Orkambi and Cystic Fibrosis

George Howarth Excerpts

Monday 19th March 2018 Westminster Hall

[Bim Afolami (Hitchin and Harpenden) (Con)]

It is a pleasure to serve under your chairmanship, Mr Evans. It is also a pleasure to be in this debate. I commend my hon. Friend the Member for Sutton and Cheam (Paul Scully). As has been said, the number of Members of Parliament here for a Westminster Hall debate is extraordinary, and shows how much Members and constituents care about this.

I will be brief because it is important that Members have a chance to make their contributions. Cystic fibrosis is the most common inherited genetic disease in the UK. We have already heard that Orkambi has been praised as being important and effective by NICE.

I am thinking about two of my constituents: Matthew Dixon-Dyer, who suffers from the disease himself, and Karen Murphy, whose son suffers from the disease. They urged me to speak in this debate. They did not just want me to urge the Minister to take charge of the negotiations with Vertex, or at least to press NHS England much harder to come to a resolution with Vertex. Nor was it to do with just cystic fibrosis or this drug. It is important that the cost-benefit analysis that NICE uses reflects chronic conditions, which drugs such as Orkambi deal with, more broadly, rather than just dealing with acute conditions, which it was typically designed for.

Like my hon. Friend the Member for Hornchurch and Upminster (Julia Lopez), I ask the Government to build the greater cost to the NHS later into the cost-benefit analysis. As we have heard from many Members, individuals may have to be in hospital for weeks on end as a result of the reduction in lung capacity. Karen Murphy’s son was in hospital for 16 weeks. I do not know what the costs of that were.

[Mr George Howarth (Knowsley) (Lab)]

The hon. Gentleman is making a very powerful point. Does he agree that, while we need processes to evaluate new drugs, sometimes the system does not work, which is why we have Ministers and such debates?

[Bim Afolami]

Yes, sometimes systems do not work and, as I said, I believe that in this case the Minister should get involved, but we also need to look at the processes. Members of Parliament cannot come to the House and demand action for every single drug. We need to build in better processes for NICE so that when there is a drug such as Orkambi, which deals with a chronic condition and can make a significant difference to people’s lives, the Government, Members of Parliament, this country and our society can act in the right way.