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Orkambi: one foot in the door

Government opens door for negotiations on Orkambi at meeting with the Cystic Fibrosis Trust.

With Orkambi rejected by NICE and negotiations deadlocked, community pressure saw December’s parliamentary debate persuade the Government to meet the Trust for vital discussions on a way forward.

After a number of delays, including changes in Government roles, on Tuesday 7 March the Trust finally met with the new Health Minister, Lord O’Shaughnessy, who paid tribute to the community's incredible campaigning and the work the Trust has put in behind the scenes in talks with all sides.

With the well-publicised financial pressures on the NHS, negotiations will be tough and are likely to take time, but the Trust was reassured that the Government is still open to making a deal happen and is looking forward to hearing new proposals from Vertex.

The Trust was also pleased to hear that the Government is considering how the Trust's solution, which would allow access to Orkambi while the UK Cystic Fibrosis (CF) Registry gathers crucial long-term data, could break the deadlock and provide a fair and sustainable model for future CF treatments.

David Ramsden, Chief Executive at the Trust said: “We know it is vital and urgent that there is a solution, not only to create access to Orkambi, but to ensure that future treatments can be fairly assessed and made available sooner.

“Everyone involved in the campaign should be incredibly proud that the door has been opened to meaningful negotiations. A lot has been achieved, but we know there is a lot more to do.

“The Trust is committed to ensuring that the Government is good to its word, and we now urgently call on Vertex to seize this opportunity and present a bold offer that will work for the NHS.”

What about the rest of the United Kingdom?

With the Welsh and Northern Irish governments heavily influenced by the decisions made in England, these negotiations are encouraging for people with CF in both countries.

Scotland has a separate system entirely independent from England. The Trust is working hard to open the door for negotiations there, with plans for a campaign specific to Scotland.

What’s next?

While the Trust understands these negotiations need time to progress, we will not allow for either side to let this opportunity slip. With access to Orkambi in Ireland looking increasingly likely, the Trust will be monitoring negotiations closely and calling on the community to work with us to help put pressure on Vertex and governments across the UK when the time is right to maximize our collective impact.

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