by Mark Ward
A civilised society is judged on how it treats its most vulnerable, and to move forward, it must never forget the past.
How can you plan a life when you are told it will be over before it truly begins?
Well, you see the world through very different eyes, that’s for sure, and you do everything in your power to make your dreams come true.
The UK has recently witnessed the failures of consecutive governments in bringing justice to those facing terrible tragedies. This could not be more significant to us in the bleeding disorder community, who have witnessed an entire generation torn apart through the use of contaminated blood products.
Back in the 1970s, I was diagnosed with severe haemophilia. A rare genetic blood disorder which prevents the body’s natural blood clotting protein, Factor VIII, from being produced. This means internal bleeding occurs with everyday bumps, and nosebleeds wouldn’t stop.
Unfortunately, during the 1970s and 80s, pharmaceutical companies focused on profits and did not care where they sourced the blood from to manufacture the blood products required to treat my condition. In the USA, they paid vulnerable and desperate people to sell their blood; these were known as “skid row donors”. Another regular practice would be to take mobile blood transfusion trucks in cities like San Francisco and New York, targeting gay men for their blood. All the blood harvested from the various sources was mixed together in giant vats to be processed. The dangers of viruses, such as hepatitis, were known, and governments, including the United Kingdom, ignored the warnings to save a few pounds.
During this period, there were approximately 5000 haemophiliacs in the UK, and almost all were infected, used for unethical research and written off by society. I was given my first injection of the 100% infectious Factor VIII as a small boy and by the age of 10, I had been infected with various pathogens, multiple strains of hepatitis viruses including A, B, C, and G. Then at the age of 12, I was reinfected, almost daily with treatment contaminated with HIV, the virus that leads to AIDS, which I was cruelly informed about at the age of 14. I was also told “there are no gay haemophiliacs” somehow blaming my HIV status.
Every government since Margaret Thatcher has refused us justice, which meant grieving and dying people have been forced to campaign ever since.
It’s not all been darkness, grief and pain. I have made wonderful friends who have become more like family. I had the love of my relatives, who accepted me for who I was. I even made my dreams come true when I joined British Airways in 1985, despite being told they wouldn’t look at someone like me.
It was during the 1990s when I discovered there was more to life than aeroplanes, like clubs and boys. I worked on the door at G-A-Y, which provided both of those things every Saturday night, and when I was in drag, the nights became even more fun. I visited distant exotic places, joined the “mile high club” and spent many memorable nights in Gran Canaria. I worked and partied hard, loving every second.
In 2017, the former Prime Minister, Theresa May, announced the establishment of the Infected Blood Public Inquiry and I became a core participant.
Having been in counselling since 2006 for complex PTSD and phobic anxiety disorder, it’s been suggested that I write a book. Then we had the Covid pandemic and the world stopped. The threat to my life from another virus took me back to the 80s and the fear of HIV. In case I did not live, I wanted to tell people, in my words, what it has been like living through the worst treatment disaster in the history of the NHS. I wanted to tell them what it was like campaigning whilst desperately trying to find happiness and experience some kind of a life. I used my witness statements to give people a glimpse into my “Bleeding Fabulous” world.
Working with my publishers at Inkandescent, Bleeding Fabulous is out now available to order.
