§ 7.38 p.m.
§ Lord Morris of Manchester
rose to ask Her Majesty's Government what further help they are considering for people who were infected with hepatitis C by contaminated NHS blood products and the dependants of those who have since died in consequence of their infection.
The noble Lord said: My Lords, I declare an interest—not a financial one—as Honorary President of the Haemophilia Society.
This debate is about what my noble friend Lord Winston, among other distinguished members of the medical profession, sees as the worst treatment disaster in the history of the National Health Service. My noble friend is a Vice-President of the Haemophilia Society and regrets very much that a commitment which he agreed to before the debate was arranged makes it impossible for him to be here this evening.
The scale of the disaster is still not realised widely enough, even among parliamentarians, and needs to be clearly restated this evening. Already suffering from a rare, lifelong genetic condition that requires continuous medical treatment and for which there is no cure, Britain's haemophilia community has been twice devastated by contaminated NHS blood products. Over 1,200 people with haemophilia were infected by their NHS treatment with HIV and over 4,000 with hepatitis C (HCV). Almost everyone with haemophilia who is now over 14 years of age was infected with one or other of these two life-threatening viruses. Even more sadly and disturbingly, many were doubly infected with both HIV and HCV.
A total of over 700 of those infected with HIV have now died of AIDS-related illnesses. Of the people with haemophilia who were infected with HCV, including some who were co-infected with HIV, figures collected by the UK Haemophilia Doctors' Organisation show that at least 113 have now died from liver disease and liver cancer, both of which are related to end-stage HCV. No official statistics have been published on the HCV-infected haemophilia population, however, and the actual number of HCV-related deaths may be much higher than 113. Thus a haemophilia community of no more than 5,000 people has suffered at least 813 deaths in direct consequence of contaminated NHS blood products.
982 Many others are now in very poor health and have lost their jobs, homes and sometimes family, due to their infection. Their most daunting worry is not knowing which of them will develop chronic liver disease and perhaps cirrhosis and cancer of the liver. But regardless of their health now, everyone who is HCV-infected will be unable to secure life insurance except at prohibitive rates, while those with young families and other dependants are denied the peace of mind that goes with knowing that, if they become terminally ill, their dependants will be provided for.
Yet despite the scale of the disaster and in contrast to the lead given by other governments across the world there has been no official inquiry here, nor even a "lookback" exercise to ensure that everyone infected with HIV and/or HCV by NHS blood products has been traced, tested, counselled and treated.
That has to be compared with the rapid response of the Department of Health this morning, for which there has been huge media coverage all day, to the discovery that two surgeons infected with hepatitis C may have passed on the virus to their patients. In this instance a full "lookback" exercise has been mounted that includes letters to patients, local helplines and access to special counselling. Why could not this have been done to help a community that has lost 813 people to blood-borne viruses in the NHS's worst-ever treatment disaster?
Time and again the Haemophilia Society has warned Ministers that time is running out for more and more of those infected with HCV. The virus progresses more slowly than HIV. It can be 20 to 30 years before it becomes active; but when it does it is extremely damaging and dangerous. Within the HCV-infected haemophilia population, many of whom have been infected with the virus for over 20 years, the toll is now becoming apparent. Current medical opinion is that up to 80 per cent of those infected with HCV will develop chronic liver disease; up to 25 per cent may develop cirrhosis of the liver and see it progress to liver cancer.
The previous government accepted that it had a moral duty to help those infected by their NHS treatment with HIV. With all-party support, a financial assistance scheme was introduced which the Macfarlane Trust was set up in 1988 to administer. Some £90 million has been made available in across-the-board payments and hardship grants since then. But nothing has been done for those infected in exactly the same way and at the same time with hepatitis C. This is an injustice the haemophilia community and their supporters on both sides of both Houses of Parliament want the Government urgently to correct.
Both viruses came from the same source contaminated NHS blood products—and the discrimination against those infected with HCV is thus blatant and indefensible. In July 1998 the then Health Secretary, Frank Dobson, rejected the Haemophilia Society's call for financial help for them, arguing that the harm done by their NHS treatment was inadvertent. But Ministers in successive governments have said that the same is true of HIV infection. Frank 983 Dobson argued also that the decision to help those infected by HIV was in recognition of the social stigma attached to HIV. But again, ask the haemophilia community and it will give you evidence galore of the stigmatising of people with hepatitis C by those who fear that they too could become infected by contact with them.
