Part of 2. Questions to the Minister for Health and Social Services – in the Senedd at 2:24 pm on 25 September 2019.
I'm afraid the Member's question doesn't just depart from her initial one in not referring to low clinical priority treatments and a list of prescribable treatments, but actually it's a significant misunderstanding of the position around Orkambi.
I have said in correspondence to all Members and in public statements that I continue to express my frustration at the choice that Vertex have made—the manufacturers of Orkambi and Symkevi—to not engage with the appraisal process here in Wales. It's not simply a matter of money. Members here, but also those watching families who are directly affected, this is not simply about money; it is actually about the refusal to engage in a process to provide the clinical evidence of the effectiveness or otherwise of these medicines. Frankly, if they were making the medicines available for £1 a go, as opposed to £100,000 a treatment, we'd still need to know what is the effect of the medicine.
On the deal that they've struck in Scotland, having had their own Scottish appraisal process not grant access to Orkambi, they've then gone back and struck a different deal. That's in commercial confidence. I have not had sight of that, so I'm not in a position to copy the same deal or even to comment properly on the relative value provided to it.
I'd say again to Vertex to engage with the appraisal process here in Wales as they have indicated in the past they would do, to not place families in this invidious position, and to allow us to properly understand the effectiveness of the medication that they have available, and for us then to make a properly evidence-based choice. I don't want any family in Wales to be put in the position that the Member describes because of a refusal of a pharmaceutical company to engage in our well-respected and well-understood appraisal process.