Oral Answers to Questions

Lord Austin of Dudley Excerpts

Tuesday 19th June 2018 Commons Chamber

[Mr Hunt]

My hon. Friend is very knowledgeable about that area. We have announced the creation of a set of digital innovation hubs, and perhaps we can broaden those to turn them into the hubs that he thinks would be a good idea.

[Ian Austin (Dudley North) (Lab)]

Getting new drugs approved more quickly would not just be a big boost for the life sciences and medical research sectors, but would help my constituents and others across the country with cystic fibrosis who desperately need access to Orkambi. They have been waiting for years; it is not good enough. Why can the Secretary of State not sort this out, get a grip, get his officials and Vertex in a room, and force them to come to an agreement? People have waited too long for this.

[Mr Hunt]

That is exactly what we have been doing, but we need Vertex to be reasonable regarding the price that it offers the NHS. We need to pay fair prices. We have heard that it will be coming back with a new offer next week—we hope it is a reasonable one—but we urge Vertex to waive commercial confidentiality so that we can all see, in the interests of transparency, the kind of prices it is trying to charge the NHS.

 Orkambi and Cystic Fibrosis

Lord Austin of Dudley Excerpts

Monday 19th March 2018 Westminster Hall

[Paul Scully]

I will come back to that important point in just one second. We were talking about the campaign being brought together, and I want to pay tribute to the hon. Member for Dudley North (Ian Austin), who has done a fantastic job in raising the profile of cystic fibrosis. I am sorry that I was not able to be at the roundtable that he hosted—I was out of the country—but 41 Members were there who were keen to learn more about this. That is because of his efforts and the efforts of the petitioners, and that is absolutely to be welcomed.

[Ian Austin (Dudley North) (Lab)]

That is very generous of the hon. Gentleman, and I am grateful, but the credit is due not to me but to the fantastic campaigning of the Cystic Fibrosis Trust, the army of people around the country who have this condition and their families. Let us be honest: that is why there are so many Members in the Chamber today, just as there were at the roundtable. However, I am grateful for what he says.

[Paul Scully]

Take it while you can—I am joking, of course.

We have talked a little about cystic fibrosis, and we are all here because we know what it is, so I will not talk about that. I know that lots of Members want to speak, so I will finish with the little hint that I have seen of what it must be like to live with cystic fibrosis. It goes to the point about medicines from the hon. Member for South Antrim (Paul Girvan). I saw a fantastic video—it is private at the moment but I hope the Millers will make it public—of Grace Miller, who is 15 and likes to run. What many people do not understand about cystic fibrosis is that many people have to do physio. They actually do more training than a lot of professional athletes. These kids, who may be aged three or four, have to get up and use a nebuliser for an hour or so. I met a mother who talked about her three-year-old daughter who would use a nebuliser with salty water. It would make her cough and make her sick, and she would then have to do her physio. She would have to run on the spot and run around the house for a while, and then she would have to go and eat.

However, cystic fibrosis also suppresses nutrient intake, so sufferers have to eat far more than normal people—50% more in many cases—with some people taking up 3,000 calories or maybe more each day. It is therefore no surprise that sufferers often have a really unhealthy relationship with food. They just do not want to eat. We talked about one girl who filled her pockets with coins because she did not want to go to school and be underweight. That relationship with food is relatively minor in some ways, compared with the shortage of breath and the actual illness. We have not even started to talk about the underlying illness that cystic fibrosis causes.

--- Later in debate ---

[Ian Austin (Dudley North) (Lab)]

I congratulate the hon. Member for Sutton and Cheam (Paul Scully). He gave a really good explanation of this issue and why this drug should be provided. Hon. Members are supposed to start their speeches in these debates by saying how pleased they are that the debate is taking place, but I am not pleased at all. I think that this is the third debate on this issue in which I have taken part over the past few years. We have presented petitions at Downing Street. We have had campaign events in Parliament. As has been said, we had 41 Members at a roundtable just a few weeks ago. And we are still here. Three years after Orkambi was approved for use and two years after NICE said that it was “important and effective”, we are still here, waiting for it to be provided for people with cystic fibrosis. So I am not pleased that we have to have another debate about this issue, but whatever I feel about that is nothing compared with the upset and worry—indeed, the terror—that people with cystic fibrosis and their families go through as they wait while their health, life expectancy and quality of life decline.

The reason why I have taken an interest over the years in this issue is that I was contacted by Carly Jeavons, an amazing woman from Dudley who took part in the clinical trial for Orkambi. I have also been contacted by Samantha Carrier, a young mum from Dudley whose baby daughter Daisy was diagnosed shortly after birth and who now devotes her life to campaigning for access to these life-changing drugs. I want to tell everyone here what Carly told me, because it explains much better than I can why we are here and why this drug must be made available. Before being put on the clinical trial, she had had to choose between leaving work, with all the financial hardship that that would cause, and struggling in work, with her health being made worse. She had to take 90 tablets and do two hours of physiotherapy every single day. Her lung function was at about 44%, and she spent two weeks in hospital every couple of months. She 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. I only need one or two courses of IV’s per year instead of four. Hospital visits have massively reduced and admissions are non-existent.”

But that is just part of it.

[Julia Lopez (Hornchurch and Upminster) (Con)]

The hon. Gentleman makes the important point that if people have access to this drug, they can reduce the number of times they have to go to hospital. It would be very helpful if we had an understanding of the cost of those hospital admissions and what that would be if it was offset against the cost of the drug. Does he agree with that point?

[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?

[Alex Sobel (Leeds North West) (Lab/Co-op)]

My hon. Friend is making an excellent speech. A constituent who has two children with cystic fibrosis wrote to me:

“I have lived at first hand now for 42 years in close proximity to this cruel disease…Orkambi, expensive as it is, will offer a possible lifeline to many CF sufferers. On the cost effective side I think it is worth pointing out just how expensive it is to hospitalise and treat CF patients when they are ill, as happens frequently.”

She went on to say that the local facilities are superb, but:

“The cost of any drug that reduces the number of hospital admissions would I am sure, be at least significantly off set by the savings in NHS”.

Does my hon. Friend agree that it should be proved on that basis?

--- Later in debate ---

[Ian Austin]

My hon. Friend is absolutely right. The Minister and the Department need to take on board that really important point, which has been and will be made repeatedly.

