Orkambi and Cystic Fibrosis Debate
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John Spellar
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Orkambi and Cystic Fibrosis
John Spellar Excerpts(6 years, 1 month ago)
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Paul Scully
It is exactly the case—there is no doubt about that. There are many people in the Public Gallery whose children are sufferers from cystic fibrosis. When I was at the Cystic Fibrosis Trust last week, I could not meet many sufferers, because they cannot be in the same room due to the risk of infection. As my hon. Friend says, cystic fibrosis can escalate quickly, and the more we can treat the underlying causes, which Orkambi and subsequent drugs will allow us to do, the better.
John Spellar (Warley) (Lab)
Can we not see, during the week in which Stephen Hawking died in his 70s from a condition that was anticipated to kill him in his 20s or early 30s, that in fact conditions can allow for a much longer life? Is it not therefore incumbent on the Government to put pressure on both NHS England and the manufacturer to get an acceptable solution that will enable younger patients in particular to have the same opportunity that Stephen Hawking had?
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.