Blood
‘I stopped counting how many friends died’: life after the contaminated blood scandal
Oct
Nothing prepares you for taking part in an inquiry into a traumatic event in your own life. I am a university lecturer in law, so I understand the aims of a public inquiry, its purpose and the rules of evidence, but when the topic under scrutiny is a disaster that has affected you personally, it’s something else. It reopens old wounds and forces you to revisit the pain and loss; you share private details of your life with strangers.
I was one of thousands of NHS patients who became infected with HIV and hepatitis C in the 1970s and 80s after being treated with contaminated blood. Even when the risks of infection from certain imported blood products were known, it took years before British hospitals switched to a safer treatment. By then, hundreds had been diagnosed with HIV and thousands had developed serious liver disease. Patients and their families endured decades of silence and denials before the government finally agreed, in 2015, to open a public inquiry into how the disaster had happened and why it was kept secret for so long.
As a child in the 1970s, I was being treated for haemophilia, a rare genetic disorder that means the sufferer lacks a vital clotting agent in their blood. I have a severe form of the condition: without regular injections, any knock or bump leads to bleeding in joints or muscles, causing swelling, bruises and pain. For more than a decade, the clotting agents that I – and many hundreds like me – were injected with were imported, because England and Wales could not make enough to meet demand. The imported product, a blood plasma concentrate, was mainly sourced from private pharmaceutical companies in the US, which were using blood from paid donors, some of whom were infected with HIV and hepatitis C.
HIV is the virus that causes Aids and destroys the immune system, and the hepatitis C virus causes liver disease. Both are potentially fatal. Many patients, like me, got both. For years, I expected to die of an Aids-related illness. Since I was diagnosed with HIV at 18, I have swallowed, injected and inhaled all manner of treatments, many of them with appalling side-effects – pain, exhaustion, allergic reactions, incontinence.
Estimates have varied over the years, but according to figures accepted by the inquiry, of those with bleeding disorders, 2,400 people in the UK are known to have been infected with hep C and about 1,250 had HIV as well, including 380 children. Just over half of those infected with HIV have since died of HIV-related causes. Through campaigning and advocacy work I got to know many people who became ill. After losing 20 friends, I stopped counting how many had died, and I bowed to the inevitable that my turn would come.
This was a disaster that blighted lives and is still killing people today, but for years, the victims’ questions were met with silence and rebuttals as the establishment closed ranks, leading many of those affected to believe evidence was being covered up. Medical records went missing and government documents were mysteriously destroyed. For a long time, ministers peddled a version of the line uttered by the Conservative prime minister Margaret Thatcher in November 1989, that “all patients received the best treatment available in the light of the medical knowledge at the time”.
But I and many others firmly believed that this was not true. The authorities had known more, and had not acted on it. In the 90s we began to do our own research, accumulating significant knowledge on the subject of contaminated blood. With others, I campaigned for a public inquiry, which successive governments refused.
By 2002, I had hung up my campaigning hat, having lost all hope that an inquiry would ever be held. But others continued lobbying, and on 11 July 2017, then prime minister Theresa May finally announced a full inquiry. “The contaminated blood scandal of the 1970s and 1980s is an appalling tragedy which should simply never have happened,” she said. Thousands of patients “were failed”. She added: “The victims and their families who have suffered so much pain and hardship deserve answers as to how this could possibly have happened.”
For all those infected who had died over the decades, this admission came too late. It was up to those of us still alive to bear witness.
The inquiry formally opened on 24 September 2018. The chair was Sir Brian Langstaff, a recently retired high court judge with a mellow voice and a sharp eye for detail. Jenni Richards was the impressive lead counsel to the inquiry. She described the use of contaminated blood as “one of the biggest treatment disasters in the history of the NHS”. Victims of the scandal, more than 2,000 of us, were referred to throughout the inquiry as “the infected”, and their children, parents and partners as “the affected”. Langstaff told those assembled at the preliminary hearing that they would be put “at the heart of this inquiry”. It was a powerful statement for a group that had felt sidelined and ignored for so long.
