Organ Donation: Opt-out System

Sharon Hodgson Excerpts

Thursday 13th July 2017 Westminster Hall

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

It is an honour to serve under your chairmanship, Ms Buck. I thank my hon. Friend the Member for Barnsley Central (Dan Jarvis) for securing this debate, his excellent contribution and all the work that he has done in recent weeks to raise awareness of the need for more people to become organ donors. I commend other hon. Members for their thoughtful contributions to this debate; the Daily Mirror for raising awareness of organ donation since the case of Max Johnson, a nine-year-old boy in need of a new heart; and the more than 9,000 people who signed the Change.org petition.

I also pay my respects to other hon. Members who have brought this issue to our attention over the last decade or so. They include my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh), who introduced a private Member’s Bill on this topic back in 2004, and my hon. Friend the Member for Newport West (Paul Flynn), who introduced a private Member’s Bill more recently and who spoke so well today.

I will quickly set the scene on organ donation in the wider sense and then move on to the situation in countries such as Wales and Spain, in which opt-out systems have been introduced. Finally, I will talk about three tests that Opposition Members would like the Government to look at, if such a system were implemented in England, to ensure that patients, NHS staff and community groups could have confidence in such a change in the law.

There is no doubt about the need for more organ donors in England. We have heard about that so clearly today. With so many people on the waiting list for new organs, it is important that we get more people signing up to donate their organs so that we can ensure that more people have the chance to live. That is why it is welcome that in a written answer last year, the then Public Health Minister, Nicola Blackwood, confirmed that since 2008 organ donation across the UK had increased by 68% and transplants by 47%, and that 2015-16 saw the highest ever deceased donor rate in the UK, with 1,364 deceased donors resulting in 3,529 transplants.

However, as we have heard, there is still a lot more to do because, tragically, 1,000 people every year die while waiting for a transplant. As we heard from my hon. Friend the Member for Barnsley Central, 6,388 people in Britain need a transplant. That includes 183 children. It also includes Rebecca, the adult daughter of my hon. Friend and constituency neighbour the Member for Sunderland Central (Julie Elliott). I send my hon. Friend, Rebecca and all her wider family my best wishes, as I am sure we all do.

Like the hon. Member for Strangford (Jim Shannon) and, I am sure, others here today, I am a card-carrying organ donor. As soon as I became old enough to carry a card, I did, and that was also because of a direct family experience of someone requiring organ donation. My Aunty Ella was one of the pioneers of organ donation when she received a kidney transplant at the fantastic Freeman Hospital in Newcastle. That was about 50 years ago. I have just looked this up: the first organ donations at the Freeman were in 1967, so my Aunty Ella was literally one of the first. She had a very young family at the time. I was born in ’66, but I can remember being told that all she wanted was to live long enough to see her children grow up. Well, she saw her children grow up, get married and go on to give her grandchildren. That is what organ donation is all about: it gives people a future.

There are issues, though, when it comes to black and minority ethnic communities. NHS Blood and Transplant reported that 66% of people from BME communities in the UK refuse to donate their organs, despite being more likely to need a new organ because of a predisposition to certain illnesses, such as diabetes and hypertension. I will cover that issue when I come to the three tests that we would need to set. It is why it is welcome that we have had an opportunity today to debate this issue and everything that comes with it and to think about how we go about improving organ donation, alongside considering what my hon. Friend the Member for Barnsley Central set out on the principle of an opt-out system.

Currently, we know of two countries in which opt-out organ donation systems work: Wales, which we heard quite a bit about today, and Spain. As we heard, Scotland is also considering how it can introduce an opt-out scheme. In Wales, the system was brought in via the Human Transplantation (Wales) Act 2013, which came into force in 2015. The new law sets out that those who live and die in Wales will be deemed to have given consent for their organs to be used unless they have explicitly said otherwise—that is the opt-out.

According to the Organ Donation Wales website, a public awareness campaign before the change in the law came into effect resulted in the numbers of organs transplanted increasing from 120 to 160. NHS organ donation statistics have shown an 11.8% increase between 2014-15 and 2016-17 in people in Wales opting in to donate their organs—the highest increase among England, Wales and Scotland. However, a written answer from the Minister present today, based on NHS Blood and Transplant figures, stated that

“there has been no notable change in Welsh deceased donation figures since the change in legislation”.

This is backed up by NHS organ donation statistics, which show that despite the opt-out system in Wales, there were more deceased organ donors in England and Scotland. That could be because the system is still in its early days; people who have not opted out are still alive and have not yet been able to donate their organs.

Further afield, our friends in Spain have had a soft opt-out system since 1979, in which consent is presumed in the absence of any known objection by the deceased, but family consent is still sought. The implementation of that system led to a small increase in organ donation and transplant, but there was a dramatic increase after 1989 when the Spanish Government made a big push to reorganise organ donation, as a result of which there was a medically trained transplant co-ordinator in every hospital by 1999. However, as a 2012 British Medical Association report stated, there are likely to be differences between the UK and Spain’s performance on organ donation because of their different approaches to resources and clinical practices. For example, Spain has a higher number of intensive care beds, different ICU admissions criteria and end-of-life practices, and the use of higher-risk donors in comparison with those used here.

Nevertheless, those two examples give us food for thought on the change in organ donation rules in England. They show that if we implement this policy, we need to get it right. It is important that we learn from what has already happened, adapting and using what we learn from other countries to get it right in this country. I hope the Minister and her officials will be busy doing that after the debate.

Labour will set three tests for the Government if any new organ donation system is introduced in England. First, they must obviously ensure full public awareness of any change in the organ donation rules. Secondly, they must ensure that medical and healthcare professionals are involved in designing any changes to the system and that they have the support to raise awareness among the public. Thirdly, they must promise to work closely with community groups to ensure that cultural and religious views are fully consulted on and taken into account before any change is introduced. Those three tests are based on work done in other countries, notably Spain and Wales, but also on the current situation across the UK, where there have been documented issues with engaging with BME communities on organ donation.

Organ donation and transplantation is a sensitive issue, as we have heard in this debate. Many people have strong and differing opinions on it, and it is crucial that the Government ensure that all voices are listened to so that we can come up with a solution. These real problems must be addressed. We know of many people who are on transplant waiting lists for far too long. Sometimes people die because they have been on the waiting list for years without a match to save their lives. We need considered action by the Minister and the Government. They must look at the issue carefully, consult with the public, ensure that solutions are found and bring about the improvements needed. I trust that the Minister will endeavour to do just that.

