Cystic Fibrosis Drugs: Orkambi
Sir Mike Penning Excerpts
Monday 10th June 2019

(1 year ago)

Westminster Hall
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Department of Health and Social Care
Paul Scully Portrait Paul Scully - Hansard

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 Portrait Sir Mike Penning (Hemel Hempstead) (Con) - Hansard
10 Jun 2019, 4:39 p.m.

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 Portrait Paul Scully - Hansard
10 Jun 2019, 4:41 p.m.

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.

Break in Debate

Mr Adrian Bailey (in the Chair) Hansard
10 Jun 2019, 5:20 p.m.

I gave the Chair of the Select Committee a little latitude, but that may not be available to other speakers. I call Sir Mike Penning.

Sir Mike Penning Portrait Sir Mike Penning (Hemel Hempstead) (Con) - Hansard
10 Jun 2019, 5:29 p.m.

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.

Thelma Walker (Colne Valley) (Lab) Hansard
10 Jun 2019, 5:26 p.m.

It is a pleasure to serve under your chairmanship, Mr Bailey.

It is just two years ago last week that I was elected Member of Parliament for Colne Valley. Over the past two years, it has been a real privilege to serve and speak up for my constituents. One day, however, will stand out more than most for me, among many amazing and challenging days. It was Friday 31 May, when two children visited me in my constituency office. One was nine-year-old Tristan with his grandpa John, and the other was one-year-old toddler Charlie with his Mum and Dad. I had had a busy advice surgery that afternoon, but went straight to meet Charlie in one room, while Tristan waited patiently in another. They were in different rooms to avoid cross infection as they both suffer from cystic fibrosis.

They had come to see me to each hand me a letter in which they described their daily challenges living with cystic fibrosis. The letter also described how access to just one particular drug might make their daily battle with the disease a bit easier, and might result in both children living longer lives. One-year-old Charlie, along with his parents, would benefit if he could access the necessary drug from such an early age. Charlie handed over his letter to me, which I must admit was a bit soggy and chewed by the time I got it. It was a joy to be with him and his parents.

Tristan also handed me a letter. Following the death of Tristan’s father in 2016, Tristan’s grandpa and granny, John and Frances, look after Tristan as his guardians. The family have experienced more than their fair share of loss. Like Tristan, his uncle Adam suffered from cystic fibrosis, and died aged 25 in 1999. I can only imagine the immense pain and grief and incredible frustration of losing a son, yet still, nearly 20 years later, being unable to access the drugs that already exist and that would improve the life of their grandchild. I cannot express how much admiration I have for Tristan and his family, and for Charlie and his; they have campaigned with the Cystic Fibrosis Trust to improve the lives of others.

What is this drug? It is called Orkambi; it already exists and it would improve the lives of children such as Tristan and Charlie. It is made by the pharmaceutical company Vertex, and the fact that it is not already available to those who need it is shameful. There are at least 2,834 people currently dealing with cystic fibrosis in England who could benefit from Orkambi.

Why has Orkambi not been made available? The current situation is that Vertex, NHS England and the National Institute for Health and Care Excellence cannot agree a price. We know that Vertex declined a £500 million offer from NHS England, and we know that the NHS has made a new offer, which currently remains confidential. Vertex did not consider £500 million an adequate sum, but it did, allegedly, consider it okay to destroy 8,000 packs, or a 600-year supply of Orkambi, as the deadlock continued. The lives of children such as Tristan and Charlie seem to be deemed acceptable collateral damage in this boardroom-style version of healthcare provision.

I urge Vertex to consider the NHS’s current offer with the lives of children such as Charlie and Tristan at the forefront of its mind. This seems to me to be a straightforward ethical decision for Vertex, which should be willing to compromise on its profit margin in circumstances where the lives of children are at stake. Let us be clear: Vertex is not struggling to make ends meet. It is a $43 billion company. That is about the same as the GDP of Bolivia or Tunisia. Vertex’s chief executive officer received a total salary of around $19 million in 2018, making him one of the best paid CEOs in the pharmaceutical industry. As ever, the problem is not that there is not enough money, but that big business is not willing to spend it.

This situation, in which children’s lives are held to ransom, must not continue. Vertex and NHS England must agree a deal soon, or an interim solution must be found, as happened in Scotland. Children’s lives must not continue to be held hostage. Tristan’s grandpa has already lost a son to this condition. There is simply no excuse for not prolonging and improving Tristan’s life. I will continue to campaign with Tristan and his grandpa, and Charlie and his parents, until this drug is made available to them and they are able to get on with their lives.

I will finish with a direct plea from Tristan’s grandpa, John Binns:

“We don’t have time – please don’t waste it. It’s costing lives and there are too many cystic fibrosis angels already.”