The chief executive of a company making a potentially life-saving cystic fibrosis drug that the NHS says is unaffordable was paid $18.8m (£14.4m) in cash and shares last year, the Guardian can reveal.

A circular to shareholders ahead of the company’s upcoming annual meeting showed that Jeff Leiden’s deal was 81 times more than the median Vertex employee was paid and an increase on last year’s $17.2m deal. Separate stock market announcements show that he has also sold more than $70m of company stock over the past two years, some or all of it handed to him as part of his pay deals.

His personal remuneration in 2018 is enough to fund a one-year course of its cystic fibrosis drug Orkambi for 137 patients. Vertex is asking £105,000 per patient per year for the drug, which the NHS insists is not value for money. There are 10,400 children and young adults with cystic fibrosis in the UK, 40% of whom could benefit from Orkambi.

The NHS last July offered Vertex £500m over five years, with the potential to extend to 10 years and £1bn, for access to Orkambi and other drugs in the pipeline for the disease. Vertex has said no. Negotiations have recently resumed but no progress has yet been reported.

Seven of Vertex’s top executives shared $48.2m between them, enough to supply the drug to 369 patients, or nearly 9% of all British cystic fibrosis sufferers who, it is thought, could benefit from Orkambi.

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The scale of payouts at Vertex, which trimmed its compensation scheme after Leiden was paid $36.6m in 2014, has triggered concern among investors. The controversy over the high price of Orkambi and Vertex’s other cystic fibrosis drugs has reverberated around the world. Some countries have done deals, but the UK has more cystic fibrosis patients than any except the US.

One of the company’s shareholders will use the annual meeting to air concerns that directors may have an incentive to push up drug prices at the expense of the company’s long-term reputation.

In a message to shareholders, Vertex said its pay scheme was justified by growth in the company’s stock market value, which has soared from $7bn in 2012 to $45bn this year.

But the New York-based Trinity Health tabled a resolution asking for the Vertex pay committee to report to shareholders on whether its pay structure should “incorporate public concern regarding prescription drug prices”.

“We are concerned that the incentive compensation arrangements applicable to Vertex’s senior executives may not encourage them to take actions that result in lower short-term financial performance even when those actions may be in Vertex’s long-term financial interests.”

It pointed out that executive bonuses were linked to one-year revenue targets heavily weighted towards income from sales of cystic fibrosis drugs.

Vertex recommended to its shareholders that they vote against Trinity Health’s proposal.

“The price balances the need for patient access, while garnering a fair return for our shareholders and ensuring sufficient investment in the discovery and development of future transformative medicines,” it said.

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The company also recommended that investors vote against a proposal by another shareholder, the Friends Fiduciary Corporation, that Vertex make greater disclosures about its direct and indirect lobbying activity, including on drug prices.

The proposal read: “We are concerned that Vertex’s lack of lobbying disclosures, including lobbying done indirectly by trade associations and other organisations, and any potential negative publicity for opposing drug price initiatives, may present reputational risks for Vertex.”

Emily Birchall is working with the organisation Just Treatment to get access at a fair price to Orkambi for the NHS. Her son, Jack, is two and a half years old and could benefit if it was available.

“As the mother of a child with cystic fibrosis these numbers make me sick. My child and thousands of others across the UK are denied access to life-changing medicines whilst Vertex’s CEO, Jeff Leiden, gets richer and richer through a pricing strategy that holds children’s lives to ransom.

“It is clear that lives matter less to Vertex executives than their pay packets. Sadly, emotional appeals to Vertex to do the right thing and charge a fair price haven’t worked, and if the current negotiations fail, I would urge [the health secretary] Matt Hancock to use his legal power to take away Vertex’s monopoly so the NHS can buy an affordable, generic version of Orkambi for my child and all eligible cystic fibrosis patients in the UK.”

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Noting the rise in Vertex’s balance sheet in the first quarter to approximately $3.48bn in cash and marketable securities, she added: “They are literally making money faster than they can spend it, despite expanding their research and development into many other areas, and yet, they claim that they cannot possibly drop their prices. Clearly, they could – they are simply choosing not to, at the expense of my own child’s and other children’s lives.”

Rebecca Hunt, the vice-president, international corporate affairs, at Vertex Pharmaceuticals, said: “More than 90% of our executive compensation is based on the performance of the company and our executive compensation was overwhelmingly approved last year by more than 95% of shareholders. We measure performance by our ability to discover and develop precision medicines for people with serious diseases. Over the last seven years, we’ve successfully had three precision medicines licensed for CF [cystic fibrosis]. The prices of our medicines are based on the innovation and value they bring to patients and the significant R&D investment we make to develop these and future treatments, and are not related to executive compensation.



”Vertex is committed to finding a solution that provides access to our CF medicines for all eligible patients in England, and we continue to meet with NHSE [NHS England]and Nice [National Institute for Health and Care Excellence] in the hope of achieving this objective.”