Cystic Fibrosis Drugs: Orkambi Debate

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Department: Department of Health and Social Care

Cystic Fibrosis Drugs: Orkambi
Clive Lewis Excerpts
Monday 10th June 2019

(1 year ago)

Westminster Hall
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Department of Health and Social Care
Karl Turner Portrait Karl Turner (Kingston upon Hull East) (Lab) - Hansard
10 Jun 2019, 6:07 p.m.

It is a pleasure to see you in the Chair, Mr Hanson. I am grateful to be called to speak in this incredibly important debate on behalf of my young constituent, Oliver Ward, who is seven years of age. I raised the issue in Prime Minister’s questions last week, and I intend, if I get the opportunity, to raise it with the Prime Minister again before she leaves No. 10 Downing Street.

I want to pay tribute to Oliver and to his mum, Emma Gadie, who has campaigned tirelessly on CF. In particular, she has raised the issue of the battle with Vertex for Orkambi. She says her little boy is her hero, and has described his daily routine, which includes taking up to 23 pills a day, and having incredibly rigorous physio just to be as normal as he can be during the day.

It seems to me that the situation is a perfect example of predatory capitalism. Vertex has a turnover of $45 billion, and the chief executive rakes in something of the order of £15 million a year—I think I am right in saying that he has £100 million in share sales to his name—and yet he is holding the NHS to ransom. People are literally dying while the business behaves in an intolerable way. I saw a tweet recently in which Vertex was celebrating its 30th birthday, but some sufferers do not make it beyond 31. It is utterly despicable. I try to be non-partisan and non-party political about it, but it is about time the Secretary of State got into a room with Vertex, NHS England and NICE and sorted it out.

The Prime Minister said on 16 May last year that she expected a “speedy resolution” to the situation. Frankly, the Secretary of State, the right hon. Member for West Suffolk (Matt Hancock), should spend more time sorting out this incredibly important issue than travelling around the country trying to ingratiate himself with Tory party members in order to get himself into 10 Downing Street. This is appalling. It is not going away—hon. Members on both sides of this House are not going to let it go away—and the Minister must take action following this debate.

Clive Lewis Portrait Clive Lewis (Norwich South) (Lab) - Hansard
10 Jun 2019, 6:10 p.m.

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”.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP) - Hansard
10 Jun 2019, 6:15 p.m.

I congratulate the hon. Member for Sutton and Cheam (Paul Scully) on setting the scene so well for us, and all the right hon. and hon. Members who have made such fantastic contributions on a subject in which we all have a deep interest.

This is an issue that I have spoken on many times in this Chamber and indeed outside it. I have received emails from constituents with photos of their children, begging me to do something to give these precious little ones a better quality of life. If ever we needed to be reminded of the importance of this for the children, as every hon. Member has said, that is such a reminder.

Let us be clear: cystic fibrosis is not only, tragically, a life-limiting disease, but a disease that massively impacts on the quality of life and the life experiences of the sufferers and their families, because the families live the children’s tragedy as well. Cystic fibrosis is one of the UK’s most common life-threatening inherited diseases. It is caused by a defective gene carried by one person in 25, usually without their knowing it. That is more than 2 million people in the UK, and if two carriers have a baby, the child has a one in four chance of having cystic fibrosis.

Around 10,400 people in the UK have cystic fibrosis; that is one in every 2,500 babies born. It affects some 100,000 people in the world. According to the most recent report from the UK Cystic Fibrosis Registry, based on people with CF who were recorded as alive from 2013 to 2017, half of people born with cystic fibrosis in 2017 were expected to live to at least 47, but the 132 people with CF who died in 2017 had a median age of 31. That is a massive difference and we cannot ignore it.

Parents are begging me, begging us, begging this House to ensure that those years are of the best possible quality. After numerous trials, some carried out with Northern Ireland constituents, Orkambi seems to be a drug that does exactly that for many people—enabling the best possible quality of life. My most recent correspondence from Richard Pengelly, the permanent secretary for health in Northern Ireland, outlined clearly that he does not have the power to do what we all need him to do and what he wants to do:

“Let me say that I share your disappointment that the progress in making this drug more widely available has not advanced as we had hoped. At the heart of this matter is the inability of the manufacturer Vertex to come to agreement with the relevant UK Health Technology Assessment bodies.”

Break in Debate

Seema Kennedy Hansard
10 Jun 2019, 6:52 p.m.

My hon. Friend makes a very good point. Members from across the House have told very moving stories of their constituents, the lives they lead, and the stresses and the strains put on them by the lack of an agreement on this matter. However, other drug companies are developing medications for rare diseases, and agreements have been reached on those. I will turn to them very shortly.

We can look at what happened in Spain earlier this year, when Vertex did not accept the terms of Spain’s health outcome-related proposal. The Spanish proposal, which is similar to the recent NHS England offer, is based on the ongoing collection and interpretation of real world data. Why is that not acceptable to Vertex? I also note that dialogue between Spain and Vertex has been ongoing for three years, which is similar to the situation here in England.

We will never walk away, but Vertex must now agree to engage with NICE and we urge it to accept all the flexibilities that NHS England has put on the table. There is nothing unusual about Vertex that means that this is not the right thing for it to do. Recently, we have seen deals reached as part of the NICE appraisal process, including that for ocrelizumab, which is an innovative multiple sclerosis drug, that for Spinraza, which is for people with spinal muscular atrophy, and that for axicabtagene ciloleucel chimeric antigen receptor t cell, or CAR-T, treatments.

Given that Vertex remains an extreme outlier in both pricing and behaviour, it is no wonder that patients and families have been looking at alternative solutions to secure access to this drug, and we have heard about the buyers’ club. Hon. Members have also talked about Crown use licensing, and the hon. Member for Bristol East (Kerry McCarthy) talked about large-scale clinical trials.

Unless Vertex changes its approach and behaves responsibly, I have a moral obligation to look at these other options. Of course NHS England and NICE will carry on the negotiations, because a negotiated outcome is the desired option. However, I have no alternative but to look at these other options on the table.

Clive Lewis Portrait Clive Lewis - Hansard
10 Jun 2019, 6:53 p.m.

I thank the Minister for giving way. I raised the issue of compulsory licensing, which the Government have within their armoury. Of course it would be a measure of last resort, but given that we are dealing with people’s lives, the quality of their lives and a company that is quite simply being intransigent, and greedy, surely that option should be considered. That would send a message to those pharmaceutical companies—that global pharma industry—that if they are going to be greedy and put people’s lives at risk, despite being made fair offers, this option could be used by our Government.

Seema Kennedy Hansard
10 Jun 2019, 6:53 p.m.

I thank the hon. Gentleman for his intervention. As my hon. Friend the Member for Sutton and Cheam said in his opening speech, which was very well made, we recognise the importance of British pharmaceutical companies and that companies invest hugely in developing new drugs. However, as the other examples of drugs for rare diseases that I have given show, it is possible to go through the NICE appraisal process and reach an agreement with NHS England. As one hon. Member who is no longer in their place said, this is an offer for a long-term agreement.

Vertex is an outlier, and I would like to put that on the record.