Haemophiliacs (Compensation)

– in the House of Commons at 1:29 pm on 11th December 1996.

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Photo of Mr John Marshall Mr John Marshall , Hendon South 1:29 pm, 11th December 1996

The issue that we are now to discuss has been raised on a number of occasions, and has secured widespread support across both main political parties. The right hon. Member for Manchester, Wythenshawe (Mr. Morris) has been a doughty supporter of this cause, as indeed have the hon. Members for Leeds, East (Mr. Mudie) and for Wallasey (Ms Eagle). I have also been supported by my right hon. Friends the Members for Wealden (Sir G. Johnson Smith) and for Worthing (Sir T. Higgins) and my hon. Friend the Member for Exeter (Sir J. Hannam).

This is not the first time that I have raised the problem of haemophiliacs in the House. Indeed, the first time was in an Adjournment debate in October 1990. In parenthesis, I pay tribute to the tolerance, broad-mindedness and compassion of my right hon. Friend the Member for Chelsea (Sir N. Scott). At that time, I was his parliamentary private secretary, and the Whips' Office was not terribly amused at the thought of a PPS raising an issue that was not exactly complimentary of Government policy, but my right hon. Friend treated me, as all who know him would expect, with compassion, and I think that he had more than a mite of support for my cause.

My Adjournment debate was followed only a few weeks later by the Government's decision to compensate all haemophiliacs infected with human immunodeficiency virus. There are three reasons why I am still taking up the cause. First, it seems to me fundamentally wrong that individuals who suffer as a result of treatment given on the national health service should be ignored by society. If treatment creates a problem, exacerbates a situation or causes premature death or economic suffering, we as a society cannot, like the Pharisees of old, walk on the other side of the road, indifferent to the suffering that has been created.

Secondly, I once tutored a haemophiliac, and became well aware of the difficulties that haemophiliacs face. My student, who lived in Dunoon, suffered from internal bleeding. For a whole academic year, he was unable to make the journey from Dunoon to Glasgow university, so he attended not one lecture. He had to make do with a number of tutorials which I went down to Dunoon to give. As a result of not attending lectures, he came out second in the year. That showed how valuable lectures were, or it may have shown, as I tried to convince my friends with mixed success, how valuable my tuition was. Here was an individual facing great hardship and suffering, yet he worked hard to ensure that he passed his examinations, and made a positive contribution to society.

Thirdly, one of my constituents is Rev. Alan Tanner, chairman of the Haemophilia Society. He is much admired in Hendon and elsewhere for the courage that he has shown and his cheerfulness in the face of adversity. He is a good witness to his faith. The work of the Haemophilia Society is universally admired for what it does for a relatively small number of people in the United Kingdom.

Today is a happy coincidence. When Madam Speaker drew the numbers out of the ballot, she did not know that, later this afternoon the right hon. Member for Wythenshawe and I would hand in a petition at No. 10 Downing street which would demonstrate the depth of feeling among not only Members of Parliament and haemophiliacs but others who had a social conscience and recognised the need to improve the position of haemophiliacs infected with hepatitis C.

In addition, this afternoon there will be a lobby of Parliament by those who feel strongly about the matter. So it is a happy coincidence that we are having this debate today, and we ought to thank Madam Speaker for being clever enough to draw my number. As I have had three Adjournment debates this Session, perhaps I ought to buy a ticket for the national lottery this weekend.

The origin of the problem goes back to the 1970s, when there was a failure to screen imported blood products. My view is that that demonstrated negligence on the part of the Department of Health. It was known at that time that, in the United States, blood donors were paid for giving blood. Those who feel so hard up that they give pints of blood for money include drug addicts and others whose blood may well be infected. The Department of Health must have known of those risks.

In the 1960s or early 1970s, the Institute of Economic Affairs produced a pamphlet entitled "Paying for Blood". Those who reviewed that pamphlet in the serious press made the point that, in the United States, where people paid for blood, infected blood was given.