Contaminated Blood

Sharon Hodgson Excerpts

Tuesday 11th July 2017 Commons Chamber

[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.

[Catherine West (Hornsey and Wood Green) (Lab)]

Does my hon. Friend agree that the report, “Self Sufficiency in Blood Products in England and Wales” is unauthorised, and could be perpetuating inaccuracies and outright lies, as my constituent says in a letter to me?

[Mrs Hodgson]

All of this evidence will have to be examined. In recent days, constituents affected by this scandal have been in contact with my office with intricate details that must be addressed. It is important that those questions, no matter how small they may be, are answered, as they reflect the issues that have inextricably affected that person’s whole life. It is most important that those issues are addressed, so that those who have lived with the ramifications of this serious negligence can finally have the justice that they deserve.

Getting to the bottom of the allegations and the evidence and having a full and frank inquiry that brings justice for the many people affected are the reasons why we must have this inquiry. As the joint letter by the Opposition leaders said, if a panel were to be convened, it must disclose any and all documents related to the scandal, which involves the victims at every stage; and it must compel all parties involved to participate in the disclosure process and not to hinder justice any further. It must also investigate the events leading up to an individual’s infection and the aftermath, including allegations of medical details being tampered with, whether people were unknowingly tested for viruses without their knowledge and whether enough was done to identify those at risk of infection. As part of this inquiry, there must also be an investigation into the role of profit-making American firms, which supplied the blood factor concentrates to people with haemophilia.

Although none of this will bring back loved ones and those who have died as a consequence of this scandal, or change the life circumstances of those who are alive today living with these conditions inflicted on them, there is still something that we can do, which is to hold an inquiry. It is the very least that we can do. The thousands of people affected by this scandal must be supported and we must stand beside them in seeking justice, as that is our duty as elected representatives of the public.

I want to conclude with this final remark: none of us here has a magic wand—I know that our constituents think that we do—and we cannot turn back time and stop this scandal happening. Sadly, that power does not exist, but the power that does exist, at the behest of the Minister before us today, is that of facilitating the justice for those who live with the aftermath of this scandal. Here, today, we can send a message—a loud and strong message to those who campaign on this issue day in, day out—that Parliament has listened and is on their side. We in this House have heard them; we in this House are there with them; and we in this House will do all that we can for them in their quest for justice. We cannot let them down. We can help facilitate the truth once and for all. Parliament is listening to the individuals who have spent decades fighting against the system to get the truth that they seek, and the Government must listen to Parliament. Parliament is saying: fix this, provide those thousands of people who never asked for this to happen to them with the justice that they so rightly deserve. We cannot fail them any longer.

Oral Answers to Questions

Sharon Hodgson Excerpts

Tuesday 4th July 2017 Commons Chamber

[Steve Brine]

Yes, absolutely. Local authorities have an obligation to do that, but as I said to the new hon. Member for Ipswich (Sandy Martin), it is important that local plans come forward alongside the new national plan. Local solutions are needed for different areas, and that will be the case in my hon. Friend’s borough just as it is in my area of Hampshire.

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

Last week marked the 10th anniversary of the smoking ban across the UK, but sadly the celebration was dampened by the fact that we have yet to see the Government’s new tobacco control plan, which was promised in December 2015. The previous two Health Ministers I have shadowed repeatedly said that we would see the plan shortly, but they failed to set out an updated strategy for working towards a smoke-free society. I welcome the Minister to his new post—we have worked well together in the past on the all-party parliamentary group on breast cancer—and I am hoping that, although he has not yet given us a date for the plan, he will be able to give us an indication. Is it going to be published before Christmas?

[Steve Brine]

I thank my hon. Friend for her question. I think I can call her that; we have worked closely together in the past. I am new to my ministerial post, but I have been through the plan, and it is I who has to stand up and defend it. I want to be sure that it is right and that I am as happy with it as everyone else in the Government. My intention is that it will be published before the summer recess.

HIV Treatment

Sharon Hodgson Excerpts

Wednesday 29th March 2017 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mrs Main. I thank the hon. Member for Finchley and Golders Green (Mike Freer) for his excellent chairmanship of the all-party parliamentary group on HIV and AIDS, for securing this important debate and for his comprehensive opening speech. It was a tour de force.

I also thank the other hon. Members who have contributed to the debate. I thank the hon. Members for Strangford (Jim Shannon) and for Linlithgow and East Falkirk (Martyn Day), my right hon. Friend the Member for Exeter (Mr Bradshaw) and my hon. Friends the Members for Hove (Peter Kyle) and for Bristol West (Thangam Debbonaire) for their excellent and knowledgeable speeches and interventions. They will all have given the Minister much to think about.

We have come a long way since the height of the HIV/AIDS epidemic of the 1980s, but that does not mean that we should be complacent in our approach to the disease now. Across the UK, an estimated 101,200 people were living with HIV by the end of 2015; 87% of them had a diagnosis, and 96% of those diagnosed were accessing treatment. Although they are a minority of people in the wider population, they are a significant minority that we cannot let down when it comes to their care and treatment.

The number of people receiving HIV care in 2015 in England was just over 81,000. That is a 73% increase in the number of people accessing HIV care since 2006. In part, that is welcome, as it means that more people are accessing care that can improve their lives, but it also provides us with reasons to ensure the future quality of care provided, and that is the crux of why we are here today to debate this issue.

As the APPG highlighted, it is understood that since the passing and implementation of the Health and Social Care Act 2012, there have been growing complications with the commissioning and provision of HIV services across the healthcare system. In the rest of my contribution, I will touch on the Health and Social Care Act’s impact on HIV services, but I will also expand into other areas, such as the cuts to public health budgets and the worrying trend of decommissioning of HIV services, and finally I will touch on issues regarding PrEP.

Since the passing of the Health and Social Care Act, there has been a significant fragmentation of our NHS and wider health services. During the passage of the Act, Opposition Members felt that it was an unnecessary top-down reorganisation. The case of HIV services proves exactly how that fragmentation is causing consequences for the future of vital services. The creation of CCGs and the devolution of public health to local authorities have fragmented HIV services across various bodies, with no coherent commissioning and oversight. Currently, services are failing to maintain the standard that patients expect. That is down to commissioning responsibility not being clearly defined under the Health and Social Care Act. Although the coalition Government argued that the Act would ensure the streamlining of services, the opposite has clearly been the case for HIV services.

