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12.26 pm
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:
Another sufferer, aged 55, said:
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
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.
"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."
"I have had 22 operations over the last two and a half years. I feel more tired as the months go on and I fear my liver will eventually fail. In the long term, the prognosis is bad."
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