What is the UK’s contaminated blood scandal, a deadly treatment disaster that claimed at least 3,000 lives?

The inquiry was launched six years ago in 2017, when Theresa May was Prime Minister. It was to look into how tens of thousands contracted the deadly diseases from transfusions of infected blood products in the 1970s and 1980s. Almost 3,000 people were estimated to have died of complications until 2019.

In October 2022, British authorities made interim payments of 100,000 pounds to each survivor and the bereaved kin. What exactly happened and how? We explain.

But first, what is Britain’s National Health Service (NHS)?

The NHS is an inclusive public health service under government administration, which was established by the National Health Service Act of 1946 and subsequent legislation in 1948. The entire population of the UK is covered, and health services are provided free of cost to the public, except for certain minimum charges.

The NHS constitutes four services — NHS in England, NHS Scotland, NHS Wales, and Health and Social Care in Northern Ireland. It is the world’s fifth largest employer and the largest non-military public organisation, and wields significant market power.

By and large, the NHS is considered to have been an effective and efficient health service, some of its recent post-Brexit problems notwithstanding.

Medical services under the NHS are administered in three separate groups: general practitioner and dental services, hospital and specialist services, and local health authority services.

So, what is the contaminated blood scandal?

During the 1970s and 1980s, thousands of people who had the blood-clotting disorder haemophilia, were given blood donated or sold by people who were infected with the HIV virus and hepatitis. Tainted blood was also given to people who needed blood transfusions after childbirth or surgery.

In the early 1970s, the NHS started using a new treatment for haemophilia called Factor VIII. This was a processed pharmaceutical product that was created by pooling plasma from many donors. Factor VIII was considered to be a “wonder drug” for patients with classical haemophilia and Von Willebrand Syndrome (which is a bleeding disorder in which the patient’s blood cannot clot fully), more efficient and convenient than earlier treatments.

The nature of Factor VIII was such that even one infected donor could compromise the entire batch of the protein. The product used by the NHS was imported from the United States, where a large volume of donated plasma at the time came from prisoners and users of intravenous drugs who were paid for their blood.

People impacted by the contaminated blood scandal gather in Westminster for a vigil to remember those that lost their lives, ahead of the release of the final report of the Infected Blood Inquiry on Monday, in London, Britain, May 19, 2024. (REUTERS/Hollie Adams)

The inquiry report has estimated that more than 30,000 people were infected with HIV, hepatitis C or, as in the case of 1,250 haemophiliacs, both. The Guardian has reported that most hep C infections were seen in transfusion recipients, and as many as 380 children were infected with HIV.

Nearly two-thirds of those who were infected with HIV later died of AIDS-related illnesses, and an unknown number transferred HIV to their partners, a report by The Independent said. The report said that 2,400-5,000 recipients of blood developed hepatitis C, with the exact figure not known yet, as symptoms can show up years later.

Was all of this a gigantic mistake committed inadvertently?

Several reports have stated that school children, some as young as 2 years old, were subjected to medical trials using infected blood products. Documents seen by BBC News have revealed that unsafe clinical testing involved children in the UK, despite families not consenting to take part.

The BBC report said that the majority of the children who enrolled are now dead. Survivors told the BBC and other media outlets that they were treated like “guinea pigs”.

The documents also showed that doctors in haemophilia centres used blood products, even though they were widely known as likely to be contaminated. As per the report, patients were “deliberately given Factor VIII, so they could be enrolled in clinical trials”.

There is evidence that experts called on fellow doctors “to identify patients suitable for clinical trials” and more specifically, “previously untreated patients”.

As per the BBC investigation, of the 122 pupils who attended Treloar’s College between 1974 and 1987, 75 have so far died of HIV and hepatitis C infections.

Another controversy of the time centred on medical trials that involved so-called “placebo” treatments — meaning that children who thought they had been given Factor VIII to prevent bleeds, had in fact been given a saline solution.

With the belief that they could lead a near-normal life after the transfusion, these children engaged in rough outdoor games, only to risk their lives further.

The investigation also revealed that the British government in 1973 knew about the trials at Treloar’s, and also covered some costs.

How did the government react after the scandal was widely known?

It was only after 1985 that all Factor VIII products were heat-treated to kill the HIV virus. However, UK blood donations were not routinely screened for hep C until 1991.

Evidence provided to the inquiry suggests that the British government chose to turn a blind eye to the situation, mainly due to financial considerations. According to a BBC report, official documents from the 1990s showed that cost concerns prevented the NHS from pursuing adequate testing or campaigns to raise awareness, despite many warnings in the mid-1970s that blood donations from the US carried risk of viral infection.

As early as 1953, the World Health Organisation (WHO), had warned of the hepatitis risks associated with the mass pooling of plasma products. It urged that dried plasma should be prepared from pools of between 10 to 20 donors to reduce the risk of contamination.

In 1974, the UN agency warned Britain not to import blood from countries with a high prevalence of hepatitis, such as the US.

Another warning of the risk of contracting HIV from blood products was issued in 1982. The following year, The Lancet and WHO said haemophiliacs should be told about the dangers of donated plasma.

What has happened from then until now?

In the late 1980s, victims and their families called for compensation on grounds of medical negligence, an AP report said.

According to the report, the government set up a charity to make one-off support payments to those infected with HIV in the early 1990s, but it did not admit liability — and victims were reportedly pressured to sign a waiver undertaking not to sue the UK Department of Health to get the money.

Meanwhile, campaigners kept up the pressure. The campaign, especially, by Jason Evans, whose father died at the age of 31 in 1993 after contracting HIV and hepatitis from an infected blood plasma product, was instrumental in the decision by then Prime Minister May to establish the Infected Blood Inquiry in 2017.

Evans brought a case claiming transgression in public office against the Department of Health.

In a statement to Parliament at the time, May described the scandal as “an appalling tragedy which should simply never have happened”.

In February 2018, it was announced that Sir Brian Langstaff, a former High Court judge, would chair the inquiry. The inquiry got underway on 2 July 2018, following the announcement of its terms of reference, which sets out what and who will be investigated.

Preliminary hearings took place in London in September 2018. The inquiry panel began hearing evidence in public from those infected and affected in April 2019 until December 2022, with final oral submissions taking place until the last day of the inquiry, on 3 February 2023.