Cystic Fibrosis Debate

20th March 2018

Iain Duncan Smith backs calls for the drug Orkambi to be available on the NHS for people with Cystic Fibrosis and urges the Minister to go to the Cabinet Office and show them that there is a good cost-benefit analysis to show the benefits of making this drug available.

I am grateful to you, Mr Evans, for your chairmanship today. As you suggested, I will be brief.

So much has been said already about this drug that I want to make only two points about it at the end of my speech. I congratulate my hon. Friend the Member for Sutton and Cheam (Paul Scully) and hon. Members from both sides of the House on having been responsible for the assistance and support that has been provided—both the roundtable that took place earlier, which I was not able to attend, and the e-petition—and on representing the sufferers and their families so well. I congratulate them, and I am pleased and grateful that they have managed to secure this debate.

I am really here because one of my constituents is standing outside hoping that there may be some resolution as a result of this for her daughter, who suffers from cystic fibrosis. I have known the family and the daughter for a little while. The contrast is interesting between two children of my constituents. On the one hand, Megan Bridge is a cystic fibrosis sufferer—her mother, Gill, as I said, is outside just now— and she has made the point to me that at the moment she is old enough to study law. Like any of our children of that age, she should have great prospects, hopes and aspirations, but hers are limited because the prognosis is that she probably does not have more than another two years if things carry on as they are.

If a decision is not taken about this drug soon and agreement is not reached, it is at Megan’s end of the spectrum that that becomes very difficult, because not only will further damage set in, as was said by the hon. Member for Sutton and Cheam earlier, but a decision might not be made within a year or two, in which case the prognosis for her and for her family is incredibly poor. She begs that we and the Minister—I will come back to this point shortly—make a clear decision with the drugs company as soon as possible.

At the other end of the spectrum is somebody called Amelia, who is only five years old. Her mother, Lucie, came to see me in my surgery to talk about her condition and about how the family copes with it. This poor girl, like so many others who have been mentioned, has to take 40 tablets a day, and has huge amounts of physiotherapy, including three nebulizer treatments, every single day. She is not yet on a feeding tube, but her mother has been told that if the current situation goes on for much longer then she will be.

My point is that these accounts are two ends of the spectrum. In a sense, they are not representative; although they are representative of sufferers, they are not representative of a vast number of people out in the country, because this is such a peculiar genetic condition that, as has been said time and again, not a huge number of people have it. That is where this place and Governments of whatever persuasion—this is not party political—sometimes have to recognise that the common good is not always about majorities and large numbers. It is more often the case that this place is set up to deal with those who are so small in number that they are unable to make the case for themselves. They are unable to drive the point home; they are unable to muster the vast number of votes that it might take a matter to the point where MPs listen very carefully.

What we have seen today is of enormous credit to the humanity of my colleagues on both sides of the House. These people are not likely to change the vote in my colleagues’ constituencies, but they care enough about the idea that these people’s lives matter that we might be able to do something for them.

I thank the right hon. Gentleman for giving way. I am listening carefully to what he is saying, and he is saying exactly what I was just about to point out, namely that this is why we are here. This is why we are sent to this place, to speak up for the people who cannot speak up for themselves. My constituent, John Bacon, who is in his twenties, sent me a very simple email that said, “Please help me. Please speak for me and advocate for me. And not just for me, but for all those with cystic fibrosis, and remove the price that has been placed on our lives. We are worth it.” They are—and if we do not speak for those who cannot speak loudly, we should not be here.

I completely agree with the hon. Lady, and that is really the point that not just me but pretty much everyone who has spoken has been making.

I do not know what detailed conversations and discussions are going on about this drug. I sat in government, so I know how complex these things are sometimes. I say to my hon. Friend the Minister that “frustrating” was the word I often used when bodies are set up and fall back on their rules because they are not so exposed to public scrutiny.

The latest evidence—I understand that it comes from the company—shows that there is stronger data and that this drug is even more vital than it was before. It now slows lung decline by 42% and it might turn out that it is even more effective than that, which would give somebody like Megan, who I mentioned earlier, the possibility of longer. What is that delay about? The possibility of transplant, and even further down the road the genetic changes that may well be able to be introduced. So, buying time matters dramatically for this group, in the hope that things will improve for them.

When I was in Government, I know that we spent a lot of time on social impact bonds. One area we worked hard on—the Government have incredibly good data on it because we made a number of case studies—is the cost-benefit analysis, to allow us to say that local authorities and so on could set up social bonds to change the number of people going into prison, or to affect the number of people who fail at school. So it was possible to forecast how a cost-benefit analysis would work; it exists.

Right now, I am not certain that NHS England and for that matter NICE are employing that system. I urge my hon. Friend the Minister to go to the Cabinet Office and say, “We have done the work on a proper cost-benefit analysis of this drug, and once it is tied in with future developments of other drugs and balanced with health treatments in hospital, constant work with physiotherapy and all the rest of it, I am certain that this group will not only to be able to have this drug, but we will ask ourselves why that didn’t happen before when it so mattered and it benefits them. It also benefits us because instead of their being in hospital, others may be able to use that hospital treatment.” That is a good cost-benefit analysis and I urge my hon. Friend to look at it.

| Hansard