Mark Ward should be long dead. He ought to have been a goner decades ago. “Somebody dies of infected blood every two days,” he explains, “and every time they do, it’s a step closer to being my turn.” He delivers this nonchalantly. “I have to live in the fast lane, because the clock is ticking and mine is running extra fast. I’ve got this far on borrowed time: at some point my luck will run out.” Ward’s husband Richard wanders through their living room – briefly, they share a hand squeeze and smile. “So, usually, I’m asked to look miserable and solemn in photographs. It’s always darkness, death and destruction. It made a nice change this morning to be allowed to look happy for your pictures.”
In the 1970s and 80s, more than 30,000 British patients were treated with contaminated blood products teaming with harmful pathogens – a lethal scandal on a national scale. Ward, 55, a haemophiliac, was one of 6,000 bleeding-disorder patients. He was infected with HIV, multiple strains of hepatitis, cytomegalovirus, Epstein-Barr virus, parvovirus B19 and others. To date, at least 3,000 people have died because of a litany of institutional failures, covered up for a generation.
“But, you know,” Ward continues, “life’s too short to only be miserable. There’s more than just one bit of me.” It’s this spirit which spills from the pages of his new autobiography, Bleeding Fabulous. While death, pain and prejudice have defined much of his life – it’s all there to see – so too, has joy and love and high-camp hilarity. “There’s nothing like the nearness of death,” Ward writes, “to make you want to live your very best life… Faced with my mortality, I chose to live fabulously.”
It’s late October on the East Sussex coast. We’re sitting in the neat living room of Ward’s marital home, on a quiet close just down the road from Brighton. Along with a small army of volunteers and activists, he’s spent years campaigning for justice for the victims of the contaminated blood scandal – a relentless battle. “It has been non-stop,” he says. “Constant. While every day, people around us are dying from it, who we love like family.” Beyond the sliding doors out back is a cherished, verdant garden. Tending it, Ward says, has offered an escape when the fight has felt all-consuming.
The results of the years-long efforts are at last coming to fruition. In May this year, a damning report was published: the culmination of the six-year-long Infected Blood Inquiry led by judge Sir Brian Langstaff. It found that the NHS’s worst treatment disaster “was not an accident” and that it could “largely, though not entirely, have been avoided”. That patients were exposed, knowingly, to “unacceptable” infection risks due to “systemic, collective and individual failures” by the authorities. During the hours that Ward and I spend together, Chancellor Rachel Reeves presents her first budget to parliament. In it, she earmarked £11.8bn in compensation for infected blood victims. Without activists like Ward, it is crystal clear that these milestones would have been unimaginable. “We’re not done yet,” Ward is keen to clarify, “there’s still much more to do. I don’t trust the government, or anybody, really. Because of all the lies and betrayals, I struggle in that area. But people like me have a voice now; a say in what comes next. At last, we can’t be ignored.”
Recently, Ward’s been working with NHS England to design a psychological support service for those impacted. Only yesterday, he was up in Newcastle meeting its new staff with four other surviving victims. Back in August, a compensation authority was established, tasked with paying out to those affected once final figures have been agreed upon. “We were asked to assist in training the people who’ll oversee the process. I was preparing them for the fact that what they’ll hear is going to be horrific. And I wanted to tell them how to speak to people like me, after all we’ve been through.” Payout figures are yet to be published. To date, surviving victims – known as the living infected – have received interim payments totalling £310,000.
“I’m not in this for the money,” Ward points out adamantly, “and I never have been. Realistically, the government can’t give me back my life. They can’t uninfect me, or take away decades of fear, stigma and pain. Money, though, is what they can give as recognition.” He hopes it’s a deterrent, too. “We need to make it hit them in the pocket hard enough to ensure it’s so expensive that something like this can never happen again. While I’m still here, the kids who aren’t… my friends… I’m doing this for them. I need to get justice for those we’ve lost, as well as for me. I made them a promise that while I have breath in my body, I’ll keep going.”
Acknowledgment has helped heal certain scars. “But some things,” Ward fears, “won’t ever go away. I still need an injection every week for my treatment. Every time that needle goes in, I’m transported back. That thought goes through your mind: what could this one have in it?”
The first signs came when Ward was eight months old: a vast, dark purple bruise along his side that appeared from nowhere. Not long after, he nicked the inside of his upper lip. Nothing his parents tried would stop the bleeding. When he was three, specialists at Great Ormond Street Hospital diagnosed him with haemophilia: a rare genetic disorder, predominantly in men, that prevents blood from clotting properly.
