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Late Stage Hepatitis C

Volume 590: debated on Tuesday 6 January 2015

I am sure that I speak for everyone present when I say that it is an honour to be before you, Mr Gray. Let me also say that if I could have chosen any Minister to respond to this debate, it would have been the Minister who is here, because her record in this field, as in many others, is exemplary. I am delighted to be able to raise these points in such company.

Hepatitis C is something that is still a mystery to a large number of people. Most people know that in the classical Greek, hepatitis refers to the fire in the blood, and it is considered to be one of those blood-borne diseases of which we know very little because of the multiplicity of presentations. In fact, hepatitis C, the subject of today’s debate, was originally referred to as hepatitis non-A or B, because nobody knew exactly what it was. However, we now know what it is, and it is a great tragedy that today 215,000 people are chronically affected by hepatitis C in the United Kingdom. Of that number, 160,000 are in England.

The majority of patients have become infected through exposure to contaminated blood in various ways. I know that some hon. Members present wish to raise the issue of blood contamination in the health service, but in many cases, where it comes from is not as significant today as where we are going with it. A whole range of issues lead to contraction of hepatitis C.

I am very pleased that my hon. Friend has obtained this debate. Unfortunately, my constituency has a high prevalence of hepatitis C. He mentioned contaminated blood —I know he wants to talk about other issues—and 30,000 people have been infected since the 1970s through contaminated NHS blood products. Perhaps, like me, he hopes that the Minister will say something about that and whether there will be a final settlement before the general election—whether something will finally be done to help those people who suffer from this disease through no fault of their own, but through negligence by Government.

I profoundly endorse my hon. Friend’s comments and I very much hope that what he refers to will be the outcome. It is a cruel irony if one presents at a hospital in search of good health, and ends up iller than when one went in. I certainly will refer to that later.

One of the highest levels of hepatitis C infection in this country is from injecting drugs. That is part of the stereotype, and it is the case that 49% of identified hepatitis C cases in England, 34% in Northern Ireland and 33% in Wales are from that source. There are significant public health risks of further transmission if hepatitis C is left untreated. This is the astonishing and terrifying aspect of hepatitis C, and if we achieve nothing else today, we can at least ventilate the issue and, I hope, bring it to the attention of a few more people in the country. Hepatitis C is one of the most sinister blood-borne diseases, in that it in effect lies dormant for 20 to 30 years in the blood. A person who lived a fairly rackety life in the 1960s may have no idea that they have been infected with hepatitis C. It may present itself 30 years later, when the symptoms of lassitude, fatigue, inexplicable tiredness lead the individual to go and see their medical practitioner; and it is a simple blood test—it does not require anything other than a spot of blood on a piece of paper—that reveals it. The sinister, long-standing, dormant nature of hepatitis C is something to which I wish to refer.

I congratulate my hon. Friend on securing an important debate. Does he agree that one problem that we face in tackling hepatitis C—he has outlined the scale of the problem; more than 200,000 people suffer from it—is the mixed messages coming from the Department of Health and, in particular, the information provided in an earlier debate in this Chamber by the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter), who said that hepatitis C is not curable when in fact, with appropriate treatments, the cure rates are between 80% and 95%?

One would almost think that my hon. Friend the Member for Easington (Grahame M. Morris) had had sight of my notes, because there will be, in a few moments, a section on that. The bullet point, my aide-mémoire, my prompt, is simply the two words “Good news”, because there is good news. One reason why we are having this debate is to tell people that there is a cure—a very successful rate of cure—but also to say that we need people to be able to access that and we need, above all, to have a plan.

Let me explain why I called for this debate. Many years ago, I had a private Member’s Bill on presumed consent for organ transplants. At that time, the then Secretary of State for Health, rather aggressively, said that it was not the business of the state to decide what happens to a person’s body after they have died. Lord Reid, as he now is, apologised to me afterwards for being quite aggressive, but one thing that it brought home to me was the difficulty of finding livers for transplant. Hepatitis C leads to cirrhosis of the liver in virtually every case, and in some cases that can then become acute liver failure, in which case one of the treatments would be a liver transplant. People think that is an easy solution when in fact it is not. As I discovered, livers for transplant are very difficult to get hold of—very hard to access.

