Orkambi and Cystic Fibrosis
Debate between Paul Scully and Ed Davey(6 years, 8 months ago)
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Paul Scully
We are effectively in a position of negotiation with Vertex. When the petition was originally started, the issue was, “Here is Orkambi; let’s set a price and buy it.” It was a very high price, which is why the National Institute for Health and Care Excellence made its decision. We have now moved on to a portfolio system that Vertex is proposing. Vertex has a drug that has been available here for a little while, Kalydeco. Orkambi is available in Ireland, the Netherlands and other countries, but not here—and even then, it would not be right for every mutation of cystic fibrosis. Symdeko is coming out in the future, and there is a pathway of drugs that will have ever-increasing effectiveness on a wider group of people.
Vertex has proposed a system, which has been knocked back by NHS England, but I hope both sides can come to a reasonable conclusion as a result of this debate and as a result of pressure. The important thing is to get access for those people who are suffering and whose lung capacity can reduce so quickly at any moment.
Sir Edward Davey (Kingston and Surbiton) (LD)
The hon. Gentleman is making a powerful case. Is the problem that the current system of NICE analysis, using its quality-adjusted life year—QALY—measures, is unable to take account of negotiated discounts through pipeline agreements such as the one he has outlined? Is it time that this House and the Government made it clear that that needs to be taken account of, and that NHS England and Vertex need to get together and show that the cost is good value for money when we take account of pipeline deals and negotiated discounts?
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.