“The doctor told my family my life expectancy would be 21, if I was lucky.” The smallest knocks and bumps, his parents learned, might easily become life-threatening without urgent treatments. Bleeds – whether internal or external – could prove fatal. “Life became an endless back and forth in ambulances,” Ward says. His regular nosebleeds didn’t help matters. “In those days, parents couldn’t stay overnight in the hospital. Mum would have to leave me, not knowing if she’d see me alive again. They’d tie me to the cots to stop me tampering with needles. It was torture, they couldn’t do it today.” It was a lot for the young family to handle.
In 1976, medics floated changes to Ward’s treatment. “This new treatment was called Factor VIII,” the family was told. “They said it was the future and would normalise my life. It could be administered at home.” Still, his parents were instinctively reluctant to mess with what was already working. Much of this Factor VIII was imported from the US to meet growing domestic demand. “Dad didn’t trust it.”
“Then in 1977, at the age of eight,” Ward says, “I was hospitalised in the middle of the night. The on-call haematologist went to get the treatment I’d need from the freezer.” As always, it was prepared in another room. “The doctor came in, administered it as normal, and off we went. A few days later, I was back in, and Mum noticed something was different. She asked and was told I’d been transferred to Factor VIII on that previous admission a few evenings earlier.” The family hadn’t consented to the change. “We were told it was too late now. Decision made. It was a switch we were promised would change all our lives forever. Which it did, irreparably.”
For the better, at first. Routines stabilised with the new drugs. “Mum learned how to do the injections,” Ward explains. “So, mostly, I could be treated at home. I went to school. We could take holidays. And Factor VIII shoots up your life expectancy. Suddenly my future didn’t have a limit of 21. I was told I had a whole new chance at life, I was told…” Ward cuts himself off, shakes his head and breathes out slowly.
In 1984, at 14, Ward needed knee surgery due to complications from his haemophilia. He was admitted to the Royal Free Hospital in London’s Hampstead. “After six weeks, on the day of discharge,” Ward recounts, “Dad was pushing my wheelchair through the hospital, when one of the nurses popped up, and shouted across the waiting room, in front of other patients: ‘Mr and Mrs Ward, do you want to know his HIV results? He’s positive. See you next time!’ We stepped out and got in the car in a daze.”
“There’d been no mention of me being tested for HIV,” Ward explains, “for us, the result came from nowhere.” Days later, back in hospital, medics expanded on the situation. “Accidentally, we were told, the ‘blood of homosexuals’ had got into the treatment. The doctors said, don’t tell anyone; we can’t guarantee your safety.”
Ward’s parents fought for their son to remain in school. “I could return,” Ward says, “the headteacher reluctantly agreed, on the condition that if anyone found out and complained, I’d be kicked out immediately. After my haemophilia diagnosis, people knowing what was wrong with me offered me protection. Now, with HIV, my health made me a target.”
A future had been dangled in front of this teenage boy’s eyes. Now, it was being snatched away. “I was told I’d now have two, maybe three years to live. No 18th birthday. There was no cure. HIV would become Aids: a death sentence.” This was the early days of the Aids epidemic; three years before the first prescriptions for antiretroviral HIV treatments. “They said I wouldn’t live long enough to even finish school,” says Ward. “It was totally devastating.”
Around 1,250 haemophiliacs were infected with HIV in this way, including 380 children. Some unknowingly infected their partners. Less than 200 are still alive. Ward, like many others, was told his infection was an unfortunate accident. Decades later, the Infected Blood Inquiry would confirm the truth: that in 1982, two years before Ward tested positive, it had been established that HIV could be transmitted through blood products. This was “very well known”, according to the report, by officials at the time. It took the NHS until the end of 1985 to heat-treat blood products to eliminate HIV, although the risks were known years earlier.
Reporting from as early as 1985 also found that Factor VIII from the US was made not with volunteer donor blood, as in the UK, but from those paid for their plasma. Much of it was purchased on the skid rows of America’s big cities from addicts, prisoners, those experiencing homelessness and sex workers, all with a high risk of being HIV and hepatitis carriers. In short, as the report found, patients were exposed to “unacceptable risks”. Ward puts it more bluntly: “Corporate greed saw profit put before patients. We were used for research. I was treated like a piece of meat as it was assumed I’d never amount to anything.”
In adulthood, Ward is an out and proud gay man, at home in the LGBTQ+ community. He’s the founder of Haemosexual, a resource for queer people with bleeding disorders. His book, Bleeding Fabulous, recounts years spent working the door at London’s infamous G-A-Y club, often in full drag; boyfriends loved and lost; nights out in Gran Canaria; run-ins with Princess Di and Kylie.