The truth is that the last government's setting up of the Macfarlane Trust for HIV-infected people was an official acceptance of moral responsibility for their loss and hardship. They made an exception from normal practice in regard to the NHS and negligence for people with haemophilia who had been infected by the NHS with a life-threatening virus and the present Government, who came to power committed to higher moral standards, must surely do so too.
There is exactly the same moral responsibility for loss and hardship among those infected with HCV. Yet 13 years on they are still waiting for parity of treatment with others in the same small community who were infected at the same time and by the same route.
The NHS was founded on a moral principle in which we on these benches can take special pride. But as my noble friend Lord Winston said in a previous debate I initiated on this issue,moral principles…impose obligations and responsibilities. There is a price as well as an advantage in taking the moral high ground".—[Official Report, 5/6/98; col. 673.]The last government paid that price in the case of HIV infection. The moral promise on which this Government came to power alone commits us to do no less now for those infected in the same way and by the same route with HCV.
I must strongly emphasise that this is not a debate about medical negligence and legal liability for loss and hardship. The last Government made financial help available on an ex-gratia basis without any admission of liability. It was not done from fear of legal action, but because it was the right and just thing to do. Following that precedent, the same step could and should now be taken to help those infected with HCV. Fortunately the mechanism already exists for them to do so. They could extend the remit of the Macfarlane Trust to enable it to provide help for those affected by HIV and HCV alike, a move which would command wide all-party support, both here and in another place, as a fair and long overdue corrective to the inequity that now exists.
It is a cruel irony that, given the family inheritance of haemophilia, at present a dividing line is drawn between brothers, cousins and uncles in the same families, all of whom were infected by contaminated NHS blood products at the same time. But those who were infected with HIV may receive financial help, while those who contracted HCV may not. What could be more demonstrably unjust?
The tragic story of three brothers exemplifies this injustice. All three inherited haemophilia. Two brothers were infected with HIV by their NHS treatment and died of AIDS-related illnesses. They 984 received financial help from the Macfarlane Trust and were able to make provision for their families. The third brother escaped HIV but contracted HCV and died of liver failure. For him there was no financial help. He went to his grave unable to make any provision for his family. Each of the three brothers died of the same cause. But one was denied the help given by a government-funded trust to the other two. That contrast in treatment not only suggests but shouts of injustice. And the test of any defence of present policy by anyone is how he or she will convince the mother of these three brothers of its fairness.
Nor is the lack of financial assistance the only injustice. In spite of repeated assurances from Ministers that people with haemophilia would not be denied treatment for HCV, local health authorities in many parts of England—Sunderland, West Hertfordshire and Avon to name but a few—refused to fund their only hope of a cure: a combination therapy of Interferon and Ribavirin. The fact that the National Institute for Clinical Excellence is currently looking at this treatment is seen by the haemophilia community as no excuse for dishonouring ministerial assurances. On the Haemophilia Society's behalf, I now ask health Ministers to issue an urgent instruction to health authorities to make this treatment available in response to clinical need.
Professor Roger Williams, Director of the Institute of Hepatology at the Royal Free and University College Medical School, referring in The Times on 28th March to the widely reported case of the woman in Avon who has been denied treatment with the drug Ribavirin for her hepatitis C infection, pointed out that if the drug had been prescribed for her for the requisite period of six to 12 months, she would have had up to a 60 per cent chance of getting rid of the infection. He wrote:With this, liver damage is likely to improve and the risks of long-term liver cancer developing become less…What a ridiculous state of affairs to give inadequate treatment when much better, albeit more costly therapy is available".That case achieved more media attention than the refusal by one health authority after another, in total violation of ministerial assurances, to make available to people with haemophilia who were infected with HCV their only hope of a cure. It underlines again how much more could have been and could now be done to reduce avoidable suffering in the haemophilia community.
Living with HCV involves uncertainties that can hardly be imagined by those unaffected. Doctors are unable to predict for any individual how the virus will affect their health, how soon they may become ill and how seriously, which creates stress and deep anxiety, more especially for those with family responsibilities.
Research carried out by the Haemophilia Society illustrates the disastrous impact HCV infection has had on the lives of families who were already struggling to cope with a life-long disability. Many have had to reduce or give up work because of the effects of the virus and face a sharp loss of income. Serious problems have been caused for people seeking mortgages once they have been diagnosed with 985 hepatitis C. Again, fear of passing on the virus within families creates damaging stress on relationships between parents and children and husbands and wives. Social stigma adds further stress as HCV-infected people are increasingly shunned—even by neighbours, friends and colleagues—because of the virus.