Modern medical advances have opened up a completely new world. I will say more about that, and particularly the new therapies, in a moment, but there is still massive and widespread ignorance, and what I am asking the Minister for today is to have a plan for addressing that. I am reluctant, as is anybody, to give over-much credit to the Scottish Parliament, but on this occasion I have to say that the Scottish plan, the “Hepatitis C Action Plan for Scotland”, which is now six years old, does, if I may say so gently, represent a far more comprehensive and overarching strategy than we currently have in England.

On the issue of strategy, I am honoured to be joined here today by my friend and constituency neighbour, my hon. Friend the Member for Ealing, Southall (Mr Sharma), to whom I will happily give way.

I congratulate my hon. Friend on securing this very important debate. Does he agree that there is a large south Asian community living in the UK who, due to many cultural and other barriers, are not getting treatment? I was organising roadshows in London with the Hepatitis C Trust to raise awareness and to offer free testing. Does he agree that if the NHS and the Government take initiatives to promote free testing, people will be able to get an early diagnosis and, we hope, secure treatment?

I am more than delighted to give credit to the Hepatitis C Trust, which has done exceptionally good work—I have been to a number of its meetings—but also to my hon. Friend and neighbour in Ealing. His document, “The Challenge of Hepatitis C for the South Asian Community”, will be formally launched next week. I believe that the Minister has a copy; if not, I will provide her with one almost immediately. At that launch, the issues that my hon. Friend mentioned will be widely discussed and information widely circulated. It is important to realise why there is such a high prevalence of hepatitis C in the south Asian community. Bizarrely, it is a consequence of improved health provision in that area. There are parts of the world where there is virtually no formal, structured health provision and there is no hepatitis C or, if there is, it is a minute amount, brought in externally. In south Asia, the health service is increasing its outreach: more and more people are accessing it and making use of it. However, the medical advances are not keeping pace with the advances in sterile treatment and sterile methods prevailing in the rest of the world. So, bizarrely, although there is considerable health provision in south Asia, it is not quite there yet in terms of providing a sterile environment and avoiding transmission, whereas other parts of the world have not even reached that level.

My hon. Friend did so reluctantly, but he will, I know, join me in congratulating the Welsh Government on their work on the consent issue. The serious point was made earlier about those who suffered contamination in the NHS in the ’60s, ’70s and ’80s. Does he agree with me—the Minister may want to respond to this—that we need a UK-wide approach to the matter so that compensation can be achieved for those who have been suffering for decades as a result of that contamination?

I enthusiastically endorse the approach of the Welsh Assembly Government on the matter, and their efforts have been widely respected and appreciated. One of the things that I seek today is precisely such an overarching, UK-wide strategy. It is important to note that the United Kingdom is the only country in Europe that is showing an increase in liver disease. All the statistics indicate that cases of liver disease, particularly hepatitis C, will continue to increase until they peak in about 2030. It is hoped that in 2030 they will tail off, partly because if we backtrack 20 or 30 years to the turn of the century, people had a bit more knowledge and understanding. One hopes that debates such as this will extend that knowledge and information outwards.

On that point, I completely agree that we need an overarching national plan and strategy as in Wales and Scotland, but is there not an obligation on the health and wellbeing boards, as part of their joint strategic needs assessment? In my region, my constituency has the highest incidence of hepatitis C, which is often associated with high levels of poverty and deprivation, but less than half of the health and wellbeing boards in our region identify it as any sort of priority.

I knew my hon. Friend’s predecessor very well, and we discussed the matter at the time of my Bill on presumed consent. I entirely endorse my hon. Friend’s comments about the health issues that affect his constituency, and I will come to precisely that point later when I refer to clinical commissioning groups.

