Looking ahead to 2024: David’s blog

2023 was another year of challenge and change for people with cystic fibrosis (CF). Thanks to the dedication and support of the CF community, together we’ve made some incredible progress - providing essential support and information, funding more life-changing research and ensuring that the voice of the CF community is truly heard.

Our latest Registry report for 2022 shows some incredible gains for the CF community. Lung function is now on average 73.4% for adults and 94.6% for children over the age of six. This is a huge improvement on the figures from 10 years ago, which were 61.7% and 79.8% respectively. And my favourite statistic is that 140 women with CF had a baby in 2022, compared with 58 in 2019.

Whether you took part in a challenge, organised a fundraiser, participated in a campaign or supported us in another way – thank you. Without your support, we wouldn’t be able to do the work we do.

We won’t stop

Despite this progress, CF remains an awful condition that shortens far too many lives and there is so much important work still to be done.

New treatments are making a real difference, but they don’t work for everyone and are not a cure.

We’re committed to funding groundbreaking research into innovative new medicines for all people with CF to support them as their needs change in the years ahead. We won’t stop until everyone can live a long and full life – a life where they are physically well, mentally well and fulfilled.

NICE modulator appraisal

As I write this, NICE have released an update following their committee meeting on 14 December.

They’ve confirmed that no one will lose their current access to the modulator treatments and indicated  that commercial negotiations between NHS England and Vertex are the likely next step.  We’re expecting another update at the end of January and are hopeful that all parties will now work swiftly to end the uncertainty for all of those who could benefit from these medicines in the future.

This could still take some time and we remain committed to ensure the best treatment are available to all that could benefit from them. We’ll be there to provide support and advocate for the community at every step.

60 years of Cystic Fibrosis Trust

As we approach our 60th anniversary in 2024, we’re excited to mark the occasion and reflect on the advances that have been made in CF care and treatment – with your support – over the last six decades, from newborn screening to research leading to advances in treatments and longer life expectancy. We’re refusing to accept setbacks because we’ll never stop until CF does.

UK CF Conference

To close, I would like to reflect on my personal highlight of the year attending our annual UK CF Conference (UKCFC) which brought together researchers and clinicians across the UK to discuss the latest research and developments they are working on. It was inspiring to see the passion in the room, and the depth and breadth of ongoing research which will help improve the lives of people with CF.

Our opening hours during the festive period

Our Helpline will be closed from 12pm on 22 December, and reopens at 10am on 2 January 2024. You can find lots of information and support on all aspects of life with CF here on our website, and you can visit our online community to talk with others in the CF community.



If you need urgent support, please contact your CF team, or if you need a listening ear the Samaritans are available 24/7 every day of the year on 116 123.