By Clare Wilson
When Andy Evans was 12, his mother told him he had been infected with HIV. “Do you know what that means,” she asked. “Well, yes,” he replied. “It eventually kills you.”
More than 30 years later, Evans gave evidence this month to a UK public inquiry into how HIV was passed to people receiving blood transfusions or certain medical treatments in the 1970s and 1980s.
Evans is one of about 1200 people with haemophilia – a blood clotting disorder – who became infected with HIV this way.
Several thousand also contracted hepatitis C, another blood-borne virus that at the time was fatal.
Campaign groups such as the Haemophilia Society, and Tainted Blood, an organisation set up by Evans, argue that neither those treated nor their families were told of the risks as early as they could have been.
The inquiry, set up by UK government ministers in response to campaigners’ requests, seeks to establish when doctors and officials became aware of the risks of these treatments, and if any action could have prevented so many people becoming infected.
Evans’s father learned of the possible danger in 1983 from an article in New Scientist (pictured below). “It’s almost unbelievable that we had to find out through national news rather than through trusted physicians,” says Evans.
At a subsequent meeting with doctors, Evans’s mother asked if there was a risk. A doctor told her there was more chance of her son becoming debilitated with arthritis through not having treatment injections than of developing AIDS.
But at that time, any blood transfusion could potentially have been harbouring HIV. Injections for people with haemophilia carried an even higher risk because these treatments were made by concentrating clotting factors from the blood of up to 40,000 people. If only one of them had the virus, the whole batch was contaminated.
Safer, heat-treated products were available in the UK by 1984, but some people with haemophilia continued to receive older stock until 1985. Even before then, lives could have been saved if the clotting factors had been given only when strictly necessary to prevent bleeding to death.
Evans nearly died from AIDS in his teens, but his health improved when new antiviral medicines became available in the 1990s. Antiviral therapies now mean that many people with HIV can have near-normal lifespans and hepatitis C is curable. Yet these drugs came too late for the 3000 people with haemophilia who died of AIDS or hepatitis C.
“The contaminated blood scandal was a tragedy that should never have happened and has caused unimaginable pain and hurt for victims and their families for decades,” UK prime minister Theresa May said in a statement before the inquiry began. “Today will begin a journey which will be dedicated to getting to the truth of what happened and in delivering justice to everyone involved.”
The same day, the UK government also announced more money for England’s Infected Blood Support Scheme, which makes annual payments to some of those affected.
But the Haemophilia Society is unhappy that certain payments to bereaved spouses will still be means-tested. People should get compensation automatically, rather than having to apply for it “cap in hand”, the body said in a statement.
Evans says there have been two scandals: all the infections that could have been prevented and the subsequent treatment of those affected. “It makes me quite angry.”
More on these topics: