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Tainted Blood

Mark Ward acknowledges the devastating effect HIV/ AIDS is having across the globe but implores us to also remember the UK haemophilia community

Every December our thoughts focus on the misery, suffering and horrors caused by HIV. The media highlights sufferers throughout Africa and the gay community. Whilst acknowledging fully the dreadful suffering that these communities have faced, we at Tainted Blood would like to highlight another, smaller, community that is often overlooked: more than 800 haemophiliacs have already died as a result of receiving blood products contaminated with HIV, and many others live with the virus. We remember the widows still searching for answers. We think about the hundreds of children orphaned. We work to raise awareness of the battles faced by terrified haemophiliacs still fighting for justice in Britain whilst surviving each day with multiple viruses.

Whether you’re black, white, gay or heterosexual, life is precious. Families and communities have been torn apart by fear and ignorance. Many feel the cruel hand of prejudice and those not infected have been attacked and labelled. Their lives, already so difficult as haemophiliacs, were often rendered unbearable following the knowledge that the blood products used to treat them had left them with a terrible legacy.

World AIDS Day marks different milestones for different people. For many haemophiliacs it marks hope for the future as another year passes. With daily advances in treatment and a much better understanding of this killer we are able to look further ahead than many of us ever thought possible. It is our duty to ensure we never forget those who have been taken away from us, as for many others it marks another year without a loved one - a husband, a partner, a much-loved dad or son.

A Government has the power to change things. We know that it could very easily alleviate much of the day-to-day suffering that has been inflicted on this relatively tiny group of vulnerable people, yet so far it has chosen not to act. Please join us in hoping that this World Aids Day will mark a turning point for the haemophilia community.

The Tainted Blood committee is made up from those affected and infected by haemophilia and I am glad to say we are now being more widely recognised from both within and outside of the haemophilia community. We have tried to have at least one committee member attending every hearing of Lord Archer’s independent public inquiry at Westminster to give both personal support and pass the information on to our members or those that monitor the website. We will also be officially represented at the British Library to mark the end of two projects: the ‘Haemophilia and HIV Life History Project’ and ‘HIV in the Family Project’ www.livingstories.org.uk
Finally we would like to let Darren, one of the members of TaintedBlood, to have the last word with his e-mail signature. It expresses all of our thoughts. Take care and stay safe.

“This isn’t just the way to be a martyr I can’t, walk alone any longer, I fight, for the ones that can’t fight, And if I lose, at least I tried....”
Lyrics by Slipknot +

By Mark Ward of the Tainted Blood team.
www.taintedblood.info

Ben’s story

In 1985, 1246 people with haemophilia in the UK were diagnosed with HIV. Of these, over 800 people have died.
There are extraordinary stories to tell from the individuals and families affected.

Livingstories.org is an audio website where you can hear their stories, gain an insight into their experiences and learn the facts behind their history. The full set of interviews with over 60 people recorded by the Haemophilia and HIV Life History project are available at the British Library Sound Archive.

Here we have an extract from Ben’s story...

Finding out: It was night time and mum and dad came to the hospital with my sister. They were all sitting in this little room and someone sent for me and I didn’t want to go. I knew it was something that would hurt all of us. I just knew that. I didn’t know much about HIV and AIDS. I knew it was bad, I knew it was really bad. I knew you could die from it. They were all in the little room and they wanted to talk to me and I didn’t want to talk to them. And this was when my mind started to get incredibly screwed up. From that day on, I was a mess...

Expecting to die: I used to ask my doctor, I said to him, ‘What’s my life expectancy? What can you give me?’ And he said, “I can’t really do that...” I asked him this when I was about eighteen or nineteen. I said to him, “I really just want to get to twenty-one, I want to be twenty-one. After that I don’t feel like it matters too much, I just want to get to there.’ And the look on his face was like: ‘Oh...you know...I can’t guarantee any of that for you.’

Secrets and stigma: At the beginning, I chose not to tell anyone. I thought, “How can I tell someone? I can’t even get control of it in my own head.” But it was getting worse and worse, you know, I really needed to talk to someone. And I suppose now I’m at least fourteen or fifteen years old. I had this thing where I couldn’t just tell a teacher and go home. I couldn’t say: ‘I don’t feel well.’ I couldn’t do that.

An unexpected future: I went to see him one day for my next check-up and he said: “Your viral load is undetectable and your CD Fours are higher.’ I didn’t even take on board how good that was - not for months! I was just so used to being the way I was. And now! I should have been out having a party that night. I should have been out - that was amazing to hear him say that. Since I got ill when I was twelve, I’d had really high viral load, hardly any CD Four cell count at all...I suppose if you’ve been ill for that amount of years, though, and from an early time in your life, it’s going to take a while to readjust and think: “OK - now I’m healthy.”
For more information see: www.haemophilia.org.uk

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