I therefore want to push the Minister on what she is doing to look into the APPG’s recommendations, especially about joint commissioning for support services by NHS England and CCGs, along with co-commissioning of HIV and sexual health services by local authorities and NHS England. Another issue that the Minister must look at—I raise this repeatedly with her—is public health funding. The cuts to services further exacerbate the problems that HIV services face because of commissioning responsibilities being unclear, which is pushing services to walk away from their responsibilities.

I know that the Minister will reference the funding going into regular HIV testing and the promotion of safe sex, along with the HIV innovation fund, but the impact on funding cannot be ignored. Last week, the National AIDS Trust published a report showing that in England, there has been a 28% decrease in the expenditure between 2015-16 and 2016-17. That is on top of the cuts to HIV support services, or decommissioning of said services, in Lambeth, Southwark, Oxfordshire, Portsmouth and Bexley. Although public health budgets are only one part of the funding streams for HIV support, treatment and care, they are nevertheless an important part of the pathway, as cuts to sexual health services more broadly are detrimental to HIV care. The £200 million in-year cut and 3.9% cut year on year will only have a negative impact on the future of all sexual health services, including those for HIV. The Minister must seriously address that false economy, or risk seeing a public health crisis that could easily have been avoided.

[Thangam Debbonaire]

I thank my hon. Friend for the excellent speech that she is making. I want to add my support for what she has just said, and perhaps go a bit further. Does she agree that the Minister needs to address the fact that the failure to address preventive services will only store up costs and problems further down the line, and that when there are cuts to public health grants, those services need to be ring-fenced or protected in some other way so that we are not storing up problems for the future?

[Mrs Hodgson]

I thank my hon. Friend for that helpful intervention. I agree with her absolutely. The whole point of preventive services—HIV and sexual health services are preventive—is to save money, and lives, further down the line. We regularly debate preventive measures for other health issues with the Minister in this Chamber.

There is still a question mark over the future of HIV services, not only because of the cuts that we are seeing now, but because the future of public health budgets after 2018 is not guaranteed. There are also issues with the devolution to local authorities of business rates, which will be used to fund public health spending. The Government have still not published details of how they aim to ensure that public health will continue to be prioritised when that comes into effect. I hope that the Minister will be able to offer clarity today.

PrEP is a highly effective way of protecting someone who does not have HIV from contracting it. As the UK PROUD study showed, it was 86% effective in preventing HIV transmission and, if taken correctly, it has closer to a 100% success rate. That is why it is important that this drug treatment is supported as much as possible. While the announcement on the feasibility study is welcome, questions remain that the Minister must answer. Nearly four months since the trial was announced, we are still none the wiser as to when it will begin, other than that it will begin early in the 2017-18 financial year. I welcome that in her letter to the APPG yesterday the Minister said that the trial would begin in the summer, but I hope she will offer further clarity on when we will know more. There remains an issue with the drug Truvada, which is used in PrEP. For the trial to reach the 10,000 people that it plans to, a generic version of Truvada will need to be used. I am interested to know what conversations the Minister has had with Gilead, and how co-operative it has been to ensure the success of the trial.

Finally, I want to ask the Minister about the concerns that many PROUD participants will run out of their supply of PrEP this week, and that between 350 and 4,000 individuals at the highest risk of HIV will run out of supplies. That is a matter of urgency, and the Minister must address it as a matter of priority. We cannot allow the people who take this drug treatment to be put at risk. Therefore, I hope the Minister will go away today and look at the matter immediately.

These issues are highly important to many people who live with HIV or within those communities where infection rates are more common than in others, as we heard from my hon. Friends the Members for Hove and for Bristol West. I was shocked and surprised to hear that there is four times the normal rate of those people in the community of my hon. Friend the Member for Hove. I am well aware why he is here today to speak for his constituents.

The Government’s mismanaged approach to the NHS’s structures and to wider health services is seeing services fall through the gaps and people’s lives affected, which is exacerbated by short-sighted cuts. It is important that we recognise the work that has already gone into addressing HIV in our society, but accept that we still have a long way to go. We cannot squander these opportunities, as we could see yet another public health crisis due to complacency and failure to step up and address this issue. I hope the Minister has listened carefully to all the contributions to the debate and the seriousness of it, and will go away and do the right thing by the tens of thousands of people living with HIV or at those risk of contracting it, and support them. They should not be let down.

Rare Diseases Strategy

Sharon Hodgson Excerpts

Tuesday 28th March 2017 Westminster Hall

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

It is a pleasure to serve under your chairmanship this afternoon, Mr Pritchard.

I welcome this important debate and I thank the hon. Member for Bath (Ben Howlett) for securing it and for his excellent introduction to it, although I am sorry that I missed the start of his speech because it started four minutes early before my hon. Friends and I were in our places.

I also thank other hon. Members for their contributions this afternoon, including the hon. Member for South Down (Ms Ritchie), my hon. Friend the Member for Cambridge (Daniel Zeichner) and the hon. Member for Linlithgow and East Falkirk (Martyn Day), the spokesman for the Scottish National party, who all made excellent and insightful speeches.

As others have said, here in the UK one in 17 people will be affected by a rare disease at some point in their life, which equates to approximately 3.5 million people in the UK. It cannot go unsaid that those 3.5 million people have a wide range of symptoms, which vary from condition to condition, some of which we have heard about this afternoon. It is clear that there are common experiences that people with these conditions all share. As Rare Disease UK has estimated that it takes on average four years for a patient to receive a diagnosis, it is clear that there are many missed opportunities to help those people living with rare diseases. Each and every person who suffers from a rare disease deserves the necessary support to live a fulfilling life.

That is why it was welcome that in 2013 the coalition Government published their UK-wide strategy for rare diseases, which was seen as heralding a new era in the treatment and care of rare disease patients across all four home nations. The 51 recommendations are all to be welcomed, as they each take us a step further in addressing concerns about the care and treatment of rare diseases, and the strategy’s aim is to make sure that no one gets left behind just because they have a rare disease. It is an aim that Labour welcomes wholeheartedly.

Most of my contribution to this debate will focus on the issues with the implementation of the strategy, but I will take a moment to mention some of the positives. It is welcome to see that the National Institute for Health Research has launched the Rare Diseases Translational Research Collaboration—I will use the acronym, RD-TRC, as it is much easier to say—which aims to empower patients to engage and become involved with research and research funding decisions. To date, the NIHR has invested £4 million in the RD-TRC, and the programme is expected to continue for another five years, with a £5 million investment.

