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Cystic fibrosis drug: ‘Is my child’s life not worth £100k

Cystic fibrosis drug: ‘Is my child’s life not worth £100k


She said: “Parents like myself will need to take time off to look after them. That would then mean claiming benefits.

“There would just be a chain of money that we would then need to survive on, through the government, that would probably exceed £100,000 a year.”

Ms Doherty said: “It might seem like a lot of money, but it means my son can grow old. It means he can grow up and get a career and contribute back to society.

“It comes with a very high price tag but my question to NICE and SMC is, is £100k not worth my child’s life? Is it not worth any human’s life?”

Ms Doherty said alternative treatments appeared to be less effective and had more side effects.

“The result if he doesn’t get it, and those people who don’t get it, they are then going to be living a life full of ill health.” Ms Doherty said.

Two other drugs for cystic fibrosis, Symkevi and Orkambi, are also at risk of no longer being prescribed.

Children being treated for cystic fibrosis by the NHS are often moved onto Kaftrio when they reach the age of six.

The drug has now been classed as safe for children aged two or older but for those yet to start it, it is not known if they ever will.

NICE and SMC will hold a four-week consultation before deciding if the three drugs will continue to be offered to new patients.

A spokesperson for the Scottish Medicines Consortium said those on the treatments will continue to receive them “irrespective of the outcome” of the ongoing consultations.




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