On the question of how lethal hepatitis C is, there are a range of brand new therapies, many of which are moving rapidly through the health system. Treatments such as daclatasvir and sofosbuvir provide shorter courses of orally administered treatment with fewer side effects than previous treatments. Traditionally, people with hepatitis C have tended to be given treatments such as interferon or ribavarin, which are partly injected intramuscularly and partly oral, and which have some pretty horrific side effects. I made it my business to go and speak to the practice nurse at the hospital across the river who deals with such cases and supervises the courses of treatment. I heard the rather chilling comment that the side effects of interferon included not only nausea, dizziness, sickness and fatigue but nightmares, depression and occasionally suicide.

We have moved on a great deal, and we are no longer talking about purely an interferon or ribavarin treatment. Modern treatments do not cause the awful problems of anaemia and skin reactions that the older treatments did. I give credit to companies such as Bristol-Myers Squibb and others that have undertaken groundbreaking work in the area. Treatment used to take 48 weeks, and it is incredibly difficult to work or even simply to endure while receiving the treatment. The treatment cycle for the new treatments lasts 12 to 14 weeks, which is quite incredible and much more attainable. We reckon that 10% of people who are HIV-positive also have hepatitis C, and the new course of treatment is particularly effective in those cases. Patients will almost certainly continue their course of treatment if it is shorter and less painful. I do not have time to go fully into the economic benefits of somebody being able to remain economically active while they have hepatitis C, but under the new treatments, there is absolutely no reason why a person should not continue in employment, providing a useful function and benefiting the state.

The real difficulty is late diagnosis. The benefits of early diagnosis to the NHS and to the patient are self-evident. If patients do not receive early treatment, we can see the occurrence of cirrhosis, liver cancer and even the need for transplants. If we could only address the issue of early diagnosis, it would be not only cost-effective but good for the humanity of the individual. That is one of the reasons why I am particularly pressing for early diagnosis.

I have mentioned hepatitis A, B and C, and within each of those are genotypes that have different characteristics. There tend to be four different genotypes within hepatitis C, which are known as 1, 2, 3 and 4. Genotype 1 is typically associated with intravenous drug users, and my hon. Friend the Member for Ealing, Southall referred at great length and with considerable knowledge to genotype 3 at the recent launch of the programme of treatment for the south Asian community. Bizarrely, genotype 1, which was supposed to be the hardest to treat, has turned out to be one of the easier to treat. However, genotype 3, of which the opposite was the impression, is becoming extremely hard to treat. That is one of the reasons why “The Challenge of Hepatitis C for the South Asian Community” is all the more important. One way to deal with hepatitis C is to wait until the symptoms present, but the symptoms are very difficult, because there is no typical symptom of someone who has liver disease. Most commonly, the symptoms will be things such as lassitude and fatigue, but there can be numerous other factors.

I have mentioned the hepatitis strategy in Scotland. The effect of that strategy has been to improve access to treatment from 10% to 20% through better integration among health care providers. Of course, I understand that there is a smaller population in Scotland. People often talk about the situation in the Republic of Ireland, which has a very good identification programme. The reason for that is that there is only one place in the entire Republic of Ireland where someone can get the test, which happens to be in the Dublin health district, so all the data are gathered in one place. In GB, the United Kingdom and England there are a multiplicity of areas, so it is harder to get hold of and keep such data.

That brings us to the hepatitis framework document. I am reluctant to criticise the Minister, even tangentially, because she is a good person. However, the document is a little bit overdue. I think we were promised it at the beginning of the year. I blame no one for that; the Government have other matters to deal with, and I know the Minister has been working extremely hard. I do not think anyone would disagree, however, that we are due that document.

There are a number of questions that I would like to raise as we flesh out the shape of that document. What exactly is the timetable for its presentation and implementation? Will there be targets in it? The previous documents have not contained targets. What about the role of the clinical commissioning groups? When the document was first mooted, CCGs were not the powerful agency they are now. There will be no point in having some sort of strategy if we do not address the questions of funding streams and co-commissioning. That will almost certainly happen, and we need to know where we are. We cannot revert to a situation whereby a particular area provides a particular course of treatment that is denied to someone in another area.