Work has also been done by Public Health England on data recording, to bolster diagnosis and early intervention, and we have also seen Health Education England collaborate with the National School of Healthcare Science to produce two educational videos for healthcare professionals, in order to raise awareness of the problems faced by families who have a child with an undiagnosed condition and the importance of considering whether it is a rare disease. All this work is to be welcomed and should not go unnoticed.

Yet the sticking point in all of this, and the reason why we are here today to debate this issue, is that the Government are digging their heels in and not getting on with drafting an implementation plan, while the other home nations’ Health Departments are making significant strides. That betrays not only those patients living in England who wish this strategy to be properly implemented but the strategy itself, which stated that all four home nations must see the vision behind the strategy become a reality by 2020. It also undermines all the excellent work that I mentioned previously to implement the recommendations.

The strategy was published in 2013 and we are now just three years from the date set for the vision to be realised. However, the all-party group that the hon. Member for Bath so ably chairs has discovered that the Department of Health does not intend to publish an implementation plan, believing that it should be published by the NHS. Yet the NHS has said that it does not intend to do this either, as it does not have responsibility for other arm’s length bodies of the Department of Health. I want to ask the Minister why. I want to know why we are seeing patients and their families caught in this dispute between the NHS and the Department of Health. This situation cannot continue; there are people suffering right now who need this strategy to be implemented correctly.

I have briefly mentioned the report by the all-party group on rare, genetic and undiagnosed conditions on the lack of an implementation plan, but I know that it covers other issues as well, and I will take a moment to touch on some of them. One of the main issues raised was the lack of communication between organisations responsible for implementing the various aspects of the plan, and the failure to provide patients, families, doctors, industry experts and patient organisations with updates on progress of the strategy. That is deeply worrying, as it is important that people are made aware of the issues that affect them so personally. Therefore, it is not surprising that the all-party group heard from more than 300 patients that widespread disillusionment and disappointment had become the common feeling about the strategy, despite the optimism felt when it was published five years ago. The sting in the tail is that there are implementation plans for the strategy across the UK, with the exception of here in England. I share the frustration of the many others who are affected by the Government’s complacency. The Department’s rationale for not providing updates on progress is that patient organisations can disseminate information to patients and families, but it sadly fails to grasp that those organisations and charities are often very small and do not have the resources to pull together updates and send them out.

Also, issues that have not been worked on since the strategy was published have been identified, including prevention and identification of rare diseases, improving care pathways and failing to implement structures that would facilitate collaboration between the four home nations. In his response, I would be grateful if the Minister could provide us with an update on those points and tell us what his Department plans to do to see the recommendations through.

The strategy is now five years old, and although there has been work to see it realised, it has not gone far enough. The failure here is that the Department of Health in England is not fulfilling its duty to draft an implementation plan to realise the visionary goals in the strategy, which undermines the work already under way and hinders any future work. The Minister must set that right, and I hope he plans to do so today. He has the power to rectify the situation and he cannot be complacent when it comes to supporting people living with rare diseases.

We are not talking about a handful of people; many of our own constituents are being failed by the Government, and all they ask for is that the Department of Health do what Departments in the other home nations are doing and provide an implementation plan to enable the strategy to be fully realised and make the impact it was intended to have. I once more thank the hon. Member for Bath. I hope that the debate will make the Minister think again about the Government’s opposition to taking responsibility for a plan, and that he will honour the whole vision of the strategy, instead of cherry-picking from it.

[Mark Pritchard (in the Chair)]

If the Minister does not use all the time allocated—10 minutes is a guide, but clearly there is more time on the clock—it will allow me to call the hon. Member for Bath for a brief winding up, but that is entirely in the Minister’s gift.

Draft Local Authorities (Public Health Functions and Entry to Premises by Local Healthwatch Representatives) (amendment) Regulations 2017

Sharon Hodgson Excerpts

Monday 27th March 2017 General Committees

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

It is a pleasure to serve under your chairmanship, Sir Alan. The Opposition are pleased that the Government have finally brought these regulations before us, especially with the end-date for the mandation of health visitor reviews being so close—it will be in five days’ time, to be exact. I welcome a lot of what the Minister said.

The regulations are welcome as they continue the mandation of health visitor reviews, which are an important part of an early intervention strategy. We will therefore not seek to divide the Committee. However, I have concerns about health visiting and what the regulations will do that I wish to raise with the Minister and on which I seek reassurance.

This year marks 155 years since the start of health visiting, which has had a range of different guises over the years, in 1862. It is important that we protect this long and proud career and give it the support it deserves. It is therefore concerning to see in the provision relating to regulation 5B of the principal regulations a potential watering down of who can do universal health visitor reviews, allowing other qualified health professionals to conduct reviews instead of health visitors. That is concerning when there is anecdotal evidence that health visitors are being told to delegate to other professionals, but are doing so only because they are so overstretched and busy with their huge workloads. That does not mean other health professionals cannot be complementary to the reviews, but the core reviews must be done by health visitors, because they are the specialists and it is their job to do it after being trained to undertake that role.

A health visitor’s role should not be diminished. I hope the Minister agrees and will assure me that she will closely monitor that issue, as I certainly will, to ensure that health visiting is not a diminished profession and that we do not see a reduction in the quality of health visitor reviews. I look forward to her response.

O’Neill Review

Sharon Hodgson Excerpts

Tuesday 7th March 2017 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mr Hollobone. I congratulate the hon. Member for Thirsk and Malton (Kevin Hollinrake) on bringing this important debate to the House. He gave an eloquent and knowledgeable speech clearly setting out the issue and the matters to be discussed following the O’Neill review. I thank him for that.

An estimated 50,000 deaths occur every year due to untreatable infections, rising to 700,000 globally. That is why it is only right that we do all we can to address antibiotic resistance. It is believed that the number of deaths will rise to 10 million a year by 2050 if no significant action is taken. As we have heard from a number of Members, deaths from drug-resistant infections could exceed deaths from cancer.

This is an incredibly timely debate. Only a couple of weeks ago, the World Health Organisation published a list of 12 bacteria for which new antibiotics are now needed. Some strains of bacteria have built-in abilities to find new ways to fight off treatments that can then be passed on to other bacteria via genetic material to make them drug-resistant too. I find it a bit scary to consider what we are up against. This is a battle that we have to win.

