23.05.2024

Blood of the innocents

Sir Brian Langstaff’s Infected Blood Inquiry reveals a disgraceful litany of deceit, delay, neglect and corporate greed, writes Ian Spencer

The publication on May 20 of the report of the Infected Blood Inquiry has been a long time coming. The inquiry was initiated by prime minister Theresa May in 2017, during which time hundreds have died without seeing justice done. Even then, it was only decided to launch a public inquiry in response to action on behalf of 500 haemophiliacs.

A cynic might suggest that public inquiries in the UK have become a way of ensuring compensation payments are delayed until enough people have died to make the whole charade feasible. It certainly ensures that those who bear full responsibility for the cover-up are either dead or safely retired, often with comfortable pensions. And, of course, it does not address the real culprits at all, such as the US company, Bayer and Baxter International, which made vast profits by extracting contaminated blood from the poorest in society, who had little choice but to sell it.¹ The period in which people were infected with hepatitis and HIV, particularly the late 1970s and 1980s, was also a time in which these diseases were treated by many in power as a moral judgement or, at best, with blithe indifference to what happened to thousands of people.

Rishi Sunak has made a “wholehearted and unequivocal apology” for the delay in establishing the inquiry and paying compensation, among the catalogue of other failings. However, he did not apologise for his role in using a three-line-whip which tried to block an amendment to the Victims and Prisoners Bill that established a compensation scheme in December 2023.²

The unconscionable delay is in stark contrast with other countries.France, for example, made 15,542 compensation offers to victims and their families between 1992 and 1998, and Dr M Garetta, director of the National Blood Centre of France, was sentenced to four years in prison. Canada announced a $150 million package in 1989 for those who had contracted HIV from contaminated blood. A decade later it pledged a further $1.2 billion.³

One important outcome of the inquiry is the establishment of the Infected Blood Compensation Authority, which will administer the scheme. A table of likely figures for compensation has been belatedly drawn up and will apply to victims themselves, relatives and the estates of those who have already died. The compensation figures will range from £35,000 for acute hepatitis C to £2,735,000 for HIV with hepatitis, which has already led to liver cancer or a transplantation.⁴ There will be interim payments of up to £210,000. It is estimated that the total bill for compensation will be approximately £10 billion. Most of this will be funded by public-sector borrowing and from the annually managed expenditure of the department of health. In other words, the pharmaceutical industry, which has been at the heart of the scandal, will once again be subject to the privatisation of profit and the nationalisation of liability.

The Infected Blood Inquiry statistics report, published in September 2022, established that approximately 26,800 people were infected with Hepatitis C (HCV) after a blood transfusion, often linked with childbirth or surgery. HCV and Hepatitis B (HBV) can both result in long-term liver damage, leading in some cases to cirrhosis and cancer. In the period covered by the report there were around 4,000-6,000 people with bleeding disorders at any one time. Approximately 1,250 were infected with HIV, including 380 children, and almost all those with HIV were also infected with HCV. Three quarters have died. Between 2,400 and 5,000 people who did not have HIV were infected by one hepatitis virus or another and developed chronic liver disease. About 3,000 people have died as a direct consequence of infected blood and blood products and a further 3,000 today are still suffering long-term, life-limiting, illness. Almost all of which could have been avoided, had timely warnings been heeded.

Failures

Sir Brian Langstaff’s report is unequivocal and a masterpiece of lucid reporting. He says:

I have to report a catalogue of failures which caused this to happen. Each on its own is serious. Taken together, they are a calamity. Lord Winston famously called these events “the worst treatment disaster in the history of the NHS”. I have to report that it could largely, although not entirely, have been avoided. And I have to report that it should have been.

I also have to report systemic, collective and individual failures to deal ethically, appropriately and quickly with the risk of infections being transmitted in blood, with the infections when the risk materialised, and with the consequences for thousands of families.⁵

From the mid-1940s it was beyond doubt that blood transfusions could cause ‘serum hepatitis’ and that this could be fatal or lead to long-term disease, liver failure, cirrhosis and cancer. The virus responsible for Hepatitis B was identified in the early 1970s. It was known by the mid-70s that a ‘non-A, non-B virus’ was transmissible by transfusion and had similar long-term consequences, identified as HCV in 1988.

Prisoners

As early as 1974, warnings about the dangers of using pooled plasma from numerous donors - particularly those where it had been harvested from prisoners and intravenous drug users - were given by Dr Judith Graham Poole, who had already developed a safe alternative, cryoprecipitate. It was well recognised that blood donated voluntarily by healthy, unpaid donors was far safer than commercially sourced blood or blood harvested from unfree populations. Blood donations were taken from UK and US prisons throughout the 1970s and into the 1980s. By mid-1982 it was well known that whatever was causing Aids was transmissible by blood and blood products.

