Your donation will make a difference:
Cystic Fibrosis Trust
Forum

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

Will your MP ask the Prime Minister for life-saving drugs now?

Please write to your MP asking them to sign a letter to the prime Minister to commit to access to life-saving drugs for those with cystic fibrosis and to attend a debate in June on the issue.

The declaration will be handed into 10 Downing street on 16 May along with 65 yellow roses, and will mark one year since Theresa May called for a speedy resolution and over 1,000 handwritten letters from our community were handed into Downing street.

A community petition urging the NHS to supply lifesaving drugs to people with cystic fibrosis in the UK has now reached over 100,000 signatures, triggering a Parliamentary debate that will take place on 10 June at 4.30pm to discuss this issue.

Members of Parliament are keen to hear from their own constituents, so write to your MP to share your own personal story and explain why it is important to you that they attend on your behalf. Download a template letter with further information to include.

Download the template

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 the session and view the submissions.

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

Find your AMs

Write to the Health Minister

Matt Hancock, Secretary of State for Health and Social Care, met with Vertex, NHS England and NICE on Monday 9 March. We need to send a powerful message to Matt Hancock’s Welsh counterpart, Minister for Health and Social Services, Vaughan Gething AM to urge him to engage personally and ensure access to life-saving drugs now in Wales.

Therefore, we are asking you to send a letter to the Minister.

Working alongside parent, Kim Roberts, we’d like you to explain in a letter:

  • How cystic fibrosis affects you and your family,
  • what this agonising wait has meant for your health and,
  • what why you need access to life-saving drugs now

Send your letters to the Trust for the attention of C/O G Paget, Cystic Fibrosis Trust, One Aldgate, London EC3N 1RE and we’ll hand them in on your behalf.

We will treat any letters received in full confidence, and protect any information within in line with our privacy policy.


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.

Discover more

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.

Read on

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.

Get in touch