Dr Keith Brownlee: “We won’t stop until everyone can access life-saving drugs”

It’s been wonderful to hear about the improvements many people have experienced since taking Kaftrio and other modulator treatments. I’m really proud to work for an organisation which, alongside campaigners in the CF community, worked tirelessly to get access to the drug for people with cystic fibrosis across the UK.

Sadly, however, not everyone can benefit from Kaftrio or other modulator drugs and we know people will continue to have a variety of other health needs. At Cystic Fibrosis Trust we’re totally committed to improving the lives of everyone with CF – and that’s why we won’t stop researching new treatments that will be beneficial to everyone.

Kaftrio: a life-changer for many people…

Clinical studies suggested most people would have an improvement in lung function, a reduction in exacerbations and an improvement in their overall quality of life. One year after the rapid rollout of Kaftrio in the UK, we continue to hear stories from people with CF, their families and clinical teams about the remarkable impact these drugs are having.

There’s still lots of research being carried out which will give us more information about the impact of Kaftrio.

…but not currently for everyone

There have been amazing stories of health improvements, but we also know that some people have had mixed experiences too.

With all the excitement about modulator therapies, if you’ve experienced challenges this might bring up some complex emotions. We’ve put together a factsheet to help you, and we’re here to help in any way you need through our Helpline.

Help for all

Hearing stories of health improvements can also be difficult for those who can’t take modulators, such as people with ineligible CFTR mutations, people who take medicines that interact with modulators, or those who have had transplants.

Whatever emotions you find yourself experiencing, you might find it useful to share these feelings if you think it will help. You could speak to someone you’re close to, or your CF team, and our Helpline team are available if you need a listening ear. 

We’re continuing to fund research into new strategies and treatments that will help those who can’t benefit from the currently available modulators and address everyone’s wider health needs. The Trust’s clinical trials accelerator platform supports early-phase studies and helps new medicines become available more quickly.

The remarkable thing about Kaftrio is that it has shown the kind of improvements in wellbeing and lung function, and the reduction in exacerbations, that can be achieved when CFTR function is restored towards normal even in people with significantly damaged lungs. Through investments in research, we are determined that everyone will benefit from this potential.

Dr Keith Brownlee is Director of Medical Affairs at Cystic Fibrosis Trust. Dr Brownlee has over 30 years’ experience caring for children and families with CF. He also has a special research interest in respiratory infections and management of airway clearance in people with CF.

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