Children being subjected to lethal medical experiments sounds like the plot of a dystopian horror film. Yet that is exactly what happened in the UK in the 1970s and 80s. New documents seen last week by the BBC reveal the extent to which children with haemophilia and other blood clotting disorders were enrolled in clinical trials, often without their parents’ consent. Most of them were infected with HIV or hepatitis C as a result of being treated with blood products that doctors knew could kill them. At one boarding school for boys with haemophilia used by the doctors conducting these trials, Treloar College in Hampshire, 75 out of the 122 pupils who attended between 1974 and 1987 have died as a result of their HIV or hepatitis C infections.
These children are just some of the victims of the infected blood scandal, the worst medical scandal in the history of the NHS. It is thought that around 30,000 people were infected with HIV and/or hepatitis C, a virus that can cause liver cancer, through the course of their NHS treatment in the 1970s and 80s. Some had blood disorders and were treated with clotting agents manufactured from pooled plasma from tens of thousands of donors, often bought from the US where the use of high-risk donors was known about and routine.
The independent inquiry on the contaminated blood scandal estimated that 1,250 people contracted both HIV and hepatitis C as a result of these agents, and between 2,400 and 5,000 people hepatitis C alone. Others contracted these viruses after receiving blood transfusions following surgery or childbirth; it is thought that up to 100 people were infected with HIV this way, and 27,000 people with hepatitis C. Around 2,900 people have died so far; but the terrible legacy of the scandal unfolds with every year that passes; it is estimated that one person is dying every four days. Of those infected with HIV, 380 were children, more than half of whom have so far died of Aids-related illnesses.
The numbers are sickening enough. But one gets a sense of the horrific trauma the state inflicted on people by reading the evidence those affected gave the inquiry. Colin and Janet Smith told what it was like to lose their son Colin aged seven after he tested positive for HIV aged two: “There’s no way a child should have to die the way he died.” Lauren Palmer’s father, a severe haemophiliac, was diagnosed with HIV when she was one; he had passed on the infection to her mother. Both her parents died within eight days of each other when she was just nine; she was then separated from the half brothers she had grown up with. One anonymous witness gave evidence that she had been infected with HIV while in the womb after her pregnant mother was infected via a blood transfusion. Her father and sisters were also infected. Her older sister died age five, then her younger sister died age three, her father died when she was eight, then she also lost her mother, leaving just her and her brother. Parents described the appalling and isolating social stigma they were subjected to after their children were diagnosed with HIV; some were forced out of their jobs and could not subsequently find work.
Some of the children who had been infected, like at Treleor College, were subjected to dangerous medical experiments by the doctors who should have had their best interests at heart. These children underwent extensive clinical trials without their parents’ consent, such as being repeatedly injected with three to four times the amount of blood clotting agent that would usually be administered, to see if it reduced the number of bleeds they experienced.
On top of all this, the victims – not just those who were infected, but the loved ones who cared for them, the parents who had to nurse their dying children, those who were orphaned – have for decades been gaslit by the state in their search for truth and justice. Minister after minister denied their pleas for a public inquiry; it was only in 2017 that the prime minister Theresa May announced there would be an inquiry into this “appalling tragedy that should never have happened”. The inquiry, chaired by Sir Brian Langstaff, will publish its final report next month. But cognisant that so many living victims are on “borrowed time” – that they are dying as a result of state failures – he published an interim report in April 2023 setting out how a compensation scheme should work so it could be instituted without delay. A year later, almost 100 further victims are estimated to have died. Yet no compensation has been paid save for an interim payout of £100,000 in October 2022 that was made only to living victims and the bereaved partners of those who died. Two-thirds of bereaved families – including parents who lost their children or people who were orphaned as young children – are yet to receive any compensation at all.
As in the Windrush and the post office scandals, the state has utterly failed to adequately recognise the egregious harm it has inflicted and continues to inflict. In the case of the infected blood, children and adults have endured painful, terrible – yet avoidable – deaths. It is disgraceful. Paying out a fair level of compensation to the living victims and the bereaved families with no further delay is the very least they deserve.
Do you have an opinion on the issues raised in this article? If you would like to submit a letter of up to 250 words to be considered for publication, email it to us at observer.letters@observer.co.uk
