Fighting for life-saving drugs
For over a decade, we’ve been working alongside the CF community to make CFTR modulator drugs available to everyone who can benefit from them. Despite clear evidence of their effectiveness, the campaign faced major challenges – but after a sustained fight, five modulator treatments are now available on the NHS.
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What’s happened so far in the fight for life-saving drugs?
The NHS began granting access to the first modulator, Kalydeco, in 2012. Orkambi followed with European Medicines Agency licensing in 2015, and Symkevi in 2018 – but both were initially rejected by the National Institute for Clinical Excellence (NICE) due to cost. This sparked years of dedicated campaigning by the CF community and the Trust, and in 2019 a temporary NHS deal was struck. In 2020, Kaftrio was fast-tracked for approval and temporary access.
In 2024, after over a decade of campaigning, all four modulators were permanently approved for use on the NHS across the UK.
In 2025, a fifth modulator, Alyftrek, was also granted permanent approval by NICE.
Take a look at our campaign timeline for more details about what’s happened so far in the fight for access to life-saving drugs.
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What do these drugs do?
CFTR modulators work to tackle the underlying cause of cystic fibrosis by helping to make the CFTR protein work effectively.
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What if I can’t benefit from modulators?
Modulator drugs don’t work for everyone, so we won’t stop until everyone with cystic fibrosis has access to the most effective medicines. This is why we’re investing in a variety of research projects into alternative treatments, including genetic therapies.
Campaign timeline
Find out what's been happening in our campaign for life-saving drugs since it began in 2015.
In the news
Check out the latest news about cystic fibrosis, from new developments in research to nationwide campaigns, including local, national and international stories.