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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 health bosses in the four nations

On 27 August 2019, the Trust sent letters to health bosses in Scotland, Wales, Northern Ireland and England to urge them to finalise talks and reach a deal with Vertex.

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.”

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 September 2019, the Scottish Government reached an agreement with Vertex with support from the UK CF Registry and announced a five-year deal that will see access to Orkambi and Symkevi for everyone with cystic fibrosis in Scotland who stand to benefit from the drugs.

Wales

Last month, Trust Chief Executive David Ramsden, met with the Welsh Government Minister for Health and Social Services, Vaughan Gething, and received this letter following their discussions.

Since then, the Scottish Medicines Consortium was unable to recommend the medicines Orkambi and Symkevi for routine use by NHS Scotland, which prompted Gething to release this statement clarifying Welsh Government position on the continuing issue of access to cystic fibrosis medicines across the UK and update on the situation in Wales.

We are urging Vertex to get a deal done in each of the four nations. Join us on 27 August for a campaign rally for #LifeSavingDrugsNow near Vertex HQ in Paddington.


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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.

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.

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.