The final report of the U.K.’s infected blood inquiry will be published Monday, nearly six years after it began looking into how tens of thousands of people contracted HIV or hepatitis from transfusions of tainted blood and blood products in the 1970s and 1980s.
The scandal is widely seen as the deadliest to afflict Britain’s state-run National Health Service since its inception in 1948, with around 3,000 people believed to have died as a result of being infected with HIV and hepatitis, an inflammation of the liver.
The report is expected to criticize pharmaceutical firms and medical practitioners, civil servants and politicians, although many have already died given the passage of time. It’s also set to pave the way to a huge compensation bill that the British government will be under pressure to rapidly pay out.
Had it not been for the tireless campaigners, many of whom saw loved ones die decades too soon, the scale of the scandal may have remained hidden forever.
“This whole scandal has blanketed my entire life,” said Jason Evans, who was four when his father died at the age of 31 in 1993 after contracting HIV and hepatitis from an infected blood plasma product.
“My dad knew he was dying and he took many home videos, which I’ve got and replayed over and over again growing up because that’s really all I had,” he added.
Evans was instrumental in the decision by then-Prime Minister Theresa May to establish the inquiry in 2017. He said he just “couldn’t let it go.” His hope is that on Monday, he and countless others, can.
Here is a look at what the scandal was about and what the report’s impact may be.
What is the infected blood scandal?
In the 1970s and 1980s, thousands of people who needed blood transfusions, for example after childbirth or surgery, became exposed to blood tainted with hepatitis, including an as yet unknown kind that was later termed Hepatitis C, and HIV.
Those with haemophilia, a condition affecting the blood’s ability to clot, became exposed to what was sold as a revolutionary new treatment derived from blood plasma.
In the U.K., the NHS, which treats the majority of people, started using the new treatment in the early 1970s. It was called Factor VIII. It was more convenient when compared with an alternative treatment and was dubbed a wonder drug.
Demand soon outstripped domestic sources of supply, so health officials began importing Factor VIII from the U.S., where a high proportion of plasma donations came from prisoners and drug users who were paid to donate blood. That dramatically raised the risk of the plasma being contaminated.
Factor VIII was made by mixing plasma from thousands of donations. In this pooling, one infected donor would compromise the whole batch.
The inquiry heard estimates that more than 30,000 people were infected from compromised blood or blood products via transfusions or Factor VIII.
Missed chances
By the mid 1970s, there was evidence haemophiliacs being treated with Factor VIII were more prone to hepatitis. The World Health Organization, which had warned in 1953 of the hepatitis risks associated with the mass pooling of plasma products, urged countries not to import plasma.
AIDS, the biggest public health crisis since World War II, turned up in the early 1980s. Originally thought to be isolated to the gay community, it soon started appearing among haemophiliacs and those who had received blood transfusions.
Though the cause of AIDS — HIV — was not identified until 1983, warnings had been relayed to the U.K. government the year before that the causative agent could be transmitted by blood products. The government argued there was no conclusive proof. Patients were not informed of the risk and persisted with a treatment that put them in mortal danger.
Mistakes
The inquiry is expected to conclude that lessons from as early as the 1940s had been ignored.
Campaigners argue that since the 1940s it had been clear that heat killed hepatitis in another plasma product, albumin. They say authorities could have made Factor VIII safe before it was sold.
Evidence given to the inquiry suggested that authorities’ main objection was financial. Non-heated Factor VIII was prescribed by the NHS until late 1985.
Campaigners hope the inquiry’s core finding is that Factor VIII concentrates should never have been licensed for use unless heated.
Why now?
In the late 1980s, victims and their families called for compensation on the grounds of medical negligence. Though the government set up a charity to make one-off support payments to those infected with HIV in the early 1990s, it did not admit liability or responsibility and victims were pressured to sign a waiver undertaking not to sue the Department of Health to get the money.
Crucially, the waiver also prevented victims from suing for hepatitis, even though at that stage they only knew about their HIV infection. Years after signing, victims were told they had also been infected with hepatitis, mainly Hepatitis C.
There was no further group litigation until Evans, whose mother “crumbled” after his father’s death and who was called “AIDS boy” at school, brought a case claiming misfeasance in public office against the Department of Health.
Combined with political and media pressure, May announced the independent inquiry. It was, she said, “an appalling tragedy which should simply never have happened.”
Compensation
The government has accepted the case for compensation, with most estimates putting the final bill in the region of $12.7 billion. In October 2022, authorities made interim payments of 100,000 pounds to each survivor and bereaved partners.
The government is expected to announce different payments for different infections and address how and when bereaved families can apply for interim payments on behalf of the estates of people who have died.