So we are discussing the issue in the 1990s because there was some negligence and complacency in the 1970s. If my right hon. Friend the Member for Wealden were here, he would make the point that, at the beginning of the 1980s, he and his wife made visits to the United States. His wife is a distinguished general practitioner. She heard expressed then some of the concerns about the safety of certain blood products. In 1986, heat treatment was introduced to end the risk of contaminated blood products in the United Kingdom. We can therefore rejoice that a similar disaster will not happen in future, but we must face the consequences of the indecision of the 1970s.

The justification for giving assistance to haemophiliacs with HIV was that they faced a suspended sentence of death. Indeed, many died fairly quickly of full-blown acquired immune deficiency syndrome. Others have lingered on, and, such are the advances in medical science, some may do so for many years to come. All who have lived have done so not knowing how long they would live. Many found it difficult to get a job, and certainly difficult to get a mortgage. Of course, in the case of hepatitis C, there is a difference, but it is only of degree.

Some of those infected with hepatitis C have already died. Others will die prematurely. There has been no official estimate. Indeed, in answer to a recent parliamentary question, the Department of Health admitted that it had made no estimate of the number of those infected with hepatitis C who would die in the next five years. In the absence of an official estimate, I give my hon. Friend the Minister my estimate. At least 700 will die prematurely. For many others, the quality of life will deteriorate dramatically, and they will suffer severe physical and economic hardship. Of the 3,000 or so infected, only about 600 will make a full recovery.

It is true that those with hepatitis C do not suffer the prejudice that is associated with HIV. Those who attended a meeting in No. 1 Parliament street, as I know the right hon. Member for Wythenshawe did, listened to the victims and their families. The hardship they suffer is very real indeed. The hardship is physical. There was a driver there who said that he had managed to drive a lorry despite suffering haemophilia, but that the additional pain associated with hepatitis C meant that he could no longer do so. He suffered the indignity of losing his job, as well as the physical pain of his illness.

Victims lose self-respect when they lose their job. They feel that they ought to be the breadwinner, but they know that they can no longer be so. For all of them there is physical pain, emotional pain and hardship. Already more than 60 have died.

There is one particular family whose experience encapsulates the problem in its entirety. In that family, three brothers have died: two were haemophiliacs infected with HIV and one was a haemophiliac infected with hepatitis C. How can we say to the mother that it was right and proper that her two sons who were infected with HIV should be the subject of compensation, but that, in the case of her son who was infected with hepatitis C, not a penny should be paid in compensation?

One would need the intellectual casuistry of a Treasury mandarin to justify such an action. To say that one death is worthy of compensation, but that another is worth nothing at all is heartless and intellectually barren. It is not only grieving relatives who find the differential unacceptable and immoral—more than 270 Members of Parliament have signed early-day motion 4, asking for compensation to be paid. The vast bulk of decent people find the differential unacceptable.

Of course, we welcome the fact that the Department of Health is funding treatment to try to improve victims' quality of life. I also welcome the research into haemophilia that is taking place at the Royal Free hospital, which helps to give hope that, in future, haemophilia will cease to be the scourge that it has been, and that it will be eradicated.

When my hon. Friend the Minister was asked earlier this year whether he would provide help, he argued that the Department of Health budget should be used for patient care. Everyone accepts that the Secretary of State and his Ministers should try to protect the Department of Health budget—indeed, I congratulate my right hon. Friend the Secretary of State on his success in so doing—but the argument that help should be denied because the health budget must be protected is intellectually threadbare and immoral.

We all know that, when the Macfarlane Trust was set up, for which measure our right hon. Friend the Leader of the House was responsible, no one said that the money would have to come out of the Department of Health's budget. There is a thing called the contingency fund that can be used to bail out Departments in such circumstances; when, in 1990, compensation was paid to haemophiliacs with HIV, the contingency fund bailed out the Department of Health—the money did not come out of the Department's budget. My right hon. Friend the Chief Secretary should remember that, because he was the Secretary of State for Health at that time.

