Orkambi and Cystic Fibrosis

Debate between Bob Stewart and David Linden

Monday 19th March 2018 Westminster Hall

[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.