I also thank other hon. Members who have spoken in this debate. My hon. Friend the Member for Bristol East (Kerry McCarthy) gave a very knowledgeable speech about the use of antibiotics in farming; other hon. Members touched on the subject as well. I really think we need to get a firm grip on it internationally, with the UK leading the way. Ten other Members spoke in this very active debate: my right hon. Friend the Member for Rother Valley (Sir Kevin Barron), my hon. Friend the Member for Ealing, Southall (Mr Sharma), the hon. Members for Erewash (Maggie Throup), for Bosworth (David Tredinnick), for Glasgow North (Patrick Grady), for Sleaford and North Hykeham (Dr Johnson), for Mole Valley (Sir Paul Beresford), for Strangford (Jim Shannon) and for Stafford (Jeremy Lefroy), and the hon. Member for Linlithgow and East Falkirk (Martyn Day), who speaks for the Scottish National party. Their speeches were all thoughtful and knowledgeable, albeit brief because of time constraints.

I will touch on two key points: raising public awareness, and supporting research and innovation to combat antibiotic resistance. It is generally accepted that antibiotic resistance is a natural process—bacteria naturally evolve to become resistant to certain drugs used to fight them off—but it has been exacerbated by humans. As Dr Hsu of the Singapore Infectious Diseases Initiative has said, the causes come down to

“a single axiom—abuse and overuse of antimicrobial drugs.”

Concerns have also been raised that the development of new antibiotic drugs has dried up, contributing to the situation. According to the World Health Organisation, we are left in a precarious position. The WHO’s director general, Dr Margaret Chan, describes antimicrobial resistance as

“a crisis that must be managed with the utmost urgency.”

That urgency applies here in the UK, too. In 2014, the chief medical officer, Dame Sally Davies, said that

“we could be taken back to a 19th century environment where everyday infections kill us as a result of routine operations.”

We could be taken even further back: as the hon. Member for Thirsk and Malton said, this could be the new black death. That is not as melodramatic a statement as people may first think. Antimicrobial resistance is a really serious problem that we need to address here and now, so that those predictions do not come true.

I do not always do this, as I am sure you have noticed, Mr Hollobone, but I must give credit to David Cameron’s coalition Government, who were global leaders when they announced Lord O’Neill’s review into antimicrobial resistance. The review’s 10 recommendations show just how complex and multifaceted the issue is and how wide-scale the actions needed to address it are. The review’s final report was published in May 2016 and the Government responded at the end of last year, so now is a good time to ask the Government for an update.

One of the review’s key recommendations was to introduce a large-scale global awareness campaign to reduce the demand from patients to be prescribed antibiotics when they are diagnosed with an illness. I am a firm believer in public awareness campaigns relating to health issues, especially cancer. My hon. Friends and I fully support such a campaign for antimicrobial resistance and we want to see the Government working hard to achieve it. The review’s recommendation was for an international awareness campaign, but what does the Minister plan to do here in the UK to complement that international work? That is a pertinent question because a 2015 Wellcome Trust study found that people in the UK did not fully understand antibiotic resistance and how it affects their health. They did not understand that antibiotic resistance is to do with the bacteria in people’s bodies, rather than a lack of antibiotics or the cost of them; it is not just a case of doctors being awkward. I would therefore be grateful if the Minister told us what relatable public awareness campaigns she is planning to ensure that people understand more about the problem and about what they can do personally.

I have already mentioned the problems with combating antibiotic resistance caused by the drying up of innovative developments in drug technologies. The O’Neill review identifies that the low commercial return on research and development for antibiotics makes them less attractive to pharmaceutical companies and reduces the chance of new drugs being developed. To reverse that situation, it recommends considering market entry rewards to encourage companies to develop new or improved drugs, especially in areas of urgent need. I hope the Minister will explore that issue further in her reply.

Public and private funding is being made available to help to combat these issues. On 20 December, the Minister referred to

“international programmes to tackle AMR, including the Fleming fund and the Global AMR innovation fund, which represent more than £300 million of investment over the next five years.”—[Official Report, 20 December 2016; Vol. 618, c. 1294.]

There is also the incredible work of the Longitude Prize, which is in the middle of its competition to develop

“a cheap, accurate, rapid and easy-to-use point of care test kit for bacterial infections”

to help to address antibiotic resistance. That is important work and we support it.

In summary, we cannot afford to get antimicrobial resistance wrong. Millions of lives depend on our tackling it. It is not far away; it is happening right here, right now, and it affects us all, so it is important that we do all we can to address this growing problem, both in the UK and internationally.

[Mr Philip Hollobone (in the Chair)]

If the Minister will be kind enough to finish just after 4.30 pm, that will give Mr Hollinrake time to sum up the debate.

Oral Answers to Questions

Sharon Hodgson Excerpts

Tuesday 7th February 2017 Commons Chamber

[David Mowat]

More information was published on cancer by clinical commissioning groups since the back end of last year than at any time in the history of the NHS. [Interruption.] The hon. Gentleman is right to say that prostate is grouped with neurological cancers in general, and that is the type of surgeon being employed. But the fact is that the Government have been incredibly transparent in terms of information published on cancers.

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

Last Saturday was World Cancer Day. The theme was unity, and I am still wearing my unity band with pride. We must do all we can to beat cancer, yet the Government are coming to their three-year anniversary of not meeting the 62-day wait target. Treatment quickly after diagnosis is crucial for tackling all cancers. Will the Minister outline what he is doing to ensure that that target is once again met so that patients receive timely treatment?

[David Mowat]

The volume has increased greatly, and there are something like 2,000 more people being diagnosed every day. The hon. Lady is right: of the eight cancer standards against which we judge ourselves, we meet seven, and the 62-day one has not been met. We need to do more to achieve that, and the cancer strategy set out a pathway for doing so. We have particularly invested in the early diagnosis component; we have invested £200 million in early diagnosis and getting a 31-day all-clear or referral for treatment. That is the pathway to meeting the 62-day target. She is right to raise this, because it is an important indicator and we need to do better.

Breast Cancer Drugs

Sharon Hodgson Excerpts

Thursday 26th January 2017 Commons Chamber

[Iain Stewart]

I agree with the hon. Lady. I have not had any personal discussions with Roche; I can only refer to and take at face value the briefing note that it sent me early this morning, which seemed to represent a genuine wish to negotiate with NICE and get the drug down to an acceptable price. I hope the debate is joined in that spirit.

