‘There is no victory’ – tainted blood campaigner

There can be “no victory” for people affected by the worst treatment disaster in the history of the NHS, a campaigner has said, as officials prepare to publish the final report of the Infected Blood Inquiry.

Jason Evans’ first campaign rally took place when he was one year old – when his father, infected with HIV and Hepatitis C after receiving the Factor VIII blood product, took him to their MP to ask for advice on possible compensation.

Mr Evans has few memories of his father Jonathan Evans, who died when he was just four years old.

The 34-year-old from Coventry said the last memory he has of his father was on his fourth birthday when he remembered being with his sick father who had been ‘eaten’ by Aids.

Mr Evans said years of tireless campaigning have somehow been a way of bonding with his father.

Now the father of a 13-month-old baby girl, Mr Evans said the scandal had ‘shrouded’ his entire life – from his father’s death, to seeing his mother ‘crumble’ in the aftermath, to that he was called ‘the AIDS boy’. ” at school.

He said he started the Factor 8 campaign group in 2016 because he “couldn’t let it go”.

“For me personally, the first time I went to meet my father to see his MP was in 1990 when I was one year old,” he told the PA news agency.

“And the purpose of that meeting was for my father to ask his MP about compensation for victims of the contaminated blood scandal.

“That fight has continued for me ever since – over thirty years, and it feels like we’ve finally come to the end of that very, very long road.”

Speaking at the publication of the final report of the Infected Blood Inquiry, he told PA: “This whole scandal has covered my entire life.

“For me, there was no life before the infected blood scandal – my first memories of my father are of him dying of AIDS, of being at his funeral, of dealing with the aftermath, of seeing my mother fall to pieces from everything What happened. Something happened while I was at school and heard children calling me ‘the AIDS boy’, even though I didn’t know why they said that and had to ask my mother what AIDS is.

“It was just there all my life.

“I think I’ve become quite numb to it to a certain extent.

“One question I’ve been thinking about is, ‘What am I going to tell my one-year-old daughter about this when she’s older?’ and I’m really not sure. I do know one thing: I don’t want this scandal to change the course of life for a new generation of my family.

“It definitely changed the trajectory of my life and what I would or wouldn’t have done with my life otherwise.”

He added: “When I first decided to set up Factor 8 and start working on it – not part-time, not in the evenings, but 24/7 – a number of people around me said the same thing, namely: ‘ This has ruined your father and mother’s lives. Do you really want yours to be ruined too?’

“And it’s something that I thought about very carefully and I just couldn’t let it go. I went to sleep thinking about it and I woke up thinking about it.

“It was always about the truth in the answers – the biggest mystery in my life not knowing my father, I think in a strange way this whole thing was about trying to find a connection with my father.”

He continued: “I think if the investigation culminates in a report and we get the truth and we get the answers, what does that mean? It won’t bring my father back, he’s dead, that’s how it is.

‘And do I feel better now? Does knowing it could have been avoided make me feel better? Does knowing that actions could have been taken that would have kept him from being dead make me feel better? No.

“And that’s why I think there is no victory in this campaign.

“From what I see, maybe there will be compensation, maybe some people will be stripped of their honors, maybe some doctors will be struck off the General Medical Council register – none of this is a victory in my view.

“There is no victory in this, there is no glory, there is no day when we say, ‘Wasn’t this campaign a great success?’”

Mr Evans’ father was born with a blood clotting disorder haemophilia and was prescribed the factor VIII product in the 1970s and 1980s.

“My father was infected with hepatitis C, he was also infected with HIV and died in 1993,” he said.

“He was 31 years old, so I’m older now than he was when he died.”

Mr. Evans’ father was adopted at a young age.

He said that after his father’s death, he decided to track down his father’s biological family.

During his search, he discovered that his uncle also died after being infected with Hepatitis C and HIV from Factor VIII products.

Asked about memories of his father, he said: “Very few to be honest.

“My father knew he was dying and he made a lot of home movies, which I have and replayed over and over again growing up because that was basically all I had.

“The last time I saw my father alive. It was my fourth birthday in 1993. He was at his parents’ house – he had actually chosen to die there and he was very ill in bed – AIDS had just ravaged him.

“I remember standing in this room with the first Gameboy in my hands, the gray one with the purple buttons, and just having no idea what was really happening.

“But I still remember that day clearly. I think my mind somehow managed to retain that.”