§ 1 pm
§ On resuming—
§ Mr. George Mudie (Leeds, East)I shall complete my speech as quickly as I can since the hon. Member for Hendon, South (Mr. Marshall), I am glad to see, is in his place. He has fought on this issue for a considerable period, and I am anxious that he be given the chance to speak in the debate.
I welcome the opportunity of bringing once again to the attention of the House the plight of 3,000 individuals who, while being treated in the national health service for haemophilia, were given contaminated blood products and as a result contracted hepatitis C. The Minister will be aware that those individuals were all treated before 1986. In that year, a system was introduced which prevented contaminated blood from being passed on, but for those 3,000 people, the system came too late—they had contracted hepatitis C.
Those few words in medical terms trip off the tongue so lightly and so unemotionally that it is necessary to describe the way in which that treatment has adversely affected the future of those 3,000 people. Of them, 2,500—approximately 80 per cent.—will develop chronic liver disease. I should like to spell out their fate. They will be confronted by a variety of problems, including jaundice, vomiting and abdominal pain caused by the swelling of the liver and the spleen. When that continues for a long time, it leads to scarring. Scarring means cirrhosis of the liver. Between 250 and 500 of those 2,500 people will develop cirrhosis of the liver. Chronic hepatitis and cirrhosis can lead to a hepatoma, a cancer of the liver, from which many will die. Between 1988 and 1994, more than 550 people suffering from haemophilia died from liver failure, and in 1994 alone, 14 people died in those circumstances. The rate of deaths is accelerating.
That is the future confronting that tiny group of people who, already struggling to live a normal life with the burden of the debilitating effects of haemophilia, were given treatment on the NHS which resulted in them contracting hepatitis C. I have at least one example of somebody in my constituency who suffered that fate—a youngster called Neil aged 13 years old. He grew up with haemophilia. His family nursed him through his early years; they protected him and encouraged him to lead as normal a life as possible. There were scares, as the youngster was full of life and devilment and had little respect for his haemophilia. At 12 years of age, the parents were told that their young lad had been given infected blood and had hepatitis C. I am sure that the House understands the parents' devastation.
Last week, the Haemophilia Society published a report that examined the experience and needs of those with hepatitis C. It outlined the physical problems and described the effects on individuals and their families. We should listen to the words of one man aged 31, who said:
My general health has rapidly deteriorated over the past four years. I suffer from chronic fatigue and am unable to finish a full day's work. Joint aches, pains, decreased appetite and weight loss, itching. a need for nine hours' sleep a night. I feel in the last four years my physical stamina has aged about 15 years. I have grown old before my time.Another sufferer, aged 55, said:
I have had 22 operations over the last two and a half years. 1 feel more tired as the months go on and I fear my liver will eventually fail. In the long term. the prognosis is bad.955 Although physical fears are a major problem, the effect that the disease has on the family is also a serious and continuing concern. With an infectious disease, which could become debilitating and life-threatening, the financial problems that might confront families are always uppermost in their minds. Individuals aware of the growing weakness caused by the disease worry justifiably about the financial effects that their illness will have on their family. Fears about being able to continue in employment blight and constrain any long-term financial commitments, and because of the knowledge of the illness, there is no escape route through private insurance.From reading the report, the Minister will acknowledge case after case of individuals who have faced problems at work or even problems finding work because of the illness. Salaries and careers are impossible dreams when a person has this terrible disease.
I have tried to convey the real physical and financial problems. On top of those are emotional and relationship problems caused by the disease: the worry of passing the infection on to a loved one, the dilemma of whether to have a child, and the strains on a marriage when illness means that income, and therefore standard of living, is reduced. All those factors add up to a blighted, uncertain future for each of the 3,000 people. Some may escape the full rigours of the disease, but as it may lie dormant in the body for more than 20 years, no one can tell or be entirely sure that they have escaped.
What can be done? Those four words represent the point at which—unfortunately—the Government and those concerned have in the past parted company. It is agreed that all I have spoken about until I uttered the four words "what can be done" is very sad and deserving of sympathy. Yet, when the matter was debated briefly in the other place, what followed was prevarication and an unwillingness to make any real contribution to ease the plight of those infected.
To be fair and to balance the picture, the Government were sympathetic and supportive of haemophiliacs who received contaminated blood and became infected with HIV. It is beyond argument that that disease is more severe than hepatitis C, but the similarities between them are too great to be ignored.
The circumstances under which individuals became infected with a second disease are exactly the same in each case. The test to prevent HIV being passed on stopped the hepatitis C virus being passed on. Both illnesses can be—and are—debilitating. All those who suffer face the worry of passing the disease to a loved one or to an unborn child. All face difficulties in education and employment. All face the impossibility of long-term financial commitments. All face the impossibility of gaining life insurance, unless it is offered at a totally prohibitive cost.
