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 Martin Beard’s story
Martin Beard and his mum were abruptly told about his HIV status when he was 17 years old. It was 1 September 1986. 'You don't forget days like that,' Martin explains, as his two Rottweilers bark protectively in the background.
Martin and his mum didn’t have a chance to take a seat before they were told: 'Me and me mum stood there in the doorway, and [the doctor] just says, "Hello, I see you're HIV positive".'
Initially, Martin thought, 'Oh, well, that's life, because I didn't really know the full implications.' That was until the doctor told him he had two years to live. The 52-year-old remembers how he 'went numb… I kind of went into shock. And I cannot remember another word that he said to me that day.'
Martin had been in the care of Birmingham Children’s Hospital since he was six months old because of his haemophilia. In 1989, Martin was sent a letter that showed the hospital had known about his HIV status since 1983, at least three years before he was told.
In 2004, Martin got hold of his medical records and discovered a letter of communication between Birmingham Children's Hospital and Leicester Royal Infirmary. The children’s hospital had asked Leicester Royal Infirmary not to tell Martin about his status. Martin had visited Leicester Hospital in 1985 whilst working in the city.
During the Infected Blood Inquiry, this was raised with Birmingham Children's Hospital. The hospital claimed they intended to tell Martin when he transferred to adult services. However, they didn’t explain why they hadn’t told his mother in the meantime.
'As far as I'm concerned, they had a duty to inform... because I was working with other people, and sometimes I was doing dangerous jobs.'
When HIV was first discovered, it was called HTLV-3 and very little was known about the virus, including how it was transmitted. As knowledge of the virus grew in the late 1980s, so did public fear. Around the same time, Martin’s 19th birthday came and went – the birthday the doctor said would be his last. At that time, he was in good health. The virus wasn’t his impediment; HIV stigma and discrimination were the barriers.
Following his birthday, Martin began working at an electronics factory. The company had known about his status before he started there but he was dismissed when other colleagues found out three months into his role. His boss told Martin that some of Martin’s colleagues had threatened to quit if he wasn’t fired.
As a teen, Martin played pool matches in a pub a few miles away from his home. Martin isn’t sure how they found out about his HIV status but he was banned when they did. The pub didn’t phone him to tell him. 'They could have phoned me up. They knew my number,' Martin explains. 'Instead, they publicly humiliated me in front of everybody… When I came out of there and came home, obviously, I was lower than a snake's belly. I just felt so empty.'
As a result, Martin was on the front page of the local newspaper at just 19 years old. When another local pub found out what had happened, they invited him to join their pool team instead. He joined the new pub but 'I had to go into that pub that banned me, at some point to play matches. And psychologically, you know, you’re always playing with [that] playing on your mind.
'I basically just carried on. My main issue has always been and will always be my haemophilia.' He explains that haemophilia and being born blind in one eye are 'more of a threat to me than HIV.'
His health has had a big impact on his life decisions: 'I've had to wrestle with this decision over the years, [do] I want children and that kind of thing. And to be honest, even before HIV came along [it’s] a no for me because I've gone through all the pain and I still go through the pain. And I don't want, I wouldn't want, them going through it.'
Martin laughs. 'I've got four nephews and a niece and they're a handful.'
Throughout the years, Martin has known a number of people with haemophilia, with HIV and with both health conditions. This includes his cousin who had haemophilia and HIV and died a number of years ago. 'When you see somebody pass away from a condition that you yourself have got, that brings it home.
'He was quite angry and aggressive.' Martin recalls how differently he and his cousin dealt with their diagnosis. Martin had been 'very open about my condition... My attitude was, okay, this happened, but if I can try and educate people.'
Being open has led to Martin sharing his story with a range of people, from a stranger in a chip shop to University of Oxford medical students to the BBC. In one media interview, Martin spoke about the side effects of HIV medication. One side effect associated with older medication was lipodystrophy, a condition that changes the way the body uses and stores fat. After the interview, 'I started getting messages on Facebook from [people] all around the world. And from people thanking me for highlighting some of the problems that you can have with medication.'
In 2001, Martin was admitted to Churchill Hospital because of another side effect of HIV treatment. During that time, a doctor and medical students visited him. Martin recalls the doctor asking the students how long they expected him to live. One of the students replied, 'Well if he looks after himself, he should live a normal lifespan,' and the consultant said, 'Yes, exactly.' When Martin heard the doctor confirm this, 'a light bulb went on... I thought, yeah, that was a significant moment. That's like a real big kick, a real big positive moment.
'These are light-hearted moments in what can be sometimes a very dark journey.'
This journey led him to give evidence at the Contaminated Blood Scandal inquiry in 2019. For Martin, 'one of the biggest things, I hope to come out of this is that something like this never happens again, and can never happen again… It’s absolutely decimated communities, you know, and it could have so easily been avoided.'
Bakita Kasadha is a writer, researcher and activist living with HIV.