The cystic fibrosis drug Orkambi could extend the lives of thousands of children – but it comes with a price tag of £105,000 per patient per year. The NHS says it cannot afford it. Health editor Sarah Boseley explores how the cost of a life-extending drug can be weighed next to a person’s life. Plus: Natalie Nougayrède on the conspiracy theories threatening European unity
When Carlie Pleasant was nine, her parents were told she would not live beyond 15. Her diagnosis was cystic fibrosis, a genetic condition that results in a build-up of mucus in the lungs, making it hard to breathe. Pleasant, who is now 29 with a husband and a son, lives in fear that cystic fibrosis will cut short her life.
But Pleasant has a genetic mutation that is targeted by Orkambi, a new type of drug that for the first time works on the underlying causes of the condition, rather than the symptoms. But it comes at a high price: £105,000 per patient per year. The NHS says it cannot afford it.
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