Cystic Fibrosis Drugs: Orkambi DebateFull Debate: Read Full Debate
Jim ShannonMP Main Page: Jim Shannon (Democratic Unionist Party - Strangford)
Department Debates - View all Jim Shannon's debates with the Department of Health and Social Care
(1 year ago)Westminster Hall
It is a pleasure to serve under your chairmanship, Mr Hanson. I add my thanks to the hon. Member for Sutton and Cheam (Paul Scully) for securing this debate.
I will focus on two key things: asking the Minister a series of questions on potential remedies for this situation, but also using my time to speak about Rachael and Ethan, a mother and child in my constituency who are forced to live with the realities of cystic fibrosis every day, and the adverse impact that the actions of the company Vertex are having on their lives. Ethan is 11 years old. He has a big smile and loves pizza, trampolining and spending time with his friends, but sadly that is where the similarity to other 11-year-olds ends, since every day his life and that of his mum Rachael are dominated by the strain of dealing with cystic fibrosis.
To put this in context, because his lung function has declined to just 54%, in the past four weeks alone Ethan has coped with two separate full-day hospital admissions, 14 days of intravenous antibiotics, which are administered by his mum twice a day at home and take 45 minutes each time, and two sessions with a psychologist to help him to overcome needle phobia brought about by years of blood tests. All that is on top of his regular daily cocktail of medication and a physio session of a minimum of 22 minutes every day. Yet none of those treatments are designed to cure Ethan. They are simply designed to treat his symptoms—symptoms that are expected to get worse the older he gets. They attempt to slow down the irreversible lung damage that will slowly cause him to suffocate. He knows that. In 2017, half of all people who died with cystic fibrosis were under the age of 31, as has already been stated. It is a statistic that his mum Rachael is only too aware of as she spends the majority of her time caring for her son.
We know that Vertex drugs could change the lives of cystic fibrosis sufferers and their families, since they fix the underlying genetic mutations that cause the condition, but, as we have heard today, Vertex is more interested in 45% investor returns than in 20%. That seems to be its priority. Although the chronic underfunding of the NHS is a contributing factor in this story, it is by no means the only reason why a deal has not been reached. The unforgivable actions of Vertex Pharmaceuticals, which admittedly does important work in research and development relating to the treatment of cystic fibrosis, mean that it continues to put patients’ lives at risk as it seeks to extract the highest possible price from our NHS. When Alexander Fleming created penicillin, he had it publicly patented so that it was accessible to all, and it became a revolution in modern medicine. Should we not be legislating for pharmaceutical companies to do something similar and put patients, not profits, at the centre of their development?
I have a number of questions for the Minister. How do we approach this matter systematically, so that we are not back here time and time again, as we have heard? The reality is that we have a socialised—dare I say socialist—healthcare system, which treats people’s health on a collective basis, based not on their ability to pay, but on their need. That is quite revolutionary. However, that healthcare system operates in an international pharmaceutical industry based on rapacious profiteering. How do we square that circle? I suggest the answer lies at the European level, not the US level. Ultimately, the EU’s being one of the biggest healthcare markets in the world gives the European Union immense clout in imposing its will on international pharmaceutical companies; that is one of the reasons I want to stay in it.
My other question is a philosophical one: what is a fair price for years of investment and research? Who determines what is a fair price—our collective democracies, which enable these companies to exist, or a handful of corporate executives whose primary motivation is to maximise profit? Who determines that price? At the moment, I do not think that the balance is correct.
Finally, has the Minister considered the use of compulsory licensing, allowing a UK company or other company to make cheap generic copies? That is allowed under World Trade Organisation rules; the definition of an emergency is up to the host country that needs to use it, and from initial research it is something that could be used and has been used before. I know that is not something she would want to do initially, but ultimately, would she consider it if Vertex refuses to move?
I will leave hon. Members with a quote from Ethan, who had his 11th birthday on 5 June. He said:
“I want to live a long life, because then I get to see some things and do things, so please fund The Triple”.
When we have the most senior civil servant in Northern Ireland, along with NHS England and virtually everyone else who has any dealings with the issue, saying, “Look, we need action, we are powerless to move,” does that not throw the ball firmly back into the Government’s court to resolve the matter with the company?
The previous Chair set a time limit on speeches of six minutes, which has been successful, in that all right hon. and hon. Members have been able to take part in the debate, but it leaves us with a maximum of one hour and 10 minutes for the Front-Bench speakers to respond. Front-Bench speakers, who have more than the normal 10 minutes, can be more flexible and take interventions should they so wish.
The other point I wish to make is that because the winding-up speeches have started early, some Members who have spoken in the debate are not present for these speeches and they should be. If you are watching on television, please return to the Chamber now. This is an important debate; you have contributed to it and you should be present for the Front-Bench responses.
Break in Debate
I will talk about the interim measures, but I think the more important thing that we need to grip is having a permanent solution for everybody living with cystic fibrosis.
Throughout the negotiations, which are rightly being led by NHS England, the Government have been crystal clear that Vertex must re-engage with the NICE process. I know that hon. Members have questions about that process, and I will try to address some of the points that have been raised. The hon. Member for York Central (Rachael Maskell) raised more detailed points for me to consider; if I do not address them, I will write to her with more detail, but there are some points about the NICE process that I will address later in my remarks.
I shall turn later in my speech to that specific avenue that some sufferers have gone down.