Hepatitis C

– in the House of Lords at 6:23 pm on 23rd April 2001.

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Photo of Lord Morris of Manchester Lord Morris of Manchester Labour 6:23 pm, 23rd April 2001

rose to ask Her Majesty's Government what further help they are considering for people who were infected with hepatitis C by contaminated National Health Service blood products and the dependants of those who have since died in consequence of their infection.

My Lords, the scriptures tell of,

"a man of sorrow and acquainted with grief".

This debate is about a whole community in sorrow and for whom acquaintance with grief--recurrent and often abject grief--is an inescapable fact of daily life. So too is a burning sense of injustice.

To work with and for the haemophilia community--as I have the honour to do as President of the Haemophilia Society--is at once humbling and inspiring. I say this as a serial legislator on the problems and needs of disabled people for over 30 years now, both as their first-ever Minister and the author of successful Private Members' Bills--twice chairing the international committee that informed UN pronouncements on disability rights--and thus having worked with people with severe disability in all its forms world-wide.

And I know of no disability group anywhere whose courage, fortitude and moral strength exceed those of Britain's haemophilia community in facing what doctors of the highest distinction--including some noble Lords--see as the worst treatment disaster in the history of the National Health Service.

That my noble friend Lord Burlison is again on duty in this debate, as he was to respond to the exchanges about the disaster on my Starred Question on 26th March, is most welcome to me on personal grounds. For I have long held him in the highest regard. He will, though, understand that the further absence this evening of the noble Lord, Lord Hunt, as a Health Minister, will be disquieting to the haemophilia community, more particularly in view of the Prime Minister's letter of 30th January to Eddie O'Hara MP--copied to me and clearly also to my noble friend--about compensation for people with haemophilia infected with hepatitis C, which stated that,

"Lord Hunt in the Department of Health has responsibility for this policy issue".

My noble friend Lord Burlison will, I am sure, want to explain, when he comes to reply this evening, why the Minister cannot attend a debate that is so very important to the haemophilia community.

Already disabled by a rare, life-long bleeding disorder requiring continuous medical treatment--for which there is no cure--people with haemophilia have twice been infected en masse by unclean NHS blood and blood products. Of a community of 6,000 people, some 4,000 were infected with hepatitis C (HCV), of whom 1,240 were also infected with HIV. Of those with HIV infection 818 have since died of AIDS-related illnesses; and well over 100 of those infected with HCV alone have in consequence died of cirrhosis and liver cancer. Now there is what is officially described as a "theoretical" risk that hundreds of people with haemophilia have been infected yet again, this time with variant CJD by a blood donor who has since died of the disease.

Almost everyone with haemophilia now over 15 was infected with HIV and HCV by unclean NHS blood and blood products; and of a haemophilia community of some 6,000, now approaching 1,000 have died of one or other of these two life-threatening viruses. Others are now in very poor health, many of them terminally ill, and have lost their jobs, homes and, in some cases, family due to infection.

Among those not so far seriously affected, there is the daunting worry of not knowing which of them will develop AIDS-related illnesses or chronic liver disease. No one with HCV infection, regardless of their health now, can obtain life insurance except at prohibitive rates. And excluding them from help from the Macfarlane Trust denies those with young families and other dependants even the peace of mind of knowing that, if they become terminally ill, they will be provided for.

Yet there is still no positive response from Ministers to the Haemophilia Society's calls for an independent public inquiry into this appalling disaster and the provision of financial help for its victims. This compounds their sense of injustice. They see themselves as forgotten, cast aside as "yesterday's people": too small and powerless a community to be treated as politically important in a society that is being told more and more insistently from Whitehall how economically strong and affluent Britain has now become.

There have been sympathetic words from successive governments. But as a member of the Haemophilia Society now suffering the cruelly punitive effects of end-stage HCV, told me recently:

"It is not sympathy we want from Governments--it is justice--and I find it heartless and unforgivable that they still refuse us even a public inquiry".

It should not be necessary for me to have to make this further plea for elementary justice for sick and deeply vulnerable people now living under a death sentence for the mistake of having trusted in the cleanliness of NHS blood and blood products. After all, when the Green Paper on Welfare Reform was published on 26th March 1998, Ministers told both Houses of Parliament that the Government's,

"commitment to the vulnerable is non-negotiable".

That ringing declaration raised hopes nowhere more visibly than in the haemophilia community. For no Minister who has spoken to anyone trying to cope with end-stage HCV can doubt their vulnerability or that of their dependants. Indeed, the word "vulnerable" might have been invented to describe them.

