Fifty years on, an inquiry report has shed some light on a medical tragedy in the U.K. Between the 1970s and 1990s, more than 30,000 people were infected with HIV, Hepatitis C and Hepatitis B after receiving contaminated blood and blood products imported from the U.S. — making it the “worst treatment disaster” in the history of Britain’s state-funded National Health Service (NHS). “The disaster was not an accident,” said Inquiry chair Sir Brian Langstaff while announcing the report. Those in authority — doctors, the blood services, and governments — committed the ultimate folly in healthcare and healing: they “did not put patient safety first”.
The six-year-long inquiry is a dissection and diagnosis. It uncovers a coverup that was “more subtle, more pervasive, and more chilling in its implications” than an orchestrated conspiracy. It was undertaken “to save face and to save expense”. The calamity was made more catastrophic by the “defensiveness of government...and its refusal over decades to hold a public inquiry.”
This catalogue of failures, for the first time in more than 50 years, validates the calamitous heartbreak and grief of survivors and families of those who died. “Affected individuals and families have been very stoic in their wait,” says Kate Khair, a nurse and Director of Research at Haemnet. “Many now feel that the report gives them vindication.”
“Why so many deaths and infections occurred have had not had answers before now.”Sir Brian Langstaff
The Infected Blood Inquiry
The public inquiry, the largest of its kind to be carried out in the U.K., was commissioned in 2017 to “examine the circumstances in which men, women, and children treated by National Health Services ... were given infected blood and infected blood products” since 1970. The affected included two groups: those with haemophilia (and similar blood disorders), and people who received blood transfusions during surgeries and childbirth. Between the decades in question, at least 3,000 people have died due to receiving infected blood. The Haemophilia Society estimates another 680 people have died since the inquiry began. An infected person still dies every four days in the U.K., per one estimate. Deaths and infections linked to contaminated blood were also recorded in Australia, Canada, China, France, Ireland, Italy, Japan, Portugal, and the U.S.
The blood scandal revealed failures at an “individual, collective and systemic level”, noted an interim report published earlier.
Haemophilia is a rare genetic condition where the blood does not clot properly. Up until the 1970s, treatment options included administering the frozen blood product cryoprecipitate. It carried a low risk of passing on an infection since it was formulated from a single blood donation, but cryo was hard to store and harder to administer to patients. Enter Factor VIII, a revolutionary ‘wonder treatment’ made using concentrating pooled plasma from tens of thousands of donors. It was deemed to be a medical breakthrough. The caveat: Factor VIII had a high risk of infection. Even one blood sample, if infected with HIV or Hepatitis C, could contaminate the entire batch. Demand rose within the U.K., prompting the NHS to import supplies from the U.S. American blood products were often sourced from high-risk donors including prisoners, and drug addicts.
Elaine DePrince in 1997 wrote Cry Bloody Murder, a memoir about the contaminated blood scandal in the U.S. and being infected with HIV. About Factor VIII, she wrote, “The monster arrived as a wolf in sheep’s clothing.”
The infections were not fully understood and identified at the time: the agent for Hepatitis C was identified in 1988, and the first case of AIDS in the U.K. was recorded in 1981. A lack of treatment and knowledge fed an appetite for stigma against these conditions. Some indisputable evidence emerged on the side. Research as early as the 1940s shows transfusions or the use of plasma could transmit “serum hepatitis,” which could be fatal or lead to long-term diseases such as liver failure and cancer. By the 1970s, researchers had identified the virus responsible for Hepatitis B and became aware of the risks. The ‘unexplained Hepatitis’, as Hepatitis C was understood then, was known to be responsible for “the majority of post-transfusion hepatitis cases and that just as Hepatitis B could have serious long-term consequences, so too might non-A non-B Hepatitis”. The World Health Organization warned in 1974 and 1975 against importing blood products from countries with high rates of hepatitis, such as the U.S. Spence Galbraith, of the Public Health Laboratory Service in 1983 sent a letter to the Department of Health, urging “that all blood products made from blood donated in the U.S. after 1978 should be withdrawn from use until the risk of AIDS transmission by these products has been clarified.”