Perhaps it is appropriate to mention now something I was going to bring up later in my speech: one area that needs to be examined is the pharmaceutical price regulation scheme, which is a five-year voluntary contract between the pharmaceutical companies and NICE. If I understand how it is intended to work, the pharmaceutical companies will underwrite any overspend for a particular drug. For various reasons that does not seem to be working in practice. I urge my hon. Friend the Minister to look at that point, which has been made by some in the industry.

In the case of my constituent, Mrs Mears, when her current medication ceases to be effective, Kadcyla is the only option. Although she has responded well to the current treatment, there is every likelihood, and her consultant agrees, that she will respond in a similarly positive way to Kadcyla. There is every chance that she would enjoy the benefits of that drug for a time well in excess of the expected nine months. I would therefore argue that a blanket ban on the drug would be inappropriate. At the very least, there should be some flexibility in the system to make the drug available to people such as my constituent, for whom there is a very high probability that it would have more than the expected benefit. She has responded so well to her existing drug, and if her life could be extended considerably by Kadcyla, that would allow more research to be done on the efficacy of her existing medication, which would be an important body of evidence to add to the appraisal process.

The hon. Member for Mitcham and Morden rightly said that the prescription of drugs should be based solely on clinical need and no other factor, but when I met Mrs Mears, she made one point to me that I could not really answer. Through her life, she worked professionally in the criminal justice system and has done a lot of work saving the public purse money by innovating programmes to reduce youth offending. That value cannot be calculated, but she made the point to me, “At the one point in my life that I need something back from this country, it is being denied to me.” I really could not give an answer to that. I hope that something can be done to make the drug available.

The NICE decision is provisional. I contributed to the consultation and I hope that when NICE meets next—in, I think, early March—it will review the decision.

I know that NHS resources are finite and that there are many competing demands on its budget. The debate on the overall size of the NHS budget must be a matter for another time, but cases such as this illustrate the need to use what resources we have as efficiently as possible. Just before I met Mrs Mears the other week, I happened to see a story in the media that really made my blood boil. I do not pretend to be an expert on the prescription system, but I simply put this on the table. The story reported that the NHS wastes about £80 million per annum by prescribing simple painkillers such as paracetamol, which can be bought in a supermarket for 20p or 30p a packet. Those prescriptions go through the usual prescription system and cost £80 million a year. Surely there is a way of getting around that, perhaps by giving GP practices a stock of basic painkillers. I am not asking for people who get free prescriptions to start paying but, surely, there is a way for doctors to issue them when it is appropriate to do so, and stop this merry-go-round of paperwork that costs many millions of pounds.

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

The hon. Gentleman is making a very valuable point. Does he agree that one way around this issue would be to have prescribing pharmacists who could give out medications such as those basic painkillers, without the need for the patient even to see their GP, which would also free up valuable GP time?

[Iain Stewart]

That sounds an eminently sensible suggestion. As I say, I do not pretend to be an expert on the system, but, surely, something like that could be done. Then the money saved could be added to the cancer drugs fund and make more drugs such as Kadcyla available to people who need them.

I will end my comments, as I know there are many Members who want to contribute. Please let us try to do everything we can in this House to encourage NICE and Roche to look at the overall system and to look in particular at this drug. It means so much to my constituent and to many others up and down the country. I hope that this debate has that effect. I conclude where I started, by congratulating the hon. Member for Mitcham and Morden on securing it.

--- Later in debate ---

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

I thank my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh) for securing this debate, following the very sad news that her friend Samantha Heath, who had been receiving this life-extending treatment, had heard from NICE that it was being taken away from her. I am pleased that she was able to secure this important debate through the Backbench Business Committee.

I also thank all colleagues who have attended the debate and made excellent speeches, sharing with us their experiences and thoughts, including the hon. Members for Milton Keynes South (Iain Stewart), for Portsmouth South (Mrs Drummond), for Louth and Horncastle (Victoria Atkins) and for Wycombe (Mr Baker), my hon. Friends the Members for Torfaen (Nick Thomas-Symonds) and for Wythenshawe and Sale East (Mike Kane) and the hon. Member for Linlithgow and East Falkirk (Martyn Day), who spoke for the SNP. I am sure that the Minister has been given lots to think about, and I look forward to her response shortly. I also thank Breast Cancer Now for its work campaigning on this matter, along with Breast Cancer Care for its continued dedication and its support and advocacy for individuals with secondary breast cancer.

In my contribution, I will first briefly establish the documented and perceived benefits of Kadcyla, and then, building on that, discuss the broader issues around the provision of off-patent drugs, before moving on to present the problems with determining the funding of a drug based principally on its cost-effectiveness as judged by NICE.

Kadcyla’s continued funding through the cancer drugs fund in 2015 was a great success for patients and patient advocates. At the time, the value of the drug was recognised and the concession was made that, despite its high cost, its positive impact was worth the funding it needed. Yet just over a year later, the alterations to the cancer drugs fund have prevented the future funding of this drug, along with, potentially, that of a number of other secondary breast cancer drugs such as palbociclib and Perjeta—I hope that I pronounced those correctly—as it moves towards becoming a funding mechanism for under-researched but innovative drugs with cost and value as a principal driver, and away from its original principle, which was to finance drugs that were too expensive to be recommended by NICE but proved effective in treating cancer patients.

We can all agree that patients have benefited significantly since the introduction of the cancer drugs fund, but the progress that has been made in recent years in improving access to cancer drugs is now at risk. That is unsurprising, given the cash-strapped state of the national health service—we have discussed that in the House recently in the past few weeks—which faces pressures to provide these costly drugs that are developed by large pharmaceutical companies, and is forced to consider costs rather than clinical need. I hope that the Minister will tell us whether those concerns have been assessed, and how she plans to address them. We have heard a number of good suggestions today about how funding may be redirected.

[Mary Glindon (North Tyneside) (Lab)]

Is not the situation made all the more poignant by the fact that since 2001, the incidence of breast cancer has been rising by 9% every year?

[Mrs Hodgson]

That is a very good point. It may be that more and more people are coming forward and being diagnosed, but, as my hon. Friend says, this will clearly become more of an issue, not less of an issue, in the years to come.

As we have heard today, it is estimated that Kadcyla benefits 1,200 women every year in England alone, and that on average it can increase the length of a woman’s life by six months, although reports suggest that in the case of some women that can stretch into years. Even if it is measured in months, however, the extra time is surely priceless to the women and families involved. I speak from personal experience, as I lost my mother-in-law to secondary breast cancer 20 years ago this year, when my children were very small. I know that she fought for every extra week and day in the end, and that she would have given anything for an extra six months to spend with her grandchildren. We all wanted that little bit longer for her. For all those 1,200 women, that extra time is time with their families. It means seeing their children reach perhaps one more milestone: starting school or university, getting married, or even giving them a grandchild. What is the cost of such moments, such memories, which are so precious and which help families so much with what, ultimately and inevitably, will follow?