I understand that the Government want to pay as little as they can for these drugs—of course, it is taxpayers’ money—and the company wants to get the best price possible. However, the question for Ministers is how this impasse is going to be resolved. I repeat: delaying means that people are dying sooner. Their lungs are suffering irreparable damage. Their lives are shorter. They cannot plan for the future. These drugs are available in the USA and across Europe, in France, Germany, the Netherlands, Austria, Italy, Luxembourg, Denmark and Ireland. When does the Minister think patients here in England will get them?

The Government’s response to Sir Hugh Taylor’s important accelerated access review opens by stating:

“The Government’s ambition is that NHS patients should be among the first in the world to get life-changing treatments.”

I note the words, “first in the world”. The response continues:

“Achieving this goal is only possible by working in close partnership with our world-leading life sciences sector.”

I say to the Minister again: this system is not working. That is not a criticism of him. He is a good guy. We have worked together on lots of issues. It is not a criticism of the Government, NICE or anyone else. It is just that NICE was not designed to deal with the development of these sorts of drugs. However, I ask the Minister to commit personally to sorting this out. It is really urgent. The system has not worked. Patients are being let down. Ministers need to take charge of this personally, so that an agreement can be negotiated as soon as possible. We are asking him to take charge of it personally and to make it an urgent priority to get this sorted out. Will he meet me, other MPs and the Cystic Fibrosis Trust, to look at the issue again? Will he promise today to take charge of the negotiations and ensure that progress is made? I want the Government to look at the issue again. Vertex needs to come up with a new proposal, too; it knows that it will have to negotiate and compromise. Will the Minister lead a new set of negotiations and get these people in the room, so that these drugs can finally be provided and other people in England can benefit in the way that Carly Jeavons has?

[Sir Mike Penning (Hemel Hempstead) (Con)]

It is a pleasure to take part in this debate. Like everybody in this room, I have constituents who suffer from this terrible genetic disease. We live in a society where sometimes those who shout loudest get heard more, but interestingly, it is not possible for those who suffer from this terrible disease and their families and loved-ones to have orchestrated the petition. Members of the general public who have no contact with someone who has CF have signed it and decided that the process is fundamentally unfair. Like the hon. Member for Dudley South—

[Ian Austin]

North.

[Sir Mike Penning]

My apologies—don’t forget I am a southerner.

The hon. Member for Dudley North (Ian Austin) and I had a good meeting at the roundtable. All of us learned things. For colleagues who were not there, there are some good notes to come around.

We thought we would not have a decision by tonight from NHS England on the Vertex proposals—it usually takes much longer—so I was very disappointed when I saw not only what NHS England put out, but the press release from Vertex. As the hon. Gentleman said, it is not so much because the Department, NICE or the companies are bad—our constituents could not have any of their drugs without the R&D done by those companies. NICE is not capable, under its guidelines, of properly analysing the benefits of the drug, or the other drugs coming down the line. The Republic of Ireland must have sat in exactly the same position that we are now in. It had difficult negotiations with Vertex about a plan for not just one or two drugs, but the drugs coming down the line.

Let us not beat about the bush: this drug is not a cure. It helps some people. At the end of the day, they will either have a transplant or their lungs will give way. It is wonderful that we will have an opt-out transplant system. People are dying in this country today because the organs are being wasted. Lung transplants are vitally important. We should all campaign in our constituencies to give people the confidence to tell their loved-ones what they want done with their organs, rather than just relying on the legislation. At the end of the day, to help people today and future sufferers of this terrible disease—we know they are coming, because it is genetically in the system—we need not only drugs that slow it down and stop the lungs filling with fluid, but to get a cure. I hope we get to that position in my lifetime. Those of us who have been in the House for some time will remember taking the Human Fertilisation and Embryology Act 2008 through. It was very controversial when we started using that sort of technology, research and work, but I am pleased that we passed that Act because many people are around today who have better lives and who, without us using that technology, would have been very worried.

As my hon. Friend the Member for Sutton and Cheam (Paul Scully) said, this is not about individuals. When an individual gets CF, the whole family and all their loved ones get it. If the family is not there, what happens? The NHS and social services. Several colleagues have asked about the overall cost. If we do not give people these drugs—not just this one, but the others coming down the pipeline—the cost to the NHS is greater. If we take away the moral and ethical position that we have something that will improve and extend someone’s life and look just at what NICE looks at—the cost implications—it is plainly obvious that we need to have a better system for NICE to assess the costs.

My hon. Friend called it “physiotherapy”, but someone who suffers with CF has to have a pummelling. People have to do an amazing thing to their loved ones to get the fluid out their lungs and to stop them drowning internally. Instead of saying that drug companies are bad and NICE is good, we need to bang some heads. Frankly, the only people within Government who will do that are the Ministers. That was said to me time and again when I was a Minister. Time and again I tried, and time and again I got pushed back, but I kept going.

It is obvious—to echo what I said at the start of my comments—that those who shout the loudest should not always win. In this case, we need to shout for them. That is what we were sent here for, and that is what we should do today.

Oral Answers to Questions

Lord Austin of Dudley Excerpts

Tuesday 10th October 2017 Commons Chamber

[Ian Austin (Dudley North) (Lab)]

3. What his policy is on making Eylea available as a treatment for myopic choroidal neovascularisation.

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

The National Institute for Health and Care Excellence is developing guidance on the use of Eylea for the treatment of myopic CNV. NICE has published draft guidance for appeal that recommends use of the drug subject to a patient access scheme that makes it available to the NHS at a discounted price. NICE expects to publish final guidance this November.

[Ian Austin]

NICE needs to get a move on, because these drugs have been available to patients in Scotland and Wales, but patients in England will be going blind in the meantime.

Some people are told that their eyesight is too good to be treated, but by the time it has declined, they are told that nothing can be done to help. Will the Secretary of State meet my constituent, Elaine Shaw, who has been campaigning on the issue, the Macular Society and the Royal National Institute of Blind People so that we can discuss how to prevent people from facing an increased and unacceptable risk of preventable sight loss?

[Steve Brine]

Obviously I would be deeply concerned if patients were losing their sight due to treatment not happening in a timely way. Dudley clinical commissioning group tells me that it has already made funding available for Eylea following consideration of the NICE evidence summary issued in June 2016. This is the first drug that we have appraised through the new fast-track process for treatments that demonstrate clear cost-effectiveness. Patients will have routine access to Eylea from 1 December should the guidance remain unchanged. Of course, I would be happy to meet the hon. Gentleman and his constituent.

