2020-01-02 by W.M.
Pharmaceuticals: who decides the price of life? – podcast
- This episode was first broadcast on 7 February 2019.
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.
India Rakusen heard from the Guardian’s health editor, Sarah Boseley, on how the Boston-based pharmaceutical company Vertex explained the price – and how the discovery of the drug was partly funded by charities and British taxpayers.
This episode from February has been updated with a new interview with Carlie Pleasant.
Support The Guardian
The Guardian is editorially independent.
And we want to keep our journalism open and accessible to all.
But we increasingly need our readers to fund our work.