Patients and campaigners took to the streets in London yesterday demanding NHS access to Vertex’ cystic fibrosis drugs, following a public hearing on the situation ordered by MPs.

The Health and Select Committee is undertaking an inquiry into the lengthy negotiations between Vertex and NHS England on funding for the firm’s cystic fibrosis (CF) treatments, including Orkambi (lumacaftor/ivacaftor), as well as NICE’s assessment of their cost-effectiveness.

The parties have been in talks over provision of Vertex’ CF medicines since NICE first rejected Orkambi back in 2016, deeming it too expensive.

NHS England’s latest offer would see NHS England pay Vertex around £500 million over the next five years and over £1 billion over the next 10 years for its existing and future CF therapies, equating to around £10,000 per patient per year.

According to Vertex, this offer does not reflect the true value of its medicines, and it previously noted that it represents a near 90 percent discount on what Germany reimburses for Orkambi alone.

However, addressing the Committee, NICE chief executive Sir Andrew Dillon argued that Vertex has not re-engaged with the NICE appraisal process, and said the firm should accept the NHS’ offer on the table and then subsequently work with NICE to ensure fair prices are secured for its therapies.

“In order to unlock the potential of both their existing and future medicines, for patients with cystic fibrosis in England, it is absolutely essential that the company works with us,” Dillon told the hearing. “If they do, they will find there are flexibilities within our processes which will help us all understand the additional value of their treatments and reach a fair price for the use of their products in England.”

Vertex has reportedly reached an agreement with the Scottish Medicines Consortium that will allow patients in Scotland NHS access to Orkambi, though the details remain firmly under wraps, again highlighting the postcode lottery of access to innovative treatments across in the UK.

Vertex chief executive Jeffrey Leiden told MPs that he is to meet with health secretary Matt Hancock on Monday to explore further options for a potential resolution, raising hopes that there may be away forward to an agreement that would give patients in England equitable NHS access to the firm’s CF treatments.

Labour Member of Parliament for Dulwich & West Norwood called on Hancock and Vertex to work together to resolve the issue, taking to Twitter to say: “People in the UK are dying while the UK government argues with a pharmaceutical company over the price of a drug that is proven to work”.