The threat of new variant CJD is a now a further worry. Experts agree that there is no way of guaranteeing that blood products still used in the treatment of haemophilia are free from CJD infection. The Department of Health describes the risk as "theoretical" but fear persists in the haemophilia community that the treatment on which they may rely every day may carry CJD. The Government recognised then anguish by ensuring that children under 16 are treated with recombinant genetically engineered Factor 8 or 9 rather than plasma-derived products. But many older teenagers and young adults over 16 in England are still reliant on plasma products and have no option but to accept the "theoretical" risk. But in Scotland, Wales and Northern Ireland recombinant is being provided for everyone—children and adults alike When will the Government be ending the injustice of treatment by postcode? What new steps will they be taking to protect the haemophilia community from the threat of variant CJD? What progress is being made towards introducing an effective screening test for CJD or prophylactic treatment against variant CJD through use, for instance, of pentosan polysulphate? With questions like those on the minds of people with haemophilia, it i3 all the more distressing that they are forced to continue the long campaign for justice and recompense for the historic tragedy of contaminated blood.
In none of the parliamentary campaigns I have been closely involved in over 36 years in Parliament—even thalidomide and that for statutory recognition of dyslexia—have I had so strong a sense that no campaigning ought to have been necessary to right so obvious a wrong. Enormous cross-party backing has been given by MPs to motions calling for parity of treatment, not least by many of our present Ministers, including Alan Milburn, the present Health Secretary. As each successive motion has shown, the issue is seen not as one of Right and Left, but of right and wrong. And all of us knew that, given the nod by Ministers, both Houses could end the injustice to HCV-infected patients within an hour. For in truth there is no difference in principle between the claims of those infected with HIV and HCV.
There are many celebrated texts on the wrong of delaying justice. My choice this evening is Magna Carta which famously declares:To no one will delay right or justice".Recognition that justice delayed is justice denied was never more relevant than it is today in the small community for whom I speak in this debate. They hope profoundly that the opportunity provided by this debate will he taken to end the injustice that leaves so many of them doubly disabled and in double despair. But if their striving for equity has to go on, then let no one be in any doubt that go on it will until right is done.
§ 7.54 p.m.
§ Lord Clement-Jones
My Lords, first, I want to say what a great debt we owe to the noble Lord, Lord Morris of Manchester, not only for raising this issue tonight in your Lordships' House, but also for continuing to raise the issue and campaigning so vigorously on behalf of those whom many of us believe have suffered one of the greatest injustices of recent times.
It is sad to he here yet again asking for justice for those haemophiliacs who contracted hepatitis C in the circumstances outlined so graphically by the noble Lord, Lord Morris. The case today of the two surgeons who are passing on hepatitis C demonstrates and reminds us not only of the severe effects of hepatitis C, but also of the action that can be taken if a vigorous approach is taken by the NHS, and if government have the will to do it.
The noble Lord, Lord Morris, reminded us that nearly 5,000 haemophiliacs in the UK were infected with HCV through contaminated blood products pre-1991, before blood-donor screening was instituted. He also reminded us about the institution by a Conservative government of the Macfarlane Trust in 1988, which since then has been given sums amounting to £90 million to provide compensation to haemophiliacs who contracted HIV through contaminated blood products. In that case, there was no admission of liability; yet the trust was set up; yet the compensation has been provided.
We are reminded by the noble Lord, Lord Morris, that no equivalent provision has been made for those who contracted HCV in similar circumstances. Up to 80 per cent of those infected will develop chronic liver disease; up to 25 per cent may develop cirrhosis of the liver; between 1 and 5 per cent may develop liver cancer. Indeed, as the noble Lord, Lord Morris, also reminded us, 113 haemophiliacs who contracted HCV are estimated to have died from liver disease up to the end of 1999. That figure is expected to rise considerably as the 20 to 30-year progressive phase of HCV nears its end.
In addition to the fact that there is no compensation, there appears to be no national strategy for provision of care for those suffering from HCV. There are few counselling or support services available. There are a number of treatments—they were mentioned by the noble Lord, Lord Morris—which can now be used if they are available. New combination drug treatments are available which have modest success rates, such as Ribavirin and Interferon, but the costs are high. As the noble Lord, Lord Morris, reminded us, they are subject to the classic lottery of postcode prescribing. A number of health authorities, such as Avon, West Hertfordshire, and Sunderland do not provide those treatments at all for those with hepatitis C.
There is also the issue of the use of molecular diagnostic assays to determine a patient's HCV genotype which could determine which combination course to use. If they were available, that would save considerable expense for the NHS.