Contaminated Blood

Lord Austin of Dudley Excerpts

Tuesday 11th July 2017 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

I beg to move,

That this House has considered the need for an independent public inquiry into the contaminated blood scandal.

May I first thank you, Mr Speaker, for allowing this emergency debate? This is the first such debate on the contaminated blood scandal, and it arises, as you know, after further evidence of criminal actions was produced by the right hon. Andy Burnham and after a joint letter calling for a Hillsborough-style inquiry from all six non-Government Westminster party leaders. After the announcement this lunchtime from Downing Street of a full inquiry into the scandal, emergency debates may become an even more popular route to get the Government to listen and act.

In the light of the announcement, I want to acknowledge all the people who have been involved in getting us to this point. I will start by thanking my constituent Glenn Wilkinson for his persistence and dogged determination when he came to see me in 2010 to tell me his story. I have kept him at the centre of whatever I have attempted to do on this issue. I also thank the many individuals and campaign groups who have fought for years to get to this point: the Manor House group, the Contaminated Blood Campaign, and Tainted Blood. I thank the Haemophilia Society, in particular Liz Carroll, its chief executive, and Jefferson Courtney, the policy and public affairs manager. Over 2,400 individuals have tragically lost their lives. They are not here to see this announcement, but their voices live on through their family members, who have never given up fighting for them. The campaign, which has run for many years, has at times had the great benefit of brilliant investigative journalists, including Caroline Wheeler of The Sunday Times, who was formerly a correspondent on the Hull Daily Mail, and the many researchers and journalists who worked on the BBC “Panorama” documentary on the disaster from just a few months ago. I know that the Daily Mail is not a favourite of yours, Mr Speaker, but it also ran a good story on its front page last week.

I thank the 111 parliamentarians who are members of the all-party parliamentary group on haemophilia and contaminated blood, particularly my co-chair the hon. Member for Worthing West (Sir Peter Bottomley), the previous chair Jason McCartney, who is no longer a Member, Margaret Ritchie and Mark Durkan, who are also no longer Members but were vocal in the campaign, and of course the right hon. Andy Burnham, who set out clearly in his valedictory speech why this was unfinished business and why we needed a public inquiry. Finally, I thank the late right hon. Paul Goggins, who was a huge inspiration in this cause.

[Ian Austin (Dudley North) (Lab)]

My hon. Friend is completely right to thank all those people, but there is one person missing from that list: herself. The whole House should thank her for her tireless work over the past seven years on this absolutely brilliant campaign. This shows how Parliament should work: a constituent raised the issue with her; she campaigned on it non-stop; she was not fobbed off; she pursued it doggedly; and she has played a huge role in bringing us to this point. Last night, I had a load of emails from constituents who have been affected by this scandal, and I want to say how grateful they are to my hon. Friend for the work that she has done.

[Diana Johnson]

I am grateful to my hon. Friend for those comments, but this is down to the combined effort of so many people over so many years.

--- Later in debate ---

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

Thank you for your guidance, Mr Speaker.

First and foremost, thanks must go to my outstanding hon. Friend the Member for Kingston upon Hull North (Diana Johnson), who has so valiantly campaigned on this issue for numerous years now. Without her and the dedicated resolve of her and all those she cited who have been involved in this campaign, we would not be where we are today. Thanks must also go to the former Member for Leigh, Andy Burnham, for the debate he led at the end of the previous Parliament, for which I had the honour of being present. He helped to add expediency to this issue with his commitment to go to the police with the evidence he has if the Government failed to come forward with an inquiry to seek justice for those who have been neglected

For too long, the contaminated blood community have been simply failed by their Government and ignored by those who have let the demands of those affected fall on deaf ears, leaving the community without justice. It is very welcome—as we have heard in the news in the past hour and a half or so—that an inquiry may finally be happening, and I look forward to hearing further details from the Minister when he responds. I am grateful that he and you, Mr Speaker, have allowed me to speak first so that he can answer the questions I pose. This is a rather unusual format, and I had no prior knowledge that it was going to be changed. I hope that other Members who speak and pose questions will get a response from the Minister; I do not know whether he will get two bites at the cherry or will have to intervene to answer other Members’ questions.

This emergency debate is timely and allows the House to have its voice heard fully, which is right after the decades of neglect the contaminated blood community has faced. At any point prior to 12.30 pm, when the announcement was made in the news, the Minister could have come forward and made a statement. That would have saved my hon. Friend the Member for Kingston upon Hull North from having to apply for an emergency debate yesterday. It feels like the order of things has been a little forced, and it is sad that it has had to be forced in this way. But we are where we are.

Labour Members are resolutely in favour of a Hillsborough-style public inquiry, as we made clear in our manifesto a couple of months ago—my hon. Friend the Member for Kingston upon Hull North and I pushed for that to be included. The Labour party believes that that style of inquiry would get to the heart of the problems that unfolded in the 1980s and hold to account those who were to blame for this scandal, before it is too late. It is not just our party, but all the parties—especially those on the Opposition Benches—that have made a commitment to stand up for those people seeking justice. That was so clearly documented in the joint letter, which was published on Sunday, from the leaders of every single opposition party here in this House, including, I am pleased to say, of the Democratic Unionist party.

Last November, in a debate secured by my hon. Friend the Member for Kingston upon Hull North, we discussed a whole host of issues that this community faces, including how people could be compensated for the terrible events that have occurred. Today, we are here to debate the fight for justice, which should have happened a lot sooner.

In my contribution, I want to impress on the Minister two key points: first, that the previous two inquiries have, categorically, not been sufficient in seeking justice, which is why a Hillsborough-style inquiry must be actioned; and, secondly, that the evidence presented so far is clear that if we are to have truth and reconciliation after the murky covering up of this scandal, then the strongest of daylight must be shone on every aspect, leaving no stone unturned.

The two previous inquiries—the Archer inquiry in 2009 and the Penrose inquiry in Scotland in 2015—did not go far enough in the eyes of the affected community in getting the truth and justice that they deserve. The Archer inquiry, which was not Government-backed, failed because there were no Department of Health witnesses giving evidence to the convened panel. The Penrose inquiry also did not go far enough in seeking the truth, as it was unable to compel witnesses from outside Scotland when, at the time of the scandal, most, if not all, of the decisions were made in Whitehall. That failure to compel witnesses to attend from outside Scotland meant that the inquiry failed to provide the justice and answers that people from right across the UK deserved.

