Posted by Michael Wonder on 18 Sep 2019
'A child's health should not be a postcode lottery': anger of cystic fibrosis sufferers forced to pay £20,000 for drug abroad
17 September 2019 - Patients have formed a buyers' club to source a version of Orkambi after the drug's manufacturer and the NHS locked horns in a price war.
It's a disease that's been described as "like drowning on the inside".
“You cough. You gasp. Your lungs fill with fluid. Every breath is a struggle. That’s how you live. And how you die,” read one Canadian charity advert.
There's currently no cure for cystic fibrosis, yet there is a life-changing drug available that has shown to not only halt the progression, but also boost lung function. Last week, it was announced the Scottish government has agreed a deal on the cost with the manufacturer of Orkambi, but the NHS in England and Wales remain in a stalemate with the firm over the price.