That no public inquiry has yet been held into a medical disaster on this scale--leaving 95 per cent of patients with the devastating complications of two life-threatening viruses--is without precedent in the modern era. And it does nothing to assuage the anguish and anger of the victims and their dependants to hear Ministers saying that so grave a disaster is now best forgotten; that it is time to "draw a line" under what happened; and that the haemophilia community should "move on". Indeed, they regard such statements as offensive and bereft of any understanding of the extent of sorrow and grief in their small, closely-knit community as more and more of them become terminally ill and die of infection by unclean NHS blood products. Yet fortunately they are not without friends good and true, as I was reminded again this morning by a deeply well informed and very moving letter of support for them from Vicky Vidler, who chairs the Royal College of Nursing's Haemophilia Nurses' Association.

In effect, people with haemophilia given NHS blood products in the 1970s were human guinea-pigs for a new form of treatment. The risks were not explained to them; and despite the scientific knowledge then available to Whitehall that hepatitis could be transmitted in blood, no warnings were given to enable haemophilia patients to make an informed choice.

However, no one has been held to account and no apology has been made. There have quite rightly been public inquiries into the spread of BSE, paediatric cardiac care in Bristol and the retention of human tissue at Alder Hey. Public inquiries have also been held, again quite rightly, into the sinking of the "Marchioness" and the Paddington rail disaster. But far more people have died through the mass infection of haemophilia patients than in all these cases. Why, then, does this much bigger disaster not merit a public inquiry?

For the Department of Health's own "internal inquiry"--which tersely reported in 1998--to be seen in Whitehall as any kind of substitute for a public inquiry is also offensive to the haemophilia community. Reputable journalists freely describe this caricature of an inquiry as,

"a whitewash perpetrated behind closed doors".

Its findings were demonstrably flawed. They again peddled the fallacy that, unlike HIV, hepatitis C does not involve social stigma; and they simplified the last government's reasons for compensating only HIV infection to the point of crude inaccuracy. At any public inquiry its findings would have been summarily repudiated. Indeed, what the department's in-house "inquiry" did was to make the case for an independent public inquiry into the disaster all the more compelling and it is indefensible that we are still left waiting for that inquiry.

The Haemophilia Society has given Ministers evidence galore that the stigmatising of those with hepatitis C by people who fear they too could become infected is every bit as strong as that of HIV infection. Also like those infected with HIV, but without compensating help from the Macfarlane Trust, they have the same lack of access to financial services. Yet current medical opinion suggests that up to 80 per cent of them will develop chronic liver disease; and that up to 25 per cent may develop cirrhosis, which can progress to liver cancer.

The HCV virus progresses more slowly than HIV. It can take 20 to 30 years but, once active, it is highly dangerous. Nevertheless, those infected are left to cope unhelped by the Macfarlane Trust created to help others in the same plight. And the only fair and just way forward is to extend the trust's remit to end the inequity that now so illogically divides the haemophilia community.

The setting up of the Macfarlane Trust for HIV-infected people was an acceptance of moral responsibility for their loss and hardship. An exception was made from normal NHS practice in regard to medical negligence and legal liability for people who were infected with that life-threatening virus. And the present Government, who came to power committed to higher moral standards, must do no less now for others infected by another life-threatening virus in the same small community, at the same time and by the same route. There is exactly the same moral responsibility for loss and hardship in the two cases. Yet as this Parliament approaches its fifth year parity is still denied.

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, Vice-President of the Haemophilia Society, has said:

"Moral principles impose obligations and responsibilities; and there is a price as well as an advantage in taking the moral high ground".

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 the same now for people infected in the same way with HCV.

Notwithstanding the creation of the Macfarlane Trust to compensate for HIV infection, Health Ministers still repeatedly state that, for compensation to be awarded, the NHS must be found to have been negligent. This was stated yet again on 29th March (cols. 410-11) after my noble friend Lord Peston had said that he did not understand the Government's ethical position in regard to HCV infection.

"On all sorts of grounds which once, at least, our party used to believe", he said,

"compensation is exactly the right path to take".

But in response, my noble friend Lord Hunt, speaking for the Department of Health, strongly insisted that compensation could not be awarded unless it could be,

"shown that a duty of care is owed by the NHS body; that there had been negligence; that there had been harm; and that the harm was caused by the negligence".--[Official Report, 29/3/01; cols. 410-11.]

But that is not so. His brief was wrong. Moreover, had it been right, as Karin Pappenheim, Chief Executive of the Haemophilia Society, has aptly responded:

"It would mean that under this Government--on the strength of their decisions on HCV infection to date--there would have been no Macfarlane Trust at all".

This and other Labour Governments have not, of course, uniformly insisted on proof of medical negligence before compensating NHS patients. For example, payments under the vaccine damage payments scheme, introduced when my noble friend Lord Callaghan was Prime Minister, have been substantially increased by the present Government, just as they have also increased the Macfarlane Trust's funding. Another example of their readiness to compensate without legal liability is the financial help recently agreed for British survivors of Japanese prisoner-of-war camps.

