Gary Webster was seventeen when he was told he had Aids and might have just two or three years to live. It was early 1983 and he was at Treloar’s, a boarding school for children with haemophilia and other disabling conditions. He had to give the news to his parents himself. In his written statement to the Infected Blood Inquiry he said the ‘worst thing’ was the stigma. He was ‘segregated in hospitals with a big sign on my door and everyone entering being barriered up’. His close relationships were ‘irreparably damaged’; in his twenties and thirties, ‘I was on a mission to destroy myself and basically lost the plot. I went off the rails and didn’t care about myself. On one occasion I drove a car through a brick wall.’ In the mid-1990s, Gary’s life was saved by new antiretroviral treatments. He had also been infected with hepatitis C, however, and both conditions continued to undermine his health. Contaminated blood products, he said, had ‘ruined his life’.
Colin Smith’s parents were told their son had HIV when he was two. It was 1984. The doctor ‘didn’t even take us into a room; he just told us in a corridor in front of other patients,’ Colin’s mother recalled. The family had ‘Aids dead’ scrawled on their house and scratched on their car. Colin died aged seven, weighing less than a four-month-old baby, only able to be moved when wrapped in sheep fleece. His parents found out three years later that Colin had also been infected with hepatitis C; the doctors didn’t even know which infection had killed him. They had to fight to bring their son home to die, and to have him buried – the hospital tried to insist on cremation. ‘I still have trouble today [with] the fact that he’s in a grave on his own,’ Colin’s father said, ‘and the guilt will never go away.’
Joe and his wife, Frankie, first began to suspect there was something seriously wrong with Joe when he collapsed at work and they were told it looked as if he was developing ‘full-blown Aids’. It was early 1985. They were given little information. For the first few months, they weren’t sure if Joe really did have Aids. He was 21 and Frankie was 19; they hadn’t been married long. Frankie, they discovered, was pregnant. Joe’s doctors offered them tests, but only vague advice. Frankie eventually gave in to pressure to have a termination. She was seven months pregnant so had to go through labour and delivery, and all without her husband, in a hospital ward marked with biohazard signs, attended by staff in protective suits. Frankie didn’t tell her parents; she felt guilty about not giving them grandchildren. The couple broke up. Frankie cut herself off from her family. She felt like ‘a murderer’. In 1999, she too was diagnosed with Aids. Giving evidence to the inquiry, Frankie said: ‘I have probably been guilty of lashing out and appearing discompassionate … That’s what has been shown to me.’
Bob Threakall was told he was HIV-positive when he and his wife were trying for a second baby. It was the summer of 1985. His doctors had been aware of his status since January that year. In her evidence to the inquiry, Bob’s wife, Sue, recalled her ‘sheer terror’ when she fell ill on holiday and wondered ‘if I too had contracted HIV’. Their son was rarely invited to friends’ birthday parties. Eventually Sue had to quit her job. In 1991, Bob was admitted to hospital with almost no normal lung tissue left. ‘He weighed just five stone,’ Sue said, ‘and died the kind of death you would not wish on a rabid dog.’ On his last day, Bob asked her if everything was ‘sorted’ financially: ‘I lied and told him we’d be fine, and a few minutes later he died.’ Sue couldn’t face going to the place where his ashes were scattered: she told Caroline Wheeler that she never would ‘until I can hold my head up high and say that now it is sorted’.
The Infected Blood Inquiry, announced by Theresa May in 2017, began proceedings the following year. It has now heard oral evidence from more than two hundred people, with many thousands of pages of documents and written submissions, from family members as well as victims. Gary, Colin, Joe and Bob were all born with severe haemophilia A (the most common form, which mainly affects men), meaning that they lacked the clotting protein Factor VIII. Before the 1960s, treatment for haemophiliacs was very limited. One recalled:
For internal bleeding there was nothing on offer other than immobility and encasing the limb in a plaster cast. The pain from such a situation defies description … When the plaster is removed, the muscle wastage is serious and restoration of movement becomes hazardous and painful.
