Questions Without Notice from Party Spokespeople

Part of 2. Questions to the Minister for Health and Social Services – in the Senedd at 2:34 pm on 12 February 2020.

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Photo of Angela Burns Angela Burns Conservative 2:34, 12 February 2020

Okay. So, I'd like you to work one more miracle, and that's about a drug called Kuvan. Now, Kuvan is to people with PKU what Orkambi is to other people with conditions. Now, we've been waiting for 12 years for the National Institute for Health and Care Excellence to really get to grips with Kuvan. Earlier this month, Jeremy Hunt, the former health Secretary, called on Matt Hancock, the current holder of the post, to use the same magic to secure access to Kuvan that he used to give the go-ahead for Orkambi for cystic fibrosis. And there is a legal challenge going on by a PKU sufferer in England, currently, against NICE. It is costly, but it would make a dramatic difference to the lives of those small handfuls of people who have this really horrible condition. Minister, you're always saying that you want the NHS in Wales to follow a different path, you strive to try to be a lot more inclusive, in your view, more equitable. Will you have a real go at this, and would you consider trying to move it so that this drug, which is available in all the nations of the European Union other than Poland—I will exclude Poland—and the UK can be prescribed to patients here in Wales? Small numbers—but we can't just ignore the rare and orphan diseases and conditions simply because there aren't masses of people who need those. And you proved it with Orkambi; let's do it with Kuvan, please.