Cystic Fibrosis Drugs: Orkambi

Lord Austin of Dudley Excerpts

Monday 10th June 2019 Westminster Hall

[Ian Austin (Dudley North) (Ind)]

We have been campaigning on this issue for well over four years; I think this is the fifth or sixth debate we have had in this Chamber or the main Chamber. We have met two Prime Ministers, two Health Secretaries and several Health Ministers. We have a new Health Minister with us today. We welcome her to her place, and we hope she will be able to unlock this issue in a way that her predecessors did not. I cannot remember how many cross-party letters we have delivered to Downing Street. There have been countless meetings between MPs, Vertex and the Cystic Fibrosis Trust. However, four years after this drug was licensed, it still is not being made available to the people who need it.

Imagine how many people’s lungs have suffered irreparable damage in that period. Imagine how many people have seen not just the quality but the length of their life reduced over the past four years. I pay tribute to the brilliant people from the Cystic Fibrosis Trust who are with us today: David Ramsden, Nick Medhurst and the brilliant Lynsey Beswick, whom we heard about earlier. Most of all, I pay tribute to the army of parents and carers who work so hard on this issue all year round. We are in this room today because of the inspirational work they do. It is humbling and heartbreaking to meet them and listen to their stories.

I became involved in this issue because I met Carly Jeavons, whom the hon. Member for Sutton and Cheam (Paul Scully) spoke about. She is from Dudley, and she took part in a clinical trial for Orkambi. Before being put on that trial, she had to choose between leaving work, with all the financial hardship that would cause, and struggling on in work with her health getting worse. She had to take 90 tablets and do two hours of physiotherapy a day. Her lung function was 44%. She had to spend two weeks in hospital every three months. That is not an unusual story, by the way, for people with cystic fibrosis.

Carly told me:

“Orkambi has changed my life. I quickly became well enough to start to live a more normal life again as a working mum. My health has remained stable…hospital visits have massively reduced,”

and unplanned admissions are now non-existent. Since she started having Orkambi, she has been able to go on holiday for the first time, she has got married, she has started a family and she has started a business. She makes a much bigger contribution to the economy. People talk about the cost of providing these drugs; what about the contribution that people who are given Orkambi can make to the country and the economy? Let us think about that.

I did not really understand the impact that having a condition such as cystic fibrosis has on the rest of someone’s life. I mentioned Lynsey a moment ago. I hope she does not mind me telling everyone this. She is in her 30s, and she told me that, at a time when her friends are getting married, planning families, developing their careers, starting businesses and making long-term plans, people such as her are deterred from doing those things. It was heartbreaking to listen to her tell me that, so I cannot imagine what it is like for her.

I hope people forgive me for being blunt, but people in Lynsey’s position are just not able to plan for their future in the same way because they do not know how long they have to live. Every day that people who could be helped by Orkambi are denied access to it is another day for which their lungs suffer irreparable damage. It is not like breaking a leg—a leg can be fixed and become normal again, but someone’s lungs will not recover.

I understand that Vertex wants to make a profit. Of course it does, and of course it needs to be able to fund future drug developments. But surely it would make sense to sell a lot of a drug at a slightly lower price than to sell nothing at a really high price. I am not an expert on pharmaceutical company economics, but that seems to me to be worth looking at.

What assessment has the Minister made of the case for Crown use licensing, where the Government take control of the situation and ensure that these drugs are provided? What assessment has she made of the case for the Government providing the cheaper drugs that are available elsewhere? It is a disgrace that families have to buy them from Argentina.

The Minister is new to the Department, and we really hope she will work night and day to get this sorted out. She should get NHS England, NICE and Vertex in a room and not let them out until they have come to an agreement. That is what we need to happen. Will she also meet the cross-party group of MPs who have been working on this issue, and the parents and the Cystic Fibrosis Trust, so we can discuss it in more detail than we are able to this afternoon?

The situation is urgent. The system has not worked. People with cystic fibrosis have been put in an appalling position. This really does need to be sorted out now.