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NHS England and Vertex Pharmaceuticals to meet

This week Vertex will meet with NHS England on Wednesday 25 April to discuss further negotiations around access to precision medicine Orkambi and similar future cystic fibrosis (CF) treatments. Lynsey Beswick, Public Affairs Manager at the Cystic Fibrosis Trust, explains what’s happened since last month’s debate in Parliament and what the next steps are for the campaign.

Over the weekend a letter was published from Ministers Steve Brine and Lord O’Shaughnessy to Vertex calling on them to negotiate a speedy resolution for Orkambi ahead of a meeting on Wednesday between NHS England and Vertex. A counter offer was made last month, so the meeting is hoped to be one of a series of further meetings to continue talks around Vertex’s latest offer, submitted in February to NHS England.

CF clinicians press for constructive talks

Meanwhile last week, letters from the newly-formed UK CF Medical Consultants Group, comprised of doctors working in CF, asked decision-makers in all four nations to push for a positive outcome in negotiations with Vertex and offered their support. The group also wrote to Vertex to make their view clear that an agreement will require substantial compromise from all parties and that people with CF should not be made to carry the burden of failure.

The letters have been endorsed by specialist nurses, physiotherapists, dietitians and psychosocial professionals working in CF, and show the unity and strength of feeling in the clinical community – fighting for the best interests of people with cystic fibrosis.

Community encourage support from their MPs

Elsewhere, straight off the back of the enormous community effort ahead of the Westminster Hall debate, many of you have been busy throughout April writing to your MPs to ask that they sign a cross-party letter calling for an urgent meeting with the relevant ministers to discuss the issue further.

The Trust has been working hard behind the scenes with Ian Austin MP’s office to collate an incredible 100+ signatories, which are vital to helping demonstrate the level of support from MPs on this issue of precision medicines. A huge thank you for sharing your stories with your MPs and helping us to reach this significant number.

Meanwhile in Scotland

In Scotland we understand that NHS Procurement Scotland have recently responded to the proposal submitted by Vertex and that further meetings to discuss this are imminent.

A cross-party letter will also be sent to Shona Robison, Cabinet Secretary for Health and Sport, outlining the campaign and requesting a meeting. For those of you in Scotland we will be asking you to write to your MSPs to ask them to sign the letter in support of our campaign for access to precision medicines. Further information will be available shortly.

Finally…

In terms of broader activity around the campaign there are also ongoing meetings between the Trust and supportive parliamentarians from all four nations happening over the coming weeks.

Find out what's happening in your area around access to precision medicines here.

We need your help to keep up the fight for access to precision medicines, but if you want to be kept up to date on the latest lobbying actions that need your voice, you’ll need to tell us before 25 May.