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“We’ve built real momentum, and this is the moment to put our foot down and accelerate”
The briefing aimed to give journalists a background on CF, particularly after last year’s announcement of permanent access to life changing drugs. We heard from our Chief Executive, David Ramsden, our Director of Research and Healthcare Data, Dr Lucy Allen, and two of our researchers, Professor Jane Davies and Dr Freddy Frost.
New research goals
Dr Lucy Allen said: “Though many people with CF are now benefitting from modulator therapies and stable health, there is still a lot about CF we don’t know. We used the priorities of the CF community to shape our new research goals to work towards a future where everyone can benefit from a life unlimited by CF.”
Our new research goals, informed by the priorities of the CF community, are designed to match the needs of a changing CF population.
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To develop effective treatments for all
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To treat all the symptoms of CF throughout the body
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To improve the diagnosis and treatment of CF infections and maintain lung health
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To enable people with CF to live longer, healthier lives
You can read more about our research goals here
Lung infections, why haven’t we solved it?
Professor Jane Davies said: “As the CF population evolves, the way we detect and treat lung infections needs to evolve too. We can’t rely on what we knew before, and we must adapt to meet the needs of people with CF.”
We know that finding better treatments for lung infections is a major priority for people with CF, and over the years there have been thousands of studies, but those with CF continue to face multiple challenges in diagnosing and treating them. One issue is that sputum samples are generally used to detect infections, but many people taking modulators are now unable to produce the sputum for a sample.
Despite this, people benefitting from modulator therapies still have infections in the lungs. These not only reduce lung function, but can become chronic, meaning they can never be cleared. Another issue is that people with CF often can have multiple different bugs in their lungs at any given time, and we don’t know how those bugs interact with one another. It could be that certain bugs protect you from other bugs, or they might build up antimicrobial resistance, making them harder to treat.
Professor Jane Davies is a member of the CF AMR Syndicate steering committee – find out more about the CF AMR Syndicate here.
Rewriting the textbook – living longer with CF
Dr Freddy Frost said: “Over the last ten years, the number of people in the older CF population has doubled. It’s great news that people with CF are living longer, but ageing is now a top priority and a previously unexplored area of CF research.”
We know from the latest Registry report that nearly two thirds of the UK CF population are over 16 years old and of these, and one in six people with CF in the UK are over 40 years old. Dr Frost shared anecdotes from a CF Trust Engagement session where adults with CF described how they are now looking at their medical family history to see what might impact them in the future. Another example of the changing perspectives of people with CF was shared at the Trust’s growing older with CF workshop: “Is feeling hot in the night due to the start of a CF lung infection, a CF diabetes hypo, or is it a hot flush due to the menopause?”
People with CF may be at increased risk of age-related conditions as they live longer lives, but there is still much for research needed to be able to understand why this is, and how it can be prevented. Last year, Dr Frost was awarded a Development Award to lead ‘Investigating the Cardiovascular Health of people living with Cystic Fibrosis (ITCH-CF)’ to focus on unanswered questions about growing older with CF, specifically around heart disease and associated risks for people with CF.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.
But we need your help to make sure everyone with CF can live a life unlimited.