Let us take the case, often repeated in debates on this subject, of the three brothers who all became infected before 1986. Two of the brothers got HIV. They died. They received financial aid while they were alive and, on their death, their families received financial help. The third brother, also a haemophiliac, was infected at the same time, but did not contract HIV. He contracted hepatitis C and died. Yet during the painful debilitating stages of his illness, he received no financial help and his 956 family received no help on his death. All three contracted the first and second disease in the same way, all three died, yet the brother who had hepatitis C received no help. Does that sound fair? Does it sound sympathetic or even defensible?
I hope that the House and the Minister will agree that there is an overwhelming case for giving financial help to those individuals and their families. It could be given on the same basis as for haemophiliacs with HIV, and could even be administered through the Macfarlane trust, which it is agreed has carried out the task of distributing and administering the aid for those with HIV in an exemplary fashion.
It is hoped that there will be a hardship fund for those who are already ill, partly because they suffer major reductions in income as a result of their illness, and partly to meet the increased costs of prescription charges, transport and food. Such a fund could also provide help for the dependants of those who have died, and an across-the-board payment to all those who have been infected, who suffer from uncertainty—from not knowing whether hepatitis C will have a serious or even a fatal impact on their lives and on those of their families.
The Haemophilia Society report asked for other measures to be considered, several of which cover resources for treatment and care. They include an up-to-date information system that is easily understood and in an accessible format; treatment with interferon alpha where that is deemed appropriate; access to PCR—polymerase chain reaction—tests to confirm the existence or otherwise of the virus in the body; access to a liver specialist; regular reviews and follow-up. The society also asked for a public education programme designed to break down the isolation and discrimination experienced by many.
Several hon. Members, such as the hon. Member for Hendon, South and my right hon. Friend the Member for Manchester, Wythenshawe (Mr. Morris), have taken an interest. Early-day motion 3 was signed by more than 250 hon. Members from both sides of the House. They all supported the case, which can be simply expressed as follows: 3,000 people, most of whom have families, have been infected with a destructive and potentially fatal disease. Because they suffer from haemophilia, they had no choice over the type of treatment offered by the national health service. Now, because they were given infected blood during that treatment, their lives and those of their families have been blighted.
No one blames the national health service or the Government, but we quietly plead for a recognition of the painful heartbreaking position in which those individuals and their families find themselves, and for an offer of help and hope. If the Government will not do that, no one else can. I know that every penny in the NHS is important and much fought over, but in terms of overall Government expenditure, the sum involved is small. None the less, it would be a significant sum for the affected families. It would show compassion and bring help, and it is desperately needed.
§ Mr. John Marshall (Hendon, South)I congratulate the hon. Member for Leeds, East (Mr. Mudie) on his success in securing the debate, and on his speech, with which, perhaps unusually in this place, I agreed 100 per 957 cent. I also thank the hon. Gentleman for his courtesy in inviting me to take part in the debate, and I apologise on behalf of my hon. Friend the Member for Wealden (Sir G. Johnson Smith), who cannot be here because he has other parliamentary duties. My hon. Friend has authorised me to say that he would have liked to be here, and I am sure that he too would have agreed with everything that the hon. Member for Leeds, East said.
I also pay tribute to the work of the Haemophilia Society, whose chairman, the Rev. Alan Tanner, is a constituent of mine. The society has done magnificent work for its members.
Like the hon. Member for Leeds, East, I draw the parallel between the haemophiliacs who suffer from human immunodeficiency virus and those who suffer from hepatitis C. The cause of their illness is precisely the same. Both groups received infected blood products through the national health service. Both were given what was hoped to be life-enhancing treatment, which instead caused a life-threatening illness.
For both groups the consequences, too, will be the same. About 600 to 700 people will suffer a painful and premature death. Of course I accept that not all those infected with hepatitis C will suffer in that way. Indeed, 20 to 25 per cent. of them will be completely cured as a result of treatment with alpha interferon. But others, who neither die an early death nor enjoy a complete recovery, will suffer a life of pain and worry for many years to come.
I believe that when we consider those three categories of people we already have the key to a solution. The first principle is that no one should be denied treatment and the possibility of a full cure through interferon alpha. The other day, some of us met representatives of Schering, the company that produces that drug, and they expressed concern that in some parts of the country people who could benefit from treatment with interferon alpha were being denied it. I hope that the Minister will be able to give a lead on that matter, especially as, when my hon. Friend the Member for Bolton, West (Mr. Sackville), who is now the Under-Secretary of State for the Home Department, was a Health Minister, he spoke to us on that matter.
Haemophiliacs who develop cirrhosis of the liver should be treated absolutely on a par with those who develop HIV. For both groups the prognosis is the same. All those people face the prospect of an early death, they are all suffering physically, and they and their relatives are suffering mentally and emotionally.
