Who did the UK's infected blood scandal affect?

When did they notice something was wrong?
28 May 2024

Interview with 

Andy Evans & Joan Edgington

BLOOD TEST

Taking a blood sample from a vein for blood testing

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There was very strong evidence - both from America but also here in the UK - that the blood products that were being used were putting people at risk from both viruses we did know about at that time, but also ones we hadn’t discovered yet including HIV. So, what happened to some of the people who were infected with these blood products in the 1970s and 1980s? We put in a call to one of them…

Andy - Hi, I'm Andy Evans. I live in Worcester and I'm a haemophiliac who is infected at the age of five with HIV and hepatitis c. I developed full blown AIDS when I was 16 and went through four years of not having any treatment for the actual HIV and the AIDS, just firefighting the symptoms and the illnesses that came with that syndrome.

Chris - How old are you now, Andy?

Andy - I'm 47 now.

Chris - So when you were infected at the age of five, how did you find out that something was wrong?

Andy - I didn't know myself until I was 13 and I was told by my parents who in turn were told by my consultant. And the reason my parents told me was because my blood tests were showing that there were signs that HIV was impacting upon my immune system. So they use a count called CD4. They measure that immune receptor to measure what your immune system is doing in terms of HIV. And that was becoming dangerously low. And because they had to put me onto AZT, which was the only drug available at the time, they thought it would be <laugh> probably a good idea to let me know about that.

Chris - How did you manage to stay alive? You've bucked the trend because many people in your position have not been as lucky.

Andy - That's right. According to the figures that we have, around 1,250 people from the haemophilia community alone were infected with HIV and less than 200, probably about 175, are left alive now. So in that sense, I'm extremely lucky. I don't know why I have been selected out of all of those to be one of the survivors. And I ask myself that on a regular basis. I've been HIV positive now for 42 years. That's 90% of my life. And yeah, it's, it's a very strange thing to have to contemplate.

Chris - What would the alternative be if you hadn't had the treatment that you had, which unfortunately infected you, what would the outcome for your haemophilia have been?

Andy - Fortunately, even though I'm a severe haemophiliac, I've never really bled very much. I have been on haemophilia treatment for all of my life, but I've never had it in a prophylactic way. Really, it's only ever been on demand and I've been told that I use a lot less Factor VIII than the average severe haemophiliac. My joints are in good condition, which is not something that can be said for a lot of haemophiliacs of my age. I have to say that really, had I not received that Factor VIII at that time, I don't think it would've had a massive impact on my haemophilia prognosis.

Chris - Did you know that you'd been infected? As in, did anything happen to your health that your parents in retrospect think 'Yeah, there was this time when Andy suddenly went off color and had a whole bunch of symptoms and looking back, that's probably when it happened.'

Andy - We think that maybe before I was infected with the HIV, there was a period where I was jaundiced. We think that was possibly down to hepatitis B, which I self cleared luckily. But obviously my parents were on the lookout. My dad had read in the New Scientist that there may be HIV coming through blood products from the United States. And so he actually told me at one point, please look after yourself so you don't get a bleed. We don't know what's in this blood. But I don't remember becoming ill and my parents have never told me about it either. So it was not really until they were told about it that it was confirmed that I had got HIV through it.

Chris - And how did they cope?

Andy - My parents were pretty good. They tried to shield me from their own worries as much as possible, but of course as my illness progressed they were impacted financially. My mum had to give up work as a teacher to look after me. She spent most of the time in hospital with me at the Children's hospital while I was in for those four years. My dad still worked, but he would come visit me at all hours of the day and night. My sister, who was younger by four years than me, was very much left to bring herself up and that's carried consequences into her adult life as well. It really has impacted the entire family around me, and I know that's the same for a lot of people involved in this scandal as well.

Chris - And what about you personally? What was it like being a teenager? Seeing the world through a teenager's eyes, but also knowing I have AIDS, that this may be life shortening, probably will for me. You didn't realise that science was going to ride to your rescue. So what was going through your mind?

Andy - I think I'd come to terms fairly quickly with the fact that I was going to have a shortened life. But it's strange because when you become a long-term patient like that and you start suffering opportunistic infections and then worse, fever starts climbing to extremely high levels. I mean, I was blue-lighted into the hospital every couple of weeks really for one infection to the next. I mean, you adapt to it. And all I could think about during that time was trying to reach the next day and what I'd have to do to survive, whether it be putting a nasogastric tube down my nose into my throat and into my stomach to make sure that I didn't lose too much weight, whatever I had to do. It was just a case of firefighting for those four years. And that was the only task that I had in front of me. And so I got to it.

Andy Evans from the Tainted Blood campaign. And luckily Andy managed to hang on for long enough for the modern combination drug regimens we now have for HIV to become available, which suppressed the virus and restored him to full health, which he’s enjoyed since. But , this is actually a story of two blood scandals. The second of which saw people contract viruses - predominantly infection with a previously undiscovered hepatitis virus called hepatitis C - following blood transfusions. But this too was avoidable because the lessons emerging from the people with haemophilia should have sounded the alarm loud and clear much sooner to policymakers. I’ve been speaking with Joan Edgington about what happened to her after she became ill following a routine surgery that required a blood transfusion in 1991…

Joan - I was in my thirties. I was a single parent of two girls, and I had a full-time job as a youth worker. So lots of demands, but still, you know, had been very <laugh> fit and expected to return to that level. And then it was in 1994, I had a letter from the transfusion service inviting me in for a screening blood test connected with a transfusion I'd had. So I went and I think in a way I just assumed it was a sort of general check then waited for the results and was invited back to the hospital. A gentleman in a white coat took me into an anteroom, sat me down and said, 'we do have to confirm that you have Hepatitis C, and it was from a contaminated blood sample.'

Chris - And how did you react when you were given this news?

Joan - It was a very straightforward, not unkind, but a very straightforward businesslike 'this is a bloodborne virus. Do not share toothbrushes, do not share razors, and be careful of blood spills,' which for women, it's a harder thing to manage. I guess it was over sort of 10, 15 minute chat and I left and I remember sitting in the car park for a good half hour just thinking, what on Earth does this mean? And, in my story, I'm very fortunate that I had a very kind, supportive GP. And I do remember eventually making an appointment by which time I had got round to thinking a bit more rationally about it. And I just had a whole load of questions. And he was very upfront with me and said, 'I don't know, but I will help you find the answers.' And it very quickly became evident that this virus had the capacity to kill people. And I do remember, as I say, as a single parent, just thinking that just mustn't happen to me. My mother had died when I was in my early twenties, and I didn't want that sort of thing to happen to my daughters.

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