There are many allegations around this scandal, ranging from Department of Health officials destroying evidence as part of the cover-up, to victims’ medical details being tampered with to hide the cause of their infections.

[Ian Austin]

Two of my constituents have two particular matters that they want the inquiry to consider: first, one said that he was infected with hepatitis C and exposed to the HIV virus, but was not informed of that by the NHS until years afterwards and he wants to be assured that the inquiry will reveal why the truth was hidden; the second wants to know about doctors and scientists being paid by the drug companies and about the precise nature of those deals. He thinks that those deals have to be really properly and rigorously exposed by this inquiry, so that we can get to the bottom of whatever vested interests existed during this scandal.

[Mrs Hodgson]

I thank my hon. Friend for his intervention. The evidence on those things has been well documented, especially by the former Member for Leigh and my hon. Friend the Member for Kingston upon Hull North. Those who have lived with these conditions, who are brave enough to come forward—and who are at the sharp end of this heinous negligence and the recent uncovering reported in the Daily Mail last week—have proved just how important it is that a Hillsborough-style inquiry is set up.

Oral Answers to Questions

Lord Austin of Dudley Excerpts

Tuesday 7th February 2017 Commons Chamber

[Mr Hunt]

I thank my hon. Friend for his continuing campaign on mental health issues. He is right to say that this situation is completely unacceptable, not least because if we want a child to get better quickly, the more visits from friends and family they can have, the better it is and the faster their recuperation is likely to be. We have commissioned 56 more beds, so the total number of beds commissioned for children is at a record 1,442, but we are determined to end out-of-area treatments by the end of this Parliament.

[Ian Austin (Dudley North) (Lab)]

No one is going to disagree with what the Secretary of State has said, but it is not going to help people at Dove house in Dudley, which has been helping people with mental health problems since the 1970s but faces closure this year, for the want of quite a small amount of money. Will he look at this personally and do everything he can to keep this valuable facility open? It is closing because Dudley is losing 20% of its funding, which compares with the figure of just 1% in Surrey, which he represents.

[Mr Hunt]

Dudley CCG has seen its funding go up, and we are asking all CCGs to increase the proportion of their spend on mental health. I am happy to look into the situation the hon. Gentleman talks about, but I will be very disappointed if increasing resources are not going into mental health provision in Dudley.

Accelerated Access Review

Lord Austin of Dudley Excerpts

Tuesday 13th December 2016 Westminster Hall

[Ian Austin (Dudley North) (Lab)]

I beg to move,

That this House has considered the implications of the Accelerated Access Review for cystic fibrosis and other conditions.

It is a pleasure to serve under your chairmanship, Sir Alan. I start by thanking three Dudley residents—Carly Jeavons, Samantha Carrier, and Samantha’s fiancé Rob Evans—for contacting me about accessing new treatments, and for what they have taught me about cystic fibrosis. I also thank Ed Owen, the brilliant former chief executive of the Cystic Fibrosis Trust, Darren O’Keefe and all of the staff at the trust for all their help and advice in organising the debate. Finally, I thank all of the right hon. and hon. Members who have taken the trouble to come here today to speak up on behalf of their constituents who have cystic fibrosis and other long-term conditions.

Just over a year ago, I was contacted by Carly about her work with the Cystic Fibrosis Trust to push for new treatments, such as Orkambi, to be offered on the NHS. She has continued to campaign, and I had the pleasure of joining her, her father Robert and her son Corey to deliver a 15,000-name petition to Downing Street earlier this year. Carly said to me:

“Before, I was always exhausted, I couldn’t work the hours I was contracted to and I had a little boy, Corey, to look after. I couldn’t do everything I needed to do and keep on top of my health, but this drug has given me some control back. I can now do everyday things and walk to the park with my five-year-old, which I could never do before. I personally feel like I have got better and better the longer I have been on it. I have a new way of living.”

Thanks to a clinical trial of Orkambi, Carly now needs to visit a cystic fibrosis clinic less than half as frequently as she used to. That allows her to carry on working, to go on holiday with her family and to do the things that the rest of us take for granted. She continues to benefit from Orkambi, but only thanks to a compassionate use scheme offered by the drugs manufacturer, Vertex. She and other users of Orkambi need the certainty that they will be able to benefit from the drug well into the future with NHS support, which is why we are here today.

I also thank Samantha Carrier, another Dudley resident, who is campaigning to raise awareness and raise funding after her young daughter, Daisy, was diagnosed with cystic fibrosis. Samantha has seen the difference that drugs such as Orkambi can make, and she wants her own daughter to have access to them as soon as possible, so that she can live as full a life as possible. She has told me about the hours of care and support that her daughter needs every day—which makes work so much more difficult for many parents of children with cystic fibrosis.

Samantha said to me:

“I am not ashamed to say I didn’t know how to cope with it all. But one day you wake up and you realise ‘This is it now’. All we can do as a family is try to do our best by her and give her the best life we can.”

I have been very moved by Carly, Samantha and Rob’s determination for something positive to come out of these diagnoses. I think their fundraising and campaigning for the Cystic Fibrosis Trust is nothing short of inspirational.

Personalised medicines can transform life for people with cystic fibrosis and a range of diseases, including muscular dystrophy and Alzheimer’s, but without a process for appraising these medicines that is fit for purpose, patients are unable to access these innovative medicines. That is why we called for today’s debate.

Cystic fibrosis is a life-shortening inherited disease that affects more than 10,000 people in the UK. It causes the lungs and digestive system to become clogged with mucus, making it hard to breathe and digest food. The damage that cystic fibrosis causes to the lungs means that many people eventually need a lung transplant. There is no cure for cystic fibrosis but many treatments are available to manage it, including physiotherapy, exercise and nutrition. The median survival age is just 28. What people like Carly, Sam and countless other families across the country need to hear today is the hope that a way forward can be found that will bring an end to an agonising and unnecessary wait that has gone on for well over a year now.