Internal bleeds – particularly on the brain – could be fatal; tooth extractions carried a risk of death. The first revolutionary treatment for haemophilia was cryoprecipitate, discovered in the early 1960s. Cryo was separated out from liquefied frozen fresh plasma by centrifuge then refrozen for storage. It had to be carefully thawed and administered by a drip in hospital: this meant hours of painful treatment, and often a week’s hospital stay to recover, but it did help the blood to clot. Factor VIII concentrate was developed later in the decade. Production involved pooling many batches of donated blood, then fractionating it. The Factor VIII was freeze-dried and packed into bottles. Haemophiliacs could get it out of the fridge themselves, mix it and inject it to stop bleeds. It was a miracle treatment: in 1962 the median life expectancy for severe haemophiliacs in Britain was 37; by 1980 it was practically normal.
Ultimately, however, Factor VIII killed many of those who infused it in the 1970s and 1980s. For decades, British officials and ministers claimed that the contaminated blood scandal was a tragedy no one could have prevented: when haemophiliacs began to be infected, hepatitis C hadn’t even been named, and HIV/Aids was entirely unknown; new protocols were introduced once the dangers became clear. According to Margaret Thatcher, ‘all patients received the best treatment available in light of the medical knowledge at the time.’ These claims were not true.
In 1970, Richard Titmuss celebrated Britain’s tradition of voluntary blood donation in The Gift Relationship, warning that paid-for blood carried a greater risk of contamination. But while it was true that most ‘whole blood’ in the UK came from volunteers, blood products were often provided by the commercial sector. Factor VIII concentrate was licensed for use in Britain in 1973. Much of it was imported from the US, where donors were often paid, and where huge pools of blood from different donors were used in production, increasing the chances that any one batch might contain contaminated material. A few years later there was an outbreak of hepatitis among the haemophiliac pupils at Treloar’s, but doctors told them and their parents that it was nothing to worry about.
At this point, two types of hepatitis had been isolated: A and B. Hepatitis B is spread through blood; most adults fight off the infection within a few months, though children are more likely to develop chronic hepatitis B. Doctors were aware, however, of another type of hepatitis, also blood-borne, which seemed to be more serious – they called it ‘non-A, non-B’. In 1975, ITV’s World in Action broadcast footage of poor Americans queueing to sell their blood on Skid Row in Los Angeles, and highlighted the risk of catching hepatitis B from factor concentrates produced in the US. An American scientist warned Britain’s Blood Products Laboratory that American Factor VIII was ‘extraordinarily hazardous’, and some British doctors urged the Department of Health and Social Security to block imports from the US.
In the same year, Dr John Craske, director of the Public Health Laboratory Service, co-ordinated a ‘hepatitis study’ to establish which blood products were most likely to transmit the various strains of hepatitis. Forty-five pupils at Treloar’s were enrolled: each was given either cryo, NHS Factor VIII or imported Factor VIII, and monitored. There is little evidence that consent – let alone informed consent – was gained from parents, a common pattern in the many trials conducted on haemophiliacs at the time. By 1977, the study had shown that cryo was safer than Factor VIII. But Factor VIII continued to be used; in fact, Treloar’s promoted its use as a prophylactic and, again, used pupils as test subjects to investigate the effects of different courses of treatment.
In 1975, faced with evidence of the dangers of US blood products, Labour’s minister of state for health, David Owen, had told the House of Commons that he was funding an effort to make Britain self-sufficient in blood products by 1977. But he was given a new brief in 1976. The Labour government dropped the commitment to self-sufficiency soon after, apparently for financial reasons. Much of the relevant paperwork, when it was later sought, had mysteriously been pulped. The abandonment of the commitment was never announced to Parliament.
In 1979, Craske wrote to Dr Tony Aronstam, who was in charge of treating haemophiliac pupils at Treloar’s, to ask if he would give some of his mild cases Factor VIII instead of cryo when they came in for treatment. It wasn’t possible to screen blood itself for hepatitis non-A, non-B; consequently, Craske wrote, administering Factor VIII to virgin patients ‘is the best way of finding out whether the material is associated with cases of hepatitis’. Aronstam refused: he didn’t want his mild haemophiliacs going yellow. He did continue to allow Factor VIII to be administered to the severe haemophiliacs under his care. In 1980, it seems, he started experimenting with makeshift heat-treatment of blood products (to kill hepatitis viruses), but two years later he enrolled dozens of boys in a clinical trial where they were given only US-made Hemofil for a period of eight months.