Indeed, if the onset of cirrhosis of the liver were to be the trigger for the main payment, the Minister could tell the Treasury that the scheme would not cost too much money this year. The cost would be spread over four or five years, and would have relatively little effect on total Government expenditure while doing an immense amount of good for the individuals concerned. Those who do not suffer from cirrhosis of the liver could be given a more modest payment.
Last week I invited the Minister to read the Haemophilia Society's report, and in it he will have seen cited the case mentioned by the hon. Member for Leeds, East—the family with three brothers, all of whom died, two from HIV and one from hepatitis C. Those who died from HIV had been compensated, but the third had not. How can we say to the mother of those three sons that 958 two were worthy of receiving Government money but the third was not? That does not stand up on the ground of logic, nor on the ground of compassion and human kindness.
When we debated the subject before, the then Minister talked in global sums and mentioned a figure of £6 billion, representing the cost of a total no-fault compensation scheme. That is not what we are asking for. We ask simply that a relatively discrete small group of people should receive some assistance as a mark of the financial hardship and of the physical and emotional pain that they are suffering.
Of course someone in the Treasury, or even someone in the Department of Health will say that that would create a precedent. However, the argument about precedent is the argument of administrative convenience; it is not the argument of compassion or of Christmas—you and I, Mr. Deputy Speaker, have just come from the Christmas carol service. The precedent was created when the Macfarlane trust was set up and the Government rightly decided to make ex gratia payments to haemophiliacs infected with HIV, and then to non-haemophiliacs infected with that virus. The Prime Minister took a major part in both those decisions, so I hope that the report of our debate will be sent to him so that he can act upon it.
§ The Parliamentary Under-Secretary of State for Health (Mr. John Horam)I congratulate the hon. Member for Leeds, East (Mr. Mudie) on his success in the ballot and on securing the debate. He put his points in his typically warm-hearted and down-to-earth way. I am delighted to see that he is well supported today, not only by Opposition Members but by Conservative Members, too.
I know that many hon. Members are concerned about the situation of haemophiliacs who have also had the misfortune to contract hepatitis C, which adds to the difficulties that they already have to face. The problem has been raised several times in the House. Last week, I answered a question on the subject from my hon. Friend the Member for Hendon, South (Mr. Marshall), to which the hon. Member for Leeds, East added a supplementary question. My hon. Friend also initiated an Adjournment debate at the end of the previous Session. I am also aware of early-day motion 3, which has a large number of signatures.
Let me say that I have great sympathy—and will always have great sympathy—for patients who have become infected with hepatitis C through blood transfusions or blood products. The Haemophilia Society originally launched its campaign for help for people in this situation in the spring. The hon. Member for Leeds, East will be aware that the Haemophilia Society has recently issued an interim report—I stress that it is an interim report—on its hepatitis C impact study.
I have just come to the Department of Health, and there is a great deal to read. I would like to read the Haemophilia Society's report thoroughly, but I have not yet had the opportunity to do so. I shall make that a very high priority, but I want to read the report and not merely a brief. I am aware that the report graphically describes the problems experienced by some sufferers who find that they now have to contend with the effects of hepatitis C 959 infection on top of the effects of haemophilia. The hon. Member for Leeds, East graphically and eloquently explained those severe problems in his speech.
The great benefits to patients of medical procedures rarely come without some risk, and I would like to put the matter into that context. It is important to remember that it is not always possible at the time treatment is given to fully appreciate the risk or to avoid suspected or known risks. In the case of each individual patient, a balance must be struck between the benefit to be gained versus any possible risk. The patients we are now discussing received the best treatment available in the light of medical knowledge at the time. I do not think that either the hon. Gentleman or my hon. Friend will dispute that.
The factor 8 concentrate—the cause of the infection—has brought great benefits to patients with haemophilia. Previously, only about 5 per cent. of patients with severe haemophilia reached the age of 40, whereas by 1980—as a result of factor 8 concentrate and drugs—the life expectancy was very close to that of normal males. There was also less need for the periods of hospitalisation, and boys had a better chance of achieving a reasonable education. Additionally, the convenience of patients being able to keep concentrate in a domestic fridge and treat themselves at the first sign of a bleed meant a considerable reduction in long-term disability. All those benefits have come about as a result of the blood products which, simultaneously, have been the cause of the infection.
Most haemophilia patients infected with hepatitis C were so infected before the blood products were treated to destroy viruses in 1985, and well before tests for hepatitis C became available. Before then, the only way to safeguard blood was to limit those from whom blood was taken by a system of self-deferral. This excluded, amongst others, those known to be suffering from hepatitis, or any other liver disease, and drug misusers.
