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Vertex to Theresa May: Orkambi verdict ‘threatens bio investment’

CEO writes open letter to prime minister


Fresh from the news that the NHS in England still isn’t minded to fund treatment with its cystic fibrosis therapy Orkambi, Vertex Pharma has appealed directly to the Prime Minister to intervene – although she may have other pressing matters to consider.

The letter to Theresa May asks for her “urgent intervention” in the case, saying that it made “the most innovative and best offer in the world to NHS England…at a price that is reflective of the exceptionally high prevalence of CF in the UK”.

Faced with the latest NHS England rejection on 4 July, the biotech’s chief executive Jeff Leiden says it is starting to question its commitment to the UK, the home of its international headquarters and 250 employees, and says the UK government’s plans to develop a thriving life sciences post-Brexit are sounding increasingly hollow.

Jeff Leiden

“These policy statements and plans must translate to improved patient access to innovative therapies,” it says in the letter, adding: “Without this, any future biotech investment in the UK is at significant risk.”

“It would be disappointing in the extreme that, as the NHS turns 70, it is found to be shutting the door to a new era of precision medicines that stand to revolutionise healthcare,” it goes on.

The timing for Vertex’s letter isn’t ideal, given the letter was sent as the PM was ensconced in Chequers trying to enforce her Brexit vision on the cabinet, and before chief Brexit negotiator David Davis torpedoed her plans by handing in his resignation this weekend.

The drugmaker previously issued a statement saying it is “outrageous that NHS England does not see a path forward to provide access for thousands of children and young people to the only medicines that treat the underlying cause of CF”, when patients in other European countries including Ireland, Sweden, Germany, Austria, Italy, Denmark and the Netherlands.

It maintains that it has offered a bundle deal for Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), experimental combination tezacaftor/ivacaftor – as well as other CF therapies in development – that provides “budget certainty to NHS England.” Of course, the offer on the table remains confidential so it is impossible to gauge whether either side is being obstructive in the negotiations.

Orkambi was approved for sale in Europe in 2015, but was turned down by the National Institute for Health and Care Excellence (NICE) the following year – and has remained available only on compassionate grounds ever since. NHS England’s position is that NICE’s conclusion that the price being asked for the drugs is “unsupportable” is still valid, and it points out that other countries such as Australia and Canada have also been unable to break that deadlock.

The latest round of talks has led medical charity the CF Trust to the conclusion that “this is the end of the road for negotiations,” according to its CEO David Ramsden.

In a blog post published on Friday, he reveals that after having briefings with both Vertex and NHS England “which are inevitably different in tone, but also more alarmingly at times describe very different realities.”

Aside from the lack of progress in talks, he is also angry that both sides are using press releases to push their arguments “without fully appreciating the impact that this may have for people with CF and their families, and the very real consequences of continued delays.”

“These negotiations should be taking place in the room, not in public and certainly not by using the lives and emotions of the CF community in place of proper, serious discussion,” writes Ramsden.

Article by
Phil Taylor

9th July 2018

From: Marketing



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