The Haemophilia Society has, in a statesmanlike way, recognised the Treasury's problems, and said that its immediate priority is the creation of a hardship fund to help the relatives of those who have died, and those who are too ill to work. The cost of such a fund would be somewhere about £12 million to £15 million. That is a small price to pay to ensure that hardship is relieved—it is a mere bagatelle in the totality of Government expenditure. We can all think of ways in which Government money is wasted, and anyone who says that that small sum cannot be found cannot be looking very hard.

Thereafter, we have to look to the future. There would be merit in setting up an inquiry to hear what outside experts say about the number of people who will die and the extent of the hardship created. The inquiry could also look into the possibility of doing more to help those who have been so unfortunate as to receive what was thought at the time to be a good treatment—one that would improve their life expectancy and give them a better quality of life—which has instead destroyed their quality of life and, in many cases, reduced their life expectancy and caused great economic hardship. That we should refuse to give assistance to a small group of people who are suffering through no fault of their own is not to the honour of this country, and it is not moral.

Photo of Mr Alf Morris Mr Alf Morris , Manchester Wythenshawe 1:44 pm, 11th December 1996

I was glad to learn that the hon. Member for Hendon, South (Mr. Marshall) had secured this timely debate, and I most warmly endorse his moving plea.

Sadly, more than 60 of the victims of the tragedy have already gone to their graves with a deep sense of injustice. The achievement of elementary justice for some very needful people is at the heart of our campaign, which, as the hon. Member said, is now supported by more than 270 Members of Parliament of all parties. Our campaign is also about morality. The Government accepted their moral responsibility in the case of HIV infection in the course of national health service treatment. They now have the same responsibility in the hepatitis C cases.

It is morally wrong to deny the victims of this appalling further tragedy in the haemophilia community the modest help they seek. What is morally wrong ought no longer to be tolerated in Britain. There is ample parliamentary time available. The Government's legislative programme is gossamer thin, and, given the nod by Ministers, I am sure that the House would approve within an hour the help we seek.

Photo of John Horam John Horam , Orpington 1:45 pm, 11th December 1996

It is almost exactly a year since we had a similar debate on this subject. At that time, it was the hon. Member for Leeds, East (Mr. Mudie) who was successful in the ballot. Today, it is my hon. Friend the Member for Hendon, South (Mr. Marshall) who has initiated the debate. That is entirely appropriate. Not only is his constituent Rev. Alan Tanner the chairman of the Haemophilia Society, whose work in this field we all applaud, but my hon. Friend has himself taken a continuing interest in the plight of those patients with haemophilia who were inadvertently infected with hepatitis C through blood products, before those products began to be heat-treated in 1985.

I was interested to learn that my hon. Friend's first Adjournment debate on this subject was as long ago as October 1990, which must be some sort of record. He stated his case today not only movingly, as the right hon. Member for Manchester, Wythenshawe (Mr. Morris) said, but extremely eloquently. I answered a related question from my hon Friend only two weeks ago; he is also a sponsor of early-day motion 4, which was tabled this Session; and I am also aware of early-day motion 9, which was tabled last month.

Health Ministers have had the opportunity twice this year to meet with my hon Friend to discuss these issues. The discussions which I have had with my hon Friend and with representatives of the Haemophilia Society have brought home to me very clearly the plight of those who find themselves infected with hepatitis C, in addition to suffering from haemophilia. Nobody could fail to sympathise with the distress of people who, already suffering from one disorder, have found that the treatment for that disorder has given them another.

That is especially true because factor 8 transformed the lives of many people with haemophilia—we should not forget that it greatly increased their life expectancy and improved their quality of life. It was undoubtedly the best treatment available for people with haemophilia in the light of medical knowledge at the time. However, medical procedures rarely come without risk, and those are not always known about or capable of being guarded against in time.

Factor 8, at the time at which the people we are talking about were infected, was made from human plasma and, for the most part, it still is. We have a very safe blood supply, thanks to the voluntary basis of the scheme—that contrasts with the scheme in America, to which my hon. Friend referred—and because of the screening and other safety measures that are in place. I am glad to say that UK blood remains among the safest in the world.