The basic facts are quite straightforward and are not in dispute. The figure of just over 3,000 for those infected, which was quoted in the recent Haemophilia Society report and again today by the hon. Gentleman, is substantially in line with the Department's own estimates. A figure of a total of 50 deaths from hepatitis C in patients with haemophilia has been suggested, and has been cited in the early-day motion to which I have referred.
While every death is a tragedy for the individual concerned and their family and friends, it is important to keep a sense of proportion. I understand from the United Kingdom Haemophilia Directors that, of 126 haemophilia patients known to have died in 1993, 12 showed the cause of death as liver disease, of which hepatitis C may have been the cause. That is less than 10 per cent. That figure of 12 for 1993 contributes to the figure of 50 which we are talking about as the number who have died so far in this way. Eight of those 12 were also HIV-positive.
I do not minimise the impact of such tragic losses on individual families, but it is vital that we do not lose sight of the fact that, fortunately, many of those infected will be able to continue to lead a reasonable life. We owe it to those individuals infected to ensure that the public perception of this illness is not distorted. If people are given the impression that there is little to choose between hepatitis C and HIV, we risk the very stigmatism which was such a sad aspect of the early days of HIV awareness. 960 It has been argued that the fact that ex gratia payments were made to those who contracted HIV through blood or blood products means that payments should also be made in the present case. As both the hon. Gentleman and my hon. Friend will be aware, the Government have not accepted that proposal so far. We believe that different prognoses have been made for those with hepatitis C and those with HIV.
Many people infected with hepatitis C may live for a long period without any symptoms appearing, and my hon. Friend has conceded that. Fifty per cent. of sufferers may progress to chronic hepatitis with varying degrees of good or ill health. Perhaps 20 per cent. of infected patients will develop cirrhosis—a progressive destruction of the liver—that may take 20 to 30 years to be fully apparent. The majority of those years will be trouble-free in terms of ill health and, as I have mentioned, only a small proportion will die of liver disease.
The Haemophilia Society's report of its hepatitis C impact study makes a valuable contribution to our understanding of the effect of hepatitis C in this situation.
§ Mr. John MarshallDoes my hon. Friend agree that, if a relatively small proportion of sufferers will develop cirrhosis of the liver and die prematurely, the cost of helping them will be correspondingly small?
§ Mr. HoramYes. That is a valuable point, which my hon. Friend makes for the first time. The Haemophilia Society—understandably, as it has not completed its study—has not made full and costed proposals. We have never received such a suggestion to study, and I would be interested to hear details of the relatively modest and restricted proposal which my hon. Friend has made during the debate. We understand that the final report of Haemophilia Society will be published in 1996.
Infection with the virus will not necessarily lead to hepatitis, but if it should, it can he treated with the drug alpha interferon. Alpha interferon is not a universal panacea for hepatitis patients. It can have unpleasant side effects, and it is still not clear whether a permanent cure is possible. However, it has been shown to have real benefits for a proportion of sufferers. We have said all along that those people who could benefit from it should be able to receive alpha interferon.
My hon. Friend alleged that patients whose consultants wished to prescribe alpha interferon had been refused treatment due to a lack of resources. My predecessor said during the Adjournment debate on I I July that he would investigate the issue of medication supplies. Officials are continuing to make inquiries and have done so since that date. We are very serious about this. If my hon. Friend or any other hon. Member has any examples of cases in which alpha interferon has not been made available because of the cost, I will be delighted to hear from them. I shall certainly ask my officials to follow that up, as it would be very serious if that were happening. So far, there is little evidence of significant difficulties, and we have not been able to track down any particular examples. Hon. Members must let the Government know if any such examples come to their attention.
My Department is supporting an initiative by the Haemophilia Society to undertake a study of the best way to support its members who are infected with hepatitis C, and has made available substantial funds in 1995–1996 with a commitment to further funding in 1996–1997 and 961 1997–1998 for this purpose. My Department is also looking at what appropriate research may be undertaken to increase knowledge of hepatitis C, its natural history and its optimal treatment.
One example of that is that the standing group on health technology has identified the evaluation of the use of alpha interferon in the treatment of hepatitis C as a top priority in the NHS. Such developments are important to increase the evidence base upon which decisions can be made on the best treatment for each individual patient.
It is the Government's view that the most effective use of resources is to seek to improve the understanding, management and treatment of the condition. This is the best way to minimise the impact of the disease—which the hon. Gentleman described so graphically—on individual patients and their families. The Haemophilia Society's recent report gives examples of that.
All that I have heard in today's debate suggests that I should read the Haemophilia Society's report extremely closely, and I promise the House that I shall look at the matter afresh in the light of what is said in the report. We have also heard from my hon. Friend a sensible suggestion for a more modest and restricted compensation scheme than has been hitherto mentioned. For those reasons, I shall leave the matter at this stage, although I give my full sympathy to those who have the disease.