Access to Orkambi

Debate between Ivan Lewis and Anne Marie Morris

Tuesday 17th July 2018 Commons Chamber

[Mr Lewis]

The right hon. Gentleman speaks for everybody present this evening and probably many who are not.

There is inevitably sadness, but there should be real anger because this situation is causing human misery to many people who have enough challenges in their lives without not being able to resolve this situation. It would not be right for any of us to pretend that these decisions are easy. NICE does a good job in very challenging circumstances, on the whole. In no way should we or do we seek to undermine its work.

[Anne Marie Morris (Newton Abbot) (Con)]

The hon. Gentleman is being very generous in giving way. As he is reflecting on NICE and its process, does he agree that there should be a change in the way it measures or calculates quality of life when it comes to rare rather than ultra-rare diseases? If the condition was classed as ultra-rare, we may well have got the go-ahead.

[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wrong—arguably—is that the criteria it is applying and the criteria it has been given by the Department of Health are out of date and flawed.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.