Orkambi and Cystic Fibrosis

Matt Western Excerpts

Monday 19th March 2018 Westminster Hall

[Paul Scully]

I thank the hon. Gentleman for that intervention. I will give way one more time and then conclude.

[Matt Western (Warwick and Leamington) (Lab)]

The hon. Gentleman has been very generous with his time. What struck me most—I am sure that this was the case for many people in the Chamber—was just how many countries, particularly in Europe, have agreed and licensed this product. Therefore the cost-benefit analysis has been done, and therefore it is now incumbent on the Government—the Secretary of State—and the NHS to sit around the table with Vertex and discuss how we can deliver it as soon as possible.

[Paul Scully]

I thank the hon. Gentleman for that intervention. Let me be the first to mention Brexit. This is not quite as random as it might seem, because I met someone last week who lives close to the Irish border. Of course, that means that his daughter cannot access Orkambi, but if they were only a few miles across the border, in the Republic of Ireland, she would have access to it. We have to address that inequality, and that will be done, as I keep repeating, by two things. If we can ensure that we use any of our good offices to get NHS England and Vertex to come to a sensible agreement quickly, we can get the portfolio process started now. But I also ask the Minister to see what more he can do to adapt the system long term, so that it is fit for purpose for those modern-style, portfolio-type deals that are done elsewhere.

I keep talking about the urgency of this issue. We were taken to the Cystic Fibrosis Trust by someone who works here, one of the parliamentary outreach team. Alasdair lost his partner. Her lung capacity had dropped to 20% before she died. Some of the people we met had seen their lung capacity drop from 90% to 15% within two or three months. That is why things such as infections are so dangerous. It does not take a lot. Something that we would just shake off can be, for these people, literally a matter of life or death, or it can be a matter of being able to get a lung transplant somewhere down the line or not. That is why there is this sense of urgency. They have been described as a limited number of people, but none the less they are crucial, important people who, if we give them the treatment that they deserve, can go beyond the 31 or 47 years and live a full life, as we would expect to do. With that, I will conclude and let others speak.