His path to self-acceptance, though, followed rough terrain. Playground homophobic bullying, first. “At home, the news would come on the TV,” Ward remembers, “showing these rows of gay men – with their cloned moustaches – dying of Aids in hospital. I’d watch thinking: ‘That’s what I’ll look like when I die.’ And haemophiliacs were often homophobic, having been told it was the gays who had caused them harm by selling their blood recklessly. At one point, I felt the same: I blamed gay people, too. Every night on TV, it was haemophiliacs, homosexuals and heroin addicts being demonised: I ticked two boxes. Terrified of who I was, I suppressed everything.”
Throughout the pages of Bleeding Fabulous, Ward also points to what he feels was homophobia directed his way by medical professionals. “I felt dehumanised. The way I was spoken to and treated. Invasive tests and questions. Cruel comments and derision regularly.”
Over the following years, Ward would be diagnosed with a catalogue of other viruses. His HIV developed into Aids. He suffered from a stroke, a lesion on the brain, kidney failure, cirrhosis of the liver and is deemed to be at risk of vCJD (the human variant of mad cow disease). “For me, all the viruses and illnesses that followed,” Ward says, “were due to pathogens inside that Factor VIII blood. And the authorities and those responsible for my care, could and should have known. Some did. I can never forgive them.”
Still, Ward carried on. He pursued a career in aviation – a job he loved – and built a life with his husband, Richard. “That’s a disabled person’s approach,” Ward believes. “If you’re born healthy and then become disabled, your whole life changes. When born into a world where nothing is quite normal and life feels fragile, you get on with things. Live each day as it comes. Had I listened to the doctors from the outset, I could have spent the whole time terrified of tomorrow. Instead, I’ve made every second count.”
In 2006, Ward joined the newly formed TaintedBlood, a campaign group of victims and their loved ones, demanding answers. “When I started to learn the truth,” Ward says, “that what happened to me was avoidable, and the subsequent cover-up. For years, I’d woken up every day thinking I’d survived an accident. Then I realised it had been done to me: I am a victim of their actions and abuse. We had to do something.”
Ward’s book documents setback after setback that the campaign group faced before hope appeared on the horizon, including the lies told by successive ministers: as the inquiry report found, there was “deliberate destruction of documents of relevance”. “We couldn’t even rely on the people who were meant to be caring for us,” he says. “My GP didn’t believe what I was telling him. Hospital nurses and doctors tried to hide it from us.”
Thanks to their tireless efforts, David Cameron apologised to the victims of infected blood in 2015. An inquiry was announced two years later. Ward attended every location the inquiry was held in across the UK through its six years of sitting. “It’s bittersweet,” he says, stoically, of all that’s been achieved. “I’m proud, of course, of what we’ve done. I genuinely feel as if I’m keeping my promise to my friends who didn’t make it.”
All that’s happened has never dulled his zest for life. With his book written and compensation soon to be paid, this prolonged chapter might at last be over. His current prognosis might not be great, but Ward is a born survivor. “The last life expectancy I heard,” he says, “was 56. That’s next year for me.” He’s not buying it. Since coming off blood treatments for his haemophilia in 2006, there have been positive developments in his outlook. “I was told I had cirrhosis of the liver because of hepatitis C,” he says, “but that seems to have spontaneously cleared. And with HIV, I now have an undetectable viral load, which means I can’t pass it on. Hopefully my body has got a grip, even if there have been blips.”
Ward and I talk for two hours. Maybe more. As he lists each detail of all he’s endured, there’s steely resilience in his tone – and some righteous rage – but his positivity is infectious. How, I ask, has he remained dignified? He takes a moment to consider. “At times I’ve wanted to scream,” he says, “to cry, and be sick.” Often, he adds, simultaneously. “Along the way, so many people have told us no, we won’t ever get to this point. I was determined to prove them wrong. And we have, even if the money isn’t quite in our pockets yet: we got the inquiry. The apology. What was denied for decades has been proved, undeniably.” Imagining this, he says, kept him going. “I’ve been called a liar and an attention-seeker, a troublemaker and a bad patient, for asking questions that went ignored.” There’s a twinkle in Ward’s eye, as he looks out to Richard in their beloved garden. “So you see,” he says, “it’s because of all this that sometimes, I want nothing more than to stand in front of the camera, smiling.”
Bleeding Fabulous: The Life of a Haemosexual by Mark Ward is published by Inkandescent at £11.99. Buy it for £10.79 from guardianbookshop.com
