The contaminated blood scandal
The contaminated blood scandal
In the 1970s and 1980s 4,689 people with haemophilia and other bleeding disorders were infected with HIV and hepatitis viruses through the use of contaminated clotting factors. Some of those unintentionally infected their partners, often because they were unaware of their own infection. Since then more than 3,000 people have died and of the 1,243 people infected with HIV less than 250 are still alive. We now know that 380 children with bleeding disorders were infected with HIV.
Many people who did not have a bleeding disorder were infected with hepatitis C as a result of blood transfusions during that period. A large number were unaware of their infection for many years before diagnosis. It is not known how many were infected.
Living with a bleeding disorder
People with bleeding disorders lack a protein that enables their blood to clot, most commonly factor VIII. This means even minor injuries can lead to bleeding that is difficult to treat.
Until the 1970s the treatment for these disorders required transfusions with plasma which had to be given in hospital.
This treatment was replaced with a revolutionary new product, factor concentrate, which could be administered at home with an injection. For the first time, people with bleeding disorders could be treated prior to a bleed (prophylactically) reducing the likelihood of a bleed and the resulting joint damage.
Factor concentrate: the deadly risks
Factor concentrate was produced by pooling human blood plasma from up to 40,000 donors and concentrating it to extract the required clotting factor. Just one contaminated sample could infect the entire batch.
Blood and blood products were known to transfer viruses such as hepatitis, so the use of pooled blood products increased the risk of infection significantly.
The danger of contamination rose further when a shortage of UK-produced factor concentrate meant it was imported from the United States, which used blood from high-risk paid donors, such as prisoners and drug addicts.
Ignoring the risks
These risks were ignored by leading clinicians and government who failed to take appropriate action to end their use and return to safer products. Pharmaceutical companies and leading clinicians did not share appropriate information about risks with patients and patient groups.
In 1975 the then Health Minster, Dr David Owen, announced that funds had been allocated to ensure the UK became ‘self-sufficient’ in blood products, but this never happened. From this time outbreaks of hepatitis began to be reported from haemophilia centres around the country.
In 1982 the first death of a man with haemophilia infected by AIDS was reported in the US and the first warning of the danger of contracting AIDS from contaminated blood products was published. This was followed in 1983 by other warnings in The Lancet and from the World Health Organisation which said that people with haemophilia should be warned of the dangers.
The Haemophilia Society
During this period The Haemophilia Society (THS) issued statements reassuring people with bleeding disorders that the new factor treatments were safe and to continue using them.
The advice we gave our members was based on guidance from Haemophilia Centre Directors (now known as the UKHCDO) and from the government. We accept that our actions and statements at the time, while well intentioned and based on expert advice, have subsequently been shown to be damaging to the community and false. For this, we have apologised unreservedly.
Living with haemophilia during the contaminated blood scandal
Due to widespread ignorance about the HIV virus and a lack of understanding of how it was transmitted, many people assumed anyone with haemophilia was infected with AIDS. This forced many people to hide their haemophilia for fear of stigma and discrimination. Those infected with HIV were often advised by their consultant not to tell anyone of their diagnosis. It was a time of fear and isolation for many people with haemophilia, who did not yet realise how many others were infected. Some families were subjected to appalling abuse, resulting in them being forced out of jobs or having to leave their homes. As a result, many people who were infected or affected by the scandal continue to keep it a secret.
Until 2022, no compensation had ever been paid to victims of the contaminated blood scandal in the UK. In 2022 Sir Brian Langstaff, Chair of the Infected Blood Inquiry, made an interim recommendation that interim compensation of £100,000 should be paid to everyone currently registered on a UK infected blood support scheme. This was accepted by the government and payment was made in October 2022. While this was welcome news, many groups of people seriously affected by the scandal were excluded from this payment, such as bereaved parents, siblings and children. The government provides ex-gratia support, which began in 1989 for people infected with HIV through contaminated blood products. In 2004 another fund to make payments to people infected with hepatitis C was launched by the government. In 2017 these schemes and trusts were replaced by infected blood support schemes in England, Wales, Northern Ireland and Scotland. A summary of financial support can be found here.
Progress towards safer treatment
By 1984, heat-treated blood products, in which the viruses had been deactivated, started to become available. This, combined with improvements in donor vetting, meant that by 1986 UK patients were receiving safer treatment, although some risks remained.
Late in the 1990s the use of synthetic (known as recombinant) clotting factors started to become widespread in the UK effectively eliminating the risks from viruses and other contaminants.
The Infected Blood Inquiry and beyond
In 2017 Prime Minister Theresa May announced that a statutory public inquiry would be held into the contaminated blood scandal. The inquiry officially opened in 2018 and hearings lasted from April 2019 to January 2023.
Since the inquiry was announced, we estimate that more than 500 people infected and affected by the scandal have died. More will die before the inquiry reaches its conclusions in autumn 2023. This is a tragedy which continues to take and devastate lives.
THS has been campaigning for a public inquiry since 1988. We welcome scrutiny of our role, as well as that of all other organisations involved. We hope this inquiry will finally deliver closure, justice and recognition of what has happened and the suffering it has caused.