And indeed 27 years ago, the then Labour Minister for War Pensions changed the law to give benefit of doubt where ex-servicemen with cardiothoracic illnesses, having served in a theatre of war where gas was used as a weapon of war, applied for war pensions or their widows for war widows' pensions. I well recall this further example because I was the Minister who took that decision; and I did so without any prompting from its beneficiaries. So I speak in this debate as the advocate not of a new departure in social policy but of due respect for honourably humane precedent.

In truth, the issue is not one of inflexible rule but of political will and priorities. And I suspect that few of us here, or in another place, would have to "ask the audience" or "phone a friend" to discover the right thing to do in this case.

There are two more issues I want briefly to address. The first concerns the game of Russian roulette now being played with the haemophilia community. Despite the gruesome history of contaminated NHS blood, the vast majority of people with haemophilia over 16 are still made to rely on plasma-based products, rather than the safer--but more costly--genetically engineered recombinant Factor 8 or 9. But the Department of Health still sees nothing wrong in making them accept the "theoretical" risk of using plasma-based blood products, even although risks they have already been forced to face proved far from "theoretical". In approaching 1,000 cases they were deadly.

What possible justification is there for denying them the safer treatment? In Scotland and Wales it is already available as of right to everyone in need: children and adults alike. In England it is provided for people over 16 only if they are fortunate enough to live in the right area. And this cruelly discriminatory policy is made all the more shocking by the potentially grave further risks of blood-borne infection now revealed by the recent disclosure that plasma from a man later diagnosed with vCJD was used in 1996 and 1997 to manufacture haemophilia treatment.

Here again, the risk is played down by officials. The department's Chief Medical Officer is quoted as saying that the risks of vCJD infection are "purely theoretical". But these words offer no comfort to parents in shock from knowing their child has been treated with plasma derived from a donor with vCJD. They and others ask why--if the risks are in fact "purely theoretical"--it should have had to be put to the test by people already twice infected by other "theoretical" but lethal risks? Only a ministerial pledge to make the safer treatment available to everyone will be acceptable. The Haemophilia Society has repeatedly called for that pledge and this debate is an appropriate occasion for it to be given.

I come now to Mr Justice Burton's landmark High Court judgment on 26th March. His core finding was that the supplier of blood to NHS patients has a legal duty to supply clean blood and significant compensation was awarded. Yet some 4,000 people with haemophilia were supplied with unclean blood and blood products and, while the judgment applies directly only to offences after the Consumer Protection Act came into effect in March 1988, any attempt to deny its benefits to the haemophilia community would provoke moral outrage.

The unmistakable logic of the High Court's judgment is that it is right in principle to compensate NHS patients infected by unclean blood; and unless that logic is accepted and applied to the haemophilia community, any continuing ministerial claim to the moral high ground is plainly untenable. For without question the issue is one of moral right; and in none of the parliamentary campaigns in which I have been involved in over 37 years in Parliament--even thalidomide and that for statutory recognition of dyslexia--have I felt so strongly that campaigning ought not to have been necessary.

There has been enormous all-party backing by MPs for Motions calling for equality of treatment to end the gratuitously added distress now imposed on many of the most needful victims of the historic tragedy of unclean blood. I especially recall now that Alan Milburn, the present Health Secretary, was among the signatories of a Motion tabled in another place in my name calling for exactly what I seek in this debate. That Motion, like all the others, made it plain that this is not an issue for party animus--of right and left--but one of right and wrong.

Most of all this evening, I urge Ministers not to demean this House and another place by making legal action, here or internationally, the only way to resolve an issue that is so obviously one of social decency and moral right. Knowing as they will the outcome of the legal action taken on behalf of the haemophilia community in France, I suspect that my preference for resolving this issue, if at all possible, by other than legal means will be shared by health officials here.

In France two senior officials, Dr Michel Garretta and Dr Jean-Pierre Allain, were convicted and sentenced to four years in prison and ordered to pay the sterling equivalent of £1.2 million on charges of "distributing tainted blood" that infected more than 1,250 French haemophilia patients, 273 of whom have since died. A third senior health official was given a four-year suspended sentence--but still heavily fined--and the Health Ministers resigned "in disgrace".

But my call in this debate is not to inflict retribution on public servants. It is simply to achieve social justice for a small but grievously hurt community. I ask of Ministers only that they should now let right be done and in its proper setting: here in Parliament.

