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The families of children as young as three who were used to test whether blood treatments were contaminated with diseases were not informed about the deadly viruses they contracted, documents reveal.
Data collected by the Infected Blood Inquiry found that one toddler with haemophilia was trialled to test whether a form of sterilisation, dubbed heat-treatment, could be applied to blood-clotting drugs to reduce the risk of infecting patients with hepatitis.
Following the trial which took place in 1985, that boy Luke O’Shea-Phillips told the Inquiry: “The heat treated trial was not discussed with me or my mother.”
He had his blood tested regularly and in 1993 tested positive for hepatitis C, according to his medical records.
The families of children as young as three who were used to test whether blood treatments were contaminated with diseases were not informed about the deadly viruses they contracted
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However, his family were not told about his diagnosis until 1997.
A note from one doctor stated: “Have not discussed with patient or family,” according to the BBC.
Blood-based drugs were imported into Britain in the 1970s and 1980s with many being shipped in from the US.
Health chiefs in the UK were aware that these drugs had a higher risk of carrying viruses such as hepatitis, but policies remained in place.
It was revealed in the early 1980s that a number of the drugs also contaminated with HIV.
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More than 1,300 people were infected with HIV through contaminated haemophilia treatments and blood transfusions between 1970 and 1991.
In the same time period, around 30,000 people were infected with hepatitis C.
According to O’Shea-Phillips’ medical records, the toddler was described as a “virgin haemophiliac” – referring to the fact he had not received any treatment for his condition.
The boy’s doctor, Dr Samuel Machin told the inquiry in 2019 that he thought O’Shea-Phillips’s family would have been told about the trial.
He said: “This would have been discussed with his mother, although I acknowledge that standard of consent in the 1980s was quite different to what it is now.”
More than 1,300 people were infected with HIV through contaminated haemophilia treatments and blood transfusions between 1970 and 1991
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His mother, Shelagh O’Shea told the inquiry that she “would never ever have allowed my child to be part of a trial”.
A total of 119 boys attended Lord Mayor Treloar College in the 1970s and 80s – the only school in the UK with an NHS haemophilia treatment centre on site.
Data shows that at least 89 were infected with HIV, hepatitis C or both through their treatment and just 28 were still alive in 2021.
O’Shea-Phillips told the BBC: “I was a guinea pig in clinical trials that could have killed me. There is no other way to explain it: my treatment was changed so I could be enrolled in clinical trials.
“This change in medication gave me a fatal disease, hepatitis C, yet my mother was never even told.”
After receiving treatment, he is now clear of the virus.
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