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Optimism on Orkambi in England as talks to resume

Scotland's deal puts pressure on NHS England and NICE


The UK’s health secretary Matt Hancock met Vertex’s chief executive Jeff Leiden in London yesterday with the aim of breaking the impasse over cystic fibrosis drug Orkambi.

The meeting came after Mr Leiden flew in the from the US last week to appear before MPs in Westminster, telling them his company simply couldn’t accept what NHS England called their ‘fair and final’ pricing offer for the rare disease treatment.

However, both sides have expressed willingness to re-start negotiations.

Matt Hancock tweeted yesterday:

“Constructive meeting with Vertex CEO with NHSE & NICE to find ways of breaking the impasse on Orkambi so that we can get this to those who desperately need it. Vertex, NHSE and NICE will meet again next week.”

A Vertex spokesperson commented: “We are grateful to the Secretary of State for his leadership on this matter. We are committed to working with all parties to make our potentially life-changing medicines available to people living with cystic fibrosis in England as quickly as possible. To this end, Vertex, NHS England and NICE have agreed to meet again next week to continue discussions.

The dispute has dragged on for three years since Orkambi was approved across Europe, and many of the CF patient group activists say hundreds of patients who could have benefitted from the drug in England have since died.

During the health and select committee inquiry held last week, NHS England and NICE and Vertex blamed each 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.

Nevertheless, they also expressed willingness to resume talks in good faith, despite trust having broken down after both sides traded accusations, and NHS England broke protocol by spelling out its pricing offer and urging Vertex to accept it.

David Turner QC, a parent of a child with CF and an active campaigner thanked the health secretary on Twitter yesterday, but also drew attention to three further rare disease drugs currently unavailable to patients in England for similar reasons

“…And please do not forget those who desperately need #Brineura #Kuvan and #Spinraza” he tweeted.

The UK has one of the highest incidences of cystic fibrosis in the world, with around 10,400 people with the condition, representing more than 10% of the global population of CF patients.

The pressure is now particularly on NHS England, NICE and Vertex to agree a deal because Scotland’s NICE equivalent the SMC looks set to reimburse Orkambi after a pricing deal was agreed with the company.

Article by
Andrew McCaonaghie

12th March 2019

From: Healthcare



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