Every time Professor Edward Tuddenham walks into the haemophilia centre at University College London, where he teaches, he remembers his patients who died from AIDS. He’s one of the few surviving doctors that were part of the biggest treatment disaster in NHS history when, in the 1970s and 1980s, some 4,700 people with haemophilia were infected with HIV and hepatitis C in hospital.
“I remember them as young men,” says Tuddenham, 77. “As a Christian I look to meet them again.”
Tuddenham is one of two doctors I have interviewed for the new series of Bed of Lies, a podcast investigating the contaminated blood scandal, which you can listen to using the audio player above. The series comes alongside the Infected Blood Inquiry which, 40 years later, is finally looking into what went wrong.
Haemophilia is a genetic condition passed from mothers to sons. People with it lack a protein – either Factor VIII or Factor IX – in their blood, which causes it to clot, inducing painful and debilitating internal and external bleeds from the slightest knocks and scrapes. (There are similar blood conditions, like Von Willebrand disease, which affect women.)
A new treatment for haemophilia, which affects around 6,000 people in the UK, emerged in the 1970s: Factor VIII, a concentrated form of the eponymous protein, which could stop bleeds or prevent them altogether. Doctors hailed it as a miracle.
Tuddenham was one of Britain’s leading haemophilia doctors at the time. He had “a friendship” with his patients, he recalls. “We used to take all the boys to the mountains of North Wales and go canoeing, kayaking and climbing. We took the treatment with us in case a patient had a bleed. I’d be administering Factor VIII halfway up a mountain”.
But Britain was importing more than half of its Factor VIII from America, where plasma was collected on Skid Row – an area in Los Angeles famed for crime and homelessness; in prisons, and in gay nightclubs, during the first years of the AIDS epidemic. Doctors knew about the risk of hepatitis, and soon became aware that some Factor VIII could be infected with HIV.
They had to balance the risk – between using the ‘miracle treatment’ that might contain viruses, or reverting to its rudimentary predecessor, cryoprecipitate.
“There was a trade off between improving quality of life and range of activities, versus the high risk of this deadly infection,” says Tuddenham. “The balance as we perceived it in the early 1980s was still in favour of using the treatment which prevented life-threatening bleeds. It was a miscalculation, but it was taken in good faith.”
Today, some of those who were infected wish they had been given the chance to return to cryoprecipitate. But back then – before the advent of seeking medical counsel on the internet – “doctors were more like gods,” says Dr Liakat Parapia, who ran the Bradford Haemophilia Centre in the 1980s. “When you saw a doctor it was assumed your permission was given to be treated as they wished.”
The true scale of the AIDS crisis among people with haemophilia emerged in 1985 after HIV tests became available. Over half of the patients at the Royal Free Hospital, where Tuddenham worked, tested positive.
“That was the beginning of the tide that washed over us and took half our patients,” he says. “It’s the worst possible experience one could have as a doctor, to carry out treatments that have caused the death of your patient.”
Tuddenham’s colleague at the Royal Free, Peter Kernoff, had a heart attack aged 47. “He suffered irreversible brain damage and although he lived for another 10 years, he was under 24-hour care.”
Doctors bear the responsibility for prescribing, says Parapia, “but we haven’t deliberately killed anybody here.”
The Inquiry is looking into the behaviour of some doctors, who have been accused of waiting years to give their patients HIV and hepatitis C diagnoses, testing them without their consent, offering no counselling, and forcing partners to have late-term abortions.
The disaster came of a catalogue of errors – from the failure to make Britain self-sufficient in plasma and blood products in the 1970s, to the prevarication by the Department of Health in identifying the growing crisis. Doctors and politicians were following the advice of the country’s leading haemophilia doctor and government advisor, Professor Arthur Bloom. He was warned by his American counterparts in March 1983 that it was only “a matter of time before you begin to see [haemophilia AIDS] cases in the United Kingdom.” But Bloom, who died in 1992, said that reports were “unduly alarmist,” and advised doctors to continue using Factor VIII from the US.
Lord Kenneth Clarke, who was health minister from 1982 to 1985 and one of the people advised by Bloom, said: “There is no conclusive evidence that AIDS is transmitted by blood products” – a line often repeated by politicians – at the end of 1983. In the following years, at least 1,243 people with haemophilia tested positive for HIV.
Des Collins, a lawyer who represents survivors and who appears on Bed of Lies, has said Bloom could have faced manslaughter charges. In France and Japan, doctors and politicians accused of the same were convicted, and some went to prison.
No one in Britain has ever accepted responsibility for over 1,500 deaths of people with haemophilia, and there has been no formal apology or compensation.
Lord Clarke told the Inquiry he “acted as swiftly and efficiently” as possible.
Parapia, who was mentored by Bloom, says the doctor “has been disgraced. I thought he was fantastic, then I found out he was using more American products and getting sponsorships from [pharma companies].”
There was lavish hospitality at international meetings, says Parapia, who retired 12 years ago. “Five-star hotels, flying first class, being taken out to clubs and restaurants… The cosier you were with pharma companies as the head of a haemophilia centre, the more sponsorship money you got,” he says. “It was an incredibly profitable market and the incentives were there to make sure their brand of Factor VIII was used.”
Ultimately, “it was an abuse of process where people directly got their pockets filled up,” says Tuddenham. Although the industry has been cleaned up a lot, he says companies still pay for research which gives them control over what findings make it into the public domain.
In 1986, Tuddenham left the Royal Free with a grant from the Medical Research Council to look into synthetic Factor VIII, which wouldn’t require human donations. Working in academia, rather than hospital, was Tuddenham’s attempt at “running away.” He was one of the researchers responsible for isolating and cloning the Factor VIII gene, leading to the synthetic treatments we use today.
Still, he remains haunted by what happened. “I gave infusions to children and adults that were undoubtedly infected. It’s always going to be with me.”
Both he and Parapia, now 72, have given evidence to the Infected Blood Inquiry. “I nearly broke down,” Parapia remembers. “It brought back all the people I knew so closely over the years and their families. They were my friends. It’s a personal tragedy for a doctor. It was incredibly traumatic and still is.”
Listen to the new series of Bed of Lies, a gripping six-part podcast laying bare the infected blood scandal, using the audio player at the top of this article or on Apple Podcasts, Spotify or your podcast app.