few years’ time, he said.

Orkambi can help 40% of patients with the disease but has only limited efficacy. Canada’s cost-effectiveness body has turned the drug down. Andrew Selous, also on the committee, pointed out that France, New York state, Ireland and the Netherlands have paid high prices but are now all seeking discounts of between 70% and 82% from the company.

In Ireland, Prof Michael Barry of the cost-effectiveness body which appraised Orkambi there, the National Centre for Pharmaeconomics, told the Guardian he had recommended the government reject the drug.

“We said no then and we would say no now. From my point of view it is a poorly efficacious product and grossly overpriced,” he said.

NHS England told the committee that it would be happy to negotiate a possibly higher price if Vertex accepted the £500m offer and then produced data later on showing it or future drugs were more effective than was thought.

Sarah Wollaston, chair of the select committee, urged Vertex to allow patients access to Orkambi now and negotiate afterwards – as other countries like France had done.

“I do hope in your future negotiations with NHS England that all parties put patients front and centre in everything they do,” she told the room, before going to speak to the families of cystic fibrosis patients who were demonstrating in Parliament Square.


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