Infected blood scandal: Man infected with HIV as child spends 41 years campaigning for justice

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A man from Worcestershire who was infected with HIV and Hepatitis C when he was just five years old in 1983, says he won't stop campaigning until there is justice and compensation for victims of the Infected Blood Scandal.

Andrew Evans from Worcester co-founded the Tainted Blood campaign in 2006, which pushed for the independent inquiry that was published on Monday 20 May. For 41 years he has campaigned for the truth about the contamination scandal.

At 13 years old, Andy's mum took him on an unexpected drive to the countryside to tell him he had HIV. It's likely he had been infected at just five years old when he had Factor VIII injections for Haemophilia.

Factor VIII was a concentrated blood clotting protein touted as a wonder drug to stop internal bleeding and it was easy to mix with water and inject with a syringe. So easy that Andy was able to administer it himself when he was just four years old.

Andy's parents started to hear concerns about the drug potentially carrying HIV but were told by doctors to keep giving it to their son.

They weren't told by doctors until Andy was ten in 1987 that he had HIV, and waited a few years before telling him.

Andy told ITV News Central: "I had to start on medication, which meant there was no choice but to tell me at that point.

"So my mum took me out for a drive into the countryside, which I thought was odd because we'd never do that.

"I was wondering what this was for and I turned to her and there were tears in her eyes.

"She said, 'Have you heard of HIV?'

"And I said, 'I've heard about it. I don't know much about it. But I've heard it kills people.'

"She said, 'Well, it's been in the factory, and you've got it' and she started crying."

Andy said he felt the need to be strong for his parents: "I was 12 or 13, I was invincible and there was nothing that I felt could stop me.

"I said to mum, 'Don't worry, you know I'll get through this. I'll do what it takes. I'll become a researcher or scientist or doctor, and I'll find a way to cure it."

Andy was later told that his HIV should be kept a secret from others because of how other people with the disease had been treated once people knew they had it.

Andy spent the rest of his teenage years getting very sick from toxic, unpleasant drugs and treatments. His weight dropped to dangerously low levels and he was often sick at school which isolated him from others.

At one point a combination of drugs led him to have a stroke, and he had to have two hip replacements.

'My job was to stay alive'

Andy says suffering with AIDS in his teenage years was an incredibly difficult ordeal for his family to go through. He told ITV News Central: "In some ways. I think being the person infected and unwell is much easier than being the person looking after a loved one.

"I was just there to do my job which was to stay alive.

" I can only imagine what my parents must have gone through. For years been told that their son is about to die."

Once Andy's condition became more manageable with better treatments available, he began to think about what he wanted achieve with his life.

"My first goal was to reach the year 2000 because that was the future. And I thought, if I make it there, that's my ambition complete and I'll reconsider what life means for me at that point.

Amazingly, I made it at the age of 23. And I thought - well I need to do something with my life."

'My purpose was to try and get to the bottom of this'

It wasn't until Andy joined a support group for haemophiliacs that he began to realise he wasn't alone.

He said: "I started to work with the McFarland Trust which was a support group for people with HIV and haemophilia like myself, who got together to have a chat, talk about our similarities, the things that we've been through.

"We talked frankly, which I wasn't able to do with anyone before - it was amazing.

"But also having spoken to those people, I started to get the idea that maybe what happened to us wasn't just some terrible accident, and that maybe decisions could have been made that could have stopped this from happening to us all.

"I started to look into it myself. I talked to other people who had campaigned previously and it confirmed my suspicions that all of this could have been prevented."

Andy soon realised that despite the years of his sickness and treatment, he had been lucky to still be alive, while hundreds had died from the scandal.

"I was one of the lucky ones. I managed to survive until combination therapy came out. But I learned at that point, people had been dropping like flies since around 1984.

"I think about half of the people infected with HIV at that point had died. I'd made it through, so I thought I owe it to them. I started the campaign campaign group Tainted Blood in 2006."

The group long campaigned for a public inquiry to investigate the scandal, which was first announced in 2017.

They're still calling for compensation for victims, a public apology from the Prime Minister, and for lessons to be learned.

'I wasn't told about my Hepatitis C'

Andy didn't find out until he was in his twenties that he was also infected with Hepatitis C, because a doctor let it slip by accident during a routine appointment.

Andy said: "Hepatitis C exposure was roughly 90% throughout the entire haemophiliac population who took Factor VIII in the 1980s.

"One day I went for my haemophilia and HIV appointment. I was in the treatment room having bloods taken. My doctor popped his head around the door and said to the nurse, 'can we check his Hep C genotype?' And that was the first I'd heard about it.

"It makes me really cross because Hep C is quite transmissible, it can remain alive for a long time outside of the body and I hadn't taken any particular care to protect anyone around me from it.

"I had been infected for 18 years and for all that time, I could have been putting the people around me at risk, which makes me quite angry."

The Tainted Blood group came to realise this was a trend across the country.

Andy continued: "In many cases a diagnosis was deliberately withheld from them for whatever reason.

"I was a child when it happened to me, but for other people who were in a different stage of life - they were sexually active. They may even have been married.

"They could have been easily infecting their partners with HIV and or Hepatitis C through that time, and they wouldn't have a clue.

"In fact, we know that that did happen on several occasions. I think we're talking 40 to 50 people. Partners of haemophiliacs were infected with HIV, because their partners weren't told about it.

"It is another injustice. It was negligent to expose people around us to that danger."

'I want it all to end'

Andy says he wants the long fight for justice to come to a close, so victims and their families can get on with their lives.

He said: "I want people like myself - who have gone through years of suffering, painful treatments - I want them to be supported.

"I want them to live the rest of their lives in a meaningful way instead of having to fight and fight and fight for every little scrap of support from the government.

"I want the fight to end. It's been far too long."

"I hope the government ask act swiftly to compensate people with as much as would give them a comfortable life for the rest of their lives. I don't think that's too much to ask.

"It has been such an exhausting fight every step of the way to be told no, no, no, you can't do that."

Andy admits that 41 years of campaigning has taken its toll on him.

"It's exhausting. It's like an unpaid full time job. But it's worse than that, it's the impact that other people's stories have on you and I get phone calls every week from people who want to just talk because they've never spoken to anybody before.

"The way that families were treated when parents died and they were split up and put into different care homes.

"This is something that is deep, deep within me and it's not something I can ever drop until I finally feel that those people have been recognised properly and given the support that they deserve."

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