Photo of Lord Clement-Jones Lord Clement-Jones Liberal Democrat 6:42 pm, 23rd April 2001

My Lords, I believe that the House should heartily thank the noble Lord, Lord Morris, for raising this issue yet again. It is unfortunate that I should have to congratulate the noble Lord on his dogged persistence in raising this issue time and time again. I can remember at least two previous debates this time last year and another in 1998. I remember innumerable Starred Questions on the subject, and yet the noble Lord must reiterate the same issues and points time and time again in debate. It is extremely disappointing that tonight we hold yet another debate to point out the problems faced by the haemophilia community as a result of the infected blood products with which the noble Lord has so cogently dealt tonight.

Many of us are only too well acquainted with the consequences of infected blood products which have affected over 4,000 people with haemophilia. We know that as a consequence up to 80 per cent of those infected will develop chronic liver disease; 25 per cent risk developing cirrhosis of the liver; and that between one and five per cent risk developing liver cancer. Those are appalling consequences.

Those who have hepatitis C have difficulty in obtaining life assurance. We know that they have reduced incomes as a result of giving up work, wholly or partially, and that they incur costs due to special dietary regimes that they must follow. We also know that the education of many young people who have been infected by these blood products has been adversely affected. The noble Lord, Lord Morris, was very eloquent in describing the discrimination faced by some of them at work, in school and in society, and their fears for the future. He referred to the lack of counselling support and the general inadequacy of support services for members of the haemophilia community who have been infected in this way.

There are three major, yet reasonable, demands made by the haemophilia community in its campaign for just treatment by the Government. To date, the Department of Health appears to have resisted stoically all three demands. First, there is the lack of availability on a general basis of recombinant genetically-engineered blood products. Currently, they are available for all adults in Scotland and Wales but not in England and Northern Ireland. Do we have to see the emergence of a black market or cross-border trade in these recombinant products? Should not the Government make a positive commitment to provide these recombinant factor products for all adults in the United Kingdom wherever they live? Quite apart from that, what are the Government doing to ensure that the serious shortage of these products is overcome? In many ways that is as serious as the lack of universal availability. Those who are entitled to them find it difficult to get hold of them in the first place.

The second reasonable demand of the campaign is for adequate compensation. The contrast with the HIV/AIDS situation could not be more stark. The noble Lord, Lord Morris, referred to the setting up of the Macfarlane Trust which was given £90 million as a result of his campaigning in 1989. The trust has provided compensation to people with haemophilia who contracted HIV through contaminated blood products. But there is no equivalent provision for those who have contracted hepatitis C. The Government, in complete contrast to their stance on AIDS/HIV, have continued to reiterate that compensation will not be forthcoming. The Minister of State for Health, Mr Denham, said some time ago that at the end of the day the Government had concluded that haemophiliacs infected with hepatitis C should not receive special payments. On 29th March of this year the noble Lord, Lord Hunt, in response to a Starred Question tabled by the noble Lord, Lord Morris, said:

"The position is clear and has been stated policy by successive governments. It is that, in general, compensation is paid only where legal liability can be established. Compensation is therefore paid when it can be shown that a duty of care is owed by the NHS body; that there has been negligence; that there has been harm; and that the harm was caused by the negligence".--[Official Report, 29/3/01; col. 410.]

The Minister said something very similar on 26th March. This means that the Government have refused to regard a hepatitis C infection as a special case despite the way in which they have treated AIDS/HIV sufferers who, after all, were adjudged to be a special circumstance. These are very similar situations.

In our previous debate on this, noble Lords referred to the similarity between the viral infections. They are transmitted to haemophiliacs in exactly the same manner; they lead to debilitating illness, often followed by a lingering, painful death. I could consider at length the similarities between the two viral infections and the side effects; for example, those affected falling into the poverty trap. We have raised those matters in debate before and the Government are wholly aware of the similarities between the two infections.

The essence of the debate, and the reason for the anger in the haemophilia community, is the disparity in the treatment of haemophiliacs infected with HIV and those who, in a sense, are even more unfortunate and have contracted hepatitis C. We now have the contrast with those who have a legal remedy, which was available as demonstrated in the case to which the noble Lord, Lord Morris, referred, and are covered by the Consumer Protection Act 1987. This latter case was in response to an action brought by 114 people who were infected with hepatitis by contaminated blood. The only difference between the cases that we are discussing today and the circumstances of those 114 people is the timing. Is it not serendipity that the Consumer Protection Act 1987 covers those 114 people but not those with haemophilia who are the subject of today's debate?

It is extraordinary that the Government--I have already quoted the noble Lord, Lord Hunt--take the view that it all depends on the strict legal position. Quite frankly, the issue is still a moral one, as we have debated in the past. In fact, the moral pressure should be increased when one is faced with the comparison with both that case and the HIV/AIDS compensation scheme. People with haemophilia live constantly with risk. We now have the risk of transmission of CJD/BSE. What will be the Government's attitude to that? Will they learn the lessons of the past? I hope that the Minister will give us a clear answer in that respect.

