Orkambi and Cystic Fibrosis

Stephen Hepburn Excerpts

Monday 19th March 2018 Westminster Hall

[Mr Stephen Hepburn (Jarrow) (Lab)]

It is a pleasure to see you in the Chair, Mr Evans.

I thank hon. Members on both sides of the House who are here to push this great case forward. I pay tribute to my hon. Friend the Member for Dudley North (Ian Austin), who organised a very constructive roundtable meeting where we learned a hell of a lot. I also pay tribute to all the campaigners, some of whom are represented today. They fought hard, got the petition organised and had such a loud voice that Parliament has not been able to ignore them.

We are all here because we want Orkambi to be made free on the NHS. It is a drug that works, improves lives and gives hope, so there is no reason why it should not be available. We agree that NICE’s 2016 decision to class Orkambi as not cost-effective for the NHS was wrong. Frankly, the Minister is in a position to get round the table with the drug companies, NICE and the NHS to resolve this and break the deadlock.

[Margaret Greenwood (Wirral West) (Lab)]

My hon. Friend is making a really good speech. A constituent—a proud and loving grandad—came to my surgery with two sets of photographs of his granddaughter, who is nearly six. One photograph was of a lively little girl, full of energy, and the other was of all the medication that she has to take every single day. The imagery could not have been starker. Does my hon. Friend agree that when someone is nearly six, a year is a very long time to wait for change, and the Minister should get a move on?

[Mr Hepburn]

I agree entirely and am pleased my hon. Friend has repeated my earlier plea to the Minister.

It has been said that Orkambi is recognised in a lot of countries—I do not want to go through the list, because there are many. We are getting left behind. Imagine what it is like to be a sufferer and to be told, “There is something out there that will improve your life and your family’s life, but, sorry, it is just not cost-effective.” Imagine how that makes them feel.

I have two constituents down here today: Emma and Chris Corr. They have a three-year-old daughter who has undergone more hospitalisations, more medical treatments and more operations than the vast majority of people will go through in the whole of their lives. All Emma and Chris want is to give their daughter a future and ensure that she is not limited in her life chances. I will be brief, but my plea is to think of the likes of Harriett: let her go to school and get a full-time education, without impediment; let her get qualifications; let her get a job; and let her live a long life. The alternative is unthinkable, whereby Harriett will have a deteriorating lifespan, leading to an early death, which I am sure we would all agree is unacceptable for anyone.

The final decision is with the Minister. I hope he recognises the unity of purpose in the House and acts immediately.