Orkambi and Cystic Fibrosis

David Linden Excerpts

Monday 19th March 2018 Westminster Hall

[David Linden (Glasgow East) (SNP)]

It is a pleasure to serve under your chairmanship, Sir Roger. I start by thanking the 484 constituents in Glasgow East who signed the petition. The hon. Member for Sutton and Cheam (Paul Scully) made an excellent speech and was very courteous in trying to keep his speaking time down to let other Members speak. It is a pleasure to see my hon. Friend the Member for Motherwell and Wishaw (Marion Fellows) back in Parliament and on the Front Bench.

As a new Member of Parliament, the first time that a constituent came to me to raise cystic fibrosis, I am quite ashamed to say that I did not know a lot about it. I was very grateful to Karen Ashe, a constituent from Mount Vernon, who explained to me the difficulties that her daughter, who is just 14 years old, experiences, being admitted to hospital every eight weeks, and the real challenge that that brings. She impressed upon me the importance of why we need Orkambi now.

Even since the debate started, another constituent, Naomi Moore, has tweeted at me—that shows the good thing about us engaging digitally—because I said that I was taking part in the debate. She said:

“With access to amazing drugs like Orkambi/Kalydeco, I’ll be able to use my degree when I graduate. Without it, my future is uncertain and limited.”

She is a girl in Glasgow who is in her fourth year at university, studying geology. That is a very powerful point. The turnout of Members at the beginning of the debate—I must say I am quite disappointed that so many have disappeared—impresses upon us the importance of getting this right.

[Alison Thewliss (Glasgow Central) (SNP)]

My hon. Friend makes the point about young people and their future, which is a big part of the debate. Robert Kennedy and Ashley Wilson from Dalmarnock came to speak to me about their three-year-old daughter, Mirren. She goes for physio twice a day for her cystic fibrosis, but they fear that as she gets older, she may face weeks in hospital at a time. Does he agree that Orkambi ought to be there for them, so that they can access that treatment as their daughter gets older?

[David Linden]

Absolutely; I know that my hon. Friend is a passionate champion of her constituents in Glasgow Central and she is right to put that on the record.

Numerous other constituents have come to me, including Lee Bennie from Garrowhill. Again, she made the case that we need Orkambi now. Over the course of the weekend, I had the privilege of spending some time talking to a friend’s brother, Ross Moore. He is not a constituent of mine, but he has access to Orkambi through the compassionate access scheme. Ross is a remarkable young man who is incredibly articulate. I was quite struck by how frank he is; he has lived with cystic fibrosis for so long and I was very moved by the way in which he could explain why he has access to Orkambi and why he thinks that other people should have access to it.

Ross was moved on to Orkambi only in October last year because his lung function had dropped below 45%. He was quite honest in saying that the first six to 10 weeks were very tough; for some people that can be make or break, but he has got through that. My hon. Friend the Member for Glasgow Central (Alison Thewliss) has mentioned people’s ability to try to put that effort into physio, and Ross said that it is a very arduous process. He does physio for two to three hours a day. When speaking to him, I was struck that he already has access to Orkambi, and he does not want to pull up the ladder behind him. He said to me before I came into this Chamber, “Go in there and explain the benefit of Orkambi; we need to make sure that people understand that for those who do not have access to it already we have got to have that access, because it is only through that research and that ability to use it that they will have it.”

[Bob Stewart]

Does that mean that the hon. Gentleman’s constituent will have Orkambi for life, or will it be taken off him later?

[David Linden]

While I was having that conversation with Ross, that was at the back of my mind. I am very glad that he answered before I managed to ask it, because it is very difficult to ask somebody, “Will you have access to this for the rest of your life?” Thankfully, in Ross’s case, he will.

My hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson) outlined very eloquently the situation in Scotland; for the purposes of time I do not want do that. I had a phone call when I left Glasgow airport this afternoon from my constituent, Helen Seery, who lives in Carmyle. Her son, Layton, was born just 22 months ago and has cystic fibrosis. The 20-week scan showed that he would have cystic fibrosis; he was born prematurely at just 28 weeks. His lungs are naturally weaker as a result of being a premature baby. My constituent Helen made the point about what a difference it makes in Ireland, where people have access to Orkambi at five and six years old. I will visit Layton in Carmyle next week. I am aware that it is a challenge for Helen to bring somebody into the house due to the risk to Layton.

It is important that we stand up and make speeches and that we will send the Hansard to the constituent afterwards, but the most important thing for me is going back to Helen and telling her and Layton that I stood up and said that I think that Orkambi should be available in Carmyle, as well as Carlisle. That is the message that we have to leave with the Minister. Constituents are absolutely clear that we need Orkambi now.