On the third day, the barrister representing the Department of Health and Social Care admitted that: “Things happened that should not have happened and so, on behalf of my clients, I say, unreservedly, that we are sorry.”
At last! After years of denials, it was gratifying to hear, in a legal setting, a lawyer admit responsibility on behalf of the government and apologise.
Those infected, or their relatives, would be the first to speak. Over the following weeks, I drafted my witness statement, describing my research over the years and my personal story. I found it harder to write about my personal life, but I knew it was important to do both. This is a short version of my statement:
“I was diagnosed with haemophilia in 1968, when I was two. From then on, my parents had to take me to the haemophilia centre at a hospital 10 miles from our home in Rugby, Warwickshire, two to three times a week, so that a doctor could inject a blood-clotting drug called cryoprecipitate into my veins. After a few years, my parents were taught to inject me and the cryoprecipitate was stored in our freezer so I could be treated at home.
“I was about nine when I was put on a new treatment called Factor VIII concentrate, made from human blood plasma. Although the NHS produced the treatment domestically, there was not enough for all the patients who needed it in England and Wales, so a lot was imported from the US. It came in small boxes, rather than large bags, and only needed to be kept cool, rather than frozen. I learned to do my own injections, which allowed me to go to a mainstream school.
“Then, in 1981, a new and deadly disease was identified in a group of gay men in Los Angeles that would later become known as Aids. Soon reports began to trickle in that haemophilia patients in the US were affected, too. A year later, the concern that the virus that caused Aids could be transmitted through blood was disclosed in medical journals. Despite the risks, senior haemophilia doctors and government ministers in the UK assured us we should stick with our imported Factor VIII treatment.
“In 1985, aged 18, I was devastated to learn from my doctor that I had the virus which caused Aids. With no treatment available at the time, I didn’t expect to be around for much longer. I didn’t hide my HIV status from friends, who were generally very supportive, though Aids was mired in stigma because of its prevalence in the gay community at a time when homophobia was rife in Britain. In the face of impending death, I coped by burying myself in schoolwork.
“That same year, the health service replaced my Factor VIII treatment with a new product, a form of concentrated blood plasma that had been heat-treated to destroy any viruses. But then another shocking revelation hit the haemophilia community. In the early 90s, a test was introduced for hepatitis C (the existence of this third type of hepatitis had been suspected since the 1970s, but not identified). Hep C is a virus that may remain dormant for years before damaging the liver, sometimes fatally. Test results showed that almost everyone who had taken Factor VIII concentrate before the heat-treated form was available had been infected. For those like me who had already been living with HIV for years, this was devastating news. For those who had escaped HIV, it must have been a crushing blow.
“Treatment for one life-threatening condition had led to me suffering from three. I trained as a social worker in the early 90s but a constant succession of illness, surgery and rehabilitation has meant I have rarely been able to work full-time.”
A key part of my statement was about the import of tainted blood products from the US. In the 1970s, the danger of transmission of viruses was already known. The NHS Blood Transfusion Service had measures in place that reduced the risk of transmission. They used small donor pools – important because blood from one person could infect a whole batch. They also tested donors for hepatitis. These measures were not in place in the US. To me, it was important to discover why, knowing the risks, the UK government continued to import blood products from the US for use on NHS patients.
I submitted my written statement. It would be more than six months before it was my turn to speak.
On 30 April 2019, I headed to London from my home in Brighton for the first day of oral hearings, at which victims would share their testimonies. My friend Derek Martindale was the first person to give evidence. “I was told I had about a year to live, and I was told not to tell anybody, including my family and my parents,” he said.
I’ve known Derek for 30-odd years. Like me, he was born with severe haemophilia and received his HIV diagnosis in 1985. The worst thing, he told the inquiry, was the mental toll the diagnosis took. There was no treatment available, and “no future”.
