Orkambi and Cystic Fibrosis

Julia Lopez Excerpts

Monday 19th March 2018 Westminster Hall

[Ian Austin (Dudley North) (Lab)]

I congratulate the hon. Member for Sutton and Cheam (Paul Scully). He gave a really good explanation of this issue and why this drug should be provided. Hon. Members are supposed to start their speeches in these debates by saying how pleased they are that the debate is taking place, but I am not pleased at all. I think that this is the third debate on this issue in which I have taken part over the past few years. We have presented petitions at Downing Street. We have had campaign events in Parliament. As has been said, we had 41 Members at a roundtable just a few weeks ago. And we are still here. Three years after Orkambi was approved for use and two years after NICE said that it was “important and effective”, we are still here, waiting for it to be provided for people with cystic fibrosis. So I am not pleased that we have to have another debate about this issue, but whatever I feel about that is nothing compared with the upset and worry—indeed, the terror—that people with cystic fibrosis and their families go through as they wait while their health, life expectancy and quality of life decline.

The reason why I have taken an interest over the years in this issue is that I was contacted by Carly Jeavons, an amazing woman from Dudley who took part in the clinical trial for Orkambi. I have also been contacted by Samantha Carrier, a young mum from Dudley whose baby daughter Daisy was diagnosed shortly after birth and who now devotes her life to campaigning for access to these life-changing drugs. I want to tell everyone here what Carly told me, because it explains much better than I can why we are here and why this drug must be made available. Before being put on the clinical trial, she had had to choose between leaving work, with all the financial hardship that that would cause, and struggling in work, with her health being made worse. She had to take 90 tablets and do two hours of physiotherapy every single day. Her lung function was at about 44%, and she spent two weeks in hospital every couple of months. She told me:

“Orkambi has changed my life. I quickly became well enough to start to live a more normal life again as a working mum. My health has remained stable. I only need one or two courses of IV’s per year instead of four. Hospital visits have massively reduced and admissions are non-existent.”

But that is just part of it.

[Julia Lopez (Hornchurch and Upminster) (Con)]

The hon. Gentleman makes the important point that if people have access to this drug, they can reduce the number of times they have to go to hospital. It would be very helpful if we had an understanding of the cost of those hospital admissions and what that would be if it was offset against the cost of the drug. Does he agree with that point?

[Ian Austin]

That is a really important point and one that I hope the Minister will take into account. We should be looking not just at the cost of providing Orkambi, but at the savings that that would make in other areas. I want to develop that point in a few minutes.

What I did not understand before speaking to people with cystic fibrosis was the toll that not knowing whether they will be given these life-saving drugs takes on their mental health. I am talking about the worry that it causes them and their families and the stress and fear that it puts them through. Something else that I did not understand before meeting Carly was the impact that having a condition that reduces life expectancy has on the rest of someone’s life. Lynsey Beswick, who many hon. Members will recall was at the roundtable a few weeks ago, explained that very well. She is in her 30s and told me that, at a time when her friends are getting married, planning families, developing their careers and starting businesses—making long-term plans—people such as her are deterred from doing those things. They just cannot plan for their futures in the same way because, to put it bluntly, they do not know how long they have to live.

Since having Orkambi, Carly has been able to go on holiday abroad for the first time with her family. She has married. She has started a business. Let us think about that. She has started a business, so she is employing people and making a much bigger contribution to the economy. People talk in these debates about the cost of providing these drugs. Let us talk also about the contribution that people who are given Orkambi can make to society. Let us think not just about the cost, but about the contribution they make, the businesses they can start, the jobs they can create and the taxes that will be paid. Let us think about that as well. Let us think about the contribution that providing Orkambi can make to our economy.

What is worse, the longer people live without access to drugs such as Orkambi—I had not really appreciated this—the worse their lungs become. Every day that access to this drug is delayed is another day on which the lungs of people with cystic fibrosis are damaged. I want to repeat that point, because I really want people to think about this: every day that people who could be helped by Orkambi are denied it is another day on which their lungs suffer irreparable damage.

That damage will not be put right. It is not like some medical conditions whereby the patient is given a drug and they are cured, restored and put back to how they were originally. That is not the case here. That damage will not be put right when—or if—they eventually get this drug. The damage that has been done is permanent. Every day this treatment is delayed limits the lives of people it could help. I really want the Minister and others to understand that point, because I must confess that I had not fully understood it until I chaired that roundtable with the Cystic Fibrosis Trust and Vertex a few weeks ago.