Craske told doctors in 1980 that blood products like Factor VIII carried a ‘high risk’ of infecting patients with hepatitis non-A, non-B, ‘and a 20-30 per cent chance of resultant chronic hepatitis’. Chronic hepatitis can ultimately cause cirrhosis, liver cancer and liver failure. The following year, a German pharmaceutical company brought out the first heat-treated Factor VIII. Other companies were working on their own methods of killing viruses in factor concentrates. Documents show that in January 1982 and January 1983, British doctors were seeking ways to test these new products. Early experiments had been conducted on chimpanzees, but that was expensive.
Professor Arthur Bloom, director of the haemophilia centre at University Hospital of Wales in Cardiff and the UK’s leading specialist, wrote in a letter dated January 1982 that the obvious solution was to test on humans by ‘administering those concentrates to patients not previously exposed to large pool concentrates’. Existing studies had shown that it was possible to get results using ‘quite small numbers of previously untreated patients’ (PUPs). The minutes of a meeting attended by Craske, Aronstam and other doctors in January 1983 reveal that using previously untreated children was considered a potential fallback option, even though some of those present pointed out the ethical problems. Chimps were expensive, but PUPs were free. Mike Dorricott, who had mild haemophilia, was given Factor VIII while having his wisdom teeth out aged fifteen, in November 1982. He contracted hepatitis C. His family now believe that he was identified as a PUP and deliberately given Factor VIII rather than cryo. He had two liver transplants, but died in 2015, aged 47.
On 16 July 1982, the US Centres for Disease Control (CDC) noted in its bulletin that three people with haemophilia had come down with Pneumocystis carinii pneumonia, a fungal infection of the lungs that was one of the distinctive illnesses associated with the mysterious new condition then known as Gay-Related Immune Deficiency. An article in the New England Journal of Medicine in January 1983 said it was becoming clear that ‘haemophiliacs are at risk for Aids,’ and argued that using Factor VIII ‘may exact a high cost’. Ten haemophiliacs in the US had been diagnosed with Aids, and haemophiliacs who had received Factor VIII were more likely to have low T-cell counts – an indicator that a patient might have Aids – than those who received only cryo. On 16 January 1983, the Observer reported on the ‘mystery disease threat’ that American blood products could pose to haemophiliacs in the UK. On 4 March, the CDC reported that haemophiliacs were one of the four groups most at risk for Aids, and that ‘blood products or blood appear responsible.’ The director of the CDC’s haematology division wrote to Bloom in Cardiff, setting out the evidence. ‘I suspect it is a matter of time,’ he concluded, ‘before you begin to see cases in the United Kingdom.’
Kevin Slater, a twenty-year-old precision-tool engineer, presented at University Hospital of Wales on 14 March 1983 suffering from exhaustion, reflux oesophagitis and severe oral thrush. When his test results came back three days later, ‘?Aids’ was written in his medical notes. Bloom chose not to tell his patient about this possibility. In late April, he did tell the AGM of the Haemophilia Society that ‘one of my patients may have a mild form’ of Aids, but also, confusingly, that ‘I do not know of any haemophiliac with Aids in the UK, France or Germany. I do not think we need to get overconcerned about this.’ A few days later, Slater returned to the hospital with a swollen testicle and a host of other problems. ‘Acquired Immunodeficiency Syndrome new’ was written in his medical records. Again, he wasn’t told.
On 1 May 1983, the Mail on Sunday published a front-page story highlighting the threat of imported blood. But Bloom told the Haemophilia Society there was no ‘proven case’ of Aids among British haemophiliacs, and said that it would be ‘counter-productive to alter our treatment programmes’. The society shared Bloom’s letter with its members; it criticised the media coverage as ‘dramatising’ the danger of Aids, and said that without factor concentrates, quality of life would be ‘much poorer’ for many. Dr Peter Jones, director of Newcastle’s haemophilia centre, complained to the Press Council that the Mail on Sunday’s piece was ‘sensational and highly exaggerated’, and had led to haemophilia centres being ‘inundated with calls from worried families’. The complaint was upheld, and the Press Council recommended that the author, Sue Douglas, be sacked (her editor refused). Just this year, a man got in touch with her to say that after reading her article, his parents had insisted that he shouldn’t be treated with Factor VIII: Douglas had probably saved his life.
