‘It’s vindicating but bittersweet’: Infected blood campaigners reflect on their victory
Jason Evans was feeling vindicated this morning as he read the final report of the Infected Blood Inquiry, which he has spent nearly a decade campaigning for.
His stomach leapt as he saw the Infected Blood Inquiry’s conclusion that Factor VIII – a treatment for haemophilia that infected his dad with HIV – should never have been licensed from companies in the US.
“That was everything,” says Jason. “We’ve got what we wanted in terms of the infections from the treatment and the response of the state [in conducting a cover-up]. It feels very vindicating on every level.”
But the moment was also bittersweet, as it confirmed the fact that his father should never have been treated with the medication that killed him. “My dad wouldn’t have been infected with HIV and would probably still be alive today,” he says.
Jason Evans was born into the infected blood scandal in Coventry in 1989. On his birth certificate, there’s a black “biohazard” symbol marking him as the child of someone with HIV. “On the day I was born, I had an HIV test,” he says.
His earliest memory is a tragic one, from his fourth birthday in 1993, when he visited his father Jonathan at his grandparents’ house. He remembers his dad lying in bed, too weak to play with him.
Six weeks later, on Oct 8 1993, Jonathan died from Aids-related illness, having been co-infected with HIV and hepatitis C after treatment for the genetic bleeding disorder haemophilia. The treatment involved injections of Factor VIII, a blood clotting protein found in plasma. Factor VIII carried a risk of blood-borne disease because it was made from thousands of donations of human plasma, which were pooled together and hadn’t been treated to kill viruses. One brand of Factor VIII was manufactured in the UK, but the protein was also imported from pharmaceutical companies in the US because insufficient quantities were produced in Britain. In the US, companies exacerbated the risk by collecting plasma from high-risk donors, including prison inmates and sex workers.
Evans can recall his father’s funeral, at which he laid a rose on the coffin and said, “Bye bye, Daddy, I’ll miss you.” Last year, Evans became a father himself, which has made him reflect on his dad’s final months. “I have consciously thought about the agony I would feel at the idea of dying really slowly,” he says.
“The idea of leaving your child is a nightmare. It’s the worst thing to think about.” He adds: “It’s not one of those stories where he pulled through and we’re so grateful. He actually died and that’s the end of the story. It does suck to think about.”
Throughout his childhood Evans, now 34, was made to feel uncomfortable, with children making Aids jokes in the playground and calling him “the Aids boy” at the water fountain. Whenever he asked his mum what had happened to his dad, she would cry.
For many years, Evans believed Jonathan had died as a result of a tragic accident. But with time he started to learn that his dad could have been given the choice of a safer treatment.
“My dad was a severe haemophiliac, he lived off cryoprecipitate until his mid to late teens, he had it at home and had surgery under it,” he says. “There was no issue.”
While each Factor VIII treatment was harvested from thousands of patients, cryoprecipitate was a portion of plasma from one donor, making it much less likely to transmit viruses. Life expectancy for people with haemophilia increased when cryoprecipitate was introduced in 1964. But it was Factor VIII that was deemed “revolutionary”, because it was much easier to use, could be stored in a fridge rather than freezer, and injected on the go or in advance to prevent patients having bleeds. Without being given a choice or full information about the risks, Jonathan was moved onto the Factor VIII.
In 1984, Jonathan raised concerns with his doctor about the risks of Factor VIII, having heard news of people with haemophilia contracting Aids, the first reports of which had surfaced in the late 1970s. The doctor told him there was nothing to worry about. That year, as he continued to be treated with Factor VIII, he contracted HIV.
The moment that spurred Evans into action came three decades later, in 2015. He heard the results of the Penrose Inquiry into blood infections arising from NHS treatment in Scotland and was outraged. The report claimed that little could or should have been done differently to avoid patients being given contaminated blood products and transfusions. Campaigners branded it a “whitewash”.
By this point, Evans worked in marketing and had become a hip-hop musician. But he was soon dedicating every spare hour to investigating the blood scandal, poring through documents at the National Archives and combing through evidence from 30 years earlier.
