Andy Evans was 13 when his mother took him for an unexpected drive in the countryside. “I thought: this is strange. Why are we here? We don’t,” 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 that the disease that kills 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 received for his hemophilia since he was diagnosed as an infant. As a panacea to stop internal bleeding, it was so easy to mix with water and inject with a syringe that Evans could administer it himself at home before his fourth birthday.
“I learned to inject myself at the age of three years and 10 months,” he said. “Apparently this is some kind of record. They sent people from the blood transfusion service out to take pictures of me to put up in their offices.”
When Evans the NHS poster boy for factor VIII, back in the early 1980s, he had no idea that the treatment he injected himself with was contaminated with HIV and hepatitis.
Forty years later, after surviving against 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 older and heal myself.’
His illnesses 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 via Tainted Blood, the campaign group he co-founded in 2006, he ensured that politicians, drug companies and doctors were forced to admit that the UK’s tainted blood scandal was not simply a case of “incredible bad luck”. as former prime minister John Major put it.
The group has relentlessly pushed for the independent inquiry, which will publish its final report on Monday. Sir Brian Langstaff, the High Court judge who led 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 before”, Evans hopes Langstaff will set the record straight that “everything we’ve been saying all these years is the truth”. Namely this successive governments have ignored multiple warnings about contaminated blood and allowed him and thousands of others to be 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 it only took one contaminated sample to contaminate the entire group.
Due to a shortage of blood products in the UK, the NHS purchased them 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 for about $100 in the drug industry supply chain.
to newsletter promotion
Drug companies became 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 girl when it looked like their relationship might turn 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 that’s not something you want to get involved with when you’re 16.
“But for me it destroyed my confidence. It was a massive 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 emerged friendless. “They all moved on with their lives, they were at university, they had relationships,” he recalls. “If I had a goal, it would be to reach the year 2000. Because it was the future for me. And once I did that, I was good to go. I can die in peace.”
But he survived to see 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 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.