The pharmaceutical companies that exported blood products from the US downplayed the risk. One of them, Cutter Laboratories, claimed that ‘it is unclear whether the syndrome contracted by haemophiliacs really is the same as the Aids syndrome contracted by other high-risk groups’; another, Armour, said there was ‘little evidence’ of a link between its blood products and Aids. Many scientists disagreed. On 9 May 1983, a leading epidemiologist, Dr Spence Galbraith, wrote to the DHSS that on his assessment of the evidence, ‘all blood products made from blood donated in the USA after 1978 should be withdrawn … until the risk of Aids transmission … has been clarified.’ He pointed out that given the long incubation period for the disease, there could well be unknown cases among blood donors, and among haemophiliacs. In the summer of 1983, Bloom and a colleague recommended that children and mild haemophiliacs should be treated with cryo and NHS Factor VIII, to minimise their exposure to the most risky products. This was a recommendation only. At Treloar’s, Aronstam tried to increase the use of NHS Factor VIII, but continued to use a large quantity of imported products.
The first British haemophiliac to die of Aids was a man in Bristol, in September 1983. The Guardian reported that doctors knew he had ‘almost certainly caught the disease from contaminated supplies of the blood-clotting agent Factor VIII, imported from the US’. The DHSS acknowledged internally that there was ‘strong circumstantial evidence’ that Aids could be transmitted through blood. Yet officials and ministers continued to minimise the danger in public: on 14 November 1983, Ken Clarke, minister of state for health, told Parliament that there was ‘no conclusive evidence that Aids is transmitted by blood products’.
In December 1983, Bloom warned his colleagues at University Hospital that Kevin Slater’s blood ‘should be treated as infective’. In March the following year, he and another doctor were asking haemophilia doctors to supply them with lists of patients able to participate in a clinical trial of commercial Factor VIII that carried ‘a putative risk of transmission of Aids’. Only in April 1984, after researchers showed that Aids was caused by what they called the HTLV-III virus (later renamed HIV), did the British government accept that blood products were a vector. But the DHSS didn’t make a public statement until December: officials thought ‘public interest had waned.’ That year, more Factor VIII was used at Treloar’s than ever before, the majority imported. Much of it was used not to treat bleeds, but prophylactically.
The first antibody test for HTLV-III was made available in September 1984, and haemophilia doctors sent samples of their patients’ blood to be screened: a third of those who had used Factor VIII were positive. There was debate about what a positive result meant, but the scientist who had developed the test thought it likely that all these patients would, in time, contract Aids. (Few, if any, were told about the test or their results.) On 10 December 1984, even Bloom acknowledged that ‘it is difficult to avoid the argument that [Factor VIII] constitutes a risk.’
Between March 1983 and February 1984, the four pharmaceutical companies that manufactured Factor VIII in the US gained licences for heat-treated versions. Heat-treating aimed to kill HTLV-III, though there wasn’t yet conclusive evidence that it was effective. The DHSS used this fact to argue that moving to the new version, which was 50 per cent more expensive, should wait for clinical trials. In September 1984, research showed that heat-treating did substantially reduce the risk of HTLV-III, but the DHSS didn’t recommend the use of heat-treated products in England and Wales until the following year. Even then, there was no recall of the old Factor VIII. Some hospitals were still using up stocks of previously imported products in late 1985. Slater died that year, in an isolation ward, aged 22. His medical notes recorded that he was ‘weak as a kitten’.
In the UK between 1970 and 1991, about 1250 people with bleeding disorders were infected with HIV (and many of them with Hepatitis C, too); by the time the Infected Blood Inquiry began, about three-quarters had died, the majority of them from HIV-related causes. In the same period, about 2400 people with bleeding disorders are known to have been infected with hepatitis C alone, and by the time of the inquiry, nearly a third had died, 39 per cent from causes related to hepatitis C. The true number of people with bleeding disorders infected with hepatitis C could be more than twice as high. Whole blood transfusions gave many fewer people HIV – between 79 and around a hundred – but many more chronic hepatitis C (an estimated 22,000).
