Stopping the Clock - You Voice Matters

With the ongoing success of our Stopping the Clock petition on availability of precision medicines for cystic fibrosis, our Chief Executive Ed Owen gives more insight into why this is such an important issue for the CF community.

When 10,500 people sign up to our petition demanding access to new precisiontherapies like Orkambi and Kalydeco just 48 hours after we announced it, you know that this is an issue which touches people like no other.

Things have come a long way since the 1960s when most children born with cystic fibrosis failed to reach their fifth birthday – and there are now more adults with cystic fibrosis in the UK than kids.

But too many young people are dying early, too many families live with the grief and the fear that cystic fibrosis brings, for us to let up until we have beaten this cruel condition for good.

And this goal is now more than a distant hope. It is one that we now genuinely believe is within our grasp.

Yet the nearer this comes, so it is more important than ever that we increase our efforts to shorten the time it takes to get there, because every day, every week, every year we spend means more lives lost and more suffering families.

The development of a pipeline of new precision therapies that can extend life and reduce the heavy treatment burden of cystic fibrosis is a major step forward, and one that we want to see everyone benefit from as soon as possible.

But it will not happen unless we make it so, and that’s the purpose of our ‘Stoppingthe Clock’ campaign. It will ensure the collective voice of the cystic fibrosis community here in the UK is heard loud and clear by Vertex, the NHS, politicians and others.

Access to therapies that can make a difference to the lives of people with cystic fibrosis is an essential part of our wider Fight for a Life Unlimited.

This fight means we are investing where it matters to generate the best scientific and clinical ideas and to accelerate the process to ensure these benefit people with cystic fibrosis directly.

So, as well as campaigning for vital therapies for today, we are investing in world-class research centres tackling key issues like pseudomonas and NTM infection to help generate the drugs of the future too.

And we are developing plans to provide more capacity for vital clinical trials to take place in the UK and helping to shape ideas to develop SmartCareCF to use new technologies and data to empower people with cystic fibrosis and, where possible, keep them out of hospital.

We are developing new forms of information and support for people with cystic fibrosis and their families – and shaping new programmes to promote activity and empower and create new opportunities for young people living with the condition.

There’s so much we are doing. But we cannot do it alone. We need the funds to support this vital work.

And we need the united voice of all those affected by cystic fibrosis, their families, friends, clinical teams and others to help spread the word, amplify our community’s voice and reach out to new supporters.

Together, we can and will transform the lives of people with cystic fibrosis and achieve our goal of a Life Unlimited. Please get on board and let’s make it happen!

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