Orkambi was licensed in November 2015. It is a first-of-a-kind personalised medicine that treats the cause, not just the symptoms, of those with a particular mutation of the genetic defect that causes cystic fibrosis. Around half of the people with cystic fibrosis in England stand to benefit. Personalised medicines offer a revolution in cystic fibrosis care. People in countries such as France, Germany and America who have been on the drug for some time are beginning to report total transformations in their health, with some improving enough to come off the lung transplant waiting list—on which one in three people with cystic fibrosis die. Clinicians in England are desperate to prescribe Orkambi. Those who are prescribing it, on compassionate grounds, report that the drug, which halves hospital admissions—that lasts for months—for people with cystic fibrosis, could help ease the severe and worsening shortage of beds on cystic fibrosis wards.

I stood in this Chamber a year ago to raise concerns that the appraisal process for Orkambi was not suited to an innovation of this kind. The existing National Institute for Health and Care Excellence appraisal system makes decisions on the efficacy of a drug based on 24 weeks of clinical trials data, but fails to take into account the long-term benefit to sufferers’ quality and length of life. The focus on measuring the benefits of a treatment in terms of quality-adjusted life years does not work for genetic diseases such as cystic fibrosis, because it massively underestimates the impact that the drugs have on quality of life over the long term. It also fails to take account of the wider benefits for society of these medicines, such as the way that they can help sufferers or their carers get into work. In short, the existing system cannot provide an accurate assessment of new treatments that offer long-term, preventive stabilisation of cystic fibrosis.

I highlighted that, due to those concerns, the Cystic Fibrosis Trust was proposing an innovative solution under which real-world, long-term data could be gathered using the UK cystic fibrosis registry. The registry already provides real-world data to health commissioners and pharmaceutical companies, so that they can monitor the efficacy of treatments.

[Andy Burnham (Leigh) (Lab)]

My hon. Friend is making an incredibly important point. I congratulate him on securing this debate, which will give hope to the many people out there who suffer with cystic fibrosis. Is he aware of new 96-week data that have recently been published that show that Orkambi slows decline in lung function by around 42%? Those data were not available to NICE when it made its appraisal. Do those data alone not make the case for a further accelerated review process on this absolutely compelling?

[Ian Austin]

My right hon. Friend is completely right; he raises a point I will make shortly. It is good that he is here to support people with cystic fibrosis in his constituency, and to bring his knowledge and experience of the national health service to bear in the debate.

The Cystic Fibrosis Trust’s proposal would provide foundations for a managed access scheme for the drug. That was in line with the interim findings of the accelerated access review, which recommended the merits of such an approach and referred to the UK cystic fibrosis registry as an exemplar. I will say more about the accelerated access review in a few moments.

As expected, seven months later NICE referred to a lack of long-term data in rejecting Orkambi for use in the NHS. That was despite Orkambi’s being proven to halve hospitalisations and NICE’s recognising it as a

“valuable new therapy for managing cystic fibrosis”

with significant clinical benefits, as well as

“wider benefits to society for people with cystic fibrosis and carers of people with cystic fibrosis.”

[Julian Sturdy (York Outer) (Con)]

I congratulate the hon. Gentleman on securing this important debate. He correctly points out that this is not just about the way in which Orkambi improves quality of life, which I know is extremely important, but about cutting hospital admissions. That has to be taken into account when we look at the wider cost implications of the drug. What we need is time for the drug to be given the chance to prove its worth.

[Ian Austin]

The hon. Gentleman is completely right to say that Orkambi could reduce hospital admissions, and could shorten the amount of time people spend in hospital when they have been admitted.

In its statement, NICE referred directly to the trust’s proposal as a potential solution to the shortage of long-term data. With the NICE process exhausted and seven months wasted, we hoped that the way would be clear for direct negotiations between the drug manufacturer Vertex and NHS England, which would allow for a speedy resolution to the situation. However, Department of Health officials then demanded that the drug be put through a rapid review process, which, at 16 weeks, is anything but.That process is based on exactly the same criteria that had just seen Orkambi denied to those who need it. Vertex has declined to enter the process, because of the certainty that it will come to nothing.

New data published in October at the North American cystic fibrosis conference, which my right hon. Friend the Member for Leigh (Andy Burnham) mentioned, are based on 96 weeks of trials and show that Orkambi slows the decline in lung health by up to 42%. That is comparable with the 47% slow in decline caused by the transformational treatment Kalydeco, which is widely available in the UK for a less common mutation of cystic fibrosis. Those data were unavailable to NICE but clearly illustrate that drugs such as Orkambi need the chance to prove their worth in the long term. That also underlines the fact that we now have a situation where people with cystic fibrosis face discrimination by genotype, because they are being denied the same level of treatment that people with a different genetic mutation of cystic fibrosis receive.

Twelve months after licensing, negotiations are at a standstill. I understand that Vertex is keen to offer a substantial discount, but for commercial reasons would need to do so confidentially. It would like to take up the trust’s offer of monitoring the effectiveness of Orkambi for a trial period. That could build on the American data and allow NHS England to conduct final negotiations based on an accurate reflection of the drug’s effectiveness.

[Jo Churchill (Bury St Edmunds) (Con)]

I would like to thank the hon. Gentleman for securing such an important debate. One of the beauties of cystic fibrosis data is that they capture 99% of all people with the disease, so could truly be used as an exemplar. The accelerated access review calls for accurate monitoring via data, and this offers an ideal chance to do that.

[Ian Austin]

The hon. Lady is completely correct. It is good that she is here in the Chamber, making these important points.

Vertex is also keen to explore flexible reimbursement schemes, which would allow the NHS to manage the overall budget impact of the treatment. However, the inflexible current system insists that any offer has to be made public, rejects the trust’s solutions and offers no scope for flexible reimbursement schemes. That brings me to the accelerated access review, which was commissioned to speed up access to innovative new drugs and treatments such as Orkambi. The review was finally published in October, after a long delay, and recommends that NICE reviews its processes. It calls directly for the current system to change, to include more emphasis on the confidential commercial arrangements, flexible reimbursement arrangements and collection of real-world data that I and other Members have referred to. Those recommendations could be the key to reaching a deal that delivers Orkambi to those desperate to receive it.

When the review was commissioned last year by the Minister’s predecessor, the hon. Member for Mid Norfolk (George Freeman), he spoke of how accelerating the uptake of transformational technologies in the 21st century would attract investment in research and innovation to help us earn the prosperity we need as an advanced economy. When the review was published in October, NHS England’s chief executive, Simon Stevens, said that creating headroom for faster and wider uptake of important new patient treatments would create opportunities for the UK’s globally successful life sciences sector. The failure to deliver Orkambi undermines that vision.

