Cystic Fibrosis Drugs: Orkambi

Mike Penning Excerpts

Monday 10th June 2019 Westminster Hall

[Paul Scully]

My hon. Friend makes an interesting point. Clearly, a portfolio of drugs is coming through the system. The original drugs treated only 5% of cystic fibrosis sufferers, but now the figure is 50%. The triple therapy that is being researched can benefit up to 90%, and clinical trials show an increase of 10% in some people’s lung capacity in a single week of using the drug. It is disappointing that Vertex has not included the triple therapy in its negotiations about the portfolio. None the less, my hon. Friend is right that the NICE system needs to be reviewed to take an interesting and innovative approach to drug research in future.

[Sir Mike Penning (Hemel Hempstead) (Con)]

There are those who are listening to the debate but are not experts like the families who live with this every day, but lung transplants are a common procedure. The lungs fill up and do not function, and lung transplants are often the only option. How does NICE take that into consideration? It cannot do so when it is looking at the viability and cost-effectiveness of Orkambi.

[Paul Scully]

My right hon. Friend makes a really interesting observation. This morning I saw a number of people, some of whom have had a lung transplant. Orkambi was able to get them to the point where they could have a lung transplant in the first place. I spoke to most of the people via video link, because they could not be in the same room as me due to the risk of cross-infection and aspergillosis hitting their lungs. Aspergillus gets in our lungs, and most of us just bat it off and do not have an issue with it. However, it can adversely affect these people’s lung functions, or even be fatal. That is how debilitating the disease is. What struck me about all this are the mental health issues behind it, which I will come back to later.

--- Later in debate ---

[Sir Mike Penning (Hemel Hempstead) (Con)]

We all hoped that we would not be in this debate again, a year on from the last one. It is a tribute to the House that we have come together, from across the House, for a debate, which probably should take place in the main Chamber, about what is in my opinion an immoral situation, frankly: families are still waiting for a drug that we know can extend lives and prevent a serious need for invasive and very painful surgery. The situation causes a lot of worry among extended families.

Across the Irish sea in the Republic of Ireland—a country that is poorer than us in GDP terms—and in other countries that are also poorer than us, the deal has been done. It is not just a shame but a blight on our proud NHS that we have not come to an agreement one way or the other with Vertex and that we have not made a decision about whether we will go down the Crown use licensing route if Vertex cannot do a deal with us. We could have started that way back—they said it would delay everything, but we are here now, and there are patents being developed around the world. The situation is not of benefit to Vertex—we have heard about its shares—because it has not been able to sell its product in a country with a prominent number of CF sufferers.

Why is this happening? Is it just about cost? Is it just because civil servants and Vertex do not care about the lives of those wonderful people and their children? Is it about greed, or is it about how we procure drugs, as we have heard? When NICE was brought in, it took the politician, quite rightly, out of the decision making. But we cannot be outside it, because we are here as representatives of people who are suffering in constituencies around the country. We are here to be their voice. They have done fantastically well—the campaign group is brilliant: one of the top campaigns out there—but we do not seem to get anywhere. We have to look at how NICE looks at whether something is value for money. How can we value someone’s life? How do we value someone having a lung transplant later in life? What if they are not well enough to have that lung transplant, and they die early? What about the cost on not only physical health but mental health?

Let me stretch the House’s imagination a little. I used to be the roads Minister. Understandably, everybody wants roads—they want bypasses here and there. I had a simple way of looking at them: we would look at the benefit-cost ratio and say, “If we put money into that pot, what is the benefit to the community?” It would be £1 billion for a bypass, but the community benefit would be £3 billion, for example. Clearly, the way that NICE is looking at this drug is that there is not a good cost-benefit ratio, even though we know how much benefit there would be. NICE needs to look down the other end of the telescope.

Things have changed since NICE was set up—medicine has changed and drugs have changed, as the Chair of the Health and Social Care Committee, the hon. Member for Totnes (Dr Wollaston), mentioned. There are generic drugs coming down the line that are fundamentally targeted at certain illnesses, particularly ones that people inherit and are born with. Those drugs can turn off that switch and make the situation better, but NICE was never set up to deal with them. I was a shadow Health Minister for four and a half years; we looked at how NICE could develop and where to go with it. NICE is quite fixed, but because we politicians tell it to be. The House set up NICE—those with a long enough memory will remember when we did—with the Department of Health.

The key is for NICE to look at this issue differently. We can set up trials and we can find out why Scotland has an interim agreement, but the trials are there now. How immoral is it that someone was put on Vertex and their life expectancy got better, but it was removed? We are not talking about millions of people—surely, Vertex could have addressed that. We cannot sit here or in the main Chamber next year debating exactly the same thing that we debated last year. I do not care what colour the Government are: if there is a change of Government tomorrow morning, the issue will be exactly the same. Minister, for the sake of humanity, and families and loved ones, we have to do something about this, and we need to do it now.