By 1984, when HIV was identified as a cause, experts grew concerned that people receiving Factor VIII blood concentrate were at risk of HIV infection. Evidence was, however, discarded and authorities failed to switch to safer options, Sir Langstaff’s review found.
Dr. Mark Winter in his oral evidence said, “However many alarm bells a human being has, they should all have been ringing at this stage.”
Why was tainted blood used?
The inquiry revealed how contaminated blood plasma products imported from the U.S. were used to treat people with haemophilia. In January 1982, leading expert Arthur Bloom wrote an infamous letter to haemophiliac centres, suggesting “the most clearcut way” of testing the infectivity of the new treatments was on patients previously unexposed to large-pool concentrates – including children. Sir Langstaff vivisects the events at Treolar’s College in Hampshire, a specialist school for people with haemophilia. Children were used as “objects of research” and treated “unnecessarily with concentrates (especially commercial ones) rather than choosing safer treatments.” A BBC investigation found that of the 122 pupils who attended Treloar’s between 1974 and 1987, 75 died of HIV and hepatitis C infections. [The investigation also found Mr. Bloom was aware of the risks and had discarded internal NHS guidelines that discouraged testing Factor VIII treatment on children.]
The clinical trials continued despite evidence that people receiving Factor VIII blood concentrate were at risk of HIV infection; a majority of them later died of AIDS-related illness. “Hindsight, of course, tells us that that led to a lot of people being infected and a lot of people dying as a result. At the time our balance of risk-benefit was seriously misinformed,” Edward Tuddenham, a haemophilia specialist who treated patients in the early 1970s, told Sky News. The inquiry estimates that of the 4,000–6,000 people with bleeding disorders in the U.K., about 1,250 developed both HIV and Hepatitis C. Of them, 380 were children. Three-quarters of these individuals have died. Those who received blood transfusions during surgeries also went on to develop infections. The inquiry estimates that between 80 and 100 of them were infected with HIV, and about 27,000 with Hepatitis C.
Reports showed the death toll rose among people infected with Hepatitis B, Hepatitis C and HIV for two decades, and by the 1990s, almost 3,000 people had died. On multiple occasions, government officials decided not to suspend the importation of commercially produced blood products. They insisted, repeatedly, that people received the best available treatment and that blood donations were tested when technology became available. “Both claims were untrue,” the Inquiry found.
What did the report find?
The six-year-long inquiry reviewed evidence from the government, NHS, pharmaceutical companies, and national blood services. It also took into account over 4,000 oral and written statements from people and families affected; some 2,000 people were appointed as “core participants” who worked with the team to pose questions to an expert group. The 2,527-page report, divided into seven volumes, inspects the chronology of events, why they happened and why. The picture that emerged showed people were “failed not once, but repeatedly”. Patient safety was ignored; decision-making was “slow and protracted”; people’s autonomy and privacy were neglected; clinical freedom was abused; governments and NHS officials were defensive; the lack of transparency and accountability amplified the injustice “to the people whose lives had been destroyed by infection”.
There was a failure to achieve self-sufficiency in blood clot treatments in England and Wales; a failure to introduce surrogate screening for either HIV or Hepatitis C; delays in introducing screening for HIV and Hepatitis C despite mounting evidence. Doctors, haemophilia centres, pharma companies were guilty of “giving too many transfusions when they were not clinically needed, or when less would have sufficed, or overriding a patient’s wish not to be transfused.” Moreover, licenses for U.S. imports were given in 1973 and subsequent decades, despite evidence that found “commercially manufactured blood products...were less safe than either NHS concentrate or cryoprecipitate.” Financial and reputational considerations predominated, and “patient safety was not put first — as it should have been.” Consensus emerged that at a medical level, the opportunities to reduce risk were missed and new risks were created.