We have a rigid and inflexible system, and warnings that it is not fit for purpose have been ignored throughout the process. Instead of embracing the opportunity for an innovative solution, we have been offered further negotiations based on criteria that have already failed once. That is a waste of time and taxpayers’ money and sends completely the wrong signal to a global life sciences industry currently questioning future investments here in the UK. Hugh Taylor, the review’s chair, set out the need for commitment and collaboration across Government, the NHS and the life sciences industry to make the review’s proposals a reality.

The review sets out criteria for transformational treatments that should be fast-tracked for access. Orkambi meets those criteria. It presents the perfect opportunity to put many of the review’s proposals to the test, to illustrate the commitment and collaboration needed and to demonstrate how we can come together and adapt in the light of new information. It is predicted that 95% of people with cystic fibrosis could benefit from a personalised medicine within five years. Coming up with a solution for Orkambi—one that makes sense to the NHS as well as reflecting the investment that goes into these treatments—will give us a genuine opportunity to beat this condition.

I am sure people will benefit from the review’s proposals in the years to come, but that must not be at the cost of Orkambi, which is available now. Many people with cystic fibrosis, as well as their families and carers, such as my constituents Carly Jeavons and Samantha Carrier, are watching this debate. Many of them are forced to spend weeks and months of each year in hospital, and most of all they want a chance to be able to do the everyday things we all take for granted, such as raising a family, planning a holiday or breathing without struggling. They have already endured needless delays, and as time goes on those delays present an obstacle to investment in future treatments to beat cystic fibrosis. That is not the vision set out by the accelerated access review.

[Peter Dowd (Bootle) (Lab)]

Muscular Dystrophy UK is calling, among other things, for ring-fenced, protected funding for rare diseases. That was not included in the review to which my hon. Friend refers. Does he feel that that possibility should at least be considered as a way forward at some point?

[Ian Austin]

That is a really good point, and I am pleased that my hon. Friend raised it. I am sure the Minister will want to respond to that.

Tragically, we have to face the fact that many people are dying now. They do not have time to wait for the Government to respond to the review or for NICE to enter a lengthy consultation on its processes. They want to see the Government get on with exploring how Orkambi can reach those who need it without delay. If the Government create the conditions for constructive negotiations, the manufacturers will play their part, just as the Government themselves need to be flexible in order to deliver transformational treatments such as Orkambi.

I would like to ask the Minister the following questions. Does he think it is right that people in this country are considering moving to France or Germany in order to save their children’s lives by giving them Orkambi, which is now proven to halt the progression of their children’s decline? What does that say about a Britain trying to project its place as being at the cutting edge of the life sciences sector? Will the Minister provide assurances to people watching today that the Government are listening, and that everything possible will be done to explore progressing the negotiations on Orkambi in 2017? Will he reassure them that we are capable of finding a solution next year that will bring an end to this cruel and unnecessary wait?

Will the Minister seek guidance from Government, NICE and NHS England on how the recommendations in the accelerated access review can be used to break the deadlock in negotiations? Will he meet Vertex and the Cystic Fibrosis Trust to discuss that? Samantha Carrier points out that in the 1970s, the life expectancy of cystic fibrosis sufferers was only five years old. Thankfully, that has increased greatly, but the rules for free prescriptions have not moved. When people become 18, they have to pay for their medication, despite the fact that they need these drugs to stay alive. Will the Minister look at that issue?

This is exactly how Parliament and politics in our country should work. It is our job to listen to our constituents and come here to stand up and speak out on their behalf. People like Carly Jeavons struggle to work or spend time with their family and do other things that the rest of us take for granted because they have to undergo hours and hours of treatment. New treatments have helped Carly, but others are missing out on these new drugs at the moment. People like Sam and Rob are having to come to terms with what this condition means for their newborn child, at the same time as having to care for her. All three of them—Sam, Rob and Carly—are devoting hours to raising funds or campaigning for better treatments for people with cystic fibrosis. They are an inspiration to us all; will the Minister meet Carly Jeavons, Samantha Carrier and Rob Evans and listen to them directly?

[Several hon. Members]

rose—

Contaminated Blood and Blood Products

Lord Austin of Dudley Excerpts

Thursday 24th November 2016 Commons Chamber

[Diana Johnson]

Absolutely. That is a very important point. I will come on to the primary beneficiaries in a while, but I will now make some progress.

My first concern was about the different schemes that are available. The second issue, which is also important, is that we know the five existing trusts will be amalgamated into a single body to administer the scheme at some point in 2017. I am deeply troubled by the fact that the administration of the new body looks likely to be done by a profit-making private company. I know that Atos and Capita have attended meetings with Department of Health officials about the new contract. Formal tender submissions will be due soon, with a decision on the contractor set to be made in 2017. No Health Minister has had the courtesy to tell the all-party group of these plans, nor were the beneficiaries asked for their views about this in the survey done in January. Even the Department’s response to the survey, which was published in July, made absolutely no mention of such a prospect. Alongside hon. Members on both sides of the House, I cannot support proposals to contract out provision to Atos or Capita.

Let me remind the House how many in this community were infected in the first place. Many contracted HIV and hepatitis C from American blood products supplied by profit-making private companies. The United States, unlike the UK, has always allowed the commercial purchase of blood products, and those products were often donated by people who desperately needed money and were willing to be less than honest about their chances of infection. This is the reason why so many in the affected community harbour such distrust of private companies.

[Ian Austin (Dudley North) (Lab)]

I want to place on the record that I have been contacted by constituents in Dudley who have told me how grateful they are to my hon. Friend for the lead she has given and for the campaigning she has done on this issue. One constituent has written to me about allegations of impropriety in relation to doctors being encouraged by pharmaceutical companies to use plasma concentrates instead of cryoprecipitate in blood transfusions. Does she agree with my constituents that that should be investigated?

[Diana Johnson]

I am very happy to agree with my hon. Friend. That should certainly be investigated.

I return to people’s concerns about the use of private companies. We know that, over the past six years, there has been a huge sense of mistrust of the disability assessment regime operated by Atos before it walked away from its contract with the Department for Work and Pensions. If there is one thing that could fatally undermine progress towards a better support scheme, it is the plan that the new scheme be administered by a private company. I strongly urge the Government to look again at that plan and show empathy for the people affected.