Who will be involved with the document? Perhaps it is an illness of politicians that we often take refuge in strategy when implementation becomes too difficult, but a working party can be a useful thing. As part of the Government’s strategy, will they consider the establishment of a working party, which might include the Association of the British Pharmaceutical Industry, Professor Graham Foster from Queen Mary, university of London—the pre-eminent diagnostician in the area—patients’ groups and the Hepatitis C Trust? I mentioned Bristol-Myers Squibb earlier, and I have no financial or other interests in the company, but I admire people who can produce good, life-saving products and I think that such people should be involved.

We need to have a strategy. I would like to suggest that, first of all, the strategy should improve outcomes for people with hepatitis C. That may seem obvious, but let us get it down on the record. We should improve the prevention strategy. We need to tell people that if they get a tattoo in Thailand, it is not enough that the needle and the syringe are clean if the bowl of ink is not. That happens to people. I will keep my shirt and jacket on, but if I did not, Members would see a large number of tattoos up and down my arms that were mostly inflicted on me in Hong Kong in the ’60s. At that time we did not consider the sterile nature of tattoos. People nowadays should be savvier, wiser and more aware, but we need to tell them.

Above all, we need early diagnosis and prompt treatment, which will not only save lives and money but improve the health of the nation. It will improve on an individual, collective and community basis. We have an opportunity, because there is a coming together of a whole range of different streams: advances in medical science, the recognition of the scale of the problem and the possibility of a solution. We are also in a fortunate position because the Minister is extremely sympathetic to this issue.

It is a pleasure to serve under your chairmanship, Mr Gray. I thank the hon. Member for Ealing North (Stephen Pound) for his kind words and congratulate him on securing this important debate. Hepatitis is a significant health issue that has been overshadowed by others for too long, in part because of many of the people who are most affected, so I welcome this opportunity to discuss it. In nine minutes I cannot possibly respond to all the points that have been made, so I will say straight away that I am going to put the issue of contaminated blood to one side as there will probably be another debate on that at some point. Work is ongoing with regard to previous problems with contaminated blood in the NHS. We are still awaiting the findings of Lord Penrose’s much delayed inquiry, which, as it addresses pre-devolution issues, is highly relevant. Nevertheless, I must put that issue to one side.

I cannot take an intervention on that point because I must deal with the rest of the debate.

On presumed consent, within the past year we have had two good, thorough debates in this Chamber on issues of organ donation and consent. It is a very interesting area of discussion. I am watching the Welsh experience with interest; I do not dismiss it, but it is very complex. I would be happy to debate it at any time with any Member because it is a topic to which I have given quite a lot of thought and consideration.

I pay tribute to the Hepatitis C Trust for its work. More recently, I have met the Hepatitis C Coalition, which has impressed on me with great force some of the issues that it wishes to see addressed—issues that were picked up by the hon. Member for Ealing North.

The NICE appraisal of the first of the new hep C therapies is due very soon, so this debate is timely. Understandably a lot of the focus is on the new therapies, but focus on prevention runs right through the NHS long-term strategy. That is highly relevant because if people are to be treated with good, new and expensive therapies, it is important to address issues such as re-infection rates and good public health prevention. Members should be in no doubt about the Government’s commitment, which I suspect would be shared by any Government, to reducing the big killers—the main reasons for premature mortality in our country—one of which is liver disease. We cannot tackle the big killers if we are not tackling hepatitis C. We are clear that the contribution that tackling hepatitis C can make to reducing current rates of end-stage liver disease is an important part of any premature mortality strategy.

Will the Minister take this opportunity to put on record the fact that hepatitis C is indeed curable and clear up any misunderstandings inadvertently created by her predecessor?

I have read the transcript of the previous debate and dealt with some of the issues subsequently raised in correspondence, so there is no need to go over that again. I am well aware of the issue.

