The Contaminated blood scandal

Described as one of the worst treatment disasters in NHS history, the Contaminated Blood Scandal, has seen the infection of thousands of patients across Scotland, the UK and around the globe with HIV, Hepatitis B, C and even variant CJD (mad cow disease) through the use of infected blood products over a twenty year period from the 1970’s through to the 1980’s and later - most of whom were Haemophiliacs. With vast evidence pointing towards medical cover ups, no government, health body or pharmaceutical company has yet taken any responsibility with families and survivors still awaiting official recognition and justice for the damage that was done

UK Government officials chose to ignore warnings over the safety of blood products or risks of disease transmission through the blood. This was while allowing imports of blood from commercial suppliers, who were well known to be collecting blood from paid, high risk donors such as prison inmates and needle injecting drug addicts

Despite these warnings however, officials in government repeatedly chose to publicly deny any such occurrences even existed. Ken Clarke, the then UK Health Minister, for example, stated in a parliamentary address in November 1983, "There is no conclusive evidence that AIDS is transmitted by blood products”. Lord Glenarthur, Parliamentary Under Secretary of State at the DHSS in 1984 also stated in a letter to a colleague, "It remains the case that there is no conclusive evidence of the transmission of AIDS through blood products, although the circumstantial evidence is strong" (Glenarthur, 1984) However, when giving evidence to the Penrose Inquiry, Dr Mark Winter said that at the time Ken Clarke made this statement "all haemophilia clinicians by this stage clearly believed that commercial blood products could and were transmitting AIDS” (Penrose Inquiry, 2021)

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 estimated that as many as 25,000 people in the UK may have been infected as a result of the contaminated blood scandal

We still await the findings from the ongoing Inquiry

Bleeding disorders

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 concentrates meant it was imported from the United States, which used blood from high-risk paid donors, many of whom were prison inmates and/or 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 in the US. 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

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.

The Infected Blood Inquiry and beyond

Prime Minister Theresa May announced that a statutory public inquiry would be held into the contaminated blood scandal in 2017. Since that announcement, more than 100 people infected and affected by the scandal have died. More will die before the inquiry reaches its conclusions. This is a tragedy which continues to take and devastate lives

The Haemophilia Society 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