Heidi Allen, MP, Ian Austin, MP and 62 other MPs support next phase of Orkambi negotations

Heidi Allen, Ian Austin and 62 other MPs today supported Vertex and NHS England’s return to the negotiating table to continue discussions about the new cystic fibrosis drug Orkambi. 

Heidi, Ian and 62 other MPs have twice written to Vertex encouraging them to further their dialogue with NHS England in pursuit of a deal that would see access to Orkambi unlocked for thousands of cystic fibrosis sufferers.  After negotiations stalled in July, Vertex had requested high level intervention from NHS England and asked for the MPs’ help in securing this.

Heidi took up the challenge on behalf of the cross party MPs by appealing to the Department of Health for some movement on this issue and was delighted to be told earlier this week that a meeting had been offered to Vertex by Sir Andrew Dillon, CEO of NICE, and Professor Stephen Powis, Medical Director of NHS England.  Vertex’s acceptance to meet was a welcome development after a frustrating summer with stalled progress.   A copy of these statements can be found below.

On behalf of the Department of Health, Lord O'Shaughnessy and Steve Brine wrote to Heidi to thank her and the other MPs for being so vocal in the campaign to make Orkambi available on the NHS.  The letter said 'I know how passionate you are about this topic; the support you deliver on behalf of your constituents is to be admired, together with the huge support from the Cystic Fibrosis Trust on behalf of the cystic fibrosis community.'

Heidi Allen said ‘I’ve been clear throughout this process that the ultimate aim for me and my colleagues is to get this life-changing drug to the people who need it.  Negotiations can sometimes get snagged on process issues and I’m delighted that sense and urgency have prevailed resulting in NHS England and Vertex coming back to the table.  I hope that these two institutions will now work to thrash out a deal that unlocks access to Orkambi and the next generation of CF drugs for sufferers.’

Ian Austin said ‘I’ve previously met with Vertex to reinforce the need to continue negotiations with NHS England.  I was delighted to work with Heidi and cross-party colleagues in writing to Simon Stevens, CEO of NHS England urging him to foster further dialogue.  Heidi and I share a passion to make this drug available to those who need it.’ 

Heidi, Ian and colleagues hope that this next phase of negotiations brings a positive outcome.


Attachment Size
Vertex response 123.78 KB
NICE letter 225.25 KB
NHS letter to Heidi 71.87 KB