‘My mother had to tell me I had HIV’: the former blood transfusion poster boy who campaigned for infected victims

aNdy Evans was 13 when his mother took him for an unexpected ride through the countryside. “I thought: this is strange. Why are we here? We don’t do this,” 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 it… Isn’t it that disease that’s killing you?’ And she said, ‘Yes, that’s right. It was in the factor VIII and you have 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 drug to stop 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 inject myself when I was three years and 10 months old,” he said. ‘Apparently it’s some kind of record. They sent people from the blood transfusion service to take pictures of me and put them up in their offices.”

When Evans became the NHS poster boy for factor VIII in the early 1980s, he had no idea that the treatment he was injecting himself with was contaminated with HIV and hepatitis.

Forty years later, after surviving against all 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 Britain, like himself, were treated with infected blood.

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

His illness caused him to miss so much school that he never pursued 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 has forced politicians, pharmaceutical companies and doctors to admit that Britain’s tainted blood scandal was not just a case of “incredibly bad luck”, as former Prime Minister John Major said so.

The group has relentlessly pushed for an independent investigation that will release its final report on Monday. Sir Brian Langstaff, the High Court judge who chaired the inquiry, has already ordered the government to compensate those affected, stating that “mistakes have been made at individual, collective and systemic levels”.

Despite having “been burned so many times”, Evans hopes Langstaff will make it clear that “everything we have been saying all these years is the truth”. Namely that successive governments ignored multiple warnings about contaminated blood and allowed him and thousands of others to become infected by contaminated plasma bought cheaply from drug addicts and prisoners in the US.

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

Due to a shortage of blood products in Britain, 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 was sold into the pharmaceutical industry supply chain for about $100.

Drug companies grew rich and several generations of hemophiliacs became infected with HIV and hepatitis C. Evans’s childhood 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 become sexual, only for the girl to say she couldn’t handle the news.

“It was absolutely understandable,” he said. “I mean, she was 16 years old, and you don’t want to have to deal with that when you’re 16.

“But for me it has damaged my self-confidence. It was a huge blow to body and mind. And that was it for me for relationships for many, many years.

When Evans was 16, he contracted AIDS and spent four years in the hospital. He emerged without friends. “They had all moved on with their lives, they had gone to college, they had been in relationships,” he recalled. “If I had a goal it would have been the year 2000. Because that was the future for me. And once I did that, I was ready to go. I could die in peace.”

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