[Iain Stewart]

The hon. Lady has made a powerful point. In the case of the most aggressive cancers, the period between diagnosis and death can be very short. As she says, any extension of life enabling women to celebrate family events, or anything else, is incredibly important, and we should not lose sight of that.

[Mrs Hodgson]

I agree. What price can be put on those precious months?

[Thangam Debbonaire (Bristol West) (Lab)]

I have some investment in this. My own experience of breast cancer treatment over the last two years has left me passionate about the issue of prevention and early diagnosis. Will my hon. Friend join me in not just thanking the breast cancer charities—as she has already done—but calling on all Members to spread the word among all the women they know that they must learn how to examine their breasts? I learnt how to do it from a comic sketch in a television programme: that is how I diagnosed my lump. I want everyone to learn how to do it, and also to learn what they can do to help prevent breast cancer, because, although there is no magic prevention method, there are ways of reducing the risk.

--- Later in debate ---

[Mrs Hodgson]

Although we have not so far touched on prevention or early diagnosis, they are vital issues. We have discussed them in the House on many occasions, but they can never be discussed too often, and I am grateful to my hon. Friend for raising them. Let me add that I am happy every day to see her back in this place, and doing so well.

What also stands out with Kadcyla is the reduced side effects, as we have heard, as opposed to alternative breast cancer treatments, the side effects of which can include the inducement of osteoporosis and an increased risk of blood clots. As some colleagues will, sadly, know first-hand or through experiences of family and friends or constituents, the side effects of some cancer treatments can be truly awful, and in some cases are daunting enough to prevent the acceptance of further treatment entirely. It is a common perception that women make the decision to end their treatment much earlier than planned, despite it prolonging their life sometimes. That is because they feel the suffering they are enduring as a result of the treatment is not worth the additional life it is providing to them, because it is all about the quality of that life.

Research conducted by Genentech in the United States on the side effects of Kadcyla found that less than 5% of women taking the treatment suffered any hair loss. Through my work as co-chair of the all-party group on breast cancer, I know that hair loss can be a highly traumatic experience for women undergoing cancer treatment and is one of the most discussed side effects of cancer treatment in general. Given that in this debate we are discussing the treatment of secondary breast cancer, which is ultimately a terminal disease, the best outcome we can offer through treatment is both the extension of life and the preservation of the quality of life enjoyed pre-diagnosis. Therefore, because Kadcyla causes fewer side effects, it represents a treatment that can effectively achieve not only an extension of life, but the preservation of some of that quality of life enjoyed by these women pre-diagnosis. So I look forward to hearing from the Minister about what she is doing to ensure women will benefit from this vital treatment in the future.

I will now move on to how we can better support off-patent drugs, especially for breast cancer. Drug patents typically last for 20 years—although sometimes only 10 years—and at the end of that patent there is very little incentive for the drugs to be licensed for use in another indication. These drugs are still clinically effective in many cases and can be a low-cost effective treatment, but currently the NHS has no method for making them routinely available.

Bisphosphonates are one such example of an off-patent drug that is not being made universally available to patients, despite evidence showing its effectiveness. It is estimated that, if given to the entire eligible population, this drug could prevent one in 10 breast cancer deaths. It is therefore concerning that research conducted by the UK Breast Cancer Group found that only 24% of breast cancer clinicians were offering bisphosphonates to patients. Solving this issue therefore provides an opportunity to improve breast cancer survival rates, and it is something that I hope the Minister will consider carefully.

I want to finish by discussing the cost-effectiveness of drugs. Currently NICE measures cost-effectiveness using quality-adjusted life years—QALY—and one QALY is equal to one year of life in perfect health. As I am sure colleagues will agree, it is almost impossible to objectively measure someone’s quality of life, and there are questions surrounding the morality of attempting to do so, as raised in NICE’s “Social value judgements” paper on the moral evaluation of drugs.

As is so often the case in these debates, a clear cause of the problem lies with how NICE approves drugs. At the last general election, Labour proposed a top-to-bottom reform of NICE, ensuring that drug acceptance and funding is determined solely by clinical need, not with cost or value considerations. This debate shows there is clearly a need to re-address these issues.

As I have already mentioned, Kadcyla patients tend to experience considerably fewer side effects, and this can potentially have a positive impact on their ability to enjoy a higher quality of life post-diagnosis. Because of practicality and cost implications, it is almost impossible for NICE to comprehensively and effectively measure this exact quality of life. However, what we can say, without a doubt, is that these individuals would suffer a lower quality of life without Kadcyla, and this, I believe, deserves more attention and value in the process of drug approval and funding.

The current funding of drugs is becoming based on the cost-effectiveness of a drug, rather than clinical need, yet, as this debate has shown, it should not be the final deciding factor as it disregards very personal reasons for many people who rely upon drug treatments. Kadcyla has benefited many women during their time living with a terminal disease, and has now been pulled, devastatingly, out of their reach.

It is the Minister who has the levers of power to address the problems in the system which is letting these women down. Members from across this Chamber have eloquently made their case to the Minister. I hope she has listened—I am sure she has—and will give these women and their families some reassurances today.

Accelerated Access Review

Sharon Hodgson Excerpts

Tuesday 13th December 2016 Westminster Hall

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

It is an honour to serve under your chairmanship, Sir Alan. I thank my hon. Friend the Member for Dudley North (Ian Austin) for securing this important debate. I note that as he said, it is just over a year since he first brought to the House a debate on cystic fibrosis.

I appreciate all hon. Members who have attended and spoken in this debate to show their support for the cause; it is one that we must urgently get right. Members have shared many moving cases involving their constituents whose lives Orkambi could save and would certainly transform. My hon. Friend the Member for Dudley North mentioned Carly Jeavons and Sam and Rob, the parents of Daisy. The hon. Member for Strangford (Jim Shannon) spoke about Evie-May, and my hon. Friend the Member for Bristol East (Kerry McCarthy) mentioned her niece Maisie. My right hon. Friend the Member for Leigh (Andy Burnham) spoke about his office manager Karen Aspinall and her son, as well as Philip and his sister Melissa, who sadly died. Philip believes that Orkambi would have helped his sister and would certainly help him, as he also suffers from cystic fibrosis. Those people believe that their lives would be transformed by Orkambi. I believe that too, and the evidence supports it, as we have heard in detail.

