Leeds parents fear cystic fibrosis drug loss a 'death sentence'

Rula Samara-Sellers and husband Connor said denying their daughter the drug would be unethical

The parents of a baby girl with cystic fibrosis have said the fear they could lose access to a life-changing drug was like living with a "death sentence".

Five-month-old Layla has been in and out of hospital since being diagnosed not long after she was born.

Her parents, from Leeds, hoped she would be given access to Kaftrio, which would help her live a more normal life.

But a consultation has been held which could see NHS funding for the drug withdrawn because it costs too much.

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 patients breathe more easily and enhancing their overall quality of life.

When Layla was diagnosed with cystic fibrosis her parents were reassured about the benefits of Kaftrio

Layla has to take a daily concoction of medication

In November, the National Institute for Health and Care Excellence (NICE) published draft guidance which deemed the drug, which costs up to £200,000 per year for each patient, too expensive to be offered on the NHS.

An update is expected later this month on whether the drug would remain available to new patients.

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Those already taking the drug will be able to continue regardless of the outcome.

Mum Rula Samara-Sellers said she and husband Connor had not been able to sleep properly because of fears Layla would not be able to access the drug when she turned two.

"I appreciate it's draft guidance but to put a value on a child's life is unethical and inhumane," she said.

"From day one we were told that there is a medicine out there which will hopefully make life better when she's two and that's what we've been living for.

"But now to say sorry, she may not be able to have it is absolutely horrific. It's like being handed a death sentence."

Elliette has been able to live a normal life since taking the drug

Jemma Davidson, whose daughter Elliette, 12, also has cystic fibrosis, has backed calls for the drug to continue to be prescribed.

She said her daughter's life had "completely changed" since taking Kaftrio and the thought of other patients not being able to access it was "cruel".

Mrs Davidson, also from Leeds, said Elliette had gone from taking many tablets a day and using a nebuliser to just taking the one drug, Kaftrio.

"It's given her her life. She's gone from having a life expectancy of 32 to now having a normal one. It's fixed all the scarring on her lungs - her last CT scan was clear.

"I cannot imagine now not having this drug. Potentially taking it away from others is putting a price on a child's life."

NICE said it was "liaising with key stakeholders to determine the most appropriate next steps and will provide an update later this month".

It said: "In the meantime, access to treatments will continue while the appraisal is ongoing. This will be the case for people starting the treatments as well as those already taking the treatments."