Orkambi and Cystic Fibrosis

Mike Penning Excerpts

Monday 19th March 2018 Westminster Hall

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

It is a pleasure to take part in this debate. Like everybody in this room, I have constituents who suffer from this terrible genetic disease. We live in a society where sometimes those who shout loudest get heard more, but interestingly, it is not possible for those who suffer from this terrible disease and their families and loved-ones to have orchestrated the petition. Members of the general public who have no contact with someone who has CF have signed it and decided that the process is fundamentally unfair. Like the hon. Member for Dudley South—

[Ian Austin]

North.

[Sir Mike Penning]

My apologies—don’t forget I am a southerner.

The hon. Member for Dudley North (Ian Austin) and I had a good meeting at the roundtable. All of us learned things. For colleagues who were not there, there are some good notes to come around.

We thought we would not have a decision by tonight from NHS England on the Vertex proposals—it usually takes much longer—so I was very disappointed when I saw not only what NHS England put out, but the press release from Vertex. As the hon. Gentleman said, it is not so much because the Department, NICE or the companies are bad—our constituents could not have any of their drugs without the R&D done by those companies. NICE is not capable, under its guidelines, of properly analysing the benefits of the drug, or the other drugs coming down the line. The Republic of Ireland must have sat in exactly the same position that we are now in. It had difficult negotiations with Vertex about a plan for not just one or two drugs, but the drugs coming down the line.

Let us not beat about the bush: this drug is not a cure. It helps some people. At the end of the day, they will either have a transplant or their lungs will give way. It is wonderful that we will have an opt-out transplant system. People are dying in this country today because the organs are being wasted. Lung transplants are vitally important. We should all campaign in our constituencies to give people the confidence to tell their loved-ones what they want done with their organs, rather than just relying on the legislation. At the end of the day, to help people today and future sufferers of this terrible disease—we know they are coming, because it is genetically in the system—we need not only drugs that slow it down and stop the lungs filling with fluid, but to get a cure. I hope we get to that position in my lifetime. Those of us who have been in the House for some time will remember taking the Human Fertilisation and Embryology Act 2008 through. It was very controversial when we started using that sort of technology, research and work, but I am pleased that we passed that Act because many people are around today who have better lives and who, without us using that technology, would have been very worried.

As my hon. Friend the Member for Sutton and Cheam (Paul Scully) said, this is not about individuals. When an individual gets CF, the whole family and all their loved ones get it. If the family is not there, what happens? The NHS and social services. Several colleagues have asked about the overall cost. If we do not give people these drugs—not just this one, but the others coming down the pipeline—the cost to the NHS is greater. If we take away the moral and ethical position that we have something that will improve and extend someone’s life and look just at what NICE looks at—the cost implications—it is plainly obvious that we need to have a better system for NICE to assess the costs.

My hon. Friend called it “physiotherapy”, but someone who suffers with CF has to have a pummelling. People have to do an amazing thing to their loved ones to get the fluid out their lungs and to stop them drowning internally. Instead of saying that drug companies are bad and NICE is good, we need to bang some heads. Frankly, the only people within Government who will do that are the Ministers. That was said to me time and again when I was a Minister. Time and again I tried, and time and again I got pushed back, but I kept going.

It is obvious—to echo what I said at the start of my comments—that those who shout the loudest should not always win. In this case, we need to shout for them. That is what we were sent here for, and that is what we should do today.