Orkambi and Cystic Fibrosis
Debate between Paul Scully and Bob Stewart(6 years, 2 months ago)
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Paul Scully
The right hon. Gentleman’s contribution comes to the nub of the issue. I will scrap most of my speech, which I had not written anyway, and dash around. There are two issues. We can talk about the Government getting involved in pushing NHS England and Vertex together to make a sensible deal in this case, but I come back to the point that this is an analogue system in a digital age. I will try to do it justice, but it is a case of inequality. About 400 patients have access to Kalydeco, which I mentioned earlier. They have a particular mutation to which Kalydeco responds. Around 3,000 patients would be eligible to access Orkambi. However, the point about cystic fibrosis is that, because it is a genetic disease, it cannot be caught, so we know pretty well the number of people we will need to treat over the next few years. There are around 10,400 sufferers in this country, which is extraordinary, because there are only 70,000 sufferers around the world.
Cystic fibrosis is a pernicious disease, and I have not even started talking about its effect on the children of the people I have met. However, it is not big enough to require an international epidemic-style solution, and it is not small enough to be a rare disease. It fits somewhere in the middle.
Bob Stewart (Beckenham) (Con)
Nobody can catch cystic fibrosis, but as my hon. Friend mentioned, two sufferers in the same room together can really affect one another. The bugs from their lungs can transfer, presumably through the air.
Paul Scully
Absolutely. A lot of the people I have met have aspergillus, which is a mould-based infection. It is around in the air in many homes, which for us does not matter, but for sufferers can cause a severe reaction and a severe loss of lung capacity.