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Campaigning in your region

Take a look at how we're campaigning for access to precision medicines in England, Northern Ireland, Scotland and Wales, and find out how you can share your voice.

England
Northern Ireland
Scotland
Wales

Latest updates

Letters to Dr Jeffrey Leiden and Matt Hancock MP

Almost 120 MPs signed Ian Austin MP’s cross party letters to Jeffrey Leiden, CEO of Vertex Pharmaceuticals, and Matt Hancock MP, Secretary of State for Health and Social Care, asking them to end the crisis of access to life-saving drugs. The letters were action following the Trusts meeting with a cross party group of MPs. Take a look at the letters to see if your MP signed them.

England

Health and Social Care Committee 

On Tuesday 9 July David Ramsden, Chief Executive at the Trust, met with key supportive MPs at a roundtable event in Westminster, hosted by Ian Austin MP. All present committed to increasing the pressure on Vertex and the Government to urgently find a positive solution. Dr Sarah Wollaston, Chair of the Health and Social Care Committee, also quizzed Matt Hancock in an evidence session that afternoon.

The Cystic Fibrosis Trust understands that NHS England and the company, Vertex Pharmaceuticals, continue to meet to discuss access to the drugs. However, no timetable has been set for an outcome.

Matt Hancock

In early July, Matt Hancock MP, Secretary of State for Health and Social Care, met with Carlie Pleasant as she attended King’s College Hospital for her CF care. They discussed the campaign for access to life-saving drugs and Mr Hancock told Carlie, “be assured, we’re on this and are committed to achieving a resolution for all those battling CF across the UK.” Carlie told followers on social media, “I genuinely feel our Health Minister has our best interests at heart.”

Letters to the future Prime Minister

With a new Conservative Party leader and UK Prime Minister due to be chosen imminently, David Ramsden wrote to both Jeremy Hunt and Boris Johnson to prioritise getting a deal done for CF drugs. We received this response from Jeremy Hunt and await a response from Boris Johnson.

Northern Ireland

Last month, Valerie Watts, Chief Executive of Northern Ireland’s Health and Social Care Board, in correspondence with David Ramsden, has outlined that the Board could follow guidance from the SMC, in the absence of guidance from NICE, making the outcome of the meeting of the SMC last week an important milestone for people with CF in both Scotland and Northern Ireland.

Scotland

On 12 August the Scottish Medicine Consortium (SMC) announced it was not able to recommend Symkevi and Orkambi for routine use by NHS Scotland, adding that the company had failed to justify the price they were offering. Discussions continue between the Scottish Government and the manufacturer, Vertex Pharmaceuticals, on securing the widest possible access to the medicines.

Wales

On 17 July David Ramsden, Chief Executive at the Trust, met with Vaughan Gething, Cabinet Secretary for Health and Social Services in Wales, Andrew Evans, Chief Pharmaceutical Officer,and Miranda Morton, Senior Policy Manager Pharmacy and Prescribing Branch Welsh Government, to urge the Minister to take an active role in delivering access as soon as possible, including exploring interim access. In evidence received by the National Assembly for Wales’ Petitions Committee on 9 July, Vertex Pharmaceuticals have agreed to submit Orkambi and Symkevi for independent review with the All Wales Medicines Strategy Group.


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Research we're funding

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

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What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

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