I turn to the third key demand of the campaign by the haemophilia community. Without even having had an inquiry, the NHS is asserting that no legal responsibility to people with haemophilia exists. The Government's position--that they will not provide compensation where the NHS is not at fault--falls down because that is precisely what the previous administration did in the case of those infected with HIV. An inquiry into how those with hepatitis C were infected would perhaps establish very similar circumstances.

Other countries such as France and Canada have held official inquiries. Why cannot we do the same in this country? The Government's refusal to instigate a public inquiry surely fails the morality test. Surely the sequence of events which led up to what has been widely referred to as one of the greatest tragedies in the history of the NHS needs to be examined with the utmost scrutiny. Why do the Government still refuse to set up an inquiry? Is it because they believe that if the inquiry reported it would demonstrate that the Government--the department--were at fault?

Doctors predict that the number of hepatitis C cases among both haemophiliacs and the general population is set to rise considerably over the next decade. The Department of Health should stop ignoring the plight of this group. They should start to treat it fairly and accede to its reasonable demands. The Government's attitude to date has been disappointing to say the least. This debate is another opportunity for them to redeem themselves.

Photo of Lord Astor of Hever Lord Astor of Hever Conservative 6:51 pm, 23rd April 2001

My Lords, like the noble Lord, Lord Clement-Jones, I, too, thank the noble Lord, Lord Morris of Manchester, for initiating this important debate. It is always a great pleasure to speak in a debate initiated by the noble Lord. I, too, pay tribute to him for his dogged persistence in returning again and again to this cause about which he has spoken so movingly today. The Haemophilia Society is indeed fortunate to have him as its very effective president.

We on these Benches share his concern for the plight of those haemophiliacs who received infected blood products before the hepatitis C infection could be removed. People with haemophilia are a small but vulnerable patient group who, through no fault of their own, have suffered a lot. We feel a great deal of sympathy for them. I agree with the noble Lord, Lord Morris, that they have shown incredible courage, fortitude and moral strength.

We, on these Benches, have always argued against no-fault compensation for medical accidents in the NHS. But we feel that there are a number of ways in which the Government can and should be helping these unfortunate people.

First, haemophilia sufferers should be treated equally, irrespective of where they live. That is not happening. Comprehensive care centres provide specialised care and support for patients and their families. However, as the noble Lord, Lord Clement-Jones, said, the provision of these centres is uneven. They are also subject to postcode rationing. Some NHS regions have several care centres while others are under-provided. The South West has none. For haemophiliacs living in Cornwall or Devon the nearest centre is in Basingstoke, Hampshire, 237 miles from Penzance. The Trent region, however, has four centres.

During the course of the debate in November last year in the name of my noble friend Lord Howe, the Minister, the noble Lord, Lord Hunt, told the House that the Haemophilia Alliance was developing a national service specification to help standardise all aspects of haemophilia services. This was intended to get rid of unacceptable variations in care. I understand that the Government are still considering the representations. Can the Minister tell the House when the specification might be published?

I also understand that the Government are setting up a hepatitis C expert steering committee which will produce an important consultation document. How wide a remit, and how much authority, will that document have over the wide range of specialist services including haemophilia which treat, support and care for people with hepatitis C?

There is currently no nation-wide system to identify and monitor all people with haemophilia infected with HCV. What plans do the Government have to ensure that, in the interests of the safety and well being of this patient group, such a system is created?

The majority of health authorities either do not provide treatment for HCV or only on a limited and inadequate scale. The combination therapy, involving Interferon alpha and Ribavirin, which is able to cure up to 40 per cent of patients, costs some £9,600 per annum per patient. Although NICE recommended that patients suffering from moderate or severe HCV should be given the combination therapy, there are concerns that the NICE guidance will not be enough to solve the postcode lottery. This is gambling with lives--and despite repeated assurances from Ministers that people with haemophilia would not be denied treatment for HCV. Timely drug treatment does reduce the long-term costs of care, particularly the need for expensive liver transplants. Can the Minister tell the House how the Government intend to honour these ministerial assurances?

We believe that the barrier to funding relatively expensive drug therapies could be eliminated by the creation of a central funding mechanism for such exceptional medicines quite separate from health authority budgets. I know that the Minister, the noble Lord, Lord Hunt, has reservations on this score. However, it is unlikely that health authorities will follow NICE guidelines despite the additional resources which have been put into the health service. I should be grateful to know, therefore, whether the Minister's department has further reviewed our suggestion to ensure that people with haemophilia are not refused their only hope of a cure. It cannot be right that there is unequal access in different areas to this treatment.

