Cystic Fibrosis Drugs: Orkambi
Debate between Anneliese Dodds and Paul Scully(5 years, 6 months ago)
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Paul Scully
The hon. Gentleman has absolutely nailed it. That is very much the point. This is about human beings, and we are dangling something in front of them that they just cannot access. The fact that people go off to Argentina and spend their own money to get the drug is ridiculous. That is a really important point.
Paul Scully
I will make two more points about mental health, and then I will let someone else intervene.
As I said earlier, Oli Rayner said that he effectively spent 10 years preparing to die. He even cold-called a vicar to plan his own funeral. He is now 43 and has a relatively clean bill of health after having a lung transplant. It is outrageous that he had to do that.
I want to raise with the Minister the case of Carlie Pleasant, who ironically works for the NHS. She has CF and has had to go to the hospital a number of times. Her HR manager has told her that she has had too many days off sick, and that she has reached the trigger point. Basically, she has been told that she may be able to make up for it if she is not off for the next couple of months. She has a husband and a young child, she is running a home and she is trying to keep her job and pay her mortgage. How much pressure does that put on her mental health?
There must be thousands of sufferers in a similar situation across the country. We are talking about a life-saving, quality-of-life drug. When we, and especially the Government, try to ensure parity of esteem between mental and physical health, we must all ensure that that balance is reflected not just by treatments but by everybody in the health system and every employer.
Anneliese Dodds
I am very grateful indeed to the hon. Gentleman for giving way. He is making a very persuasive case, and it is obviously supported by many of us. Returning briefly to his point about buyers’ clubs, he will be aware that many sufferers and their families have already made significant financial contributions to CF research. The Oxford group, made up mainly of parents and grandparents of people with CF, has raised more than £174,000 for research just since 2003. They are obviously very upset at the current impasse, as they have made that contribution and they now feel that they have to do it again through buyers’ groups. Does the hon. Gentleman agree that that is totally unacceptable?
Paul Scully
The hon. Lady is right. The fact that people have to resort to such things is ridiculous given that we have a comprehensive health system. It is about time Vertex recognised that there is plenty of time for it to make a reasonable profit on its drugs portfolio. It is not helping the situation. There are a number of people from the Cystic Fibrosis Trust in the Public Gallery, but unfortunately, as the hon. Member for Bury North (James Frith) said, many sufferers cannot be here because of the danger of cross-infection. They are hopefully watching the debate on television or on their computers.