In the 1970s and 1980s, a large proportion of blood products supplied to patients by the NHS was contaminated with HIV or hepatitis C. Around 4,670 patients with haemophilia were infected; over 2,000 have since died from the effects of these viruses. A small number of people with other types of bleeding disorders were also infected.
The risk of blood being contaminated by viruses, particularly blood sourced in the USA, became known in the 1970s, although the existence of HIV and the lethality of hepatitis C weren’t established until the 1980s. In response to the known risk, in 1975 the Government committed to the UK becoming self-sufficient in the main blood product used to treat haemophilia (factor VIII) within two to three years.
In reality, this promise was never kept. Heat treatment of blood products to destroy viruses finally became available in the early 1980s, but wasn’t fully implemented until 1986. Today things are different, as almost all factor VIII and most factor IX used in the NHS is made through a ‘recombinant DNA’ process that doesn’t involve donated human blood.
At the time, the NHS didn’t clearly communicate the known risks to patients. Nor did it change practices to avoid using blood products for patients only needing occasional treatment who could have been treated with safer alternatives.
Contaminated blood has had – and continues to have – a devastating impact on the lives of thousands of people with haemophilia and on their families. Those infected live with the health effects of viruses, with more deaths each year. Many people’s lives have been severely affected, through for example, loss of career and subsequent reduction in household incomes, and long-term impacts on relationships and mental health.
Successive UK governments have refused to hold a public inquiry into these events. An independent inquiry under Lord Archer, greatly supported by The Haemophilia Society in gathering and presenting evidence, reported in 2009. It made strong recommendations to government, some of which have been implemented. In 2008 the Scottish Government set up a public inquiry under Lord Penrose.
Currently, the government provides partial support to some individuals and families through various charitable trusts funded by the Department of Health. For example, the Macfarlane Trust gives a regular payment to those with HIV while the Skipton Fund gives some support to those diagnosed with hepatitis C who have needed treatment.
Living with the legacy of treatment
On the following pages you can read how NHS contaminated blood treatment affected our community, you will find information about current support available, our work in this area and stories from members living with the legacy of treatment from the 1970s and 1980s, a period when a large proportion of blood products supplied to patients by the NHS was contaminated with HIV or hepatitis C, as well as information on treatment developments for people Hepatitis C and HIV. We are developing this information so this page will be updated as we gather information.
Contaminated blood had – and continues to have – a devastating impact on the lives of thousands of people with haemophilia, and on their families. Many have died, and those infected live with the long-term health effects of the viruses and their treatments.
When reading these stories, do remember how much care and treatment has changed in recent years. To find out more about any of the issues raised here contact us.
If you’d be happy to tell your story (we’ll keep your identity confidential if you wish), please contact us.