As the noble Lord, Lord Clement-Jones, pointed out, there are fears that the Government are putting haemophiliacs in England at risk from vCJD. In England, unless they are new patients, or under 16, haemophiliacs must use blood products derived from human blood with all the risks, including CJD, which this might entail. Haemophilia sufferers in Scotland, Wales and Northern Ireland, on the other hand, are given the safe, genetically-produced, recombinant Factor 8. This is also postcode care for haemophiliacs.

This is most apparent in the English haemophilia centres in Liverpool and Manchester to which patients from North Wales go for treatment. The policy adopted by the NHS commissioners in Wales means that all haemophiliacs living in North Wales are entitled to receive recombinant Factor 8 irrespective of age, postal code or viral status, and attend the Manchester or Liverpool centres. However, many people living in Manchester, Liverpool and the surrounding areas do not have the same rights and benefits. The Government must now stop treating haemophiliacs in England as second-class citizens. After all, as the noble Lord, Lord Morris, said, the Government came to power on a commitment to the vulnerable that is non-negotiable.

I therefore ask the Minister what plans the Government have to ensure that plasma-derived treatments are successfully screened for new variant CJD. What reason is there for further denying to adult haemophilia sufferers in England the safer recombinant clotting factors? Was the decision to withhold this treatment taken on financial or clinical grounds? Was it because there is a world shortage of recombinant Factors 8 and 9? If that is the case, what representations are the Government making on behalf of the haemophilia community to secure a full supply to the UK as soon as possible?

There seems to be a lack of welfare support for many haemophilia sufferers. I have received several reports of a lack of information in DSS offices at a local level. I am aware that the Minister is not a DSS spokesman. However, it would be helpful to have some reassurance that this problem will be looked at.

We feel that far more funding is needed for research. There is much about HCV that remains unknown. The precise mechanisms by which HCV causes liver cancer have not been identified. We still need a simple, cost effective and reliable diagnostic assay test, both for the initial detection of HCV and for monitoring the disease as it progresses. Perhaps the Minister can touch on funding for research when he winds up.

The noble Lords, Lord Morris and Lord Clement-Jones, both mentioned in some detail the High Court judgment made by Mr Justice Burton. Doubtless the Minister will comment on the Government's response.

I much look forward to the Minister's remarks in winding-up, particularly as I have lobbed him a formidable number of questions. I quite understand that he may not be able to answer them all tonight, but perhaps he could respond by letter to the others.

Photo of Lord Burlison Lord Burlison Labour 7:01 pm, 23rd April 2001

My Lords, I join noble Lords in thanking my noble friend Lord Morris of Manchester for raising this issue. After hearing his submission today, no one can be in any doubt of the noble Lord's commitment to this cause. Like other noble Lords, I know that, as president of the Haemophilia Society, he will pursue this issue in a dogged fashion until he makes progress generally on behalf of that society.

Perhaps I may also assure your Lordships that my noble friend Lord Hunt of Kings Heath, like myself, feels very strongly about the issue. The fact that this debate has taken place tonight demonstrates yet again the strength of feeling within this House on behalf of people with haemophilia and hepatitis C.

Haemophilia is a lifelong, painful and debilitating condition. But modern treatment is very effective, with patients now able to look forward to a good quality of life. Sadly, during the late 1970s and indeed the 1980s, the majority of regularly treated patients with haemophilia were infected with either HIV or hepatitis C before it became possible to remove those viruses from clotting factors made from human plasma.

As a result, around 4,000 to 5,000 haemophiliacs are estimated to be infected with hepatitis C and around 500 are still living with HIV. Most of those with HIV are also infected with hepatitis C. This co-infection may accelerate the clinical course of both disorders as well as making the haemophilia more difficult to manage. They therefore face considerable medical and psychological problems over and above those faced ordinarily by people with haemophilia.

The Government have enormous sympathy for haemophiliacs in this situation. It is therefore essential that the National Health Service is properly geared up to delivering the full range of clinical and support services needed by people with haemophilia and treatment-acquired infections. These include routine and emergency medical treatments, drug therapies, physiotherapy, counselling, genetic services and specialised services for HIV and hepatitis.

I shall say more about these broader issues in a moment, but first I want to respond to the many points made by noble Lords. I begin with the call on the Government to provide financial assistance for people with haemophilia and hepatitis C and their dependants. As Members of this House are well aware, we met the Haemophilia Society in 1997 and listened to its arguments for a special payment scheme for people with haemophilia and hepatitis C similar to that in place for HIV. After long and careful consideration, we came to the same conclusion reached by the previous government; that a special payment scheme should not be established. Succeeding Ministers have reviewed that decision and have reached the same conclusion. It has also been debated on numerous occasions in both Houses. It is not a view we have come to lightly. I can assure noble Lords that every one of my colleagues who has looked at this issue and met individuals directly affected by this tragedy has found this a most difficult position to arrive at.