Moreover, there was a “profoundly unethical lack of respect for individual patient autonomy”, he found. Clinicians failed to tell people about the risks of infection, the availability of alternative treatments or that they were being tested for HIV or hepatitis C. There were delays in informing patients of infections, sometimes for years; when informed, practitioners failed to “explain these devastating diagnoses privately, in person and with sensitivity.”
The action and inaction of the government sealed the cover-up, he found. The plight of the people infected and affected was compounded by “inaccurate, misleading and defensive lines”; “deliberate destruction of documents’ failure to provide psychological support; refusal to provide compensation; among other lapses. The government also refused over decades to provide compensation and remained defensive “through its publication of a self-sufficiency chronology, its repeated use of indefensible lines to take and its refusal over decades to hold a public inquiry.”
The inquiry chronicles the fallout of a breach of trust and medical ethics from a patient perspective. Testimonies revealed how people have had a wide impact on their personal lives, the effect of infection with Hepatitis B, C, and HIV; bereavement and stigma of disease; and loss of trust in healthcare. Clive Smith, chair of the Haemophilia Society, told reporters the scandal “challenges the trust that we put in people to look after us, to do their best and to protect us”.
To Dr. Khair, the report confirms what affected individuals have claimed over decades. “Most of these findings were known already, even if not fully acknowledged. The Inquiry unlocks new questions: what was known by whom and when, and whether/why this was covered up at the time.“The NHS must now reflect on its role and be sure that current scrutiny and reporting systems would not allow anything like this to ever happen again,” Dr. Khair remarked.
What purpose does the Inquiry serve?
“When something goes wrong and mistakes are made, justice requires that there be redress,” and redress takes several forms, says Emma Cave, a professor of healthcare law at Durham University. One form is an explanation of what happened and why. The affected have campaigned for redressal and recognition of a “terrible injustice,” and to them, the inquiry offers an immediate degree of validation and vindication.
Other remedies, such as apology and compensation, have entered the conversation 50 years later. Prime Minister Rishi Sunak said on Monday that the government and public bodies had failed people in the “most harrowing and devastating way” and offered a full apology on behalf of this and previous governments. The government has announced another interim payment of £210,000 to the living infected and the estates of those who have died, in addition to full compensation to those impacted.
The apology and promise of compensation “are very significant after 40 years of campaigning and denial,” says Prof. Cave. In 2022, the government agreed to make an interim payment to some affected in response to an independent report recommending compensation irrespective of the inquiry’s findings. They paid initial payments of £100,000 to 4,000 of the infected and bereaved partners in 2022. In December 2023 the government said it would consider compensation schemes based on the findings of this report.
Questions remain over criminal prosecution — the Inquiry does not have the power to determine civil or criminal liability. In France, three ministers were charged with manslaughter. Two were later acquitted, and one official received a four-year prison sentence. Japan in 2000 found a health official guilty of professional negligence. Moreover, those who might have been found liable for their inaction in the Seventies and Eighties are now dead, Prof. Cave notes. However, the Inquiry has “established wrongdoing” and “whether this wrongdoing reaches the threshold for criminal prosecution remains to be seen”.
What next?
Mr. Langstaff has given the government a year to respond to its findings, noting that the inquiry is far from over. Its recommendations include immediate compensation, public memorials and for the learning to seep into medicine, government and civil services so that the tragedy is never repeated. Blood products should only be used when necessary, and should be regularly screened for known viruses. “We need to be sure that the products we use now are as safe as they can be,” Dr. Khair adds.
Chief among the Infected Blood Inquiry’s recommendations is to create an enabling environment where the “patient voice is heard”. Dr. Khair concurs. “We have to engage with and listen to patient opinions and concerns and act upon them,” she says. “We can, and should, learn from this — all care that we give needs to be assessed.”
