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Is Orkambi deal close? Vertex meets again today with NHS England

Campaigners hopes rise after three year wait


A breakthrough in the long-running dispute over Vertex’s cystic fibrosis drug Orkambi could be within sight, as the company meets again today with NHS England and NICE.

It has been three years since Orkambi was approved in Europe, but for much of that time Vertex has been at loggerheads with England’s cost effectiveness watchdog NICE and NHS England about the price of the drug.

Orkambi’s clinical trials show the drug can improve lung function and respiratory symptoms in people with the life-shortening condition, and could be appropriate for around 50% of sufferers, many of whom are children.

Both sides have blamed the other for inflexibility on the cost and value of the drug, which has a list price of £104,000 ($136,000) per patient per year.

NHS England went public last summer with its own five-year £500m pricing deal for Orkambi and Vertex’s other CF treatments Kalydeco and Symkevi, the latest addition to its portfolio.

Vertex said it simply could not accept this offer, but said it had offered its own confidential deal, which it claims is the best deal anywhere in the world.

This standoff led to an eight month period with no progress, but was broken when the Commons health select committee called both sides to an inquiry two weeks ago to explain the impasse.

This was followed by a meeting between Vertex CEO Jeff Leiden and UK health secretary Matt Hancock, who described the talks as ‘constructive’.

This in turn led to the pharma company restarting talks with NICE and NHS England, with a second meeting scheduled for today in Manchester.

The long running row has seen patient campaigners take to the streets and social media to protest, putting pressure on both sides to come to an agreement. Laurence Powell is one such campaigner, calling for access on behalf of his son.


Nick Medhurst, policy manager for the Cystic Fibrosis Trust says the charity and the many CF campaigners feel a renewed sense of optimism about access to what they are sure is a transformative medicine for people with cystic fibrosis.

“The news that the parties are sitting down again, and with pronouncements from both the company and the secretary of state that talks have been constructive, makes us optimistic,” he said. “But unfortunately we've been optimistic before, so we won’t count our chickens just yet.”

The CF Trust believes that some sort of outcomes-based deal, drawing on its own registry of CF patients, could help unlock a deal. There is extra pressure on NHS England to arrive at a solution after Vertex recently reached agreement with Scotland for access to Orkambi and Symkevi.

Article by
Andrew McConaghie

21st March 2019

From: Healthcare



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