It turns out that books on the Contaminated Blood Scandal are like buses, there isn’t one for years and then two come in quick succession. Both by journalists, in different ways they chronicle the way treatment options changed for haemophiliacs in particular. In both books, the authors expose the blood products and plasma trade – known as ‘liquid gold’ for the latter’s yellow tinge and the fact the industry was more lucrative in the 1980s than its metal namesake – and relay the catastrophic failure on top of catastrophic failure by doctors, health officials, ministers and pharmaceutical companies. Throughout, the National Health Service’s biggest treatment disaster is brutally laid bare. Both Death in the Blood: The inside story of the NHS infected blood scandal by Caroline Wheeler and The Poison Line: A True Story of Death, Deception and Infected Blood by Cara McGoogan are forerunners to the next tome on this issue, the final report of Sir Brian Langstaff’s Infected Blood Inquiry. That long-awaited publication was due this autumn at the time of these authors’ writing but was recently delayed until March 2024 due to the extent of criticisms it will make.
The books together have a remarkable way of covering similar content without feeling repetitive to a reader of both. It feels important that two professionals have looked at the issue, from different lenses, and come to shockingly similar conclusions. Each has done an amazing job to put those with lived experience of this horror at the heart of the story, weaving in testimony from those still with us and so many who are tragically not. With someone who was infected with HCV or HIV through infected blood products dying every four days, the overdue nature of the injustice is laid bare on every page.
Both books are a loving tribute to three groups of people. First, the infected and affected community who have battled for airtime and justice for nearly four decades. They are all heroes. Almost everyone whose story is told in these pages has been lied to by a medical professional on countless occasions, had their experiences belittled by those who are meant to care for them or represent them and had drastic health complications – sometimes directly from AIDS, HIV complications, hepatitis B or C or the stress involved in the loss, care or destitution that so many have been forced to endure.
Second, journalists. The role of the authors themselves – Wheeler of The Sunday Times via regional papers as well as the Sunday Express and McGoogan of The Daily Telegraph and Bed of Lies Podcast – is self-evident but they chart time again those journalists that have gone above and beyond. These include Susan Douglas, Medical Reporter of the Mail on Sunday in the 1980s and Andrew Neil as editor of The Sunday Times in the late 1980s and early 1990s.
Thirdly, the women involved. It’s interesting that in what was described by one of those giving such compelling testimony in McGoogan’s book, the 'male-dominated world of haemophilia, and the male-dominated world of HIV/AIDS,' it is women who are so often the brave people taking the campaign forward. Whether it’s the initiatives of the infected and affected, mothers, daughters, sisters and carers, the two authors, the long-standing chair of the associated parliamentary campaign Dame Diana Johnson MP and the likes of Clair, Frankie, Sue and many more in the pages of the manuscript: each have gone above and beyond, often at great personal risk. Seventy-one women as infected partners of haemophiliacs were infected with HIV – 71 too many – a travesty compounded by the fact they have found it so hard to be heard, sometimes even by my own organisation. Their stories are here for posterity.
The most shocking things about the accounts in both books is the behaviour of the pharmaceutical industry, in particular the way they harvested blood in US prisons, and the paternalism of so many of the haematology doctors. Profits maximisation seems to always motivate the industry that could have behaved so differently while still making a lucrative return from the world's haemophiliacs. The account from Wheeler about the Arkansas prison programmes made worse by then-Governor Clinton, who later became president, and McGoogan’s research into the Louisiana prison, known as Angola, where fellow inmates ran the clinic, took the blood, selected the donor pool and made the clinic the only safe place in the prison for drug use and sexual encounters, are just startling. The fact that former prisoners had higher moral standards than the pharma executives is not missed, many of the former bringing to light what was really going on.
The spotlight shone on doctors here in the UK, especially in England and Wales, shows a shocking state of affairs. Often knowing their patients from a young age, they played doctor, guardian and God. They apparently knew better than their patients, parents and colleagues who tried to raise the alarm, and even, at one tragic sliding-doors moment, the US Centre of Disease Control who wrote a letter of warning that was unheeded. I am sure many have had sleepless nights about their role in this scandal, and are all relieved they were not working in France – whose Health Ministry threw the book at them in what might be considered an act of scapegoating, but the fact remains leaders in their field were in hoc to industry, were secretive and did too little to make things right. Not only did many secretly conduct trials on their patients, including the boys at Treloars School, or test them without their consent, they kept the results of both from their patients for months, if not years or a decade. From a group of people who exercised such agency over the lives of others came excuse-after-excuse about why the status quo gave them no options; why did they not think their agency could secure policy change – even self-sufficiency – or breakthroughs in the campaigns for justice. Where ministers time and again ignored victims, doctors could have had great sway.
Government is a start-to-finish failure in this scandal, something that is still experienced to this day. Only two ministers come out of this well: David Owen and Theresa May. The former tried to fund self-sufficiency in the UK blood supply when a health minister in the 1970s and the latter finally commissioned the public inquiry. Andy Burnham’s important epiphany came too late into his time in office but, unlike many others, he took this knowledge to try and bring about change. As shadow health secretary and in his last speech in the House of Commons, he set the issue alight like few others.
The most jarring part of reading both accounts for someone who works in HIV advocacy today is the language: the use of ‘AIDS’ and ‘infected’ to give just two examples. Both are important. For the victims of the contaminated blood scandal, this is the HIV they experienced – the time before treatment, the death sentence, the AIDS-defining conditions, the 1980s stigma and watching the tombstone adverts for the first time, and the way people were hounded from their homes, schools and workplaces. Not only is it the virus as they experienced it, it has been the trauma that goes with it – many frozen in time because of how they found out, how they were treated, the children they comforted as they died or that they were denied or the loss they experienced and have relived and relived. As haemophilia is hereditary and served by a small number of haemophilia centres, haemophiliacs are often known to each other. This fact heightened the loss with whole generations wiped out. In 65 families, both pairs of brothers died and in six more, all three brothers died.
There is a line in McGoogan’s book that many have stopped counting the dead but never stopped fighting for justice. It haunts me. So many have died needlessly of HIV and Hepatitis C complications, surely now is the time for justice.
Sir Brian issued his first report on compensation which resulted in the first meaningful attempt at redress – £100,000 to each of those infected with HIV and Hepatitis C or their bereaved partners. But actions since seem to have stalled. Since Sir Brian’s second, and full and final report on compensation, there has been no visible progress, not even interim payments made to the estates of those who have died. In July, the Inquiry reported that 2,900 deaths were attributable to HCV and HIV infected blood and blood products and that 900 bereaved partners had received an interim payment. This means most bereaved families have so far been excluded because their loved one was not in relationship at the time of their death. There have been no attempts to register the affected and none of the infrastructure needed to allow a full compensation system to come about has been made public.
The Government insist they are ‘working at pace’. But it is starting to ring very hollow. There was real hope that it would be justice, not books, that would arrive like buses but alas this hasn’t been the case. The fight, however, is not over.
Richard Angell is Chief Executive of Terrence Higgins Trust.