Terrence Higgins Trust is supporting those living with and affected by HIV as a result of the Contaminated Blood Scandal. During the 1970s and 1980s, blood products infected with HIV and hepatitis C were given to people living with haemophilia and other blood disorders. Thousands of lives were lost as a result and people continue to be impacted today.
In 2018, a public inquiry began into the Contaminated Blood Scandal. It is believed to have included the largest number of participants of any UK public inquiry to date.
Through these blog posts, we hope to amplify the experiences of a group of people who are less known but are very much part of UK HIV advocacy. In these blog posts, you may read language that is less used within the wider HIV community. In many ways, this illustrates how unique their experiences are and how important it is that they are represented.
This is David’s story
It was the early 1980s when David and his older brother first heard that some haemophiliacs in the US had received blood products infected with HIV and hepatitis C. He and others with haemophilia knew these products had been used in the UK too.
David describes his HIV diagnosis as something looming: 'There was this thing coming ... It's a bit like a disaster movie. It's the tsunami coming. Maybe it's gonna hit your beach, maybe it's not, but it's definitely out there.'
When David and his older brother first received their HIV diagnoses, they were told it meant good news. Early in the HIV epidemic, little was known about the virus and having HIV antibodies 'was interpreted as a good thing, because it probably meant I was immune to HIV.'
David was around 23 years old: 'It would be around ‘84? I would say it's hard to be more precise than that. I don't think it really matters.'
After the positive test, David thought he would 'come out the other side, protected,' believing the antibodies would keep him safe. However, some months passed, and David and his brother were 'called in for a further consultation with our medics, where they had to explain, actually, it was the reverse of that and being a positive test is actually a bad thing.'
David wasn’t completely shocked by the news because 'the original misinterpretation seemed a little fantastical at the time. So maybe there was always an undercurrent of disbelief.
'So I guess there wasn't really a shock of readjustment. It was just part of this very difficult period of my life where everything was changing.'
He and his brother found out at the same time. 'We went through this together, we went to the same Haemophilia Centre, we often had joint consultations with our doctors ... We went in together. We had that experience of the positivity test together … We were both told we were fine and both told we weren't fine in the same meeting, so I wasn't alone with it.
'My parents never asked me if I was HIV positive and I never told them,' David explains. As a family, they had been keeping up with the epidemic and its impact on people with haemophilia in the US, but that changed as things got closer to home.
Haemophilia is an inherited blood disorder and most people born with it are male. The brothers decided not to tell their parents about their HIV diagnoses. David believed they already felt responsible for 'our haemophilia and [HIV] was just too much to land that on them as well. The sense of guilt would have been too great. They would have seen it as their fault.'
They chose to tell only their partners: 'My brother was always adamant that it was a secret.' David felt that if one of them wanted to keep their diagnosis a secret, both had to. 'I didn't even have to think. It was a no brainer for me, it had to be secret.
'My attitude towards my status changed with my brother's death.'
David’s brother died many years ago. He had also been infected with hepatitis C, which developed into liver cancer. Afterwards, David shared his status with a small number of people close to him and started wearing the World AIDS Day red ribbon.
'I'm pleased I did it,' David says, reflecting on his role in the Infected Blood Inquiry. It gave him a space to talk 'about things publicly that I'd probably never talked about publicly before. Although [with] a veil of anonymity, you know, which was weird in itself.'
He decided to speak anonymously, as being open may have shocked the people in his life. 'I did it out of a sense of, you know, respecting the wishes of those who were close to me … I didn't like it, though. I'd rather have been me.'
When David was diagnosed, he wasn’t offered counselling but he was told he only had two years to live. This has had a lasting impact. 'From then on I saw my future in two-year chunks.'
For him it was a 'hamster-wheel that lasted two years. And that went on. I still have that mindset. I probably shouldn't, but it was actually realistic to have that mindset ‘til at least '98 ... For at least 10 or 12 years, I lived my life in little two-year cycles. I never looked beyond two years.'
Many two-year cycles have passed since his diagnosis. Now in his sixties, David is married with an adult child and slightly overfed cat. He built his career in education and is semi-retired, providing private tuition.
David has not only defied his prognosis but 'very few haemophiliacs have lived to this age historically ... There's quite a lot of literature being produced within haemophilia studies and specialisms about what it's like for haemophiliacs to get into late, middle and early old age.'
David describes himself as someone with 'a tendency to ruminate'. For him, 'there's a lot of regret, a lot of guilt. A lot of survivor guilt.'
He draws many parallels between early reactions to HIV and the COVID-19 pandemic and how people were treated with fear and rejection. He believes that language is important and terms like ‘fighting’ an illness aren’t helpful.
'Fortunately, we're not called people who have "conflict with HIV" or "wrestling with HIV". We just live with it. It's a permanent companion. The virus is inside us … So to the idea that, you know, you're combatting it, I think no. I'm not fighting HIV, I just live with it. I've lived with it for 36 years.
'We're neighbours, and sometimes [HIV] has been a very annoying neighbour, you know, but I can't move! It shows no sign of relocating, so we just have to get along with it ... That's just the way I see it. Well, you know, we're in the neighbourhood. We're boys in the ‘hood, me and my virus, and that's it.'
Bakita Kasadha is a writer, researcher and activist living with HIV.