The report highlights how successive governments - Labour and the Tory-Lib Dem coalition - contributed to the catastrophe. This included failing to appreciate the risks from imported blood products, failing to tell people about such risks, failing to ensure that the UK was self-sufficient in plasma to treat haemophiliacs, which was a direct consequence of a failure to invest in what was then a state-owned facility making safe blood products. There were also clear efforts to cover up errors of commission and omission, including the loss and deliberate destruction of records relating to the scandal.

The government is also charged with failing to take action to make donated blood safer by eliminating risky donations, failing to implement heat activation of the virus and screening in a timely manner, failing to communicate the value of using less risky alternatives to blood transfusion, failing to understand and tell people that HIV was transmissible by transfusion and, above all, wilfully using known contaminated blood products when there were safer alternatives. As late as September 1983 the Conservative government’s official position was stated by then health secretary Kenneth Clarke: “It has been suggested that Aids may be transmitted in blood or blood products. There is no conclusive proof that this is so.” This is a line which continued to be reported well into 1984 - a position which the report describes as “indefensible”.

It also highlights the part played by cosy relationships between pharmaceutical companies and haemophilia centre clinicians: sometimes gifts were provided, sometimes there was sponsorship or funding for research, funding to attend international conferences, and extravagant hospitality was provided to gain influence for commercial blood products:

At this distance of time, and where the clinicians most prominently associated with pharmaceutical companies (such as Professor Bloom, Dr Kernoff, Dr Aronstam, and Professor Savidge) are dead, it is no longer possible to determine what impact these relationships and these offers of funding had on clinical decision making. But if clinicians accepted funding (whether for hospitality or attending conferences, or research) it was all the more incumbent on them to ensure that their clinical recommendations and the risks and benefits of treatment were fully explained to their patients. As this report finds, the failure to do so was widespread and profound.⁶

Pernicious

The report consists of seven volumes. Volume 2 is devoted to the personal stories and case studies of those who have suffered directly. All these accounts are heart-breaking, but perhaps one of the most poignant was the use of Treloar School and College - a residential and day special school for disabled children, where Dr Anthony Aronstam was, from 1977, responsible for the treatment programme of haemophiliac children and conducting research.

His failure to inform children or their relatives of the risk of the treatments or research and the fact that he “did little to reduce the risk of Aids” and “did not even tell others about the risk until it became inescapable” is highlighted by the report. While it may seem invidious to single out one doctor, when so many others are named for the pernicious role they played, it is, I think, symbolic of the way in which the infected blood scandal is a damning indictment of British society in general. The poor, disabled, those suffering stigmatised illnesses such as hepatitis and Aids are all treated very differently to the rich and powerful, who are protected and protect one another.

For example, in December 1986, the then chief constable of Greater Manchester, Sir James Anderton, remarked that homosexuals, drug addicts and prostitutes who had HIV/Aids were “swirling in a human cesspit of their own making”. His comments were not untypical of the time, conveying an attitude of ‘innocent’ and ‘guilty’ victims of disease and hostility to the poor, which is often expressed in moral terms. It was a period in which insecurity in the ruling class manifested in a series of incidents, which have subsequently found their expression in public inquiries.

The Bloody Sunday Inquiry was the final realisation of the truth of the atrocity perpetrated by the British Army in 1972, after numerous attempts to whitewash the events. The Hillsborough disaster, in 1989, in which the police were not held to account for their actions until the Hillsborough Independent Panel, instituted in 2009, finally issued its report in 2012. For much of the 1980s the actions of the police, so prominent in helping to crush the miners’ strike, were regarded as untouchable.

The infected blood scandal may have been in part a reflection of its time, but the process goes on unabated: the Post Office scandal, currently the subject of a public inquiry, in which sub-postmasters were made to pay the price for those with so much to gain from privatising the Post Office - Fujitsu is unlikely ever to be held to account for destroying so many people’s lives. The Grenfell Tower inquiry, instituted by Theresa May in September 2017, has been going on for almost as long as the Infected Blood Inquiry and again is concerned with the deaths of the poor and marginal and is therefore unlikely to ever hold to account those who were responsible for the dangerous cladding of tower blocks.

The Infected Blood Inquiry report has 12 main recommendations and many sub-clauses to each one. They range from at last giving the recipients of infected blood something like the compensation they should have received years ago to “giving patients a voice” and “ending a defensive culture in the civil service and government”.

Laudable, I am sure, but unlikely to be realised while the civil service and government are dedicated to protecting the interests of precisely the people who were ultimately responsible for the disaster and who may never be held to account.