Getting to know more people who had been affected by the scandal, Evans met a man called Max (not his real name), a 53-year-old who had been co-infected with HIV and hepatitis C just like Jonathan, after treatment with Factor VIII for haemophilia. In 2016, they formed a campaign group called Factor 8, of which Evans is the director and public spokesman. Together, they would help force the government into announcing a new inquiry, within a matter of months.
Max, however, prefers to stay behind the scenes. To this day, his real name does not appear on their website or campaign materials because he fears the stigma he would face if people knew he was HIV positive.
‘We were scared of people finding out’
Max was diagnosed with HIV when he was 12-years-old, alongside his older brother who also tested positive.
“People have had bad experiences with paint being daubed on their houses, their cars being vandalised,” says Max. “We were that scared of anybody finding out that you didn’t say a word and that stuck with me through my whole life. Our parents drummed it into us that you don’t talk about it. As I got older it was my whole armour. I hate to use these words, but you learn to live a lie and half a life.”
He overcame Aids-related illness in the early 2000s, after having to drive his lorry straight to hospital when he became too unwell. “I knew I was in big, big trouble,” he says. “I virtually had no immune system left. I didn’t want to go to hospital because it was like admitting, ‘You’re on your way out, sonny boy.’”
Having recovered slowly with antiretroviral medication, Max joined other people with haemophilia who wanted answers about what happened to them and their relatives. “The Penrose Report knocked us sideways,” he says.
Things shifted after he teamed up with Evans. “It was quite monumental to meet him,” says Max. “We got on ever so well straight off and became closer and closer friends. I liked Jason’s determination. We both had the same approach that we would do whatever it took and not be put off by others.”
Their different campaigning styles complemented one another, with Evans providing a rigorous investigation and Max evidence of his gruelling personal experience.
In 2017, the pair met the lawyers Des Collins and Dani Holiday, from Collins Solicitors in Watford, Hertfordshire, who were astounded by the wrongdoing that led to Max and Jonathan’s HIV infections, and the subsequent cover-up.
“Jason produced many, many documents,” says Max. “The greatest thing about Jay [Jason] is document-wise and academically he’s absolutely brilliant. My forte was talking about things that happened when I was young. We built a jigsaw.”
Max also had a close relationship with Alistair Burt, his local Member of Parliament, who fought for justice on his behalf for years until stepping down as MP for North East Bedfordshire in 2019.
Collins suggested Evans and Max sue the Department of Health for misfeasance in public office, with Evans as the lead claimant. “Me and Jason looked at one another and said, ‘Yes please!’” Max recalls. “It was absolute elation.”
Before long, hundreds of people had put their names to the case. Facing pressure in the media and a separate judicial review, Theresa May announced the Infected Blood Inquiry in 2017.
“It was just a case of meeting the right people at the right time,” says Max.
Over the years, Evans has learnt to wear many hats, from lawyer to policymaker, helping draft documents and poring over tens of thousands of pages of evidence. “By doing the research I inadvertently educated myself,” he says.
There have been setbacks along the way and infighting among campaigners; all of which have brought a stress that takes its toll. As a teenager, Evans developed anxiety, panic attacks and globus pharyngeus: the sensation, which can be triggered by stress, of a lump in the throat when there is in fact nothing there. Now, he says, “I wake up in the night at 2am and think, if I just take 10 minutes I can do another email campaign. It’s 24/7.”
There have also been incredibly sad moments. Through his campaigning, Evans discovered a few years ago that his father had been adopted at birth and had a biological brother and sister. Tracking down the sister, Evans discovered that the biological uncle he had never met also had haemophilia, and had been co-infected with HIV and hepatitis C by Factor VIII. The two estranged brothers had passed away within a couple of years of one another.
Amid the darkness, Evans and Max have found ways to make light. “We both have a stupid sense of humour,” says Max. “When you have to do this stuff day in, day out for many years, like we have, if you’re serious all the time it will have a very detrimental effect on you.”