As the scale of the disaster gradually became clear, governments made some paltry support available to affected haemophiliacs. But successive governments, Conservative and Labour, refused to contemplate paying compensation or admitting responsibility. Many relevant papers have been destroyed, and victims’ medical records lost or falsified. When in the early 1990s a group of HIV-positive victims agreed to settle a case they’d brought against the government in exchange for ex-gratia payments, they had to sign away their right to sue again over any related medical problem, though officials knew what most of the litigants didn’t: that almost all those who had used unheated Factor VIII had also been exposed to hepatitis C.
Victims, as well as family members, lawyers, supportive politicians and journalists have spent years – in many cases decades – investigating the contaminated blood scandal. Caroline Wheeler was a 21-year-old trainee reporter at Birmingham’s Sunday Mercury when she picked up a call from one of the victims. She found it ‘hard to believe’ when he told her he’d been given hepatitis and HIV as a teenager via blood products prescribed to him on the NHS, and had also been exposed to vCJD (‘mad cow disease’). Wheeler became a lobby journalist (she is now political editor of the Sunday Times) and began her ultimately successful press campaign for a statutory inquiry and compensation. Cara McGoogan first wrote about the scandal when she covered the inquiry’s early hearings for the Daily Telegraph, and later made it the subject of a podcast. Wheeler’s book draws on more extensive interviews with British politicians, while McGoogan pays greater attention to the parallel disasters occurring in the US and France. But both books tell the same fundamental story; both authors have spoken to many of the same victims and campaigners, and both use the evidence presented to the inquiry (most of which is available online; it makes for harrowing reading).
The catastrophe that ravaged whole communities of gay men, particularly in cities such as New York and London, is the backdrop against which the middle sections of Wheeler’s and McGoogan’s books play out. Relationships between haemophiliac Aids sufferers and gay men who were also infected weren’t always easy, not least because haemophiliacs were often described as the ‘innocent’ victims. There is, though, a striking parallel between the two groups that neither McGoogan nor Wheeler draws out: in both cases, a whole generation of young men thought they were going to be the first to be liberated from the pain and fear that had scarred the lives of people like them in the past, but in the event discovered that the price of freedom was a death sentence.
How did it happen? The motivation of the companies producing Factor VIII in the US was clear: profit. In the 1970s and early 1980s, they bought blood in low-income areas, as well as from homeless people and inmates in maximum-security prisons. One ‘bleeder’ incarcerated at Angola Penitentiary in Louisiana told a lawyer that donors were barely screened before giving blood; he knew people who had turned yellow from hepatitis and continued to donate; bleeders injected drugs and had oral and anal sex in the plasma centre’s bathrooms, which were known as the ‘honeymoon suite’. The companies knew about the hepatitis problem, but dismissed suggestions that they should do something about it: it would have made their product more expensive, and doctors were happy to buy the stuff anyway.
All four companies were told at least as early as November 1982 that Aids was always fatal, and that it could be transmitted through blood products. In 1983, Cutter started screening donors for hepatitis B, which had a similar epidemiology to Aids and could be used as a proxy test, but soon stopped because it was costly and no one else was bothering. Bayer’s heat-treated Factor VIII product was licensed in the US in February 1984, but it kept making the untreated version until August that year and didn’t stop selling old stock until the following summer. Armour’s parent company was told in October 1985 that its heat-treatment method wasn’t completely effective against HIV, but denied everything; only after two children in Birmingham and four patients in Newcastle were infected with HIV did the company admit to the DHSS that its product was unsafe. If non-heat-treated Factor VIII was banned in one country, the companies just sold it elsewhere. In the first quarter of 1985, Bayer exported twenty thousand vials – more than five million units – of its old Factor VIII from the US to other parts of the world. Competition between pharmaceutical companies sometimes stimulated innovation, but it could just as easily generate a race to the bottom. The head of the CDC’s Aids taskforce told the companies that their actions ‘ultimately led to not only a lot of death and misery, but a destruction of your customers’. As McGoogan points out, the parallels with the present-day opioid crisis in the US are clear.
