Cystic fibrosis: 'Kaftrio drug changed our lives,' say family

The mother of a five-year-old boy with cystic fibrosis said a "dark cloud" had been lifted from their lives thanks to a so-called "miracle drug".

The government's medicines agency extended the licence for the drugs Kaftrio and Kalydeco in November 2023.

Doctors feared Jesse, from Ingatestone, Essex, would not have lived to his thirties without the medication.

"He's just so much more happy, content. In every way possible he's changed," Jesse's mother, Chloe, said.

It followed a four-year-long fight led by the family to get Jesse access to Kaftrio.

The drug was already authorised for treating children aged six and over with a certain type of cystic fibrosis, but the rules were relaxed last November.

The Medicines and Healthcare Products Regulatory Agency (MHRA) licensed it for children aged two to six last year, but it is still waiting for appraisal from The National Institute for Health and Care Excellence (Nice).

The drug, which comes in the form of a sachet of granules, was administered to Jesse by mixing it with soft food, Chloe said.

She explained: "The new drug isn't a cure but it's the closest thing to a cure.

"It's changed our life, the dark cloud has definitely gone from above. We can just see Jesse blossoming more and more every day.

"He's now living the childhood he should have lived a long time ago... the basics of life."

Chloe said Jesse's coughing had significantly improved and he had gone from taking up to 40 tablets-a-day to none.

But, for now, he was still having to follow a strict medical schedule including the use of antibiotics and Bubble PEP treatment, which helps children who have a build up of phlegm in their lungs to clear it.

"We are still fighting for the main thing which would be a cure, and we will never give up until Jesse gets that cure," she added.

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