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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

Health and Social Care Committee Inquiry

The Health and Social Care Select Committee at Westminster will hold an evidence hearing on 7 March as part of an inquiry into the availability of the medicine, Orkambi. Ensure your voice is heard by sending in your submission, however long or short, to the committee by 25 February. Find out how you can get involved here.

England

Access to Orkambi was once again the subject of debate in the House of Commons chamber on Monday 4 February. Bill Wiggin MP tabled the adjournment debate ‘Crown Use License for Orkambi’. Watch the afternoon session in the Commons via Parliament TV.

On Monday 19 November 2018, which marked three years since the drug Orkambi was licensed for use in the UK by the European Medicines Agency (EMA), the Trust held a Parliamentary event in the Houses of Parliament to discuss access to medicines for people with cystic fibrosis, sponsored by Ian Austin MP.

Find out whether your MP attended here

Northern Ireland

We have sent a cross-party letter to Jeremy Hunt, Secretary of State for Health and Department of Health Permanent Secretary, Richard Pengelly, calling for a timely resolution to the ongoing negotiations between Vertex and Health and Social Care Northern Ireland. These letters have been signed by 66 MLAs from a number of different parties.

Read the letters:

We have received a response to our letters from Richard Pengelly, which you can read here:

Scotland

Vertex Pharmaceuticals has agreed to make submissions for its cystic fibrosis medicines, Orkambi and Symkevi, to the Scottish Medicines Consortium (SMC). The First Minister, Nicola Sturgeon, has responded to an oral question from Jackie Baillie MSP on 20 December confirming that a price agreement has been reached and agreed between Vertex and the Scottish Government pending a submission of both medicines. In the meantime, patients in Scotland can access the treatments in the interim via PACs Tier 2 patient access scheme. For further information on this scheme please speak with your CF team.

A cross-party meeting was held at the Scottish Parliament a on Wednesday 21 November to discuss access to medicines for cystic fibrosis in Scotland. The meeting was organised and chaired by Jackie Baillie MSP.

For more information about the meeting, have a look at the blog by Nick Medhurst, Head of Policy and Public Affairs at the Trust.

Wales

On 29 January 2019, the Welsh Assembly petitions committee discussed the petition to ‘Ensure access to the cystic fibrosis medicine Orkambi as a matter of urgency’ and the committee agreed to write again to the Minister for Health and Social Services, Vaughan Gething, regarding a means of interim access for the drug in Wales. You can watch a recording of session and view the submissions.

Find out if your Assembly Member has recently tabled a written question on this matter here.

Find your AMs

The Health and Social Care Committee inquiry (see latest updates above) will review the role of NICE and decisions NICE takes are normally followed by NHS Wales so it is critical you make your voice heard by submitting evidence here by 25 February.

I’ve submitted evidence and want to do more

Once you have submitted evidence to the inquiry, let Vaughan Gething, Minister for Health and Social Services, know by writing him a letter explaining why the inquiry is so vital. You could even include your submission in your letter.

 The Trust, alongside the Welsh CF community, led by parent Kim Roberts, will collect your letters and send them to Vaughan Gething.

 

Your letter must arrive in the post by no later than 15 February 2019. We will treat any letters received in full confidence, and protect any information within in line with our privacy policy.

Send your letters to:

C/O G Paget,

Cystic Fibrosis Trust,

One Aldgate,

London,

EC3N 1RE

 

For the latest news on our Stopping the Clock campaign and other updates in the CF community, sign up to receive our e-newsletter.








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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