Orkambi and Cystic Fibrosis

Debate between Lord Austin of Dudley and Alison McGovern

Monday 19th March 2018 Westminster Hall

[Ian Austin]

That is a really important point and one that I hope the Minister will take into account. We should be looking not just at the cost of providing Orkambi, but at the savings that that would make in other areas. I want to develop that point in a few minutes.

What I did not understand before speaking to people with cystic fibrosis was the toll that not knowing whether they will be given these life-saving drugs takes on their mental health. I am talking about the worry that it causes them and their families and the stress and fear that it puts them through. Something else that I did not understand before meeting Carly was the impact that having a condition that reduces life expectancy has on the rest of someone’s life. Lynsey Beswick, who many hon. Members will recall was at the roundtable a few weeks ago, explained that very well. She is in her 30s and told me that, at a time when her friends are getting married, planning families, developing their careers and starting businesses—making long-term plans—people such as her are deterred from doing those things. They just cannot plan for their futures in the same way because, to put it bluntly, they do not know how long they have to live.

Since having Orkambi, Carly has been able to go on holiday abroad for the first time with her family. She has married. She has started a business. Let us think about that. She has started a business, so she is employing people and making a much bigger contribution to the economy. People talk in these debates about the cost of providing these drugs. Let us talk also about the contribution that people who are given Orkambi can make to society. Let us think not just about the cost, but about the contribution they make, the businesses they can start, the jobs they can create and the taxes that will be paid. Let us think about that as well. Let us think about the contribution that providing Orkambi can make to our economy.

What is worse, the longer people live without access to drugs such as Orkambi—I had not really appreciated this—the worse their lungs become. Every day that access to this drug is delayed is another day on which the lungs of people with cystic fibrosis are damaged. I want to repeat that point, because I really want people to think about this: every day that people who could be helped by Orkambi are denied it is another day on which their lungs suffer irreparable damage.

That damage will not be put right. It is not like some medical conditions whereby the patient is given a drug and they are cured, restored and put back to how they were originally. That is not the case here. That damage will not be put right when—or if—they eventually get this drug. The damage that has been done is permanent. Every day this treatment is delayed limits the lives of people it could help. I really want the Minister and others to understand that point, because I must confess that I had not fully understood it until I chaired that roundtable with the Cystic Fibrosis Trust and Vertex a few weeks ago.

[Alison McGovern (Wirral South) (Lab)]

My hon. Friend is making a brilliant and important speech. I am here because of my constituent Ava and her family. Ava loves horse riding and her family want her to have the opportunity to live her life as an ordinary, healthy seven-year-old. That is all they want. Orkambi could provide her with that opportunity. Is not it people such as Ava and the people my hon. Friend has mentioned whom we have to keep at the forefront of our minds?

[Ian Austin]

My hon. Friend is completely right. This is what politics is about. What are we here for? We are here to listen to people in our constituencies. It is our job to come here and speak up on their behalf, which is exactly what she has just done.

I want the Minister to look really carefully at the way in which NICE works. This is not a criticism of NICE, the Government or anyone else, but new drugs are being developed and technological changes are happening so rapidly that I want to ask whether the way in which drugs are assessed, licensed and approved still works. My central question is: how are Ministers going to ensure that these ground-breaking drugs and new developments are made available much quicker?

In 2016, NICE was not able to recommend the use of Orkambi due to uncertainty about its long-term value, impact and cost-effectiveness. Vertex submitted a fresh proposal last month. On Friday, NHS England said:

“Following advice from Nice, the NHS has asked this particular drug company to review its proposed pricing. Unless this happens, further progress at this time is frankly unlikely.”

What sort of hope does a blunt statement such as “frankly unlikely” give people with cystic fibrosis? How does it give us any confidence that new drugs such as Symdeko, which is due to have its marketing authorisation confirmed by the European Medicines Agency in the coming works, will be approved as well?

National Health Service

Debate between Lord Austin of Dudley and Alison McGovern

Wednesday 21st January 2015 Commons Chamber

[Alison McGovern (Wirral South) (Lab)]

It is a pleasure to follow the hon. Member for Stevenage (Stephen McPartland). I listened carefully to his speech. He has very good taste in one respect—the football team that he supports. Although he praised the NHS staff—of course, the NHS staff I represent and speak to work incredibly hard; I pay tribute to them—in almost everything else he said, he could not recognise the glaring fact of the reorganisation being the root cause of some of the problems that we are seeing, and he was wrong in his assessment of the shadow Secretary of State’s contribution. The NHS is an extraordinarily important issue to us all. Opposition Members show great passion, as the hon. Gentleman did, and we would all pay tribute to the hard work of NHS staff. There is no difference between us on that point.