By 1998, Aids was the biggest killer of haemophiliacs in the US: an estimated eight thousand people were infected with HIV from Factor VIII; by 2020, only 719 were alive. In the late 1990s, after a campaign that went on for years, Congress authorised payments of $100,000 to haemophiliacs and their partners or children who’d been infected. Some won larger payouts from the four companies involved after gruelling lawsuits and direct negotiations. But the legal system often seemed stacked against victims: one judge threw out a case because the potential compensation claims might ‘hurl the [pharmaceutical] industry into bankruptcy’.
Thousands died in the Americas, Europe, Asia and Africa. In some places, the state responded relatively swiftly. Canada made ‘humanitarian payments’ to victims starting in the late 1980s, held a public inquiry and paid compensation in the 1990s, and subsequently brought criminal charges against organisations and individuals, including the Canadian Red Cross (it was fined and lost its role in the collection of blood). In other countries, people went to jail: in Japan, several ex-government officials and big pharma executives were imprisoned. Ultimately, the companies responsible for producing and distributing infected blood products paid more than a billion dollars in compensation worldwide, but most victims never got a penny.
What was going on in the minds of the executives at these companies? In the Panalba Role-Playing Case Study, developed at the University of Pennsylvania and based on the real case of the drug Panalba, groups are asked to role-play as executives in a pharmaceutical company, one of whose star drugs has been found to be causing deaths. They are given a range of options, from recalling the drug to continuing to produce and market it until it’s banned. Almost every group that has ever participated has decided to keep selling. The roles they play override the participants’ personal morality, even though – unlike real-life executives – they aren’t in line for any financial rewards.
Explaining the behaviour of doctors is perhaps more difficult. Many of those involved clearly believed for a long time that withdrawing imported Factor VIII would pose an immediate danger to severe haemophiliacs that was greater than the risk of contracting hepatitis B, or hepatitis non-A, non-B, or Aids. Their patients had got used to living normal lives: many would have been distraught if Factor VIII was withdrawn. The culture in medicine was hierarchical and paternalistic: Colin Smith’s mother said of Bloom that ‘He was like a god to us.’ Doctors didn’t want patients refusing treatment; some probably didn’t want patients questioning their decisions at all. Seemingly, some didn’t want to lose subjects on whom they could run trials.
A cosy relationship with the pharmaceutical companies also played a part. The companies courted doctors, paid for leading specialists (and their wives) to attend international conferences, provided training and support staff, sponsored trips for patients and funded research. In 1980, when Cutter failed to give Aronstam a research grant he’d been promised, he stopped using the company’s blood products; after that, the company reconsidered its position. It’s hard to escape the feeling that some doctors were compromised well before Aids came along, and that once it arrived, their past actions made it more difficult for them to respond properly to the mounting evidence of the danger it posed.
Aronstam was evidently seriously conflicted about what he’d done. In the summer of 1984, he invited two pupils from Treloar’s to his house to swim in his pool. Later, wandering into the kitchen, the boys saw Aronstam ‘standing over the sink, his head bowed, leaning heavily on his hands’. He was rocking and there were tears in his eyes. They asked what was wrong. ‘We’ve fucked up. We’ve messed up, boys. I’ve messed up. It’s all gone wrong,’ he said. When pressed, he was vague: he talked about stormy weather, the road ahead, and said ‘We’re going to do our absolute best for you.’ One of the boys, Ade Goodyear, was told he had HTLV-III the following year. Most of his schoolfriends died. Today, he suffers from ‘lifeboat syndrome’. He was one of the boys Aronstam enrolled on the Hemofil trial in 1982-83. When he found out Aronstam had been involved in the trial, he said it created ‘a perplexing tear in the timeline of my knowledge’.