The Government have also considered the suggestion that we might provide a limited special payment scheme or hardship fund. However, as we do not make payments to other groups or individuals inadvertently harmed by the National Health Service, the same arguments apply. 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 in ensuring that people with haemophilia are made more fully aware of their benefit entitlements.

It has been the policy of successive governments that compensation or other financial help to patients is paid only when the National Health Service or individuals working in it are at fault. 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 health care. There have been no new developments to change this long-standing policy.

We are currently assessing the implications of the recent decision in the High Court (raised by noble Lords) to award damages to 114 people infected with hepatitis C though blood transfusion before the introduction of screening for the virus in September 1991. The case was brought under the Consumer Protection Act 1987 which introduced strict liability for products judged to be defective. However, the judgment does not impact on the question of compensation for haemophiliacs with hepatitis C who were infected before the Act came into force in March 1988.

The Government have decided not to seek leave to appeal against the judgment. Although an appeal would have provided an opportunity to seek clarification on some aspects of the judgment that may have a bearing on the future liability of the National Health Service bodies, the Government did not wish to subject the claimants to a further period of uncertainty while an appeal was under way.

As I mentioned, we are now focusing on the implications of the judgment, which will take time to consider. However, we have no plans for the introduction of a no-fault compensation scheme. Such a scheme would have far-reaching policy and financial implications which would need to be explored very carefully.

During the course of our debate, comparisons have been 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 and the ex gratia payments we are making to people with variant CJD and their families. However, there are significant and real differences between these situations.

In the case of HIV, we need to think back to the circumstances of the late 1980s when HIV was having a vast and dramatic impact. It was a source of fear and a stigma for all those who became infected with the virus. There was wide-scale public reaction. HIV then was a new sexually transmitted infection which was rapidly fatal. There was no treatment and, at that time, death from IDS-related diseases was considered inevitable.

It was in that context that special payments were introduced and the Macfarlane Trust was established. We see this as a reflection of those truly exceptional circumstances and the very poor prognosis at that time for people with haemophilia who became infected with HIV.

Questions have also been asked about the parallels between those infected with hepatitis C and those with variant CJD. However, while the Government have agreed ex gratia payments for victims of variant CJD in the wake of the Phillips inquiry, the circumstances and background to this situation are truly exceptional. It therefore does not change our long-standing policy on compensation for injuries caused by the National Health Service, which I firmly believe is the right one.

The noble Lord, Lord Astor, raised the issue of comprehensive care centres. There are 18 centres throughout England and smaller haemophilia centres in each National Health Service region in England providing care and counselling to haemophiliacs.

Noble Lords have called for a public inquiry. I can understand that people infected with hepatitis C want to know how it happened and why it could not have been prevented. But the fact is that this was a global problem linked to developing science and technology. It was not confined to the UK or linked to some local breakdown in blood product development. No public inquiry is likely to provide a satisfactory answer. Our aim now is to move forward to enable people with haemophilia and hepatitis C to get on with their lives and to look constructively at how we can improve their health and well-being here and now.

Several points have been made about the provision of recombinant clotting factors. Recombinant clotting factors are commercially produced through genetic engineering outside the human body. They are not yet entirely free from human products, as they contain small amounts of human albumin as a stabiliser. The Haemophilia Society, the UK Haemophilia Centre Doctors Organisation and others have petitioned us to make recombinant Factor 8 and Factor 9 the treatment of choice for people with haemophilia. That is largely on the grounds that recombinant products are regarded as free from the risk of transmission of as yet unknown viruses and free from the theoretical risk of variant CJD.

There is a serious world-wide shortage of recombinant clotting factors. That has been exacerbated recently by the temporary removal from the market of a Factor 8 product used extensively in the UK. The Government have been working closely with the UK Haemophilia Centre Doctors Organisation and with suppliers of clotting factors to manage the situation in a way that best meets the needs of haemophilia patients. However, that illustrates the very real problems faced by the UK and other countries in securing sufficient and sustainable supplies of these products.

That is one of the factors uppermost in our minds in considering the call to place all adult haemophilia patients in England on recombinant clotting factors. We have not yet come to the end of our deliberations on the issue, so I am unable today to give noble Lords the assurances they are seeking. The Government already require National Health Service trusts to provide recombinant Factor 8 and 9 for all new haemophilia patients and children under 16. Other patients can also receive recombinant if it is prescribed for them, although there is no requirement on trusts to do so. Over 50 per cent of the clotting factors prescribed in the National Health Service in England are currently recombinant. However, the fact remains that there is insufficient recombinant clotting factor available now and in the immediate future to give it to every patient who would like to have it.

