Mother's anxious wait over daughter's CF drug-funding decision

Georgia wants NICE to recommend the NHS funds the treatment

The mother of a baby with cystic fibrosis faces an anxious wait to see if the NHS will fund drugs that could help treat the condition.

Georgia, from Nuneaton, said the treatment could double the life expectancy of 15-month-old Gia.

Medicine evaluation organisation NICE, which advises the NHS, said it was considering whether or not to recommend funding three cystic fibrosis drugs.

A final decision is expected to be announced next year.

Georgia described the drugs, Orkambi, Symkevi and Kaftrio, as "lifesaving" and believes they could give her daughter the opportunity of a normal life.

Treatment is understood to cost more than £100,000 per patient per year, which could mean it is unaffordable for the NHS, however.

Georgia's daughter is due to begin a course of Orkambi soon, but cannot start treatment on Kaftrio until she is two years old.

There is no guarantee at this stage that her daughter will be able to move from one drug to the other, she said.

"It's important for Gia and all the other children because it's a life changing drug. It's going to extend her life by 40-odd years and give her a better quality of life," she said.

"It might potentially give her a more normal life that she deserves."

On a daily basis, Georgia has to carefully work out the fat content of everything Gia eats because her pancreas does not work.

The toddler also has morning and evening physio routines, as well as a twice-daily course of antibiotics to protect her from airborne infections.

"Without all this medication and physio she would be a very sick baby," she said.

"I want to make sure she goes out and about and lives like a normal child.

"We're lucky enough to have an amazing team around us. We've got a nurse, doctor, specialist, dietician and a physio."

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. Current treatments have improved life expectancy and the NHS said currently about half of people with cystic fibrosis will live past the age of 40.

Kaftrio, which can treat the condition, was licensed for adults few years ago and for younger children earlier this month.

But a committee for NICE found while they were clinically effective treatments, they were too expensive to be recommended for use on the NHS.

A consultation will take place as to whether it can continue to be prescribed.

Helen Knight, director of medicines evaluation at NICE, said the organisation wanted to have all the relevant information before making a decision.

Georgia said she had been in touch with The Cystic Fibrosis Trust about the situation which is part of the consultation process and is asking people for their feedback.