‘My mum had to tell me I had HIV’: the former blood transfusion poster boy campaigning for infected victims | Contaminated blood scandal

AIndy Evans is 13 years old when his mother takes him on an unexpected drive in the countryside. “I thought: this is strange. Why are we here? We don’t do that,’” he recalled. “We sat for a few minutes and then she turned to me with tears in her eyes. And she said, “Do you know what HIV is?” And I said, “Well, I’ve heard of that… Isn’t that the disease that kills you?” And she said, “Yeah, that’s right. It was in Factor VIII and you got it.

Factor VIII was the concentrated blood clotting protein he had been receiving for his hemophilia since he was diagnosed as a baby. Touted as a miracle cure for internal bleeding, it was so easy to mix with water and inject with a syringe that Evans was able to administer it himself at home before his fourth birthday.

“I learned to give myself injections at three years and 10 months,” he said. “Obviously it’s some kind of recording. They sent people from the blood transfusion service to take pictures of me and put them in their offices.’

When Evans got up NHS a poster boy for Factor VIII in the early 1980s, he had no idea that the treatment he was injecting was contaminated with HIV and hepatitis.

Forty years later, after surviving the odds to reach the age of 47, he has become one of the most prominent campaigners demanding the truth about how 30,000 people in the UK like him were treated with contaminated blood.

When Evans’ mother told him he had HIV in 1989, he put on a brave face. “I decided to be the big guy. And I said, “Don’t worry, I’ll just become a scientist or a doctor when I’m old and cured.”

His illnesses caused him to miss so much school that he was never able to build a career in medicine and now works as a web designer. There is still no cure for hemophilia. But through Tainted Blood, the campaign group he co-founded in 2006, he ensured that politicians, pharmaceutical companies and doctors were forced to admit that the UK’s tainted blood scandal was not just a case of “incredibly bad luck “, as former Prime Minister John Major said.

The group has been relentless in its push for the independent inquiry, which will publish its final report on Monday. Sir Brian Langstaff, the High Court judge leading the inquiry, has already ordered the government to compensate those affected and announced that “Mistakes were made at individual, collective and systemic levels”.

Although he’s been “burned so many times before,” Evans hopes Langstaff will write that “everything we’ve been saying all these years is the truth.” Namely this successive governments ignored multiple warnings about tainted blood and allowed him and thousands of others to become infected from contaminated plasma bought cheaply from drug addicts and prisoners in the US.

Factor VIII is made by pooling the plasma of tens of thousands of donors, and only one infected sample is needed to infect the entire batch.

Due to a shortage of blood products in the UK, the NHS bought it from the US. From the early 1960s to the early 1980s, American pharmaceutical companies paid prisoners between $5 and $7 each time, and the plasma sold for about $100 in the drug industry’s supply chain.

Pharmaceutical companies were getting rich, and several generations of hemophiliacs were infected with HIV and hepatitis C. Evans’ youth was in tatters. He was encouraged to keep his HIV status a secret, but told a teenage friend when it looked like their relationship might turn sexual, only for the girl to say she couldn’t handle the news.

“It was completely understandable,” he said. “I mean, she was 16 years old, and that’s not something you want to mess with when you’re 16.

“But for me it shattered my confidence. It was a huge blow to the body and mind. And that was it for me for relationships for many, many years.”

When Evans was 16, he developed AIDS and spent four years in hospital. He showed up without a friend. “They had all moved on with their lives, were at university, had relationships,” he recalls. “If I had a goal, it would be to reach the year 2000. Because that was the future for me. And once I did, I was done. I could die in peace.

But he survived to see the new millennium and, thanks to modern HIV treatment that suppresses the virus, was able to have three children with his wife, Michelle. Gareth Lewis, his co-founder at Tainted Blood, was not so lucky and died in 2010 – one of at least 2,900 people who died prematurely in the UK after receiving tainted blood products.