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Patients thriving on new cystic fibrosis 'miracle' drug

A new drug described by many as a “miracle” is transforming the lives of cystic fibrosis patients in Wolverhampton.

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Sophie Tristram started on Kaftrio in October 2020

Cystic fibrosis (CF) is an inherited condition that causes sticky mucus to build up in the lungs and digestive system.

This causes lung infections and problems with digesting food.

But the drug Kaftrio – which was introduced to the first Wolverhampton patients in October 2020 – works by correcting the problem which causes the sticky mucus to build up.

Fifty-four people being treated for the condition at New Cross Hospital are now being given Kaftrio.

This is a new precision medication that works for patients who have a genetic mutation called delF508.

For patients without this mutation, this drug will not work for them, but researchers and the CF community are working hard to ensure all people affected by this condition will one day have access to precision medicines like Kaftrio.

Because of the multitude of conditions CF affects, there are many healthcare professionals involved in patients’ care, including doctors, dietitians, psychologists, physios, nurses and social workers, although much of the care is nurse-led.

This is a high-cost medication but funding has been ring-fenced by the NHS thanks to trials that showed a significant impact on overall health and quality of life.

Dr Nicky MacDuff, advanced nurse practitioner at the trust, said: “The way we care for patients with CF is changing. Since starting on Kaftrio our patients are having fewer infections and are needing to be admitted to hospital far less.

“This is an exciting time for them as they now have the opportunity to have a life less interrupted by their cystic fibrosis.

“Kaftrio is still a relatively new medication, but we are hopeful that the positive results we are seeing will lead to longer, healthier lives for people with cystic fibrosis.”

For patient Sophie Tristram – who started on Kaftrio in October 2020 – the results have been overwhelmingly positive. Since taking Kaftrio, her lung function has risen from 68 per cent to 93 per cent.

Sophie, 30, from Bradmore, said: “Life before Kaftrio was tough – I’d wake up coughing and sometimes I would cough so hard I was sick.

“I’d have problems with my stomach and sinuses and have reoccurring chest infections. Since starting Kaftrio I’ve had some side effects but life has changed dramatically.

“I very rarely cough, I’m even more active than before starting Kaftrio, I can do a lot more in the gym and it doesn’t seem as if I’ve got CF anymore.

“It’s completely changed my life. I had a little boy in November 2020 and I think motherhood would have been a lot different if I hadn’t been on this. Hopefully, I can enjoy life going forward on this miracle drug.”