Given how much paperwork has gone missing, it’s hard to track how the government responded to the unfolding disaster. ‘There are two theories in life, aren’t there?’ David Owen told Wheeler. ‘Conspiracy or cock-up. And I’ve always been a great supporter of cock-up. But there have been moments when … I can probably get a bit paranoid.’ Officials dismissed the warnings of doctors and scientists who disagreed with Bloom and his supporters, repeatedly preferring to wait for more ‘conclusive evidence’ before changing policy. Financial considerations clearly played a part. In 1976, an Austrian company that supplied two types of Factor VIII, one made from blood purchased in America and the other from blood donated in Europe, noted that ‘the British market will accept a higher risk of hepatitis for a lower-priced product.’ In June 1983, the Blood Transfusion Service warned the DHSS that if doctors or patients demanded heat-treated blood products, it would ‘play havoc’ with the government finances. Once the results of this institutional penny-pinching, inertia and denial became clear, officials began to shirk responsibility. Thatcher rejected the idea of compensation, on the grounds that it would set a dangerous precedent for other NHS patients whose treatment had gone wrong. Subsequent governments agreed. As the former health secretary Jeremy Hunt put it, the state ‘closed ranks around a lie’. Cock-up led inexorably to something closer to conspiracy.
Giving evidence to the inquiry, Ken Clarke complained that he is often picked on because he’s ‘the best-known person of all those people involved’. He insisted he had ‘never heard anybody suggest anything that, in the real world, a minister or a civil servant might have done that would have prevented’ the disaster. It’s true that patient demand for factor concentrates was high. A British haemophiliac told World in Action in 1975 about coming down with hepatitis: at one point, ‘vomiting really badly’, he wondered whether Factor VIII was worth it. ‘But two days later, I had a bleeding in my elbow and I had no hesitation in going to the fridge, getting my Hemofil out, mixing it and injecting it, because I knew that would stop the bleed and the pain from the bleed was going to be so much worse than any of the pain I’d suffered with hepatitis.’ In April 1983, an episode of Horizon about Aids showed an American with haemophilia, Steve, who administered a dose of Factor VIII as he talked to the interviewer: ‘I think everybody’s a little scared – is this the infusion that’s going to give it to me?’ But, he said, ‘I’m not ready to give up the benefits of concentrates yet.’ Factor VIII was a miracle treatment. At any point, it would have been difficult suddenly and massively to reduce its availability by ending imports. But that isn’t the same as saying there was nothing that could have been done differently.
If the pharmaceutical companies, prominent haemophilia doctors, and most politicians and officials in the British government hadn’t been so blasé about the dangers posed to haemophiliacs by hepatitis-contaminated Factor VIII, it’s likely that many fewer would have been infected with hepatitis – and ultimately with HIV. Much earlier, it would have been possible to cease all prophylactic use of Factor VIII; to instruct doctors always to give cryo and NHS Factor VIII as a first choice; to expand British blood-product manufacture as quickly as possible, and to stump up for heat-treated products even while trials of their effectiveness were still ongoing. It would have been possible to inform patients and their parents about the mounting evidence of danger, and about the tests that were being conducted on haemophiliacs’ blood and what the results were. Not every victim would have been saved, but many could have been. Colin Smith was given his first infusion of Factor VIII in late July 1983, when he was around twelve months old and being treated by Bloom; he was known to be a ‘PUP’ – it was written in his medical records.
Jason Evans was four when his father, Jonathan, died in 1993 after being infected with hepatitis C and HIV. The last time Jason saw his father – the ‘first real memory’ he has of him – was on his fourth birthday, when Jonathan lay gravely ill at his parents’ house. Jason first heard of Aids when a girl at school called him the ‘Aids boy’. His mother found it impossible to talk about her husband without crying, and Jason only began to find out more when he got access to the internet. As a young man, he began having panic attacks, and was diagnosed with globus pharyngeus, a permanent obstruction of the throat caused by anxiety. He spent more and more time pursuing archival trails that might explain how his father was infected. His girlfriend broke up with him. He put his career on hold to found the campaigning group Factor 8. Later, a counsellor helped him see that the research had come to obsess him in part because it gave him a connection to his father: ‘Every hour he spent reading documents was stretching out the time they had together.’
The inquiry’s final report won’t be published – to the frustration of many – until March next year, but the chair, the former High Court judge Brian Langstaff, has already concluded that ‘wrongs were done at individual, collective and systemic levels,’ and recommended interim payments of at least £100,000 to victims, bereaved spouses, parents who lost children and children who lost parents. The government has so far only authorised payments to the first two groups. Ultimately, the cost of compensation could reach £1 billion. More than five hundred more victims have died since the inquiry was announced.
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