987 But the key argument in this case surrounds the issue of compensation. There have been previous arguments against hasty compensation because of the fear of institutionalising a culture of "claim and counterclaim" in the NHS, if I may quote an Opposition spokesman in the debate in 1988. As recently as 7th March, in a debate in the other place, the Government reiterated their stance that compensation will not be forthcoming. John Denham, the Minister of State for Health, said,We concluded that haemophiliacs infected with hepatitis C should not receive special payments".—[Official Report. Commons, 7/3/00; col. 138WH.]Indeed, government policy appears to be centred around the determination not to breach their general rule that they will provide compensation or other financial help for particular patients or groups of patients only where the NHS or individuals working within it have been at fault. They refuse to consider that HCV infection is a special case, despite the fact that sufferers have to face many of the same problems as those infected with HIV who were judged, by the previous government, to be a special case.
This contrasts with other EU governments, such as that in France, who have provided compensation. Furthermore, it is contrary to the policy of this Government when they themselves were in opposition. A number of quotations could be produced from debates held prior to 1997 in which many Opposition spokesmen made it quite clear that they supported haemophiliacs in these circumstances.
As the noble Lord, Lord Morris, reminded us several times during his speech, this contrasts very strongly indeed with the treatment of those who contracted HIV as a result of similar kinds of blood products. Indeed, many parallels can be drawn between the two viruses: they are both viral infections; both were transmitted to haemophiliacs in the same manner, through infected blood products; both almost certainly lead to debilitating illness, often followed by lingering and painful deaths; it is difficult to predict the viral progression, which leads to fear, insecurity and increased stress in patients; and the drug therapies themselves often bring distressing side effects to patients, occasionally intolerably so.
For both groups, there is a great danger of falling into a poverty trap. Their costs of living increase due to special dietary requirements, very high insurance premiums, but reduced earning abilities as a result of the attendant illness, fatigue and workplace discrimination. Furthermore, both groups of sufferers sometimes encounter difficulties in developing and maintaining relationships. All these factors add to the sense of ostracism from society. Yet despite the similarities between the two viruses, a haemophiliac with HIV has and can receive compensation, while a haemophiliac with HCV cannot.
The essence of tonight's debate, debates on previous occasions, and the entire campaign is a moral one; that of the disparity between the treatment of 988 haemophiliacs infected with HIV and those who in very similar circumstances contracted HCV and are not being compensated. As I have said, the Government have stated that they will not provide compensation where the NHS is not at fault. However, that argument falls down because that is exactly what was done by the previous administration in the case of those infected with HIV. The previous government were prepared to compensate those with HIV. The similarity between the predicaments of the two groups is so clear that, in refusing to provide the same level of support, it makes the Government appear, at best, completely cold-hearted and at worst, indefensibly miserly.
The Government's refusal to acknowledge another demand of the campaign, the instigation of a public inquiry, also fails the morality test. Surely the sequence of events that led up to what has been widely referred to as one of the greatest tragedies in the history of the NHS—those were the words of the noble Lord, Lord Winston, and were quoted by the noble Lord, Lord Morris—needs to be closely examined. If the Scottish Executive can take such a course, why cannot the Westminster Government? It should be remembered that this is something that has already claimed more lives than the "Marchioness", Southall and Paddington disasters combined, and it is set to go on claiming lives for many years to come.
It is too simplistic to say, "We did not have the screening technology at the time, therefore there is nothing we could have done about it and so we are not at fault". Doctors predict that the numbers of HCV cases among both haemophiliacs and the general population is set to rise considerably over the next decade, so why do the Government refuse to act at this point?
The Department of Health should stop ignoring the plight of this group and should face the fact that these people are being unfairly penalised. In recent months, the Prime Minister has taken a great personal interest in the health service. It is high time that he responded to the concerns of haemophiliacs and ensured that justice is secured for them.
§ 8.3 p.m.
§ Earl Howe
My Lords, the noble Lord, Lord Morris, is to be congratulated on having tabled this Question today. The cause about which he has spoken so well and which he brought to your Lordships' House in a short debate nearly two years ago is one that, for reasons that are all too obvious, refuses to lie down. I do not think that any of us should find this surprising.
We are speaking here about a substantial number of people who through no fault of their own have found themselves stricken with a condition that can be disabling and sometimes fatal as a direct result of treatment that they received from the National Health Service. The natural response of anyone who understands the dreadful pain and anguish of those 989 with hepatitis C who go on to develop chronic liver disease, cirrhosis or liver cancer, as many have done or will do, is a feeling of profound sympathy. Furthermore, in remembering the sufferers themselves, we should not forget the stress and grief experienced by their families.