Photo of Sir Geoffrey Johnson Smith Sir Geoffrey Johnson Smith , Wealden

Will my hon. Friend clear up a point about factor 8? In a previous debate, I asked about factor 8 treatment. None of us is a medical scientist, but I believe that there is a genetically manufactured form of factor 8, called, I think, recombinant factor 8. Am I right in saying that it could help to prevent further infection?

Photo of John Horam John Horam , Orpington

In answer to my right hon. Friend, whose interest in this area I also acknowledge, it is for clinicians to decide whether to use the plasma-based factor 8 or recombinant factor 8. I should stress that, although recombinant factor 8 has some advantages, it is not without disadvantages. For example, it can encourage the development of inhibitors, a problem that has been encountered by some of those who have used recombinant factor 8. So neither is without a small element of risk.

My right hon. Friend will recall that recombinant factor 8 uses plasma-derived albumin as a stabiliser, and therefore is not entirely free of problems. Nothing is totally risk-free, and it must be for clinicians to decide which of the two, given also their relative cost, is best to use.

May I return to the issue of blood and blood products? All reasonable steps are taken to ensure their safety, including the careful questioning of donors to exclude those likely to represent a risk of transmitting infection, and the testing of donations for hepatitis B and C, HIV 1 and 2, and syphilis. Pools of plasma from which blood products are to be made are tested again, and, wherever it is possible, as it is with factor 8, undergo manufacturing processes to remove or inactivate viruses. Also, all batches of blood products are separately tested for viral markers of infection by the independent National Institute for Biological Standards Control.

The safety of blood and blood products is kept under regular review by the expert Advisory Committee on the Microbiological Safety of Blood and Tissues for Transplantation, which advises Health Ministers.

Not all the current safety measures that I have mentioned were available at the time that we are discussing today. That was a long time ago—before blood products began to be heat-treated in 1985 to destroy viruses. I stress that factor 8, which has been treated to destroy viruses, has an excellent safety record.

Nor was there at the time a test available for detecting hepatitis C in blood donations. Such testing was introduced in 1991 as soon as reliable tests first became available. The people we are discussing today therefore received the best treatment available at the time.

My hon. Friend the Member for Hendon, South mentioned numbers. Let me remind the House of the number of people we are talking about. It is thought that some 4,000 people with haemophilia may have been infected with hepatitis C through blood products before heat treatment of those products was introduced. Of those, about 1,000 were, sadly, also infected with HIV, and have received payments under the HIV-haemophilia scheme. In addition, possibly a further 3,000 people who are still alive, who had blood transfusions before September 1991 and who have been infected with hepatitis C as a result, are likely to be identified by the look-back exercise that is in progress.

It has been suggested in this debate that there have been more than 50 deaths of haemophiliacs from liver disease so far. We have no reason to dispute that figure. However, many people infected with hepatitis C may enjoy a long period without any symptoms appearing. Some 50 per cent. of sufferers may progress to chronic hepatitis with varying degrees of good and ill health. Some 20 per cent. of infected patients may develop cirrhosis, a progressive destruction of the liver, which may take 20 to 30 years. Fortunately, the majority of those years will be trouble-free in terms of health.

Since last year's debate, I have studied the final version of a report from the Haemophilia Society on the plight of the people we are discussing today, and in March I met representatives of the society to discuss it. The meeting covered a range of issues concerning haemophiliacs infected with hepatitis C, and I outlined the action that the Government are taking, including research and support for voluntary organisations working in that field.

The Haemophilia Society subsequently wrote to me in June asking for the Government to set up a trust fund to make payments to those infected who were in financial need, and their dependants, and also to make payments to each person who had been infected. As my hon. Friend stressed, that is similar to the help previously given to those infected with HIV.

I took time to consider these proposals carefully before replying to the Haemophilia Society in October. Most hon. Members will by now be aware that I did not accept the society's proposals for payments for those infected with hepatitis C, but I stressed that I remained open to further arguments. I also outlined the support that we are giving to work with those infected, and to research in this area.

