Orkambi and Cystic Fibrosis
Debate between Paul Scully and Greg Knight(6 years, 1 month ago)
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Paul Scully
That is very much the point. Half the people who die of cystic fibrosis are under the age of 31. The average life expectancy for someone born now with cystic fibrosis is 47, so we see how it is starting to extend. When I was at the Cystic Fibrosis Trust just last week, I thought that the two people I was able to meet were just staff of the trust and did not realise they were sufferers. Why was I able to meet them, and why did I not notice? Because they had had lung transplants. In effect, they had pressed the reset button on their suffering. They had fresh pairs of lungs and Orkambi would not necessarily be right or necessary for them. The right hon. Gentleman is absolutely right in identifying that it is for the next generation coming through.
Sir Greg Knight (East Yorkshire) (Con)
In view of the national importance of this matter, would one way forward be for Vertex, the drug manufacturer, to be willing to be more flexible on costings and price?