The Story So Far

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  • In the 1970s and 1980s the Department of Health bought blood and blood products from the US where intravenous drug users, prostitutes and prison inmates were paid to donate blood known to carry a high risk of infection.
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The nineties

Department of Health caused Hepatitis C in 98% of the haemophilia community

By 1989 the Hepatitis C virus had been isolated and although a test was available, most people at risk of infection through contaminated blood and blood products were not called for testing until at least 1995. Some were not called at all, but heard of the disaster through the grapevine and requested testing themselves. Patients were even tested for HCV without consent and without disclosure of a positive result for many months or years. Some even found out by chance. Information on HCV was scant and the seriousness of the infection was played down when victims were informed of their positive status. Few people were offered any kind of counselling. Many were unaware that the Department of Health could have prevented this from happening. They thought theyíd been the victims of a tragic accident. Little did they know that they were the victims of successive governments with total disregard for the value of human life. It eventually emerged that over 98% of those treated with human blood products were infected with HCV.

Evidence that HCV is far more than liver disease came in thick and fast

Research papers on extra-hepatic manifestations (the effect of HCV, other than liver damage) were being published thick and fast throughout the 90s, but most victims remained unaware and uninformed that the multitude of health problems they suffered were attributable to the virus. Many became too sick to work full-time, if at all, and had to rely on state benefits. Some were incapacitated because of severe liver damage, more and more of them needing liver transplants. Some were incapacitated by extra-hepatic manifestations such as chronic fatigue, arthritis, severe depression. None were given any financial assistance. Successive governments refused to accept responsibility yet refused to prove their claims of innocence by implementing a public inquiry, despite pleas from the victims to do so.

Still no financial assistance for HCV victims

A great deal of wrangling went on between the haemophilia community and the Government in the quest for compensation. In March 1993 the Eileen Trust was set up to provide financial assistance for people without a bleeding disorder, infected with HIV by NHS treatment, in line with the Macfarlane Trust. HIV victims were receiving a very small amount of financial assistance, yet victims of HCV still received nothing.

The victims continued to die at a rate of one per month.

The full horror of the disaster continued to unfold. Hundreds had died from HIV and around a thousand from HCV. More and more evidence of numerous diseases that the haemophilia community had been exposed to emerged. Parvo virus and Variant Creutzfeldt-Jakob Disease (vCJD) were added to the list. The quality of life for anyone who had received blood products derived from pooled plasma declined even further because of the fear of what other diseases were lurking in their blood stream, in addition to HIV and/or one or more strains of hepatitis. And to think, all of this could have been avoided if the warnings of the 1960s and 70s had not been ignored.