I commend the speech by my right hon. Friend the Member for Kingston upon Hull West and Hessle (Alan Johnson), who is not in his place at this moment. I was particularly moved by his recounting of the experience of his constituents—teenage girls suffering from mental health conditions. It is what the House of Commons should be there for, to allow us to hear his constituents’ voices in that way. I would hope that, in our debates on mental health, we can do much more to bring those problems in our system to the fore.

I want to talk about what I see as three possible solutions to the current difficulties and crises in the NHS.

[Ian Austin (Dudley North) (Lab)]

Vote Labour, vote Labour, vote Labour.

[Alison McGovern]

My hon. Friend makes an excellent point, but I want to outline some of the specifics that might be entailed by that position. I want to talk about three elements of changing the NHS that I take to be very important. One of them is pretty parochial, but the other two are terribly important for our whole country.

The first concerns a walk-in centre in my constituency. Not everybody in the House will be an expert on the geography of Merseyside and, specifically, the Wirral, though I know that everybody will appreciate how important it is that they learn about it. In my part of the world, our local hospital is quite far from those of us in south Wirral. There was a hospital in south Wirral called Clatterbridge hospital, which I was born in. Its emergency facilities closed many years ago; I think that I was almost one of the last babies to be born there. Services were moved up to Arrowe Park on the border of the Birkenhead and Wirral West constituencies. I well remember, when I was young, how far away Arrowe Park felt and, when members of our family were ill, what a long distance it seemed when getting there.

Under the previous Labour Government, with my predecessor’s support, Eastham walk-in centre was opened in south Wirral, near the Cheshire border. That walk-in centre has been a rip-roaring success. It treats people effectively. They can turn up at hours that are convenient, such as out-of-work hours. It is open at the weekends and until 8 o’clock at night on a weekday. I declare an interest as a parent of a young child who always seems to manage to get herself unwell at the most inconvenient times. Eastham walk-in centre has been there for us, and my constituents value it greatly.

Under the reorganisation, the new clinical commissioning group took over. In Wirral, we had a bizarrely complex structure of three federated CCGs for a population of about 350,000. Having three CCGs in Wirral was total madness. Twenty-five million quid was wasted on a reorganisation that nobody wanted and nobody voted for. The first thing the CCG wanted to look at was urgent care, and it put our walk-in centre under threat of closure. This is an incredibly important facility to the people of south Wirral. It brings the NHS to their doorstep. It totally changed the availability of out-of-hours facilities for people in my constituency. The CCG, in its lack of wisdom, thought it was just fine to say, “We’re not sure we need that. We can re-provide those services at GP surgeries, never mind whether they are open at a convenient time.”

The CCG never went through with those proposals, and rightly so. Since then, however, there has been a constant threat and a worry in my mind about Eastham walk-in centre. I want to make it clear to the Minister that if there is any risk at all of that walk-in centre closing, he will receive representations from me pretty quickly, because it is an absolutely vital service. Unless we again conceive of the NHS as being there for patients and the public first and think about how to bring these facilities close to people, we will never get an efficient and effective service fit for the next generation. Walk-in centres are absolutely vital. It sends a chill down my spine to hear the shadow Secretary of State say that one in four has closed; if anything, we should be opening more.

Secondly, I want to talk about social care and older people. We all know that we have the benefit of an ageing population in our country. With an older population, we will have a more experienced and expert population. I take it to be a good thing that people’s grandparents and valued members of their family are living longer, but with that comes a responsibility to look after them properly.

I ask Ministers what has happened to the better care fund. What evidence is there that it has been used to find solutions that are really working? All I see on my patch is council cuts and then the consequences turning up at the door of the hospital. Older, more seriously ill people in our community are turning up at A and E, with the distress to them of being there, the consequential responsibility on staff and the worry for families as people lie on trolleys.

We need a much more radical approach. Integration is clearly the answer, but I would like us to go further: I want us to truly address the work force issues in social care. It is not good enough that poverty pay is endemic among those who look after the most senior members of our community. That is not acceptable; nor is the zero-hours culture. We once had that problem in child care, but as a country we took on the responsibility of changing the culture in the work force for the good of our children, and we must do the same for the benefit of our older people.

I will not speak for much longer, Mr Deputy Speaker, but I want to say something about mental health, which should be part of the strategic approach that we must take to change the NHS for the benefit of the next generation. Parity of esteem is of course correct and absolutely right. I take it that there is now cross-party consensus on that issue and that everyone in the House thinks that we should treat mental health as seriously as we do physical health, with no barriers to getting proper treatment. However, I want us to do something else: we need to recognise the interconnected nature of physical health and mental health. It is not just that we also need to treat mental health, but that if we sort out people’s mental health issues and conditions and empower them to live better and happier lives, they will have better physical health and will make better use of the NHS’s scarce resources.