How did the UK's blood scandal start?
Interview with
Between 1970 and the early 1990s, 30,000 people in the UK were infected with viruses such as Hepatitis B, Hepatitis C, and HIV after being given contaminated blood products and transfusions. These infections affected two main groups: those with rare blood clotting disorders - such as haemophilia - and people who had blood transfusions after childbirth, accidents and during medical treatment.
A long-awaited report into the scandal - which has been carried out by Sir Brian Langstaff - has just been published, and it doesn’t pull any punches. The inquiry has described the scale of the scandal as "horrifying" and Sir Brian added that "the infections happened because those in authority - doctors, the blood services and successive governments - did not put patient safety first."
How did what’s been called the ‘worst treatment disaster in the history of the NHS’ begin? Cara McGoogan is an investigative journalist and author of The Poison Line: Life and Death in the Infected Blood Scandal…
Cara - So at the heart of the infected blood scandal is people with haemophilia. This is a genetic bleeding disorder that often passes from mothers to sons. And what that means is people with haemophilia don't have a protein in their blood that they need to have a clot. So if you bash your arm, your blood will continue to pool into the space swelling and becoming very painful, because you can't form the sort of mesh needed to stop the bleeding. A lot of people think that might be kind of an external bleed, like if you cut yourself, but that was often the less common version of bleeds. And so in the late 60s, this miracle treatment for haemophilia became available called Factor VIII, and it was made from human plasma and it essentially replaced the protein that people with haemophilia needed in order to be able to live more normal lives, to be active and to be able to kind of go out with friends, run around the street and kick a football without the risk that if the football hits them, they're going to end up with a a very large painful injury as a result.
Chris - Indeed, I went to school with a young man who had haemophilia and he was not allowed initially to take part in many of the activities. It was a pretty isolating experience for him. But by the time we were leaving our first little person's school, this had come in and he was very much able to participate. So in some respects, being given these treatments was quite liberating for people who had haemophilia. I suppose that made it quite attractive as a proposition for doctors to give it to patients to have it.
Cara - Yeah, it was really seen as a sort of life-changing thing. Young kids spent their childhoods laid up on the sofa when they had a bleed. There was this older treatment called cryoprecipitate and you had to wait for it to defrost over hours, it was frozen, and then transfused very slowly and then took effect. And it had more bits of plasma in it than just the Factor VIII. So it took more of it to have as much of a result. So yeah, like your friend with Factor VIII, it was a white powder made by pharmaceutical companies and the NHS Blood Products laboratory. You mixed it with sterile water and injected it and you're almost ready to go again immediately. So, you know, people have told me that they would put it in their backpack and go mountain climbing, like it absolutely changed their lives.
Chris - So with that in mind, was this something that doctors began to actively push on patients because presumably their motives were good ones, they wanted their patients to live longer and have a better health span as well. Fewer debilitating bleeds, more activity effectively, better mental health as well.
Cara - Yeah, it was definitely pitched to patients in a big way. Doctors across the UK were prescribing this from 1973 when it was licensed, and they started to look at new ways to treat them as well. So not just when they had a bleed, which is how they used to have treated them, but also prophylactically to prevent bleeds. So rather than just when you'd had one, you would actually kind of inject a few times a week or a couple of times a month and keep your levels of Factor VIII higher so you could start to see a situation where you might not have those bleeds. And what that meant is we needed more and more Factor VIII in the UK as more patients were kind of brought onto this treatment and started injecting very regularly.
Chris - So where were they getting it from?
Cara - This is where the problems begin. We weren't producing enough of our own Factor VIII in the UK because here you can only donate plasma twice a month and it's a free service. You know, like you go and give blood, you're doing it altruistically to help people. In America they could donate twice a week and they were paid to do it. So America became this kind of centre of the plasma industry, people called it the OPEC of plasma. And they were making Factor VIII to feed the world essentially. So we were importing about 50% of our Factor VIII from America to meet the needs of our patients.
Chris - And who were the donors?
Cara - So the pharmaceutical companies were setting up plasma centres in prisons, in the centre of impoverished areas of American cities. They had mobile trucks that were known to go and park up outside nightclubs in gay neighbourhoods. They were looking for people who were desperately in need of cash and so would be willing to sell their plasma twice a week to fund their lifestyles, whether that's to be able to buy some food or some alcohol. What you found was these people were more at risk of bloodborne viruses. That might have been because of intravenous drug use, sex workers in prisons. You also had people making penitentiary tattoos, which is where you'd sort of get a biro and a mechanism and give someone a tattoo. But you know, they'd use the same equipment across their friends. And so bloodborne viruses were just rife.
Chris - So we've got a situation emerging here where you have an organisation or organisations who are paying people in whom there is a higher prevalence we now know, but perhaps they began to get some insights at the time of bloodborne viruses because of various practices that were prevalent in those groups. What are they doing with those samples? Are they testing the people to make sure they're safe? And how are they then processing the samples to turn them into what they export from America to a range of countries, including ours?
Cara - Yeah, this is quite shocking. So it was deemed not cost effective and viable to be testing these donations for Hepatitis B, which was one of the bloodborne viruses that was known about at the time. They didn't want to stigmatise people, they didn't want to put donors off, and they also didn't want to make it too costly. And so there weren't tests for hepatitis B being done on this plasma. And what the companies did was they took these donations, they poured them into these massive stainless steel vats, and they mixed it together. And then they took off the fraction, the portion of plasma that contained just the Factor VIII, and made this treatment, this medical treatment. But they pulled tens of thousands of donations together and you only needed one person to have a blood borne virus to contaminate the whole batch. So what they were doing was really amplifying the risk of the blood products for patients.
Chris - And that was what was being bought by a number of countries, including the UK for treatment of their people with haemophilia.
Cara - Exactly. And this was known at the time. In the mid 1970s, there was an investigative documentary called World In Action broadcast in the UK. And it showed donors in America giving plasma who had been infected with hepatitis themselves. And so there were warnings here that this imported product was highly likely to give patients illnesses. And then you see school children in the UK turning yellow with jaundice after being treated with Factor VIII.
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