However, I can assure the House that the plasma derived clotting factors that patients are receiving are just as effective as recombinant products. Since the introduction of viral inactivation they have had an excellent safety record. They are made from non-UK plasma to reduce the theoretical risk of variant CJD and are subject to the same rigorous assessment for safety, quality and efficacy as all other medicines. Manufacturers of blood products, such as the National Health Service-owned Bio Products Laboratory, are also required to meet very stringent requirements of good manufacturing practice regulated by the Medicines Control Agency.

Looking to the future, the Government want haemophiliacs with hepatitis C to receive the best treatment and care we can provide; and that is where I hope we can begin to focus our energies.

Photo of Lord Morris of Manchester Lord Morris of Manchester Labour

My Lords, I am grateful to my noble friend for giving way. The noble Lord, Lord Astor of Hever, raised a specific case. In Manchester's haemophilia treatment centre, patients from North Wales have to be treated more beneficially than local people because of a decision by the Welsh Assembly. What possible defence can be offered for treating people in Manchester differently from people from North Wales who are visiting the North-West of England to attend the treatment centre? They have to be prescribed recombinant treatment as of right and regardless of age and, therefore, are treated more beneficially than Manchester patients. Is it not possible now to say that such discrimination cannot continue?

Photo of Lord Burlison Lord Burlison Labour

My Lords, the noble Lord, Lord Astor, raised the issue in relation to recombinant factors and treatment. I tried to set out the difficulties surrounding that issue at the moment. The Government are considering the issue. Indeed, when they are in a position to do so, they will make a decision. If the noble Lord is not happy with that, I am ready to write to him.

The noble Lord, Lord Astor, raised the issue of consistency of treatment. There is evidence that greater consistency is needed across the country in the delivery of clinical care for haemophilia patients. The professional groups with an interest in haemophilia have recommended the development of a set of minimum standards for service delivery. That should be a very effective way of helping to standardise all aspects of haemophilia services in the longer term and get rid of any unacceptable variations in care. With that in mind, the Haemophilia Alliance, which includes the Haemophilia Society and the UK Haemophilia Centre Doctors Organisation, has developed a national service specification. The specification outlines the key components of a high quality haemophilia service, whether that is provided in the larger comprehensive care centres or the smaller haemophilia centres. That is currently out for consultation. The Department of Health will be submitting its comments shortly.

The Government recognise the importance of hepatitis C as a public health issue and the need to ensure that effective prevention, testing and treatment services are in place. It is essential that activities to tackle hepatitis C are developed in a strategic and co-ordinated manner. I believe that we are already doing that, but we wish to develop and strengthen our efforts.

As noble Lords will be aware, the Government have recently announced the establishment of a multi-disciplinary steering group to assist in developing a strategic approach to hepatitis C. The steering group, which is chaired by Professor Howard Thomas of Imperial College School of Medicine, will bring together issues relating to prevention, control and treatment. It will produce a document by the end of this calendar year for consultation with the National Health Service, professional bodies and voluntary and community sector organisations.

In 1999 we asked NICE to assess the interferon/ribavirin combination therapy as a matter of urgency. NICE's guidance was published last autumn and provided clear and authoritative advice for clinicians and healthcare providers. Combination therapy is recommended as the treatment of first choice for moderate to severe hepatitis C in previously untreated patients and patients treated with interferon monotherapy who responded but have relapsed. The treatment should make a significant improvement to the prognosis for many people with hepatitis C.

Several other therapeutic agents which also show great promise are in development. Other treatments are being researched, such as different combinations of drugs. The next few years are likely to see significant developments and improvements in the treatments available.

As I have outlined, there is much that we can do and are doing through improved treatments and services to help people with haemophilia. We shall continue to work with all those involved in haemophilia care to improve the services and support available to haemophiliacs with hepatitis C.

Photo of Lord Ackner Lord Ackner Crossbench

My Lords, before the noble Lord sits down, I wonder whether he can help me on one point. I understand fully the principle to which the Government have adhered; namely, that compensation is not paid in a situation such as this, where negligence cannot be established. What would assist me would be to understand how the position of haemophiliacs differs from that of victims of criminal injuries; that is, persons who have been injured by criminal activity. Millions of pounds have been spent and continue to be spent, but there is no question of any negligence or vicarious liability. Can the noble Lord explain how to differentiate one from the other?

Photo of Lord Burlison Lord Burlison Labour

My Lords, I understand the noble and learned Lord's question, but I do not think that I can assist him. This is an area I would be quite loath to go into. I shall write to the noble and learned Lord on the matter.

House adjourned at twenty-two minutes past seven o'clock.