In a sense, the emotional reaction that all of us must have is both a help and a hindrance. We want to see these unfortunate people assisted in some way. Yet at the same time we know that when it comes to formulating balanced and practical policies, all governments have a duty to put emotion to one side. That is this Government's difficulty, exactly as it was for the last government, in the face of claims for financial compensation.
We are not talking here about medical negligence. If we were, the matter would be quite straightforward. No one—not the sufferers themselves or the noble Lord, Lord Morris—is saying that the NHS was at fault in the 1970s and early 1980s when contaminated Factor VIII was given to haemophiliacs. As the noble Lord has emphasised, the issue of compensation is essentially a moral one.
It was the moral case of those who had contracted HIV as a result of receiving contaminated Factor VIII that in 197 led my right honourable friend Mr Major—with al1-party agreement—to establish the financial assistance scheme that is now administered by the Macfarlane Trust. In the mid-1980s, the moral case for assisting such HIV sufferers appeared unique and overwhelming. Not only was there a social stigma attached to HIV unlike that of any other disease, but HIV was also invariably the precursor of full-blown AIDS and death. Furthermore, it is much more capable of being transmitted to sexual partners.
In those days, combination therapies were unknown. At the same time, public attitudes towards AIDS were not as understanding or as informed as they are today. I have no doubt that those were the considerations that impelled my right honourable friend, with very considerable compassion and courage, to provide assistance to that group. Because the circumstances were seen as unique, the funding was provided on the basis that it was not to be regarded as a precedent for other no-fault compensation claims. That was always going to be a difficult line to hold.
Successive governments have resisted the principle—in my view, rightly—of an across-the-board system of no-fault compensation for medical accidents in the NHS. The problems that would attach to such a system, were it to be introduced, would be considerable. It would instantly dilute accountability. It would also mean that in one important respect the distinction between negligence and innocent action would become blurred. Furthermore, from a practical standpoint there would be all kinds of problems about proving cause and effect. I have no doubt that at a time when we want to see greater accountability in medicine and greater emphasis placed on quality of treatment, 990 anything that might be seen as a tacit acquiescence in poor quality clinical practice would be the wrong way to go.
If the issue of compensation for hepatitis C sufferers is to be resolved in the negative—as I suspect it will be—then I believe that, at the very least, the Government owe it to the victims to provide a detailed explanation of why they have come to this view. I recognise that this is a sensitive and far from easy request to make. That is because it involves drawing comparisons. As we have heard, there are situations where in the same family, and as a result of identical treatment, a person infected with HIV is receiving compensation from the public purse, while another member of the family with hepatitis C is not. We need the Government to say explicitly—if they are going to maintain their current policy—that they do not regard the unique circumstances that surrounded HIV infection in the 1980s as being directly comparable to the plight of haemophiliacs suffering today from hepatitis C.
There is one particular aspect of this issue on which I should be glad of the Minister's comment. Many of those of whom we are speaking suffer not only physical disability but also financial hardship as a result of what has happened to them. Up to now, perhaps not unreasonably, the Government's response to the latter issue has been to point to the existence of the benefits system. But there is, I think, a good argument for looking at the benefits system and asking whether it really meets the case of those who, as a result of medical accidents within the NHS, incur direct additional expense in terms of medication, travel and subsistence costs, special diets and so on. It might be possible to regard such support as quite separate from the question of means. It seems inequitable that we should ask these individuals not only to tolerate the many disadvantages which their condition brings—not the least of which can be a substantially reduced level of income—but also to pay out of their own pockets for the privilege of receiving appropriate treatment.
Unfortunately, though, as we have heard from both the noble Lords, Lord Morris and Lord Clement-Jones, effective treatment is often unavailable. Hepatitis C is difficult to treat, but Interferon and Ribavirin combination therapy was licensed last year and has been shown to clear the virus in about 30 per cent of cases. Many health authorities have decided not to authorise this treatment on grounds of cost. Can the Minister confirm my understanding that this matter has been referred to NICE? It cannot be right that across the country there is unequal access to treatment which, on the face of it, seems like a lifeline for these unfortunate people.
What is really needed is a national service framework covering the management and care of hepatitis C sufferers. Support services, including counselling, are, as we have heard, woefully thin on the ground. At the clinical level it is quite wrong that in some areas of the UK patients have to wait months or years to see a hepatologist or HCV specialist. That sort of delay is bad enough normally, but where the cause 991 of the problem is the NHS itself we surely all feel that we owe it to those people to give them the swiftest possible medical attention. Can the Minister say what strategy the Government have to co-ordinate the clinical and support services available to hepatitis C sufferers across the country?
