'We were cheaper than chimps' - Infected blood victim calls for justice over childhood testing

With a month to go before the Infected Blood Inquiry reports back, Stephen Finney spoke to ITV reporter Rachel Hepworth.

She also spoke to Clive Smith from the Haemophilia Society, Professor Dame Lesley Fallowfield from the University of Sussex and former post mistress Jo Hamilton about their hopes for the inquiry.

"I refuse to be defined by haemophilia, or by infected blood," says Stephen Finney, at his home in Dorset, "but I can't pretend my life wouldn't have been completely different if it hadn't happened".

Stephen, now 53, has never married or had children, something he's deeply sad about.

"It just wasn't an option for me," he says. "I was a two years old when I was infected with Hepatitis B, quite possibly from my very first use of Factor VIII."

A young Stephen with his mum, who he inadvertently infected with Hepatitis B

He later passed the infection on to his mother, who herself needed extensive treatment. He doesn't know if the infection contributed to her ill health and premature death.

Then, in 1985, a bombshell.

"At 14 I found out I'd been infected with HIV and was told I could be dead within months," he says.

"It was terrifying. Since then, psychologically, I've been walking amongst the tombstones every day."

Stephen Finney - "The inquiry process means we're no longer treated like conspiracy theorists."

He may have defied the odds, but his life has been blighted by ill-health and dominated by campaigning for justice and accountability, not just for himself, but for the thousands directly impacted by what's been described as the worst treatment disaster in the history of the NHS.

Next month, on 20 May, a public inquiry, led by Sir Brian Langstaff, will report back following a five-year investigation.

It's been designed to address why the scandal happened, who knew what and when, whether further deaths could have been prevented, and how best to compensate people, not just for the infection, but the trauma that went with it.

Among the questions being asked are whether children were used as guinea pigs to test the infectivity of blood products, something Stephen is in no doubt about.

"They were doing the tests on us, because chimpanzees were expensive," he says.

"There's documentation that actually said that in the inquiry - chimps are too expensive to be tested on, so do it on the patients. And we were the perfect control group, a godsend for them."

Extract of a letter shown at the inquiry regarding the use of children in tests, because chimpanzees were in short supply Credit: Infected Blood Inquiry

He's also angry at the length of time it's taken to hold the inquiry.

"All of this should really have been done 20 or 30 years ago," he says.

"Sadly, so much time has elapsed for all of those people that could've and perhaps should've done jail time are long since gone."

Does the cynic in him believe that was intentional?

"Absolutely. For 30 years I've been campaigning and their attitude has been, well they're going to die anyway."

It's a view shared by many campaigners, who point out that victims are continuing to die at a rate of one every three days.

A haemophiliac, Stephen grew up in Buckinghamshire and was treated at the Oxford Haemotology Centre, one of the largest and most progressive centres in the country.

Like thousands of other patients he was given a clotting agent called Factor VIII, a revolutionary treatment that negated the need for lengthy blood transfusions.

But it was made from pooled plasma, obtained from high-risk donors such as prison in-mates and drug users in America, and it brought catastrophic results.

In all, 7,500 haemophiliacs were infected with HIV or Hepatitis in the 1970s and 80s.

Another three Treloars students have died since this picture was taken in 2022

More than a third died, including 75 boys at Treloars College in Alton.

But it wasn't only haemophiliacs - thousands more were infected during routine transfusions after childbirth or surgery.

Coinciding with AIDS in the 1980s, many victims had to endure horrific abuse.

"The stigma that existed at the time was crippling and terrifying," says Clive Smith, Chair of the Haemophilia Society."

"People lost jobs, children were banned from schools, some had abusive graffiti painted on their homes.

"There was a climate of fear, to such an extent that even now, many people giving evidence at the inquiry have done so anonymously."

The Government has already accepted the moral case for compensation - some victims and spouses have received interim payments, but a final compensation scheme including parents and children, has yet to be set up, the total cost likely to run into billions.

Stephen says nothing can bring back his lost years, but he hopes the inquiry will help ensure nothing like this can ever happen again, and look at the role of pharmaceutical companies, civil servants, ministers and senior doctors in the NHS.

And the inquiry process in itself, has it been useful?

"Yes, hugely" he says. "I've told Sir Brian that it's been the best therapy that money can't buy, because it's vindication.

"The inquiry process has basically meant that we're no longer considered as nutters anymore for sounding off about some sort of wild conspiracy theory.

"You know, this actually happened and it was avoidable.

"There were many points along the way at which individuals and organisations could and should have intervened but didn't."

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