Orkambi and Cystic Fibrosis

Ivan Lewis Excerpts

Monday 19th March 2018 Westminster Hall

[Mr Ivan Lewis (Bury South) (Ind)]

It is always good to see you in the Chair, Sir Roger.

I congratulate the hon. Member for Sutton and Cheam (Paul Scully) not only on securing this important debate but on his excellent opening contribution. I also pay tribute to my hon. Friend the Member for Dudley North (Ian Austin) for his work on this issue over a long period. Most of all, like other hon. Members, I thank the Cystic Fibrosis Trust—families up and down the country have come together in such a passionate and effective way to ensure that this House takes this life-and-death issue as seriously as it needs to be taken.

At the outset I want to acknowledge that it is entirely right that we have in place a system to determine objectively the effectiveness and relative value for money of new drugs. That is a policy area in which we should seek maximum consensus across the political divide in the national interest and in the long-term interests of patients and their carers. NICE does a difficult job in very challenging circumstances, and in no way should we or do we seek to undermine its work. However, any system of that nature can get it wrong or delay decisions when there is no time to waste, whether through pressure of work, changing evidence or, on occasion, a lack of nimbleness and flexibility. Sometimes pharma companies seek unreasonable commercial arrangements that have to be challenged—I am not saying that that is so in this case, but it is important for us to understand that that happens and that we always have a responsibility to ensure that we get fair value for money.

The present system truly has insufficient flexibility to take account of the true benefits of a portfolio approach. As other hon. Members have said—we can judge this from their contributions today—we may be politicians, but we are also citizens, whose human instincts are to speak up for people with life-threatening and life-limiting conditions. In any such debate, we should ask the question, what support would we expect if a member of our family or close personal friend were denied life-enhancing or saving treatment? We would not want to listen to arguments for why that was simply not possible.

I first became aware of Orkambi as an issue when a young constituent and her mother came to my constituency surgery. Alex is 10 years old and suffers from cystic fibrosis. She is a remarkable girl, whose courage and positivity are truly inspirational—that would apply to many of the young people we are here to talk about today. However, this case is perhaps a graphic example of what can happen very quickly. Alex started this year with 80% lung function, a number that at the time, understandably, scared her mother, Emma, because a few months previously it was at more than 100%. Now, Emma would give anything to see the number 80 again. Alex’s lung function continues to drop and is now at around the 54% to 56% mark.

Alex has physio and takes a large amount of medication just to manage the condition, including intravenous antibiotics every three months. Similar to what other hon. Members have rightly described, her daily life is inevitably dominated by her drug and physio regime. That is a quality-of-life issue on a day-to-day basis, as well as a health issue. Sadly, Alex now has irreparable lung damage. Recently, Alex’s consultant advised that they are running out of options with regard to the medication, explaining that had Alex been a year older—this demonstrates how random some of the decisions can be—her parents would be able to apply for Orkambi on compassionate grounds, because her lung function had deteriorated by more than 25% in less than three months. Compassionate use in the UK is used only when a patient is extremely ill, however, and NICE is not scheduled to look at Orkambi again until July 2019. But we now know that early use enables better management of the condition and reduces further complications. Emma and Alex contacted me because they cannot afford to wait another year to get the drug on compassionate grounds.

I say to the Minister and others that we talk a lot about the centrality of prevention and early intervention but in reality, when we make decisions such as this one, we do the opposite, and when public services face the kind of financial pressures that they face these days—whether that is local government services or the NHS—they resort to fulfilling core functions, statutory functions. In the real world, it is almost nonsense to talk about a shift to prevention and early intervention. This is an example of where that is crucial, in a very direct way.

Emma is understandably frustrated. Her daughter has spent her entire life fighting to stay well, and now she has to fight for a drug that could help her to feel better. For Alex, as I said, Orkambi would mean a slowing in the decline of her lung function, giving her control of her condition and a better quality of life. As Emma, her mum, movingly said:

“Alex has a real love for life and all she wants to do is live a long and happy life without having to fight to breathe.”

I would say this about disabled children and their families more generally. I coined a phrase: why do we have to constantly fight the system when we should have a right to have a system that is on our side. I have been involved in working with disabled people for about 35 or 40 years, and I am sad to say that that is the reality for most families with disabled children today. It has been the reality under successive Governments, although we tried to improve investment. We certainly made progress on stigma and in recognising that disabled children should have the right to fulfil their potential and to be treated like any other child, for example, but the constant battle every single day—when, frankly, people have enough to cope with, whether as a child or as a family—is something we should all reflect on.

