North-East European experts explain the legal, social and medical implications of a scandal that resulted in 30,000 people becoming infected and 3,000 dying after being given contaminated blood.
LONDON — Perry Evans was a sports-loving young man who relished the odd daring feat of skydiving.
But in 1985, aged 27, he was told that, following standard treatment for hemophilia – a condition that protects against blood clots diagnosed when he was still a baby – he had tested positive for the human immunodeficiency virus (HIV) and may have just two years old.
Five years later, the health news worsened – he was told he also had hepatitis C.
Evans was one of more than 30,000 victims of what is known as the tainted blood scandal when contaminated blood, most of it imported from the US, was given to people in Britain in the 1970s and 80s. Nearly 3,000 people are believed to have died since then as a result of contaminated treatments and contaminated blood transfusions.
British Prime Minister Rishi Sunak, after the publication of a damning report by the independent five-year Infected Blood Inquiry, said he was “truly sorry” for the “decades of moral failure” suffered by the victims.
Chairman Brian Langstaff, a former senior appeals judge, said victims had been failed “not once but repeatedly” by doctors, the NHS, the government and others responsible for their safety.
Evans did not hear that condemnation – he had died five weeks earlier, aged 62, having defied the odds of his illnesses for decades.
Lisa Collingwood, an associate professor of law at Northeastern University in London, said the legislative basis for the inquiry should speed up justice, including compensation payments, for victims like Evans and their families.
The UK government has made interim payments of £100,000 ($127,000) each to around 4,000 survivors and bereaved partners, with another £210,000 ($267,000) to follow this summer before a fuller compensation plan is drawn up.
“This result will make justice go faster,” Collingwood said. “In his statement, Rishi Sunak said there would be compensation 'by any means'. The implication there is that there will be quick payouts, but unfortunately, the point is, what can money compensate for if someone's loved one has passed? It's devastating.”
One of the victims reported that they felt the delay and lack of accountability and action on this made them feel like their lives were expendable.
Sara Raimondi, associate professor of politics and international relations at Northeastern, London
The statutory basis for the investigation at least helps victims and their families from an arduous legal battle for compensation, the lawyer pointed out.
“If the outcome of the investigation was not what it was,” Collingwood said, “the families, the loved ones would have to go down the inexorable political route. That means a private lawsuit, and that can take years.
“At one point, it seemed like some people would have to go the route of doing this civilly, privately. Now this research has come along, you can get compensation as long as you can prove you were affected — it makes it a lot simpler, and rightly so.'
Hemophiliacs were particularly affected by the contaminated blood scandal. In the 1970s, many of them underwent a treatment that used donated human blood plasma to replenish the depleted Factor VIII and Factor IX clotting factors.
The NHS at the time was struggling to meet the demand for blood clotting treatment and so began to import it from abroad, including from the US, where high-risk donors such as prisoners and drug addicts were paid to give blood.
Jean McGuireprofessor of public health practice and health sciences at Northeastern University, said paying for blood donations was a “financial strategy for many people who have marginal lives” in the US
Factor VIII was created by pooling plasma from tens of thousands of donors. The thing was, even if just one donor had a disease like HIV, it could contaminate an entire bag of blood when pooled.
“The pool of blood that included everything from prisoners to people on the streets facilitated the distribution of diseases,” said McGuire, who previously ran the major US lobbying group the AIDS Action Council in the late 1980s. “However, even if you don't draw the blood, you would have that risk if you didn't have the ability to control everything.”
The problem of contaminated blood donations in general began to disappear as knowledge increased about diseases such as HIV and hepatitis B and C, allowing for the development of tests, he explained.
The industry has since been regulated to ensure that testing is carried out at multiple stages of the blood handling chain, including at the processing and treatment level, as well as at the time of donation.
But while improvements have been made, giving contaminated blood can have long-term detrimental effects on public trust, said McGuire, who previously served as assistant commissioner for public health in Massachusetts for five years.
“One of the remarkable things, frankly, is how quickly we did a test and how quickly we cleaned up after the blood was given,” he said. “But then there was a long, lingering tail of concern where people felt like, 'How can I trust this blood supply?' or “How do I trust the government?”
Sarah Raimondiassociate professor of politics and international relations at Northeastern in London, said scandals like these raise broader questions about the competence of those in public bodies and leadership positions.
It took until late 1985 in the UK to heat treat blood products to eliminate HIV, despite the risks being known three years earlier. Domestic blood donations were not routinely screened for hepatitis C until 1991, 18 months after the virus was first identified.
In his conclusion to the inquiry, Langstaff said the scandal was “not an accident”. The president said the truth about what had happened was often hidden from victims and there was a lack of accountability, with evidence of “deception fraud”, including the destruction of documents.
And while the scandal helped spark a collapse in public confidence, Raimondi said the treatment of victims, including cover-ups and prolonged waits for justice, played a role in them losing their sense of worth.
Campaigners were disappointed this week when they were forced to seek clarification that Mr Sunak's decision to call a snap general election for Wednesday July 4, which comes just two days after his full apology, would not further delay compensation.
In his data for the research before he died, Evans spoke of his enjoyment of cricket before his HIV diagnosis and said he felt “fit like a fiddle”.
The contaminated blood supply destroyed him and interfered with almost every aspect of his life, he said, stating that doctors tried to warn his wife against marrying him in the first place, while medically he suffered a lifetime of chest infections, pneumonia and “horrific” side effects from experimental drugs.
Evans never heard justice served in his life, while others had to fight tooth and nail to get the investigation assigned.
“One of the victims said they felt the delay and lack of accountability and action on this made them feel like their lives were expendable,” Raimondi said. “I think it's very important how citizens can stop feeling that sense of trust.
“These very complicated cases like the one we've seen with the tainted blood scandal can damage people's ability to feel like honorable citizens, especially if they rely on public bodies and governments to fulfill their dreams, hopes and opportunities. in life”.
