Access to Orkambi

Rachael Maskell Excerpts

Tuesday 17th July 2018 Commons Chamber

[Mr Lewis]

I think that most people would accept that now is the time for a review of the criteria that are applied and the processes that are undertaken. Any organisation needs to be continually improving. We do not condemn NICE. In fact, we acknowledge that it has got many difficult decisions right, but it has also got some wrong. Time and again, the reason that it has got those decisions wrong—arguably—is that the criteria it is applying and the criteria it has been given by the Department of Health are out of date and flawed. I think we would all want to see a review of NICE’s remit and the way in which it carries out its work over a reasonable period of time. It would be helpful if the Minister would respond to that point when he concludes the debate.

[Rachael Maskell (York Central) (Lab/Co-op)]

My hon. Friend is making a very important speech. As I know from being a physio who worked with cystic fibrosis patients, when making an assessment of the cost of treating cystic fibrosis, we must look at the social cost, the economic cost and the immense cost of keeping somebody alive. Does he agree that Orkambi would be a solution to that, let alone addressing the human cost?

[Mr Lewis]

I entirely agree—my hon. Friend makes absolutely the right point. When there is an incomplete assessment in looking at value for money versus outcomes, that will lead to flawed decisions that are incredibly difficult to justify. We have a mismatch between the basis on which NICE is expected to make these decisions and appropriate processes. Instead of everybody hinting, “Yes, of course there’s a need to review NICE—of course that would be a good thing”, we would like to hear from the Minister a timescale as part of the response to the specific issue of Orkambi in terms of NICE’s roles and responsibilities.