Mention has been made of the inquiry instituted by the Scottish Parliament into the allegation that hepatitis C patients north of the Border continued to receive contaminated blood for a full year after blood purification techniques were introduced in England. I do not wish to debate that matter or pre-empt the inquiry's conclusions. However, can the Minister comment on his Written Answer of 13th October last year? In it he stated that between 1985 and 1987, after viral inactivation by heat treatment for blood and blood products was introduced in England and Wales, 190 vials heated to less than the requisite temperature were sent from Scotland to England and Wales. Can he say how many people, and in particular how many haemophiliacs, were infected from this source?
If it should be found that some individuals have contracted HCV from this source, will the Government review the circumstances in which these blood products were allowed to reach English and Welsh patients? Even if—as I suspect the Minister is unable to give comfort to the noble Lord, Lord Morris, on the question of compensation, for haemophiliacs I hope that he can provide some reassurance on some of the other important issues that have been raised this evening on behalf of this most hapless group of people. I greatly look forward to hearing what he has to say.
§ 8.13 p.m.
§ The Parliamentary Under-Secretary of State, Department of Health (Lord Hunt of Kings Heath)
My Lords, I join other noble Lords in thanking my noble friend Lord Morris for raising this matter. As honorary president of the Haemophilia Society he brings much knowledge and wisdom to your Lordships' House on this issue. As all noble Lords know, he has been a tremendous campaigner for many years. I am sure that we are all in his debt for allowing us to debate some important questions relating to the help that government can give to people who were infected with hepatitis C by contaminated NHS blood products.
My noble friend Lord Morris began by talking of the scale of the disaster. He spoke movingly of the plight of haemophiliacs who received infected blood products before technology could remove hepatitis C infection. I, too, share his concern at what happened. The Government are committed to providing solid, practical help for people with haemophilia inadvertently infected with hepatitis C. We want these people to be well cared for in the NHS; to receive effective support in their communities; and to have better information about how to look after their health.
992 I want to take time today to talk in some detail about how the Government plan to achieve this. But, first, I want to respond to the requests made by my noble friend and the noble Lord, Lord Clement-Jones, for the Government to provide financial assistance for people with haemophilia and hepatitis C and their dependants.
As noble Lords will know, when this Government came to office we met the Haemophilia Society and listened to its arguments for a special payments scheme for people with haemophilia and hepatitis C, similar to that in place for HIV. After long and careful consideration, the Government came to the conclusion that a special payments scheme should not be established. Government policy remains that compensation or other financial help to patients is paid only when the NHS or individuals working in it are at fault. As the noble Earl, Lord Howe, suggested, the underlying principles are clear-cut and independently established under common law. They apply to personal injury cases in general, not just those arising from healthcare. The same conclusion was reached by the previous government.
I listened with interest to the point the noble Earl, Lord Howe, made about benefits. In a sense he suggested that we might provide a limited special payment scheme or hardship fund. The Government have considered that also. However, as we do not make payments to other groups or individuals inadvertently harmed by the NHS, the Government believe that the same arguments apply.
How can we be sure that the NHS was not at fault? The fact is that the technology to make blood products free from hepatitis C in sufficient quantities to treat all haemophiliacs in the UK was simply not possible prior to 1985. Even then, it was not until 1987 that there was proof positive of the means of eliminating the virus from these blood products so essential to the lives of people with haemophilia. It must be a matter of deep regret that, before this, many haemophiliacs were inadvertently infected by treatment designed to improve their quality of life. But this is not of itself considered a justification for special payments.
We believe that the financial needs of people whose condition results from inadvertent harm should be met through the benefits system. I know that the Haemophilia Society does excellent work ensuring that people with haemophilia are made fully aware of their benefit entitlements.
As my noble friend Lord Morris has drawn to our attention, comparisons are inevitably made between the decision not to offer special payments to haemophiliacs with hepatitis C and the special payments established in the late 1980s for haemophiliacs with HIV. However, there are significant and real differences between the two situations.
If we think back to the 1980s, HIV had a vast and dramatic impact. It was a source of fear and stigma for all those who became infected with the virus. There was wide-scale public reaction. Here was a new sexually transmitted infection which was rapidly fatal. 993 There was no treatment and at that time death from AIDS-related diseases was considered inevitable. HIV and AIDS arrived at a time when people with haemophilia were beginning to receive more manageable treatment with newer blood products—blood products which were much easier to use and more effective and which normalised the lives of haemophiliacs.
