Contaminated blood scandal: UK families fight for justice

Jason Evans was just four-years-old when his father, Jonathan, passed away in October 1993. Jonathan was born with haemophilia, a rare condition that severely reduces the ability of blood to clot, causing intense bleeding from even minor cuts. But it wasn't his condition that killed him.

As part of regular transfusions of blood plasma, designed to help his blood to clot, Jonathan received a pharmaceutical concoction called factor VIII at Oxford's Haemophilia Center. The infusion was a blood concentrate formed by mixing together the donations of thousands of blood donors.

That blood had been shipped to the UK from the U.S. because of a shortage of UK donors. U.S. donors were paid for their samples but, crucially, they weren't tested for HIV or hepatitis C. As he sat in his hospital bed and the blood seeped into his veins, Jonathan was infected with both diseases.

He wasn't the only victim. In fact, he wasn't the only victim in his own family. Jonathan had been adopted at birth and separated from his brother. They never met, but both suffered from haemophilia and suffered the same tragic fate, with his brother passing away in 1996.

It's estimated that in the 1970s and 1980s, between 2-5,000 people were infected with hepatitis C and 1,250 people were infected with HIV. Many unknowingly passed on their infections to strangers and loved ones, some of whom gave birth to children who were born with the diseases. 

It's since been christened the contaminated blood scandal, but decades later, thousands of families are still fighting for justice. Jason is leading the fight and is determined to force the UK government to compensate all victims, including their families and children.

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The fight for justice

Jason's memories of his father are distant, but he has permanent reminders in a folder of pictures on his laptop from his early childhood. In one, Jonathan holds Jason lovingly in front of a Christmas tree, while another shows them playing together at a mini golf course.

They're warming images of father and son bonding and embarking on a lifelong journey together. But that photo album and those memories ended in October 1993. There are no pictures of father and son at a primary school nativity or enjoying their first legal pint together.

Instead, Jonathan died knowing his son would grow up without a father, while Jason has been left to dwell on the memories they may have made. That sense of injustice has fuelled his fight for compensation for both himself and the other victims of the infected blood scandal.

In 2016, he founded the factor 8 organization, a non-profit advocacy group that is pushing for the government to agree to pay all victims compensation. He believes imprisonment of those involved in the scandal is now unlikely.

"A lot of the real bad guys in this story are dead and died a long time ago, in the early-90s," Evans told CGTN. "One example is Dr Arthur Bloom, who was one of the leading haemophilia decisions makers in the UK. Inquiries have shown that he was aware that some haemophilia patients were developing symptoms of AIDS.

"He himself had the first AIDS case in a haemophilia patient in the UK, but purposefully suppressed that information and the inquiries determine that pretty conclusively. He's now dead and so the financial route is probably the only realistic form of justice available."

The price of a life

In July 2017, former UK Prime Minister, Theresa May, announced the Infected Blood Inquiry. It was designed to examine why men, women and children in the UK were given infected blood and/or infected blood products; the impact on their families; how the authorities (including government) responded; the nature of any support provided following infection; questions of consent; and whether there was a cover-up.

A summary of the inquiry concluded that "wrongs were done at individual, collective and systemic levels...and the infections and their consequences merit compensation...so too do the wrongs done by the way in which authority responded to what happened."

In line with inquiry recommendations, the government paid £100,000 ($127,000) interim compensation (interim means that sum isn't fix and could still increase) to everyone currently registered on a UK Infected Blood Support Scheme. 

That included people infected with HIV and/or hepatitis C, as well as the bereaved partners of people who were infected. In April 2023, the Infected Blood Inquiry published its Second Interim Report on Compensation which sets out recommendations for full compensation and interim payments to groups including bereaved children and parents. 

Evans says the award of interim compensation to all affected parties is essential. "Only one third of the victims who died were in a relationship at the time of death," he explains. "To date, that means two thirds of bereaved families have received no compensation.

"If you look at the compensation systems for the Post Office and Windrush scandal, the compensation is payable to the estate of someone who has died, so that their relationship status at the time of their death isn't taken into account. 

"We also we know at least 380 children were infected with HIV and many of those have died and I've spoken to many parents who have lost one or multiple children to AIDS because haemophilia's hereditary. You often find families with multiple victims and they've received nothing."

The UK government still hasn't responded to the April recommendation, but may be forced to respond through an amendment to the Victim and Prisoners Bill, which is currently being considered in parliament. When the bill receives Royal Assent, the government will have three months to establish a compensation scheme, led by a High Court Judge.

Twin scandals

Evans and other bereaved families have been emboldened by the public outcry over the Post Office scandal, which saw over 700 sub-postmasters wrongly convicted of theft, false accounting and fraud when shortfalls at their branches were in fact caused by faulty Horizon accounting software.

In 2019, the High Court ruled that the Horizon system was faulty and in 2020 the government established a public inquiry. Courts began to quash convictions from 2020, but some victims are still fighting to have their convictions overturned and receive compensation.

"Some people in our community are frustrated that the Post Office scandal has been in the limelight for a week or so, because the infected blood scandal is so personal to them," says Jason. "They feel frustrated that we aren't getting the same kind of exposure.

"I understand that, but for me it's been really helpful. Just the word 'scandal' being in the media has generated a lot of media interest for us. Our website traffic has surged and it's been a big boost for us. Those victims deserve justice just as much as us."

Compensation won't bring Evans's father back, but it could give him and thousands of other people a sense of peace and justice, decades after this scandal robbed them of their loved ones and infected their futures.

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