Along with other hon. Members, I strongly support the call for NHS England to engage in a meaningful dialogue with the drug company and to reach a fair settlement. Having sat in the Minister’s place, I can predict that officials will say, and this is not a criticism of the officials, that we should stay out of this; that it is not a matter for Ministers; that there should not be political interference; that we have a robust system that exists and is in place; and that we should let that system run its course. Ministers may end up allowing human emotion or politics and pressure from hon. Members to influence them to make decisions that are not always consistent with what the Department wants them to make. I say to the Minister that that is nonsense. Ministers have a duty to intervene in circumstances such as this, to be a facilitator and a convener, and to bring those parties round the table and say that it is not acceptable for this situation to remain unresolved for much longer.

My hon. Friend the Member for Bury North (James Frith) said that we do not want to be back here in six months’ time, having a debate such as this one in exactly the same circumstances. Many countries around the world have reached a different conclusion and have made a different decision. Obviously, they believe that this drug makes a massive difference from a health and quality of life point of view, and that it is economically effective. I ask the Minister to please use his convening powers, his accountability to Parliament, and the desires and the will of parliamentarians as expressed today, to apply immediate pressure to the relevant parties.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Steve Brine)]

It is a pleasure to serve under your chairmanship, and that of Mr Evans, Sir Roger. May I be the final speaker to thank my hon. Friend the Member for Sutton and Cheam (Paul Scully), who has done his job as a member of the Petitions Committee in introducing the debate on the petition today. As the hon. Member for Washington and Sunderland West (Mrs Hodgson) said, the number of Back-Bench MPs who have spoken is 22. My Parliamentary Private Secretary reckons that we have had 60 Members through the Chamber in the past three hours. Of course that is only just over 9% of MPs, but, as we all know, having been to many Westminster Hall debates between us, that is a lot of MPs in one debate. That did not even include the hon. Member for Strangford (Jim Shannon)—I am worried for him. As we know, so many MPs attending the debate suggests a great deal of interest in the subject, and the way everyone spoke was excellent. Perhaps I may mention that the speech of the hon. Member for Motherwell and Wishaw (Marion Fellows) cannot have been an easy one to make, and she delivered it with grace.

With more than 115,000 signatures—my goodness—the petition shows what huge public support there is for tackling this terrible disease. The passionate way in which hon. Members across the board have spoken on behalf of their constituents is testament to that support. I want to make a special mention of the “Bury brothers”, who represent the 202 people in the Bury constituencies who signed the petition: the hon. Members for Bury North (James Frith) and for Bury South (Mr Lewis) both spoke well and in a sensible and balanced way. I can only assume that the hon. Member for Bury South, from what he said, must be a former Health Minister. Am I right?

[Mr Lewis]

indicated assent.

[Steve Brine]

I thank 163 of my own constituents who signed the petition and who have been in touch with me, and one who has been to my constituency surgery. I may be the Health Minister responding to the debate, but I am also a constituency MP and a parent of two young children.

I pay tribute to the Cystic Fibrosis Trust, which does a tremendous job on behalf of all our constituents. I know we are not meant to address the Gallery. I will not do so, but if I did I would thank those who have made the trip in the snow and ice, probably not all from SW1, to come to Westminster today. It is a credit to them that they have made time to do that.

I recognise the progress that Vertex has made to date in its mission—I believe it is a mission—to discover ultimately a cure for cystic fibrosis, and recognise the treatments that it brings to the market. I know Vertex understands the importance of the UK market, and NHS England as a customer, to its future and to that mission.

This petition is calling on the British Government—that would be me—

“to call for a resolution to ongoing negotiations between Vertex Pharmaceuticals, NHS England and NICE as a matter of the utmost urgency. It is essential that a fair and sustainable agreement is found.”

I am here today to do exactly that. It is not a difficult call to agree to. The negotiations must remain constructive and be undertaken with the utmost urgency, for all the reasons we have heard—I will not repeat them all—or, as my hon. Friend the Member for Mid Dorset and North Poole (Michael Tomlinson) said, people living with cystic fibrosis will suffer.

It seems to me that the main ask I have heard from pretty much every hon. Member speaking today is, “Get involved.” I am not the Minister directly responsible. That falls to Lord O’Shaughnessy, the Parliamentary Under-Secretary who sits in the other place, but I can say on his behalf and on mine that we are involved, and you can bet your life that we will continue to be involved. I do not think I can be clearer.