The single biggest risk group for hepatitis C is people who inject drugs, or have done so in the past. Public Health England estimates that such people comprise about 90% of all those infected in England. There are also high rates of hepatitis C among the prison population, which presents significant challenges for the NHS, particularly in terms of re-infection and changing risky behaviours. We obviously need to prioritise making the best possible treatment available to people who are suffering the worst ill health. From a public health perspective, the starting point must be prevention. Some of the new treatments will clearly be focused on people who are the most ill. Although it is right to focus on the exciting opportunities offered by new drugs and treatments, we must not lose sight of the fact that we have to make sustained progress on reducing infection in the first place. I therefore welcome the emphasis on prevention in NHS England’s five-year forward view.

Public Health England has been working with drug treatment services to improve health promotion resources for injecting drug users and those sharing needles, and to increase coverage of opiate substitution therapies and needle syringe exchange programmes. Joined-up drug treatment services commissioned by local authorities are important. We are very conscious of the need to raise the priority of hep C in local authorities and their joint strategic needs assessments—I note that it is mentioned in Ealing’s, but it is not mentioned by some authorities that face a significant challenge. That is one reason why, early this year, I will host a joint hepatitis C and tuberculosis summit with elected members from those local authorities with the highest rates of both diseases in England. The aim of the summit will be to explore how we can bring together different parts of local health systems with local authorities to control TB and hepatitis C rates in particular communities. Distinctly different communities are affected and need distinctly different approaches to tackling the problem.

As the hon. Member for Ealing North said, NHS England and Public Health England are working together on a framework. I apologise that it has been delayed, but it is due to be published this year and I will use this debate as an opportunity for another discussion about the timetable. Nevertheless, those bodies are working together very carefully on the framework, which will set high-level aims for the public health system towards the elimination of hepatitis C-related liver disease as a public health issue, with specific, time-bound objectives that feed into the overarching plan. I think that that deals with one of the issues raised earlier.

Clearly, the framework must have key targets, involve clinical commissioning groups and address co-commissioning. PHE has been working with a range of local partners—such as GPs, CCGs and NHS commissioning—to look at the rates of testing, diagnosis and treatment for people at risk of hepatitis C. That will be a core part of the framework. I will pick up the issue and write to Members when I have more detail on when we are going to publish the framework, but it will be very thorough, which is why it is taking a little longer to finalise.

In recent years, the Hepatitis C Trust has played an important role in piloting innovative ways of increasing testing rates through the use of a mobile testing van and pharmacy-based testing. We always underestimate what can be done in pharmacies, but I am very keen to make far more of what we can deliver through them. It is important that people can access early diagnosis. Those accessing drug treatment services should routinely be tested for hepatitis C, as recommended in NICE guidance. I welcome data from PHE that show increasing rates of testing. Nevertheless, we clearly must do more to ensure high levels of professional awareness about that.

PHE has also been working with NHS England and other commissioners to look more generally at how best to commission to meet the needs of patients with hepatitis C. For example, its work has included issuing extremely informative liver profiles to each local authority area, including information about hepatitis C. Every single local authority in England was sent the liver profile for its area, in the hope that that would provide the basis on which services could be planned. I urge Members to look at those profiles, and if any Member has not seen the one for their area, I would be happy to supply it.

Time is very much against me and I have not really had the chance to discuss the new therapies. We are very conscious of the potential that they offer, but I must also put on record the fact that there are existing therapies. They come with great challenges, as the hon. Member for Ealing North outlined, and they are also more difficult for people who struggle to access health care and keep to regular therapy programmes. We see great potential in some of the new therapies, but careful thought must be given to how they are delivered to patients. More than 700 patients have already been treated through the policy on access to new therapies for patients with liver failure, which has cost about £38 million, with specialist centres established to deliver early access around the country.

I am afraid that time has beaten me, as I thought it might given the interest in this subject, but I hope that I have given hon. Members the sense that we have real momentum, with the summit and the plan to come. I will write to them with further detail.

Sitting suspended.