Back in the dark ages of the 1970s I was diagnosed with severe haemophilia.
It’s a rare genetic blood disorder which prevents the body’s natural blood clotting protein, Factor VIII, from being produced.
We all suffer bumps and cuts sometimes in every day life. If you are haemophiliac, the bleeding does not stop.
This can be life-threatening in some situations. The treatment used to control my bleeding episodes used products made from whole blood.
Unfortunately, during the 1970s and 80s the mega rich pharmaceutical companies did not care where they got the blood from.
In the USA they paid vulnerable and desperate people to sell their blood. Drug addicts, prostitutes and prisoners were used.
They would even wait in mobile blood transfusion trucks outside gay saunas or bath houses, in cities like San Francisco and New York, then offer the guys money to sell their blood.
There were even cases of using blood from dead bodies.
All the blood gathered from the various sources was mixed together in huge vats and processed to separate it into different components, like Factor VIII.
This would be freeze-dried, bottled and shipped around the world and then injected straight into the veins of babies, children, teenagers, anybody.
The dangers of viruses, such as hepatitis, were known and governments, including the United Kingdom, were warned of these infection risks. But even warnings from the World Health Organization were ignored.
At that time, the late 1970s and early 1980s, there were approximately 5,000 haemophiliacs in the UK.
I was told I’d be dead by 18
I was given my first injection of the deadly contaminated Factor VIII in the middle of the night, against my parents’ wishes, in 1976.
By the age of 10, I had been infected with millions of pathogens, multiple strains of various contaminants including hepatitis viruses A, B, C, and G.
Then at the age of 12, I was infected, almost on a daily basis with treatment contaminated with HIV, the virus that leads to AIDS.
I was told at the age of 14, I probably would not leave school, certainly not living long enough to see my 18th birthday.
The entire world was full of hatred towards anyone with HIV, regardless of their infection circumstances.
Across the USA families feared for their lives, little boys were treated worse than lepers, even having their homes set on fire.
Ryan White, an infected American haemophiliac, became famous for standing up to his abusers, but sadly lost his fight for life aged just 18.
The UK, was no different. Many lives were lost due to the stigma of AIDS or the ‘Gay Plague’ as the British media named it.
I’d like you to imagine what it was like growing up with all that terror, hatred, stigma and discrimination. Still being injected with the deadly treatment. Friends dying, used for research by doctors like laboratory rats.
Then on top of that realizing you are not just different from ‘normal’ people because of your disability but you are also gay.
That’s what happened to me.
And after more than 2,000 haemophiliacs died, with thousands more ‘super-infected’, homosexuality is still a taboo subject in the haemophilia world today.
In most countries, including the UK, no information or support is offered to people with a bleeding disorder who identify as LGBTI.
The CEO of one national haemophilia society in Europe told me: ‘We have not identified any gay haemophiliacs, therefore we do not need to provide information.’
The World Federation of Hemophilia has just one reference to ‘gay’ issues on its website. It’s a single article focusing on the ban on gay men donating blood.
This year’s WFH Congress starts in Orlando, Florida today (24 July). The site of the horrific attack in the Pulse nightclub. Sadly no mention of the LGBTI community has been made by the WFH.
But together, we can all beat intolerance, fear and hate.
I believe the WFH and I can swiftly implement an acceptable timeline for education and sexual health information for the LBGTI bleeding disorder community.
The threat from viruses like hepatitis and HIV has not gone away from the world or the bleeding disorder community. It has simply shifted to a different infection route – sex.
Are you Haemosexual?
As this subject is seen to be ‘too explicit’ by some, I am now reaching out to those who are at risk by setting up my own project.
Haemosexual has been designed to offer practical advice and information, along with providing education to patients, medical professionals and other organizations.
We want vulnerable people to get proper protection – and that means communicating with them.
Safety information and support on sexual health is much more effective if it is provided in a way people feel comfortable with.
Speaking to likeminded makes it easier to talk openly about your lives, body, physical and mental health.
Haemosexual will stand for equality, education and better healthcare for everyone with a bleeding disorder no matter what their sexual orientation is.
It is in memory of all my friends.
I hope it will also highlight how a small, vulnerable group of disabled people were so cruelly treated by those who inflicted these death sentences and compounded the suffering for more than 40 years.
I cannot stand by and watch another generation, condemned to suffer with the same homophobic and ignorant attitudes.