Oral Answers to Questions

Lord Austin of Dudley Excerpts

Tuesday 15th November 2016 Commons Chamber

[Mr Dunne]

My right hon. Friend refers to the changes that we introduced under this Government with effect from last year, 2015-16, to reduce the eligibility for those British citizens living in warmer climates around the Mediterranean, which I know caused him considerable concern. I am pleased to be able to tell him that the change in policy last year reduced the amount paid under the winter fuel payments by 70% compared with the previous year to those people living in the European economic area.

[Ian Austin (Dudley North) (Lab)]

One way of preventing excess winter deaths would be to ensure that people can go to their local pharmacy for advice, essential medicines and flu vaccines. Plans to cut pharmacy budgets will hit Dudley hard, with just 1%—one out of Dudley’s 100 pharmacies—getting extra support, compared with 40% in places such as Chesham and Hampshire. Of the thousands of local residents who completed my survey, 97% said that they opposed these cuts. Why will the Minister not listen to the people of Dudley and sort this out?

[Mr Dunne]

I wonder whether the hon. Gentleman included in his survey the fact that the reduction in the establishment payment to each pharmacy will be of the order of £200 a week from 1 December, and £400 a week from 1 April. How many of those pharmacies in Dudley will not be able to sustain that reduction in Government subsidy? We use community pharmacies to undertake flu vaccinations for which they will be paid.

Cystic Fibrosis

Lord Austin of Dudley Excerpts

Tuesday 8th December 2015 Westminster Hall

[Ian Austin (Dudley North) (Lab)]

I beg to move,

That this House has considered access to medicines for people with cystic fibrosis and other rare diseases.

As always, it is a pleasure to see you in the Chair, Sir Edward. I thank Carly Jeavons from Dudley for contacting me to suggest that we hold this debate and for what she has taught me about cystic fibrosis; Ed Owen, the chief executive of the Cystic Fibrosis Trust, and all his staff for their help and advice in organising this debate; and all the right hon. and hon. Members who are here to take part and to speak up for their constituents with cystic fibrosis and other long-term conditions.

Three years ago, Carly Jeavons was at a crossroads. She did not know whether to leave work and face financial turmoil or to continue working while risking her physical wellbeing and mental health. She struggled to breathe and had a lung function of around 44%. Every day she was taking around 90 tablets and undertaking around two hours of physiotherapy, and she spent two weeks in hospital every three months. In September 2014, Carly was offered the opportunity to participate in a clinical trial for a new type of treatment. Initially on a blind clinical trial, she was unsure what treatment she was taking, but later found out that it was a new treatment called Orkambi. The treatment has enabled her to spend more time with her family, and she has been able to go on holiday. She now attends a cystic fibrosis clinic every eight to 12 weeks, rather than every four.

Personalised medicines can have a transformational impact, not only for people with cystic fibrosis, but for a range of other illnesses. Without a more effective process for appraising such medicines, however, patients are unable to access new and innovative treatments. That is why I called for this debate. Cystic fibrosis is a life-shortening inherited disease that affects more than 10,000 people in the UK. It causes the lungs and digestive system to become clogged with mucus, making it hard to breathe and digest food. The damage to the lungs caused by cystic fibrosis means that many people come to rely on a lung transplant to stay alive. There is no cure, but many treatments are available to manage it, including physiotherapy, exercise, medicine and nutrition. Tragically, the median survival age is just 28.

Cystic fibrosis care has long been limited to managing symptoms and decline, but now, after 25 years of research, the Cystic Fibrosis Trust says that there is a pipeline of precision medicines that target particular cystic fibrosis mutations and seek to correct the basic underlying genetic defect. This new type of personalised medicine, which targets the defective gene, is a testament to modern science, and provides an opportunity to tackle this life-shortening inherited disease. As a contributor to the human genome project, British science has played a leading role in creating this new era of genomic medicines, and the UK is a global centre for clinical trials such as the one that my constituent Carly participated in. That work continues through the NHS’s 100,000 Genomes Project.

The first precision medicine for cystic fibrosis, Kalydeco, targets a mutation that only a little more than 4% of people with cystic fibrosis in the UK have. On that medicine, patients have shown increased lung function and slower progression of lung disease, and the number of hospital admissions has fallen by more than half. There are predictions that some people on the drug could expect a near-normal life expectancy. Orkambi is the next precision medicine for cystic fibrosis. It is being developed by Vertex, based here in London. It targets a mutation that around 50% of people with cystic fibrosis have, and, like Kalydeco, it has the potential to offer significant health benefits. Orkambi is now licensed for use in the EU and will soon begin its separate appraisals for clinical and cost-effectiveness across the NHS, covering England, Scotland, Wales and Northern Ireland. Work in this area is also important for people affected by muscular dystrophy and related conditions, with a number of drugs in late-stage clinical trials and one, Translarna, which is used to treat Duchenne muscular dystrophy, undergoing appraisal by the National Institute for Health and Care Excellence.

Muscular dystrophy is a progressive condition, often rapidly so, meaning that delays at the regulatory, approvals and funding stages can make all the difference to whether someone can access a treatment. Genomics England is currently delivering the 100,000 Genomes Project, the aim of which is to create a new genomic medicine service for the NHS. The project is focused on rare diseases and cancer. The developments in cystic fibrosis treatment and the impact of the new medicines have already demonstrated the human benefit from work in this area, but the current single technology appraisal system may not enable access to personalised medicines.

The existing NICE appraisal system makes decisions on the efficacy of a drug based on 24 weeks of clinical trials data. It fails to take into account the long-term benefits to sufferers’ quality and length of life. The focus on measuring the benefits of a treatment in terms of quality-adjusted life years does not work for genetic diseases such as cystic fibrosis, because it massively underestimates the impact that the drugs have on quality of life over the long term. It also fails to take account of the wider societal benefits of these medicines, such as the way they can help sufferers or their carers to get into work. In short, the existing system cannot provide an accurate assessment of new treatments, such as Orkambi, which offer long-term, preventive stabilisation of cystic fibrosis. It may say no too soon to treatments that require time for their value to be realised.

This debate is not about spending more money on drugs. In fact, it is the opposite: it is about making sure that we are helping people with conditions such as cystic fibrosis in the most cost-effective way, which could actually reduce hospital admissions and enable them to work more easily. According to the Cystic Fibrosis Trust, new genomic treatments could be available to 90% of people with cystic fibrosis within five years, but under the way in which NICE currently appraises medicines, none of those drugs is likely to be approved for use in the NHS. The system simply is not set up to assess personalised medicines where the patient target audience is, by definition, increasingly small. The situation affects many other rare diseases beyond cystic fibrosis, but without reform, research into precision medicines of this kind could dry up and a once-in-a-lifetime opportunity to beat cystic fibrosis and other rare diseases could be missed.