The future looked bright. Young people with haemophilia started to pursue education more hopefully, to have families and, in effect, began to lead full and normal lives. When it became evident that blood products were infected with HIV, that bright future faded. It was in this context that special payments were introduced and the MacFarlane Trust was established. This has to be seen as a reflection of those truly exceptional circumstances—the very poor prognosis at that time for people with haemophilia who became infected with HIV.
My noble friend has drawn attention to a family where two members have HIV and receive special payments and a third who has hepatitis C and receives nothing. But HIV and hepatitis C are different. As I mentioned earlier, when the special payments scheme was introduced for people with haemophilia and HIV in the late 1980s, it was in the context of an infection that was considered to be inevitably and rapidly fatal.
In saying this, I am not losing sight of the fact that a number of people with haemophilia and hepatitis C have tragically died from liver cancer and other causes, nor do I ignore the fact that many others have hepatitis C-related illness. That is why we must continue to support the search for new treatments and therapies for hepatitis C. I was asked about that and I shall say more about it in a moment.
The noble Earl, Lord Howe, and the noble Lord, Lord Clement-Jones, referred to the Scottish investigation. This investigation relates to a specific issue to which I have already referred, the circumstances surrounding the development of heat treatment of factor 8 in Scotland in the mid-1980s. It is not a general inquiry into the history of the matter but into the specific issue of the timing and sequence of events in the context of the scientific knowledge at the time.
The noble Earl, Lord Howe, asked about the 190 vials which were imported from the Scottish centre. These were used mainly to treat a number of haemophiliacs on a named patient basis, gaining their consent. It must be recognised that at that time and until 1987 it was not clear from the information available that the treatment might have transmitted HCV. We have asked the Haemophilia Society directors to take part in tracing, counselling and testing any people who may have received these products.
§ Lord Clement-Jones
My Lords, I apologise for interrupting the Minister in full flow. Is there not a good case to be made for having a similar inquiry in England?
§ Lord Hunt of Kings Heath
No, my Lords, I do not think so. The best approach is to await the outcome of 994 the Scottish investigation. I do not think there is a case for saying that there needs to be an investigation into the English circumstances.
Noble Lords have asked about services. We clearly want the health service as a whole to have good quality, modern, dependent services and we want people with haemophilia to benefit from the improvements in services that we intend to make. In that context, let me turn to one key issue which has been mentioned today, the availability of the latest drug treatments for hepatitis C.
Until recently, the only treatment available for hepatitis C was Alpha Interferon. This had a limited success rate—around 20 per cent—in removing the virus and is not suitable for all patients. However, the use of Alpha Interferon in combination with Ribavirin appears to be significantly more effective, clearing the virus in around 40 per cent of those treated. This combination therapy is now licensed. I can confirm to the noble Earl, Lord Howe, that we have asked NICE to assess this as a matter of urgency. We look forward to receiving its guidance later this year.
Several other therapeutic agents are in development which show great promise—a point raised by the noble Lord, Lord Clement-Jones. Other treatments are being researched such as different combinations of drugs. We hope that the next few years will see significant developments and improvements in the treatments available.
All noble Lords referred to the recent coverage of cases where health authorities have said that they cannot prescribe combination therapy on grounds of cost. I wish to make two points in regard to that. It is important that we do not seek to pre-empt the independence of NICE on the cost-effectiveness of this treatment. To do so would undermine the effectiveness of NICE, which has been set up to put an end to postcode prescribing. In the meantime, I would expect local decisions on providing combination therapy for hepatitis C to be based on the available evidence of clinical and cost effectiveness, taking account of the needs of individual patients.
Both my noble friend and the noble Lord, Lord Clement-Jones, asked about the availability of counselling services. When I met members of the Haemophilia Society last year, they told me that they considered there was insufficient counselling available. We have therefore given careful consideration to how we may help to improve that situation. As a first step, we have asked the UK Haemophilia Centre doctors' organisation to ensure that counselling provision is available and accessible to all haemophiliacs with hepatitis C. This will mean that the facilities at the 22 comprehensive care centres in the UK are available to the smaller haemophilia centres. I hope that that will be a significant improvement.
We are also working with the organisation to collect better data on the number of people with haemophilia infected with hepatitis C. This can be used to support better service delivery and provision. We are also 995 talking to the Haemophilia Society and the Manor House Group to see how counselling and support services might be further developed.
