David Ramsden – Using our latest data to support our ambition to achieve a life unlimited by CF for everyone with the condition

Recently, I was in Birmingham to attend the UK CF Registry’s Annual Meeting. This is always a very special session as it ties in with the publication of the latest UK CF Registry Annual Data Report.

Dr Jamie Duckers shared his own thoughts and some of the most informative data and statistics in his blog last month. I won’t repeat all of those figures, however, I did want to pick up on some of the messages, and how they are influencing our work at the Trust.

The main headline is that living with CF is changing for many. Using Registry data, we’re able to predict that half of people born today with CF in the UK are expected to live to at least age 64, which has increased considerably from previous years. Among those who died in 2023 the median age at death is now the highest it has ever been.

The impact of the widespread access to modulator drugs is having a profound, rapid, and positive impact on the health of many people. But we can’t forget that these medicines are not a treatment option for everyone with CF. For some, these medicines can’t or don’t work, and for all, there are still the continuing life-long and life-limiting complications of living with a condition without a cure.

This means that as our community continues to grow older, the range and complexity of individual experiences of CF is growing too. The Registry Data Report and other research helps us to continue to learn more about why some people with CF have a more difficult time than others. 

We know that things such as the quality and stability of housing, where you live, the air you breathe and how much money you have, will all play a role. 

We can now see from the Report that ethnicity may also have an important role to play, with a higher percentage of people from an ethnic minority background in the group that can’t benefit from modulators, than in the overall  CF population.

People from a non-white (Asian, Black, Mixed, or Other) ethnic background make up around 5% of the CF community. Of those aged 6 and over, around 97% of people from a White ethnic background are eligible for modulators, but this drops to 67.5% of people from non-white (Asian, Black, Mixed, or Other) ethnic backgrounds. 

It’s vital that everyone gets access to the best treatments - that’s why we’re working to improve access to clinical trials through our Clinical Trials Accelerator Platform (CTAP), and why research into new treatments for those who can’t benefit is our top research priority.

Shanique is mixed race and passionate about raising awareness of CF in Black, Asian and Minority Ethnic backgrounds. She explains: “On the Trust’s website, I had read the stats about CF in ethnic minorities and was so shocked. I think it’s really important that everyone knows CF is not just a Caucasian condition and people from different ethnicities can also get it.”

Understanding the barriers that can impact on the current and future health of people with CF matter , as it helps to inform the steps the Trust needs to take to truly achieve its vision of a life unlimited by their condition for everyone with CF. For many years we have taken actions to make sure we are relevant and representative to everyone with CF, and over recent months we have been working to consolidate that work around three central objectives:

• To improve the health of everyone in our community by supporting advances in treatment and care , in order to achieve equal outcomes for all.

• To recognise, engage with and reflect the full diversity of the CF community and their experiences.

• To ensure we have an inclusive workplace to maximise the impact of the Trust

Guided by these ambitions, we will keep working together for everyone affected by CF. We won’t stop until CF does.