Soldato
I was 14 months old when my Haematologist sent me to see Charles Rizza at the Oxford Haemophilia Centre (a key player in the unethical experimentation on infants). I have a letter offering me up as a "PUP" ("Previously Uninfected Patient" or "virgin Haemophiliac"). Within weeks of that visit, I was put on huge doses of commercial Factor 8 on a prophylactic regime (up to 3,000 units or 6x 20ml syringes), at varying frequency - often every other day.
I would have been infected with Hep-C on the very first dose, then perpetually re-infected with every syringe until the Factor was eventually heat-treated, some time after 1987.
I lived through the AIDS epidemic, narrowly missing a batch that was meant for me, but given to a lad I grew up with who had more urgent need. He didn't make it to his 13th birthday.
My life was hell. Ostracised and isolated at the boarding school I won a Naval scholarship too (the alternative choice was the infamous Treloars), I was forced to eat meals separately, with my plate & cutlery marked with red electrical tape, so they could be washed, in bleach each time.
My school uniform, clothing & bedding was also washed separately from the other pupils', on a boil setting with bleach. Within the first week of each term, my new uniform would be completely ruined, singling me out from my peers.
The bullying was relentless. Parents of other boys at my school demanded the "AIDS Child" be expelled or their child kept out of my classes and dormitory.
After two years of this, I "failed" the scholarship exam (despite answering each question correctly) and my parents couldn't afford the full £18k fees, so they put me in a mainstream state school.
When I was 12 (in 1993), we were called in by the Haematologist to discuss "some results". I was told my most recent HIV test was clear (I'd been tested every 6 months since 1983), but that I'd also tested positive for Hepatitis C.
It was referred to as a "very mild disease" and that the worst I would experience were some "flu-like symptoms". We were given a Haemophilia Society pamphlet and sent on our way.
I had no idea what the news meant, but we were advised not to discuss the results with anyone else, so as not to cause a panic.
When I was 13, I had to inject myself at school for a bleed in my knee. A few of my classmates saw the packaging for my Factor 8, with Hazard labels all over it and the bright yellow sharps bin for safely disposing my butterfly needles, which had my name printed in huge letters and taped to it, along with "DANGER - HEPATITIS & AIDS INFECTION RISK!"
The school doctor started getting letters from other parents, worried about the risk to their children. The bullying and ostracism started back in earnest.
In 1994, just before Christmas, I tried to hang myself. My haematologist called me a "silly boy" and joked about the irony that my suicide attempt only resulted in need more of the treatment I tried to escape. He roared with laughter and so did the nurse.
When I chose my GCSE options, I aimed for subjects that would help me get into uni to study medicine. I wanted to become a doctor, to treat children better than I'd been treated.
My haematologist urged me very sternly to consider another career path; one which was less risky to others around me - "How would you feel if you infected one of your patients?" The irony was not lost on me, but I listened (as always) to the patronising, powerful man I was supposed to respect and admire.
I studied Optometry.
I hated it, but it paid well, especially when I did locum work between yacht racing seasons. I was able to go back to uni to read Law, whilst working two days a week for a supermarket opticians that rarely booked a full clinic. I spent time between appointments reading my textbooks.
In 2005 I graduated, then joined a global insurance company to head up their marine section, specialising in Racing Risks - I was able to make use of my network in the Yacht racing world and got sent all over the world to capture new business and maintain client relations. It was my dream job.
15 months later, on a rare day off in 2006, I had a car crash that caused a Traumatic Brain Injury and triggered a degenerative disc disease in my lower spine, made worse by my bleeding disorder and very likely from the 15 years of chronic Hep-C symptoms.
Despite multiple surgeries and years of graduated return to work schemes, the company had to make the decision to medically retire me. I had to sell the house I'd bought to renovate with my girlfriend's dad, as it was 3 floors and the exact opposite of what a new wheelchair user needed.
I became incredibly depressed and angry. My TBI and the complex PTSD I hadn't yet discovered made things much worse.
I spiraled and made some incredibly bad choices for myself and others around me.
I blew through my modest savings in about a year and became homeless. Thanks to a family friend, I didn't have to sleep rough, but my situation was unsustainable.
My MP helped support a priority application for social housing and I was eventually offered a flat in a high-rise, in a notoriously bad part of the city. It didn't matter and I started to try and put my life back together.
In the space of two years, I'd gone from a jet-set professional with a house "on top of the hill", to a wheelchair-dependant council tenant on benefits.
I started advocating online to keep from dying of boredom, helping with consumer rights, civil & domestic disputes and banking issues, eventually stumbling across a forum of people with bleeding disorders like mine, who'd been given HIV, Hepatitis (B, C & D) and potentially vCJD.
I learned about the many campaigns to fight for recognition of the harm done to us. I read about the Archer & Penrose whitewashes and looked into the growing pressure to start a class action suit in the High Court.
In 2017, pretty much because our court case was pending, and under pressure from the DUP, Theresa May announced the Public Inquiry into Infected Blood... The cynics in our community knew this was yet another attempt to kick the can down the road, but we met the chairman with an open mind and a willingness to engage.
Sir Brian Langstaff gave us all hope that we might finally be heard.
6½ years later, we finally heard a politician apologised, unequivocally, for the massive harms done to us and the gross conspiracy to hide it, for nearly 5 decades.