The professional groups with an interest in haemophilia have also recommended the development of a set of minimum standards for service delivery. Both the noble Earl, Lord Howe, and the noble Lord, Lord Clement-Jones, asked about how we might develop a national strategy in relation to service provision. I believe that the development of a set of minimum standards would be an effective way of improving counselling provision and other aspects of haemophilia services in the longer term.
With this in mind, the recently formed Haemophilia Alliance has started work on a proposed national specification. This specification will outline the key components of a high-quality haemophilia service, whether this is provided in the larger comprehensive care centres or the smaller haemophilia centres. The Alliance has asked the NHS Executive to circulate information about its work on the service specification through our national networks, and we have done that.
We have also identified haemophilia services as appropriate for specialist service commissioning, and three regional specialised commissioning groups—in London, the west Midlands and the south-east—are looking at designating their services at present. I hope that that combination of measures will help to put haemophilia services at the top of their agendas and support those services in performance managing the services for people with haemophilia in the NHS as a whole.
To underpin the work of the Haemophilia Society, we give an annual grant towards its administration. We also provide individual grants to help with the excellent projects it develops to support people with haemophilia and hepatitis C. For example, over the past two years we have supported a Haemophilia Society project to develop and produce material on hepatitis C for young people, their families and teachers. The booklets are: Living Life to the Full; Alive and Kicking; Being There; and Haemophilia and School. These are available from the Haemophilia Society. All have been highly praised, and rightly so.
We are also funding a seminar for professionals on co-infection with HIV and hepatitis C. That will take place later this year. The Haemophilia Society is developing the programme and arrangements. We are keen to build on our work with the society and I am sure that there will be further projects we can take forward.
Looking at hepatitis C in a wider context, we are aware that it is a significant public health issue. We recognise the need to increase knowledge about the natural history, prevalence, transmission and treatment of hepatitis C. This will ensure that the NHS is equipped to deliver services based on the best scientific and medical evidence available.
996 In order to address this, we have commissioned research totalling £1 million. We are currently in the process of investing a further £0.5 million of research money specifically into the area of hepatitis C and injecting drug misuse. This is currently responsible for most new cases of hepatitis C. The research will investigate ways of reducing the incidence, spread and progression of the disease. There is also a trial under way into the possible benefit of treating hepatitis C in the early, mild stage.
I was asked a number of questions concerning the case of the hepatitis C-infected surgeons. We are aware of these incidents. We have worked hard to identify other patients who may have been at risk. Although we believe that the risk to the individual patient will be very small, patient notification allows those who may have been at risk to receive advice and the offer of hepatitis C testing. Any found to be infected can then be referred for specialist assessment and advice.
As part of our programme of measures, we have also funded a group from the Royal College of Physicians, the British Society of Gastroenterology and the British Association for the Study of the Liver to draw up evidence-based guidelines for the management of patients with hepatitis C. These guidelines will form part of NICE's consideration. In addition, we support the work of voluntary organisations working with people who have hepatitis C. I have already mentioned the Haemophilia Society projects. The British Liver Trust, a charity representing all patients with liver disease, has received grant aid for projects to raise awareness of hepatitis C, to produce information leaflets and run a telephone helpline, and to develop its chronic disease self management programme.
My noble friend asked about a "look back" for HCV. He is quite right. There has not been a specific look back study for HCV. That is because the haemophilia centres are regularly attended by people with haemophilia and are tested for the virus. A small number may not have been tested. We have written to the UK haemophilia doctors to ensure that they recall those attending their centres and offer them counselling and, if they wish, HCV testing.
In conclusion, I should like to assure my noble friend of my great sympathy for people with haemophilia who have been inadvertently infected with hepatitis C. I understand only too well the difficult dilemma where treatment and care can lead to harm where none is intended. This is an area of clinical practice that we are determined to address through our investment in quality systems in the NHS. I fully recognise that for people with haemophilia the clock cannot be turned back and we can only consider with great regret what better progress in anti-viral technology might have helped us to avoid.
However, the constructive, forward-looking initiatives we have in hand with the Haemophilia Society and other groups, the ever newer treatments 997 for hepatitis C and our overall drive to raise quality in the NHS as a whole should improve the services and support available to haemophiliacs with hepatitis C.
§ Lord Burlison
My Lords, I beg to move that the House do now adjourn during pleasure until 8.38 p.m.
Moved accordingly, and, on Question, Motion agreed to.
§ [The Sitting was suspended, from 8.32 to 8.38 p.m.]