He explained to a packed room that the “biggest regret” of his life was an evening spent with his brother Richard, who also had haemophilia and had also been infected with HIV. “He knew he was dying. He knew he had Aids and that he didn’t have long to live and he just wanted to talk. He wanted to talk about his fears, how scared he was, but I couldn’t. It was too close to home for me, and I wasn’t there for him.” Richard had died three months later, Derek said, aged 23. Derek’s distress was palpable. There was silence in the room. Sitting by his side, Derek’s son gave him a supportive squeeze on the arm.
Derek described how he became involved in a haemophilia and HIV support group for men and their partners, which met at St Thomas’ hospital, London. “It was good to know you weren’t alone,” he said. “But over time it unfortunately changed. People started to get ill; people started to die.” A lump formed in my throat: there had been eight of us in the group; Derek and I were the only two still alive. I remembered our Saturday afternoons, gathered together, chatting about the metallic taste of pentamidine, a treatment to prevent the pneumonia to which we were particularly vulnerable.
At the end of his evidence, Derek received a standing ovation.
Over the next three months we heard stories of illness, struggle, stigma and bereavement as the inquiry moved to Belfast, Leeds, Edinburgh and Cardiff. Giving evidence in Cardiff in January 2019 was Janet Smith, whose youngest son, Colin, was diagnosed with haemophilia at just a few months old. In 1984, having been treated for the first time with Factor VIII blood products at the age of two, he tested positive for HIV. He started school, sometimes using a wheelchair, but had to leave when his health deteriorated. He got pneumonia twice, and suspected meningitis. Janet told the inquiry that her young son was always very brave. He never asked if he was going to be OK. Once, though, he said to his brother after a row: “You’re going to miss me when I’m gone.” Colin also told his brother he could have all his toys.
Sitting with Colin’s father by her side, Janet told the inquiry that when their son was in hospital in December 1989, he was very ill, and the family decided to take him home as they didn’t want him to die in hospital. She said the doctor “went mad” and insisted their little boy could not die at home, that no undertaker would take a person with Aids. Until then, the doctor “never sat down and talked to us about it or what was going to happen, or anything like that”. They did insist on taking Colin home, where he died three weeks later. He was seven years old.
A video clip was shown of Janet reading a poem for her boy in Stratton Wood, near Swindon, in May 2004. I spotted myself in the background. Years earlier, a national support group called Birchgrove, to which I belonged, had sponsored the planting of trees to mark the lives of people with haemophilia infected with HIV. We had returned that day to unveil an engraved stone.
In October, back in London, the inquiry heard part of a recording from a life history project I produced with a friend between 2003 and 2006 to capture the experiences of 60 participants affected by HIV. We had recorded them so that their stories did not die with them. As I listened to one of my old friends speaking, my emotions got the better of me: sadness at his words; pride, too, that our project gave this man a voice after his death.
The first politician to give evidence, in September 2020, was Lord David Owen, a medical doctor who became an MP and served as a health minister in the Labour government from 1974 to 1976. Owen had tried for years to throw light on one of the murkiest episodes in the whole history: the apparent efforts to cover up government failings.
Owen spoke of his frustration when he discovered that his private papers from that era had been destroyed, some time in early 1988, without his consent and against government protocol. When his secretary had asked for the papers, she was told that they had been destroyed “in a clear out”, which was “normal procedure after 10 years”. Owen pointed out to the inquiry that to destroy private papers on an issue that was still being debated (the use of infected blood had been the subject of a cabinet subcommittee meeting November 1987) was very far from normal procedure. He quoted Patrick Jenkin, secretary of state for health and social services 1979-81, who had heard that the destruction of the files had been a “conscious decision” in order to avoid prosecutions. However, Owen had been unable to prove that it had been done deliberately.
When Owen had taken over as health minister in 1974, blood products were already being imported from the US. The following year, the World Health Organization published guidelines stating that the blood of paid donors from countries like the US, where donors included prisoners and drug users, should not be used because of an increased risk of transmitting hepatitis. Concerned about the risks associated with imported blood products, Owen had, in 1975, insisted the UK needed to speed up production of its own Factor VIII, and had earmarked £500,000 for this purpose. But by the following year, Owen told the inquiry, he had moved to the Foreign Office, and the ambition for the NHS to become self-sufficient in Factor VIII was abandoned due to “gross maladministration” at the department of health.