At one point, Evans sought counselling to help deal with the pressure, but he is determined to stay focussed. “I don’t want to be distracted. The rule is to keep things constructive,” he says.
Among it all, Evans has preserved time for his wife, baby daughter, and other friends and family. “I don’t want to be upstairs trying to get the truth about the blood scandal while my daughter’s downstairs,” he says. “Every day I have time that’s 100 per cent focussed on her. It’s just building blocks or Play Doh.”
Evans feels lucky that he has family he can spend time with, especially given the experiences of some of those he has campaigned closely with over the years. There are children who were orphaned, parents who lost more than one child and cases of people who lost both their parents and siblings. “When you’re left with no one, that’s really rough,” says Evans. “They’re the worst stories to me. To go from a family to no family is a rare experience. Those stories stick with me.”
Evans and Max were buoyed by the interim report of the Infected Blood Inquiry last year, which said: “My conclusion is that wrongs were done at individual, collective and systemic levels.”
Failures across the board
For Evans, the government should never have introduced Factor VIII until it had been heated up to kill viruses, which eventually happened in 1984.
“In some of the pharmaceutical company licence applications it was clear that the products contained hepatitis, came from risky sources including prisons, and the state licensed them knowing that,” says Evans. “That will almost be failure number one: the state licences a product it knows to be dangerous.”
The failures continued across the board, Evans explains: “Failure to inform patients of the risks; failure to inform patients of their diagnosis in a timely manner; from there, a failure to be forthright about what happened and why; and a failure to provide adequate financial or psychological support to people for decades.”
The inquiry recommended immediate compensation last year, but the Government has dragged its feet. A month ago, at St Botolph’s without Bishopsgate church, Evans flicked through the book kept in a glass display that commemorates victims of the infected blood scandal.
Each October, a service is held here to remember some 3,000 people who have died after treatment with contaminated blood products and transfusions. “It used to be about forgiving the government and pharma companies,” says Evans. “In recent years it’s become more about the importance of the truth.”
At the end of the service, congregants file to the back of the church to each light a candle. “There’s normally a line of hundreds of people,” says Evans. “It brings it home.”
When Evans and I spoke back in 2021 for Bed of Lies, an investigative Telegraph podcast on the infected blood scandal, he told me: “There is no victory, there is no winning. It’s just too late. There is never going to be a day where we’re all still on some steps cheering that we finally made it. It’s never going to happen because almost everyone’s already dead. So it’s already lost.”
Three years on, he feels the same way. “The feeling I’ll have is, ‘thanks for wasting a decade of my life.’ Not just taking my dad, but taking a decade of my life that I could have spent doing something I actually wanted to.”
Even as campaigners are on the brink of finally securing compensation from the Government, Evans doesn’t believe it can cover what he has lost. “Just what I’ve spent to do the campaigning I wouldn’t see in compensation, let alone my dad’s pain and suffering, and my emotional turmoil as a child,” he says. “When people talk about victory it’s just a waste of my time. But I chose to do this because I couldn’t stand not doing anything.”
“There’s still work to do on compensation and getting a memorial for victims,” he says, adding that he hopes very soon he will be able to put the campaign to bed. “It’s nearly over and that’s a good feeling.”
On Monday morning, Max went to St Botolph’s for a moment of peace to remember the friends he lost to HIV and hepatitis C, including his closest friend, who died around 10 years ago. “He asked us not to stop, to keep going and going,” says Max. “And we have. We’ve kept going because we’ve always had at the back of our mind that he wanted us to. We weren’t going to give in.”
Every survivor will pause today to remember the people they have lost and the lives they could have had, as they experience this day that has been decades in the making.
The Poison Line: Life and Death in the Infected Blood Scandal by Cara McGoogan is out now (Penguin)
Listen to Bed of Lies, a six-part Telegraph podcast laying bare the biggest treatment disaster in NHS history, on Apple Podcasts, Spotify or your preferred podcast app.
