Cystic Fibrosis Drugs: Orkambi
Debate between Alan Mak and Paul Scully(4 years, 10 months ago)
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Paul Scully
The right hon. Gentleman is absolutely right; that is a really good point. Actually, the diabetes came from the cystic fibrosis, but he is right to talk about the medication in that way.
Alan Mak (Havant) (Con)
My hon. Friend is making a persuasive speech. This issue is important in my Havant constituency, as it is in the constituency of my right hon. Friend the Member for Tunbridge Wells (Greg Clark), who is sitting next to me. Does my hon. Friend the Member for Sutton and Cheam (Paul Scully) agree that while we praise the work of the Cystic Fibrosis Trust, we should also commend it for the research into the condition that it does itself? I urge hon. Members from across the House to support any bids for funding that it makes to the NHS or other funding bodies so it can continue its important work in this field.
Paul Scully
My hon. Friend is absolutely right. I have been to the Cystic Fibrosis Trust twice, and I was absolutely blown away. It is the kind of organisation that I got into politics to help. I met Lynsey Beswick, who works there—she may be in the Public Gallery. She is a CF sufferer, and she has just climbed Snowdon. I would struggle with that, and she has reduced lung capacity. [Applause.] That is the first time I have got a round of applause in Westminster Hall; I am not sure it is to be encouraged. Lynsey, that is for you.
Orkambi and Cystic Fibrosis
Debate between Alan Mak and Paul Scully(6 years, 1 month ago)
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Alan Mak (Havant) (Con)
My constituency, and that of my right hon. Friend the Member for Portsmouth North (Penny Mordaunt), were among the top three constituencies for people signing the petition. Will my hon. Friend join me in calling on the Minister to get Vertex, the NHS and NICE to continue their negotiations, because time is of the essence?
Paul Scully
My hon. Friend is absolutely right. It is important, because every day counts for people who have the condition. I said that cystic fibrosis cannot be caught, but neither can it be cured. The people who have cystic fibrosis now will be the same people who have it for the rest of their lives, which basically means that the supply of Orkambi would have a fixed price. We know pretty well, within a margin, how much we would spend on this lifelong treatment.
The current evaluation process turns on an incremental cost-efficiency ratio, which is the total additional lifetime cost of a treatment divided by the additional quality-adjusted life years resulting from that treatment. For acute conditions, the additional quality-adjusted life years resulting from the shorter-term treatments moderate the efficiency ratio, even if the drug is expensive. However, because drugs for chronic and lifelong conditions have to be taken every day for life, the cost of the treatment prevents that downward moderation. Basically, it is easier, under the NICE appraisal system, for medicines for acute conditions to attain a more favourable cost-effectiveness outcome than for innovative medications for chronic conditions, like Orkambi. It is basically a one-size system.
We then have to take into account section 13G of the National Health Service Act 2006, as amended by the Health and Social Care Act 2012, which requires NHS England to have regard to the need to reduce inequalities in health outcomes. Those two imbalances in the system need to be looked at if we are to have a system that is far fairer for people with illnesses such as cystic fibrosis.