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Cystic Fibrosis Trust

Latest news

Take a look at the latest news in our fight for access to life-saving drugs.

Access to Orkambi and Symkevi across the UK 

After a tireless campaign by the Cystic Fibrosis Trust and the CF community, England, Wales, Scotland and Northern Ireland now have access to all currently-licensed CF precision medicines: KalydecoOrkambi and Symkevi.

We are now focussing our efforts on the latest Vertex precision medicine, the triple combination therapy (known as Trikafta in the United States). Find out where the drug is at in the licensing process, who it could stand to benefit and what we are doing to support the process.

Timeline for the triple combination therapy

On 6 February 2020, CF Europe, a federation of cystic fibrosis patient associations across 39 European countries, contacted the European Medicines Agency regarding their assessment of the triple combination therapy. The letter set out that, for many people with CF in Europe, being on the precipice of having access to this therapy represents a major milestone in the broader mission to beat cystic fibrosis.

The letter emphasises that the results of the two major clinical trials for the triple combination therapy show improvement of an unprecedented magnitude that could benefit the majority of people with CF in Europe.

The letter implores the EMA to take a pragmatic approach to awarding a broad licence to the triple combination therapy, while maintaining a sense of urgency in their assessment that reflects the heightened anticipation many feel about this life-saving drug.

CF Europe offered to support the EMA in this process by offering the expertise of the CF community, from patients and families, to clinicians and researchers across Europe, whose insight will be valuable as the EMA make their assessment.

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 fund

We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.

What is CF?

Cystic fibrosis, or CF, affects the lungs, digestive system and other organs, and there are around 10,500 people living with it in the UK.

Contact us

Get in touch with us to speak to someone on our Helpline, found out about an event or speak to our Press Team.