Access to Orkambi

Mike Penning Excerpts

Tuesday 17th July 2018 Commons Chamber

[Mr Lewis]

I think that, in this context, we can all unite behind the concept that we want a resolution that is UK-wide if at all possible. Clearly, that would require different organisations to be involved, but if we can set a precedent here, we could make rapid progress, and that can only help all parts of the United Kingdom. May I make some progress, and then I will give way to other hon. Members?

All of us who have the privilege of serving in this House are mothers or fathers, brothers or sisters, grandparents, uncles or aunts, godparents, friends or neighbours. It could very easily be one of our family members or friends who is diagnosed with cystic fibrosis at birth and who struggles with a life of perpetual illness, frequent hospitalisation and a daily multitude of drugs. Worse still, they could be living with the fear of premature death at an age when many young people are getting married, starting a family or taking their career to a new level.

I ask hon. Members to imagine that their family member or friend was denied access to a drug that could improve their quality of life and prolong their life for many years—a drug that was readily available in 12 other countries. No one in this Chamber today would accept no for an answer, or remain silent as the NHS and a major drugs company traded increasingly public blows as to who is to blame for unnecessary suffering and potential loss of life. If the situation is not good enough for our loved ones, it should not be good enough for anybody else’s.

I first became aware of Orkambi when a young constituent from Prestwich attended my constituency surgery with her mother. Many Members will have met constituents in a similar situation. Alex Darkin is 10 years old and suffers from cystic fibrosis. She is a remarkable girl, whose courage and positivity are truly inspirational. Alex started this year with 80% lung function—a number that scared her mother, Emma, because Alex’s lung function was over 100% a few months previously. These days, Emma would give anything to see the number 80 again. Alex’s lung function continues to drop and is now around the 54% to 56% mark.

Alex has physio and takes a large amount of medication just to manage her condition. She brought all that medication to my surgery and I found myself looking at a young person who has to go through the routine of taking that medication every day; that, in itself, is a massive challenge. Alex has intravenous antibiotics every three months, and her daily life is inevitably dominated by her drug and physiotherapy regime. Very sadly, she now has irreparable lung damage. A consultant recently advised that doctors are running out of options with regard to medication, and explained that if Alex were a year older her parents would be able to apply for Orkambi on compassionate grounds, as her lung function had deteriorated more than 25% in less than three months. Emma and Alex contacted me because they could not afford to wait another year to get this drug on compassionate grounds. Surely a truly compassionate society would ensure that this drug was available to all who needed it.

[Sir Mike Penning (Hemel Hempstead) (Con)]

I congratulate the hon. Gentleman on securing this debate. I think that we all tried to get this debate, which is why we are all here. One of the reasons I said to Mr Speaker earlier that I was not happy was that I wanted us to get on to this debate. We have all heard stories in our constituencies, as I am sure you have, Madam Deputy Speaker. As a country of this wealth, we should be ashamed. People in countries with nowhere near the wealth of this country have been given these drugs to improve their quality of life. We are here to right that shame.

[Mr Lewis]

The right hon. Gentleman speaks for everybody present this evening and probably many who are not.

There is inevitably sadness, but there should be real anger because this situation is causing human misery to many people who have enough challenges in their lives without not being able to resolve this situation. It would not be right for any of us to pretend that these decisions are easy. NICE does a good job in very challenging circumstances, on the whole. In no way should we or do we seek to undermine its work.

--- Later in debate ---

[Ian Austin]

I am very grateful. This is a really frustrating process, and the Government have to find a way of bringing it to a conclusion. I agree that NHS England and Vertex have to get back into negotiations, which should not stop until this is resolved. Does my hon. Friend agree that it might be an idea for the Secretary of State to get Sir Simon Stevens and Jeff Leiden, the chief executive of Vertex, in a room—

[Sir Mike Penning]

And lock the door.

[Ian Austin]

The right hon. Gentleman could lock the door, but first he has to get them in there so that negotiations resume and are not concluded until they resolve this issue, because it really does have to be sorted out.

On that point, does my hon. Friend agree that it was worrying to read the word “final” in NHS England’s response to Vertex yesterday? It cannot be final. I really hope the Minister is listening to this. [Interruption.] The word “final” was in there. [Interruption.] Well, he is the Minister. The word “final” cannot be used until it is finally resolved. That is when it will be final.