We've lost hundreds in those six years - roughly two every week. People I know, some I loved.
Today's announcement by John Glen of the Infected Blood Compensation Authority is another step towards justice and some closure for those of us Infected & Affected by this scandal.
I would have been infected with Hep-C on the very first dose, then perpetually re-infected with every syringe until the Factor was eventually heat-treated, some time after 1987.
I lived through the AIDS epidemic, narrowly missing a batch that was meant for me, but given to a lad I grew up with who had more urgent need. He didn't make it to his 13th birthday.
My life was hell. Ostracised and isolated at the boarding school I won a Naval scholarship too (the alternative choice was the infamous Treloars), I was forced to eat meals separately, with my plate & cutlery marked with red electrical tape, so they could be washed, in bleach each time.
My school uniform, clothing & bedding was also washed separately from the other pupils', on a boil setting with bleach. Within the first week of each term, my new uniform would be completely ruined, singling me out from my peers.
The bullying was relentless. Parents of other boys at my school demanded the "AIDS Child" be expelled or their child kept out of my classes and dormitory.
After two years of this, I "failed" the scholarship exam (despite answering each question correctly) and my parents couldn't afford the full £18k fees, so they put me in a mainstream state school.
When I was 12 (in 1993), we were called in by the Haematologist to discuss "some results". I was told my most recent HIV test was clear (I'd been tested every 6 months since 1983), but that I'd also tested positive for Hepatitis C.
It was referred to as a "very mild disease" and that the worst I would experience were some "flu-like symptoms". We were given a Haemophilia Society pamphlet and sent on our way.
I had no idea what the news meant, but we were advised not to discuss the results with anyone else, so as not to cause a panic.
When I was 13, I had to inject myself at school for a bleed in my knee. A few of my classmates saw the packaging for my Factor 8, with Hazard labels all over it and the bright yellow sharps bin for safely disposing my butterfly needles, which had my name printed in huge letters and taped to it, along with "DANGER - HEPATITIS & AIDS INFECTION RISK!"
The school doctor started getting letters from other parents, worried about the risk to their children. The bullying and ostracism started back in earnest.
In 1994, just before Christmas, I tried to hang myself. My haematologist called me a "silly boy" and joked about the irony that my suicide attempt only resulted in need more of the treatment I tried to escape. He roared with laughter and so did the nurse.
When I chose my GCSE options, I aimed for subjects that would help me get into uni to study medicine. I wanted to become a doctor, to treat children better than I'd been treated.
My haematologist urged me very sternly to consider another career path; one which was less risky to others around me - "How would you feel if you infected one of your patients?" The irony was not lost on me, but I listened (as always) to the patronising, powerful man I was supposed to respect and admire.
I studied Optometry.
I hated it, but it paid well, especially when I did locum work between yacht racing seasons. I was able to go back to uni to read Law, whilst working two days a week for a supermarket opticians that rarely booked a full clinic. I spent time between appointments reading my textbooks.
In 2005 I graduated, then joined a global insurance company to head up their marine section, specialising in Racing Risks - I was able to make use of my network in the Yacht racing world and got sent all over the world to capture new business and maintain client relations. It was my dream job.
15 months later, on a rare day off in 2006, I had a car crash that caused a Traumatic Brain Injury and triggered a degenerative disc disease in my lower spine, made worse by my bleeding disorder and very likely from the 15 years of chronic Hep-C symptoms.
Despite multiple surgeries and years of graduated return to work schemes, the company had to make the decision to medically retire me. I had to sell the house I'd bought to renovate with my girlfriend's dad, as it was 3 floors and the exact opposite of what a new wheelchair user needed.
I became incredibly depressed and angry. My TBI and the complex PTSD I hadn't yet discovered made things much worse.
I spiraled and made some incredibly bad choices for myself and others around me.
I blew through my modest savings in about a year and became homeless. Thanks to a family friend, I didn't have to sleep rough, but my situation was unsustainable.
My MP helped support a priority application for social housing and I was eventually offered a flat in a high-rise, in a notoriously bad part of the city. It didn't matter and I started to try and put my life back together.
In the space of two years, I'd gone from a jet-set professional with a house "on top of the hill", to a wheelchair-dependant council tenant on benefits.
I started advocating online to keep from dying of boredom, helping with consumer rights, civil & domestic disputes and banking issues, eventually stumbling across a forum of people with bleeding disorders like mine, who'd been given HIV, Hepatitis (B, C & D) and potentially vCJD.
I learned about the many campaigns to fight for recognition of the harm done to us. I read about the Archer & Penrose whitewashes and looked into the growing pressure to start a class action suit in the High Court.
In 2017, pretty much because our court case was pending, and under pressure from the DUP, Theresa May announced the Public Inquiry into Infected Blood... The cynics in our community knew this was yet another attempt to kick the can down the road, but we met the chairman with an open mind and a willingness to engage.
Sir Brian Langstaff gave us all hope that we might finally be heard.
6½ years later, we finally heard a politician apologised, unequivocally, for the massive harms done to us and the gross conspiracy to hide it, for nearly 5 decades.
We've lost hundreds in those six years - roughly two every week. People I know, some I loved.
Today's announcement by John Glen of the Infected Blood Compensation Authority is another step towards justice and some closure for those of us Infected & Affected by this scandal.
