Mother fears Hereford toddler could be denied life-changing drug

Bertie is due to receive the cystic fibrosis drug Kaftrio when he is two years old

A Hereford toddler with cystic fibrosis may be denied a life-changing drug because of his age.

Bertie was just three weeks old when he was diagnosed with the condition, and is currently on a number of drugs to control it.

He would normally be entitled to the drug Kaftrio when he is two years old.

But the National Institute for Health and Care Excellence (NICE) has said it is too expensive.

It has issued draft guidance saying it should no longer be offered on the NHS to new patients.

Bertie's mother, Kate, said his condition has had a huge impact on his life and he needs multiple drugs, gets regular coughs and is tired easily.

The family also needs to be careful who he comes in to contact with, in case he picks up infections.

He has been receiving treatment in Hereford and Cardiff.

Better quality of life

More than 10,000 people in the UK have cystic fibrosis, an inherited condition that causes sticky mucus to build up in the lungs and digestive system.

Kaftrio significantly improves lung function, helping people with cystic fibrosis to breathe more easily and enhancing their overall quality of life.

But it costs the NHS around £150,000 a year for each patient.

Earlier this month NICE published a draft evaluation of the medication and two others - Orkambi and Symkevi and a consultation will decide whether it should still be prescribed.

Bertie will be two years old in March and Kate said: "If we can get Bertie on it in March what we are hoping is that if he gets on it they can't withdraw it."

"Then hopefully Bertie will live a long healthy life and a better quality of life as well," she added.

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If they are unsuccessful in getting Kaftrio on the the NHS she said it would be "unrealistic financially" for them to pay for it themselves.

She said she found that upsetting, and pointed to the amount of money the NHS spends on cancer treatments.

"No-one talks about withdrawing that," she said, but added: "If they don't have that medication that would severely impact their quality of life and their life expectancy, the same effects would happen to Bertie if he doesn't have his medication."

The public consultation on the issue is due to finish on Friday, with a decision expected in March.