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Access to medicines talks across the UK

Yesterday, Trust representatives met with the Pharmacy and Medicines Division of Scottish Government in Edinburgh to discuss Orkambi and new medicines. Meanwhile in Westminster, the Trust met with Matt Hancock MP, Secretary of State for Health and Social Care, to talk about the Government’s position in future negotiations for Orkambi and other treatments. Hear what our team learned from their meetings.

Meeting the Secretary of State in Westminster - Nick Medhurst, Head of Policy & Public Affairs

Our meeting was made possible by Dr Sarah Wollaston MP, who used the opportunity to highlight her constituents’ fears and frustrations with the ongoing situation and also explore the issue in the context of her role as the chair of the Health and Social Care Committee.

It’s difficult to talk about steps forward in our campaign to get access to the most advanced CF therapies when the only victory that counts is people with CF in the UK getting their hands on these drugs through the NHS.

However – after a summer of silence from the Government in Westminster – the opportunity to talk to the Secretary of State for Health and Social Care, Matt Hancock MP, is an important moment.

The crux of our discussion was to establish the Government’s position on future negotiations with Vertex about access to Orkambi and future treatments.

Much of what the Minister said will be very (and perhaps disappointingly) familiar to our community. He said that he is committed to supporting NICE’s role in recommending what is a cost-effective use of NHS money. He stated that he is not willing to set a precedent that will expose the NHS to accepting the price of new medicines set by pharmaceutical companies at face value. He made it clear that he does not believe it is his or any one politician’s role to make deals and agreements outside of a recognised process. He explained that, in his view, the offer NHS England made public this summer is ‘generous’ and that he supports it.

However, he also recognised that what has been described as an impasse in negotiations is unacceptable and that – as this impasse drifts into what can only be described as an out-and-out breakdown – it is time for him to act publicly to bring the key parties, NICE, NHS England and Vertex, back to the table to find the right way forward.

Reflecting on the UK falling behind other countries in making Orkambi available, the Minister said that he is aware that Australia is the latest country to secure a deal. However, he stated that Vertex should consider the size of the UK population when considering their projected profit margin. As the country with the second highest CF population in the world, the Minister suggested that healthy profit is available to Vertex.

Something that was very clear from the outset of the meeting is that the Minister is listening and paying close attention to the issue. The work of the whole CF community has put this issue very firmly on his radar. He expressed strong empathy with the situation that thousands of families are in across the country and his goal is to make new CF drugs available as soon as possible.

Empathy may feel hollow at this point, but we can only move forward, and I felt encouraged that the Minister is very straightforward about wanting to find a positive outcome for people with CF and their families.

He closed the meeting by requesting that he, his team and the Trust meet again to further explore practical steps forward.

Dr Sarah Wollaston made clear her desire to do what she can to bring negotiating teams back to the table and work with the Trust to explore ways to make this happen at the earliest opportunity.

Discussions with the Pharmacy and Medicines Division of the Scottish Government - Lynsey Beswick, Public Affairs & Advocacy Manager

Our Chief Executive, David Ramsden, Rebecca Cosgriff, Director of Data & Quality Improvement and I met with key members of the Pharmacy and Medicines Division for the Scottish Government. The meeting was facilitated by the office of Jeane Freeman MSP, the new Cabinet Secretary for Health and Sport in Scotland, in response to correspondence in June.

The discussions centred on Orkambi, the drugs appraisal process in Scotland and the whether there is any possibility of interim access while a deal is being agreed.

The Division representatives made clear their view is that established processes must be adhered to and that the Scottish Medicines Consortium (SMC) is the appropriate body to consider any new drug for use on the NHS in Scotland. They said that the proposal put forward by Vertex in March this year did not meet this requirement.

Division representatives at the meeting stated that they have written to Vertex in early July to request meeting to discuss a fresh submission, new supporting evidence and data but that they are still awaiting a response to this request.  

Rebecca Cosgriff also spoke about the UK CF Registry and access to Orkambi for eligible people with CF in the interim, including how such an approach could be facilitated within existing processes.

We explored two particular processes that have been referred to in recent public communications from the Scottish government, including the Peer Approved Clinical System (PACS) Tier Two system, and efforts to explore whether Orkambi could be considered by the SMC as an ultra-orphan condition – which is a term for extremely rare diseases – as this may allow for Orkambi to be provisionally made available in Scotland, as more data is collected on its real-world effectiveness.

The Trust have committed to facilitating discussions by providing further data from the Registry. Our aim must now be to bring Vertex to the table with the Pharmacy and Medicines Division as soon as possible because no tangible progress will be made unless key decision-makers from both parties are engaged in serious discussion.

Meanwhile in Wales and Northern Ireland

October will be a busy month in Wales, as we expect responses from the Minister and Vertex Pharmaceuticals to questions raised by the Welsh Assembly’s Petitions Committee. We continue to engage with both parties to push for the earliest possible resolution.

With the Northern Ireland Executive in Stormont still not active, our focus is to lobby the Westminster Government to secure access that covers both Northern Irish and English families with CF.

Find out more about our campaign for access to precision medicines and the latest updates in your region on our website. Or for the latest news sign up to our campaigning newsletter.

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