I thank all hon. Members who have spoken in this debate, including the hon. Member for St Ives (Derek Thomas), the hon. Member for Bath (Ben Howlett) and my hon. Friend the Member for Cambridge (Daniel Zeichner), for their excellent contributions, as well as the many others who have made valuable interventions. I also thank the Cystic Fibrosis Trust for its dedicated campaigning on the issue, and the 20,000 people who have been involved in its survey, in the digital debate here in Parliament, and in petitions and e-action. The concerns and the need for action are clear, and it is up to the Minister to give all those people beyond this place the answers that they need.

In my contribution, I will set out why the Opposition want to see the Government do more on innovative drugs, through case studies involving Orkambi. I will touch on issues of access to Orkambi and other drugs for those living with cystic fibrosis and expand into the recommendations of the accelerated access review, which can do much to address many of the issues involving access to new drugs.

Although it is welcome that the prescription drug Kalydeco was given the go-ahead by NHS England last week for two to five-year-olds as part of re-prioritisation, Orkambi remains an issue. There is currently a deadlock in negotiations between the pharmaceutical company Vertex, the Government and NHS England for the drug to be accessible to the 2,700 people who stand to benefit from it. As we have heard in detail today, that is all down to rejection of the drug under NICE’s appraisal system because there is a lack of long-term data. Although it is welcome that NICE recognises the treatment as effective in managing cystic fibrosis, it is clear that we desperately need a new system under which drugs can be better accessed, especially those that show that they can benefit patients. We have also heard about new data that NICE did not take into account and that would have showed 42% effectiveness.

Orkambi has been shown to halve the amount of hospitalisation of cystic fibrosis sufferers, and 96-week data published recently showed that it can help to slow lung function decline by 42%. The data are also backed up by anecdotal evidence from people who have accessed Orkambi through the compassionate use programme and are beginning to report transformations in their health—some are reporting enough improvement to come off the lung transplant list. That information is all positive. It should be made better available for consideration as part of the appraisal process; it should also form part of the negotiations between Vertex, the Government and NHS England. However, when we see a deadlock, all of that information is for naught. Thousands of people are suffering irreversible lung damage that could be stopped if the current impasse between those around the negotiating table was broken. Those who will suffer the most are stuck in the middle.

It is up to the Government to facilitate the end of the deadlock so that people can access Orkambi and see their lives transformed. One way to do that is to begin the job of implementing the recommendations set out in the accelerated access review, which the Opposition welcome. The goal of speeding up access to drugs by cutting four years off the time needed to bring new medicines to patients is something that we should all welcome; we need to see whether it can be achieved. The review has the potential to change the philosophy of the NHS in line with the five-year forward view, but also to help to maintain our global lead in life sciences. The recommendations set out in its final report have the potential to transform how we provide drugs and treatments, ensuring that we see innovation in drugs, diagnostic tools and healthcare developments. However, there still remain issues around thresholds for new drugs, which NICE and NHS England are currently consulting on. I understand that some associations and charities have raised concerns about that, and I hope that the Minister will update us on some of those discussions.

[Mark Durkan (Foyle) (SDLP)]

My hon. Friend is right to be so positive about many aspects of the accelerated access review. However, as she has mentioned, there are concerns that new definitional ruts could be created by some of the terms of the review, which could lead to some patients and some promising drugs being trapped in exactly the sort of deadlock that she has described.

[Mrs Hodgson]

My hon. Friend is right to raise those concerns. We do not want to move into a new system that will create new unintended consequences. Perhaps the Minister will touch on that in his speech.

Although some are calling for interim solutions to help people who are stuck waiting for the accelerated access review’s recommendations to be implemented, it is also important that the Government get on with implementing those changes. The review was announced more than a year ago and was published two months ago now. It is important to remember that the transformation that we all want to see will not happen straight away, but it is still right that we keep up the pressure for the recommendations to be implemented. There are many such recommendations, and I hope that the Minister will be able to update us today on the progress on each of them. There are two in particular that illustrate what can be done to resolve the deadlock around Orkambi—the immediate establishment of an accelerated access partnership and the setting up of a new flexible strategic commercial unit.

The accelerated access partnership is one way in which, through co-ordination and collaboration across the system, we could see drugs brought on to the market more quickly to benefit patients who need access to them. I would be interested to hear from the Minister what progress has been made on its creation, especially in conjunction with the issues surrounding the deadlock on Orkambi.

It is clear that the strategic commercial unit could help to benefit those who wish to see Orkambi offered on the NHS. The unit could work with those involved in this dispute to end the current deadlock through facilitation of the flexibility and transformational change promised by the accelerated access review. That would go some way towards helping to access data on drugs such as Orkambi and getting them out to patients. There is a willingness out there for that flexibility to be brought into the system; for example, the Cystic Fibrosis Trust has offered to use the UK cystic fibrosis registry to help to provide essential data that can help to prove how effective drugs can be and what more needs to be done. We have already heard how substantial that registry is; it includes 99% of sufferers. I understand that the trust’s offer has been welcomed by all sides in the negotiations but is blocked due to the lack of progress in implementing the changes set out in the review. I hope that the Minister will give us some clarity on when the unit will be created and when we can see a culture shift within the system that will allow for flexibility to accept data and information that show how much effect these drugs have on people’s lives.

[Dr Philippa Whitford]

Does the hon. Lady share my concern about drugs for other conditions, such as sofosbuvir for hepatitis C? Even after they get NICE approval, those more expensive drugs are now being rationed at the NHS England stage. At the moment we are fighting to get through NICE, but it needs to be a smooth path all the way through.

[Mrs Hodgson]

The cost of drugs sometimes leads the NHS into the terrible and unfortunate situation in which rationing seems to become the norm. There can also be a postcode lottery, which is another element that we need to look at. The price of drugs really is the crux of the issue.

In conclusion, I hope that the Minister will offer some insight into the progress being made on the recommendations of the accelerated access review. The case of Orkambi can help to drive through these changes and to end this deadlock, which, as we have heard, is causing unnecessary suffering for those living with cystic fibrosis. The review has established a space for change and for patients to access new and innovative drugs and treatments. It is important that there is no stalling or delay in transforming the system, because people’s lives depend on the changes called for by the review. I am sure that the Minister will keep that in mind when he goes back to his officials.