The following day, Richards, the lead counsel, presented a 1971 journal article about the US donor system that stated, “90% of post-transfusion hepatitis from blood can be traced to the use of commercial or prison blood”. We were then shown a two-part World in Action documentary, broadcast on ITV in December 1975, which explored the blood collection system in the US at the time. The narrator explained that “paid donors carry six to 13 times the risk of having hepatitis as volunteer donors, and they can pass it on”. I found it depressing to think that the risks were spelt out so early on and yet the importing of blood products continued.
Later that afternoon, Richards brought us to the period when Aids first surfaced in the US. In 1982, the US Center for Disease Control (CDC) had reported the first three cases of Aids in people with haemophilia. Drawing on a government memo, Richards said this was “immediately known” to the UK’s department of health and social security. By December that year, all three were dead and nine more Aids cases in the US haemophilia population had been reported. Richards then quoted from a January 1983 article in the prestigious journal, Science, which said that, according to US CDC officials, “The evidence for transmission to haemophiliacs is now clear cut.”
In the UK, the first suspected case of Aids in a haemophilia patient was seen in Cardiff in March 1983. Yet when a sub-group of the committee on the safety of medicines met in July that year to discuss banning the import of Factor VIII concentrates from the US, the idea was rejected on the grounds that warnings about Aids from Factor VIII were “premature”. Two months later, the first haemophilia patient to die as a result of Aids in the UK was reported in Bristol. In 1984, a test for the HIV virus became available and 1,243 people with haemophilia, including myself, were subsequently diagnosed with HIV.
I cannot have been alone in asking myself how many lives would have been saved if the government had stopped importing blood products in the 1970s. We got a sense of the answer when the first haemophilia specialist, Prof Mark Winter, was called. “If Dr David Owen’s initiative had worked, we would have had maybe 10% infected with HIV, instead of the catastrophic 90%,” he said. Winter’s estimate meant that more than 1,000 of the 1,243 HIV infections were down to successive governments’ failure to stop importing tainted blood products. We had yet to hear if any of the succeeding ministers would take responsibility for that.
In March 2021, Penny Mordaunt, the paymaster general, made a surprise announcement that she was commissioning a review to “look at options for a framework for compensation”. This implied a further admission of fault from the government.
On Monday 8 June 2021 came my turn to give evidence. In front of about 50 people, counsel Sarah Fraser-Butlin took me through my written statement over two and a half hours. I described my discomfort at the exceptionalism applied to those of us with haemophilia compared with those who had contracted HIV in other ways. Gay people and drug users were often viewed with contempt, and tabloids presented Aids as a deserved punishment while those of us with haemophilia were labelled as “innocent victims”. I stressed how much I hated that term, since no one deserves this disease. This stigma was damaging to everyone. It was the reason that I suspected haemophilia doctors at first didn’t want to believe their patients could be infected with HIV: “I just think they denied it to themselves and to us,” I told the inquiry. Seeing us as somehow different from other HIV patients meant that haemophilia doctors often didn’t refer us to HIV specialists, to our detriment.
After some questions from the chair, my time was over and everyone stood to applaud. After all these years, I had finally got to say my piece.
In July 2021, the inquiry heard from former health ministers: a cavalcade of bland functionaries robotically telling us they had great sympathy for us, but had relied on the advice provided by civil servants. The civil servants in turn said they had offered the advice that was available.
Some contributions stood out, not always in a good way. Lord Simon Glenarthur, the junior health minister in charge of blood policy between 1983 and 1985, was asked why he and Thatcher’s government had claimed there was “no conclusive proof” of a risk of HIV being transmitted through blood or blood products. Glenarthur, a smartly dressed grey-haired man of 76, with a cut-glass accent, told the inquiry that “until there was proof that that product did contain Aids and could be transmitted, there was a need to provide an element of reassurance”.