I should mention that the society understandably prefers that the financial assistance that it requested should not be described as "compensation"—particularly as it does not consider the NHS to have been negligent in this matter. However, my reasons for not agreeing to provide the help requested hold good, however we describe the financial help sought.

First, we do not accept—I disagree with my hon. Friend on this—that the NHS has been negligent. As I said, the Haemophilia Society has confirmed that it does not dispute that point. Tragic though it may be that the treatment designed to help those infected patients should have harmed them, there can be no question but that they received the best treatment available at the time. That treatment was essential for their survival. There was no alternative. We take the view that compensation is appropriate only where there has been negligence.

If we were to provide payment on the basis of non-negligent harm, that would very quickly develop into a general no-fault compensation scheme, which would be both unworkable and unfair. That point was considered in relation to the settlement of HIV cases. On that occasion, we were convinced by the very special nature of the disease, by public reaction to it, and by arguments that it would not lead to further similar claims for compensation.

We are not convinced that hepatitis C falls into the same special category. We need to remember that, at the time of the HIV settlement, it was believed that HIV would lead speedily to death and that some haemophiliacs infected with HIV, especially children, were subject to some appalling examples of ostracism. We now know rather more about the effects of HIV, and there is a much greater public understanding of how relatively limited are the ways in which it can be passed on. We are all grateful for that.

Secondly, as my hon. Friend said, all the proposals for payment schemes involve the expenditure of substantial sums of public money. I have considered a wide range of options for such schemes—I really have done that—including the possibility of a scheme limited to those who go on to develop cirrhosis only. But they all have significant costs. As a Health Minister, I have a duty to consider the effect of such a sizeable sum on other heath service expenditure. That duty has led me to conclude that funds that are available to the NHS, from whatever source, are best used in direct patient care.

It has been suggested—it was reiterated today by my hon. Friend—that there should be funding compensation sources other than from the national health service budget. Naturally, I am sympathetic to that suggestion. Given their knowledge of how the Government work, right hon. and hon. Members who have spoken in this debate will understand that those matters are not within the compass of my duties as Health Minister, and they must look to other Ministers to put their case, particularly as regards the contingency fund, which my hon. Friend the Member for Hendon, South mentioned. It has also been suggested that money from the national lottery might be used in this case. Again, that matter can be pursued independently through the national lottery.

In its letter to me in June, the Haemophilia Society suggested a need for progress in a number of areas of work on hepatitis C, such as the treatment and care of those infected, research and public education. I want to help the society in supporting its work in that area.

A key priority must be to improve our understanding of the disease. We have made an additional £1 million available to aid research into hepatitis C, its natural history, transmission and prevalence. Although primarily geared to improving the understanding of the disease, any developments will be important to co-sufferers of haemophilia.

One of the best ways to improve still further the treatments available is to establish the relative effectiveness of new treatments such as alpha interferon. Local purchasers can then make informed decisions on using resources for the most effective treatments available for both haemophilia and hepatitis C. The standing group on health technology has identified the evaluation of the use of alpha interferon in the treatment of hepatitis C as a priority for the NHS. That work is being taken forward as speedily as possible by the National Coordinating Centre for Health Technology.

We have also been providing assistance to the Haemophilia Society in the form of grants from a Department of Health scheme for voluntary organisations, which includes a grant for a project concerned with the needs of those with haemophilia, who have also been infected with hepatitis C. I made it made clear to the society that we shall welcome proposals from it to provide continuing support to haemophiliacs infected with hepatitis C, as part of the society's on-going activities.

I regard this as a useful and practical approach, which would draw on the valuable findings of the research that the society is already undertaking. This is an area where resources can be directly targeted to provide practical help in such forms as advice and information. It will thereby improve services to infected haemophiliacs. I have assured the society that I shall take a positive view of any application for further assistance from the Department under our section 64 scheme to take this matter forward.

It being Two o'clock, the motion for the Adjournment of the House lapsed, without Question put.

Sitting suspended, pursuant to Standing Order No. 10 (Wednesday sittings), till half-past Two o'clock.