The Government recognise that change is needed. The creation of the Office for Life Sciences and the accelerated access review are among various initiatives to investigate reform. We need a system that gives new treatments the chance to prove their full effectiveness with long-term, real-world data. We have started to see that in other disease areas, with the development of the first managed-access agreement between a manufacturer and NHS England, which will allow unapproved treatments to undergo long-term testing before requiring full approval. That new model has the potential to be applied across the entire system.

I welcome the establishment of the accelerated access review to find ways of speeding up access to innovative new drugs and treatments. The interim report on the review emphasised the importance of flexibility and anticipating potentially transformative technologies, both those on the horizon and those already available. Such innovative transformative medicines should be seen as part of the solution. We need the NHS to give clinicians and patients time to assess how new precision medicines might slow the decline of diseases, and we need a system that gives medicines the chance to prove their true effectiveness with long-term, real-world data.

Cystic fibrosis is a test bed for reform because the Cystic Fibrosis Trust hosts the UK cystic fibrosis registry, an anonymised database that lists the 10,583 people in the UK with cystic fibrosis. The registry already provides real-world data to health commissioners and pharmaceutical companies so that they can monitor the efficacy of treatments. That makes cystic fibrosis a unique testing ground to pilot a new appraisal system for innovative medicines that could be applied to treatments for a wide range of conditions beyond cystic fibrosis. Orkambi could be the first treatment piloted. This is a once-in-a-generation opportunity to beat cystic fibrosis. Like Carly Jeavons, the 4,000 people in the UK eligible for Orkambi do not have time to wait for the system to catch up.

Last night, hundreds of people with cystic fibrosis, along with their families and carers, took part in an online digital discussion on social media that enabled them to share their experience and opinions directly with Members of Parliament ahead of this debate. Simon, who took part in that debate, said that it is

“hard to state the significance on quality of life”

that new drugs had given him. He said that he

“now had a stable job”

and is

“in the middle of getting a mortgage”.

Lorraine, who cares for two children with cystic fibrosis, told us that these new treatments mean that she can go back to work and worry less about outliving her children. Michael said they will enable him to focus on his career without fear that he will have to give it up as he gets more unwell. Kelly pointed out that having healthier people who need less hospitalisation could save the NHS in the long run. Last night’s discussion and this debate are supported by Parliamentary Outreach, which aims to enable people with cystic fibrosis to come together and express their views.

Cystic fibrosis is a uniquely cruel condition. The people who suffer from it are unable to come together because they are vulnerable to the different bacteria that grow in their lungs. Although those bugs are usually harmless to people who do not have cystic fibrosis, they can settle in the lungs of those who do and harm them. Our discussion last night and this debate are important because they enable people with cystic fibrosis, who do not normally get the chance to speak up, to be heard. They show that if we embrace new technology and think of new ways of opening up democracy beyond the walls of Westminster, people such as Carly, Lorraine, Michael and Kelly can be heard.

The system needs to change. We need NICE reform and an appraisal system fit for a future that includes personalised medicines, which cannot be approved too soon. In the current system, decisions about a drug’s efficacy are based on 24 weeks of clinical trials data, but for new medicines such data are not available. The system needs to account for the development of data over time, and for cystic fibrosis it needs to account for the fact that the value of the new medicines will be realised over time.

Cystic fibrosis is a test bed for reform. The Government must agree to explore ways of collaborating with the trust. I know that the Minister is meeting the Cystic Fibrosis Trust later today to discuss some of these issues. There has been major investment in the life sciences in the UK, but we cannot continue to invest in developing innovative new medicines if patients cannot access such treatments.

I have several questions for the Minister. Can he update the House on the timings for developing proposals for a new system for appraising new medicines? Will he consider meeting the CFT to discuss working with it to develop a system for managed access to medicines that includes a CF registry? Can he comment on the safeguards that will be in place to ensure equality of access to medicines under any new scheme? Will he consider amending the appraisal process for the new drugs to give more weight to the societal benefits for sufferers and their carers? What is the Government’s latest thinking on following Scotland and Northern Ireland by introducing a ring-fenced fund for rare disease drugs in England? Will he write to the chief executive of the National Institute for Health Research to ask how his organisation plans to work with specialist muscle centres to address concerns about the lack of clinical trial capacity for Duchenne muscular dystrophy? Finally, how can NICE and NHS England be given greater powers to negotiate the best price with pharmaceutical companies to ensure that new treatments are not held up or rejected on the grounds of cost?

--- Later in debate ---

[Ian Austin]

If I may, Sir Edward. I thank you for chairing this debate. I thank the Minister and the Opposition spokesman for what they have said. It was really interesting to listen to the Minister and my hon. Friend the Member for York Central (Rachael Maskell) bringing to bear the deep expertise that they have gained from their careers before coming into Parliament. The right hon. Member for Chesham and Amersham (Mrs Gillan) spoke really movingly, and incredibly passionately and powerfully, about Archie Hill.

Most of all, I want to thank the people at the CF Trust and my constituent, Carly Jeavons, for raising this issue with me. I think this debate shows exactly how Parliament and politics should be working—with our constituents raising issues with us, us coming here to speak up on their behalf, and the Minister responding to their concerns—so I am very grateful indeed for that.

Question put and agreed to.

Resolved,

That this House has considered access to medicines for people with cystic fibrosis and other rare diseases.

Oral Answers to Questions

Lord Austin of Dudley Excerpts

Tuesday 7th July 2015 Commons Chamber

[Ben Gummer]

I agree that the process in Worcestershire has taken too long. I am glad that the West Midlands Clinical Senate has made recommendations that are being looked at by commissioners at the moment. I have encouraged commissioners to come to as quick a resolution as possible—I hope within the next few months.

[Ian Austin (Dudley North) (Lab)]

Will the Minister conduct a review of car parking charges? Patients in Dudley are absolutely furious after the people running Russells Hall hospital put up prices by as much as 50% for a short stay. Will he get together with NHS civil servants and the people running the hospitals to sort this out?

[Mr Speaker]

Because of the impact of parking charges on those seeking to access acute services.