I was infuriated. The risk was known at that time. Waiting for proof meant doing nothing until people died. If a risk exists, the sensible thing to do is reduce it, not ignore it and offer false reassurance to the public.
Four days later, Kenneth Clarke, who was minister of state for health from 1982 to 1985, dusted down the government position held at the time. “I don’t think the department did anything wrong,” he said. “I don’t think there was anything the department could have done that it didn’t do.” This denial was difficult to hear, given that the lawyer representing the government had spoken, at the very start of proceedings, of “an acceptance that things went wrong”.
When Norman Fowler, secretary of state for health and social security from 1981 to 1987 appeared before the inquiry, he said that the major failure had preceded his tenure. Asked about his understanding of the government’s policy on making the UK self-sufficient in producing Factor VIII, Fowler claimed that by the time he took up his post, it “was too late for me to influence the outcome”.
Watching this on Zoom from home, I shouted back at him that there were plenty of things that could have been done after 1981. Shifting people to products with lower risks of infection alone would have saved hundreds of lives. Fowler later admitted that during his tenure, the growing knowledge in the Department of Health about the risk of transmission of HIV through blood was “beginning to ring alarm bells, perhaps not as loudly as it could have been”.
For a stronger indictment of the previous governments’ failings, we had to wait for Andy Burnham who, in his last speech as an MP in 2017, had said the infected blood scandal “amounts to a criminal cover-up on an industrial scale”.
“Does everything you said then remain your view today, Mr Burnham?” asked Richards.
“Yes it does,” Burnham replied. “Every single word remains true.” For many years, up to and including his time in office, he said, civil servants were giving ministers “inaccurate information to put before parliament”. He criticised not the civil servants but a system that fed ministers lines, year after year, without checking to see if they were still true and up to date.
Burnham, now mayor of Greater Manchester, explained that his use of the word “criminal” referred to “medical records falsified, deleted” – such as cases where people were wrongly described as alcoholics when it was hepatitis C that was actually destroying their liver. “I think the Department of Health and the bodies for which it is responsible have been grossly negligent of the safety of the haemophilia community in this country,” Burnham said.
On 27 July 2022, Jeremy Hunt, the Conservative health secretary from 2012-2018, took the stand. He concurred with this criticism of previous governments. “I am afraid that institutions and the state close ranks around a lie, sometimes, and I think that’s what has happened in this case,” he said.
Hunt concluded his evidence by saying: “I think the totality of this was a failure by the British state. I don’t think there’s any other way to describe it.”
Two days after Hunt had given evidence, Langstaff published his first report, recommending an interim compensation payment be made to all those victims still alive, and to bereaved partners. Three months later, £100,000 was duly paid to claimants. In April 2023, Langstaff’s second interim report was published. It recommended that compensation should be made in full, and a scheme immediately set up to administer the payments. The government announced that it would take time to respond.
On 26 July, the prime minister, Rishi Sunak, appeared before the inquiry in front of 300 people at Aldwych House, and more than 1,000 watching on a live stream. Sunak did not look comfortable. He said the government was working “at pace” to set up a compensation scheme, which brought loud groans from the people in the room. This essentially meaningless phrase seems to have become the government mantra for a scheme that has no details, no timeline, no decision on eligibility and no mechanism for ensuring everyone affected is recognised. To me, Sunak came across as unaware, uncaring and insincere. (We did learn from Hunt, who is now chancellor, that there had been “about 50 meetings” on the compensation scheme.)
At the end of a disappointing week, the inquiry concluded. We had heard from 375 witnesses over 290 days. The evidence included 100,000 documents comprising 750,000 pages, more than 4,000 witness statements from the infected and affected and a further 1,200 from doctors, politicians, civil servants and others.
Much of what was revealed by the inquiry has validated what I and many others already knew, for which I am grateful. Langstaff’s final report is expected next spring, but a single line from the second interim report said it all for me. “Wrongs were done at individual, collective and systemic levels.”
I was at home on my own when I read that line and thought of the friends who had not survived long enough to read these words. I had lived to see the long-awaited inquiry, but any satisfaction was undermined by the deaths of those who did not.
