‘We’d had Factor VIII pumped into us. People were going yellow, getting ill’
Life changed overnight for Gary Webster in 1975 when, aged nine, he started boarding at the Lord Mayor Treloar College in Hampshire, a school for children with physical disabilities. He learnt to sail, struck up friendships and ran wild in the dormitories at night. He also had his first dose of Factor VIII.
The treatment initially gave him a sense of freedom after a childhood defined by haemophilia – one spent waiting hours for cryoprecipitate to defrost, transfuse and take effect.
Similarly relishing in the newfound liberation was Gary’s best friend Stephen, whose family were farmers in Norfolk.
The pair stayed up late talking to local people on their CB radio and, when they were older, snuck up to London to watch David Bowie in concert. They planned to live together after leaving school at 18.
Whenever they had a bleed, day or night, they could go to the onsite NHS-run haemophilia centre for treatment. But amid the idyllic life Treloar’s initially appeared to offer, there were also signs that things were, in fact, going badly wrong.
Gary and other boys were regularly bedridden for weeks with serious illnesses, including hepatitis and glandular fever. And by the outset of the 1980s, Gary noticed the amount of Factor VIII they were given dramatically increased. “I’d have to give myself injections every other day,” he says. “It was so monotonous. I thought, ‘Why do I need it when I haven’t got a bleed?’”
When Gary questioned the school’s doctors over the regime, he was told it was to prevent bleeds. But his friend Stephen had another theory: “I’m sure they’re experimenting on us,” he said.
In their final few months at the school, in springtime 1983, Gary and Stephen, then 17, were abruptly called out of class. The doctor wanted to see them.
“I’ve got something to tell you,” said Dr Mounir Wassef. Both the boys had signs of a newly emerging illness, Aids. “It is incurable and we cannot guarantee you will be alive in two to three years,” he said.
They were among the first people in Britain to be diagnosed with the life-threatening condition, a year before HTLV-III was discovered and the link between Factor VIII and the illness was accepted by the government.
“We just couldn’t believe what he was saying,” recalls Gary, 59. “We were shocked but we were young. We looked at each other and half smiled. Then we went back to class.”
The doctors left it to Gary and Stephen to inform their parents.
“My mum and dad had to inject me when I was a young lad,” says Gary. “They put their trust in the college, the doctors and the staff. They felt guilty and upset.”
His parents were told little about their son’s treatment by the doctors at Treloar’s. They didn’t know what brand of Factor VIII he was receiving, or how often he was being treated, and nothing of the associated risks.
They were even kept in the dark when Gary contracted hepatitis and glandular fever. “If it wasn’t for me telling them what was going on while I was at the college, they wouldn’t know anything,” he says.
After receiving their diagnoses, Stephen’s health declined more rapidly than Gary’s and by 1991 he was suffering with Aids-related illness. For a while, he tried to hide it, but eventually he confided in his friend.
“I think I’ve got it,” Stephen said. “Join the club,” replied Gary, whose own descent into illness was also quickening.
Later that year, Gary was told by Stephen’s father that his friend had been hospitalised with pneumonia. Knowing Stephen would never make it out, he made the long, sorrowful journey from Hampshire to Norfolk to say goodbye.
Like other Treloar’s boys, Gary had become accustomed to seeing school friends grow poorly, witnessing their decline at regular reunions, and paying his respects at the funerals that followed. After Stephen’s death he stopped going to both.
“It got too hard,” he says. “Every time you went to the reunions there were fewer and fewer people. The funerals were every year from the late Eighties into the Nineties.
“I had a big group of friends who were haemophiliacs – and [then] there weren’t that many of them any more.”
In 1996, an effective antiretroviral treatment based on a new combination of drugs was introduced, helping Gary back from the brink. “It was pot luck that treatment came in when it did,” he says. “Others got ill too early.”
But 15 years later, in 2011, he was forced to retire, aged 46, from his job at the Red Cross because of hepatitis C. It was a second, major professional blow, having earlier been forced to abandon his dream career as a tailor in the 1990s.
“It was so difficult to get up and go to appointments,” he says. “The fatigue and brain fog was awful.”
Without work, Gary turned his focus to campaigning, joining a group of boys from Treloar’s who had come together to demand answers over how 122 of the school’s pupils had been allowed to contract viruses including hepatitis C and HIV.
He was fuelled by anger about his own condition, and the fate met by Stephen, one of 80 boys from the school who died as a direct result of the infected blood scandal. “I went on my first campaign demonstration to [then-Prime Minister] David Cameron’s constituency,” he says.
In 2017, Gary was one of more than 1,000 survivors and bereaved relatives who came together and sued the Department of Health for misfeasance in public office. Soon after, Theresa May announced the Infected Blood Inquiry.
“I campaigned to get the inquiry going with Theresa May,” says Gary. “I’ve made posters and press releases, written to MPs and travelled to London with my MP and local councillor.”
The inquiry opened in 2019. Two years later, it dedicated a week of hearings to Treloar’s, during which evidence emerged confirming that children at the school had been part of research, including how effective preventative treatment was for haemophiliacs, and what brands of Factor VIII were more likely to transmit hepatitis. Both these trials involved being injected with high-risk Factor VIII imported from the United States and, at times, placebos.
Present at the hearings, Gary realised he had been put onto a trial in his first year at the school, without being told. Its former headmaster, Alec Macpherson, said he had known about the research but avoided probing the school’s NHS-affiliated doctors because he trusted them.
“We knew our own story; we’d lived it,” says Gary. “We’d had Factor VIII pumped into us; people were going yellow; people were getting ill; we knew there was something wrong.
“We also knew we could have been on cryoprecipitate. But that week, Alec Macpherson said ‘doctors are gods’ and [admitted] that he didn’t question them in his weekly meetings. We found out we had been on placebos for trials.”
On the back of the revelations, Gary moved to sue Treloar’s for breaching its duty of care. His court case is pending until the final report from the inquiry, but he is keen to pursue it once the findings are released.
“Treloar’s have to answer for what happened under their watch,” he says. “We were at school without our parents – they basically were our parents.”
Looking ahead, he wants to see PM Rishi Sunak deliver a public apology in Parliament for the scandal, proper compensation announced by the government, and a memorial built at Treloar’s for the pupils who died – a measure of justice, in other words, at long last.
“It has to be a life-changing amount of money,” he says of the compensation. “Eighty boys have passed and that’s only going to increase over the next few years. People’s lives have been ruined; people have lost loved ones – how much [value] do you put on that?”
Listen to Bed of Lies, a six-part Telegraph podcast laying bare one of the biggest medical disasters in history, on Apple Podcasts, Spotify or your preferred podcast app