When Roger Newman was just 10 years old, doctors told his parents that his haemophilia could now be treated with a commercial blood product promoted by the drug industry as a wonder treatment.
Instead of regular trips to the hospital, the freeze-dried plasma concentrate could be kept in the fridge and administered at home. Parents were given training on mixing the white powder with purified water and injecting their children.
These commercial blood factor VIII protein treatments, introduced in the UK for Roger and others in the 1970s, seemed like a lifeline for those suffering with haemophilia – but they were contaminated with HIV and hepatitis.
Roger, who lives and was brought up in Kent, was first infected with hepatitis B by the dirty blood product, becoming so weak with jaundice he needed to be carried around by his mother.
In 1984, when he was 15, he was told he had been infected with HIV.
“I later saw an article with all the warnings about Aids. I said, ‘Mum, is that me?’ And she said, ‘Yes’. I felt something inside me died. I then remember my consultant saying, ‘You’ve probably got two years to live.’
“I felt like someone had punched me in the stomach. I felt completely powerless. I also felt almost this sense of shame because of the stigma around the disease at that time. It felt really scary.
“I tried to focus on anything that would stop me thinking about it, but it still haunts you. I started to hear of people who were dying and I had this fear of the awful symptoms.”
Roger, 56, a psychotherapist who is married with three children, is now being successfully treated.
“The awful side of this is that you’ve got all these parents, usually mums, who were unknowingly injecting their children with this killer virus,” he said. “You can’t imagine how that must feel as a parent.”
Cherry Nurse, 67, from Thame, Oxfordshire, lost both her brothers – John, who died in May 1989, and Paul, who died in September 1994 – after they were infected with HIV from the commercial blood protein treatment. They were both young men when they died.
“My mum learned how to do the injections and did them all at home,” she said. “She blamed herself to the day she died because she gave the injections that killed them. My mum and dad never got over it. They were brilliant parents and loved those boys.”
Chris Smith, 46, a sales director from Blunham, Bedfordshire, lost his father Raymond Smith in January 1986, aged 32, as a result of HIV infection from contaminated commercial blood product.
Smith said: “When I look at the few pictures we’ve got I can see him wasting away.” Smith’s father was admitted to hospital on 2 January 1986 and died five days later.
“It has made me look at life in a very different way,” said Smith. “I think there was gross negligence at every level. We lost out on living the life we should have lived and I’m surprised we got out the other side.
Stuart Cantrill, 50, an editorial director, lost his father Barrie Cantrill from the deadly treatment which infected him with HIV. Stuart said when he was first told of the diagnosis he was physically sick.
He was told not to get too close to his father or even kiss him on the cheek. In a statement to the infected blood inquiry, he said: “We didn’t really talk about the fact my father was dying, but I remember my parents were worried about would happen to me. I remember my father crying in the hospital and not knowing why.”
Barrie died aged 48 on 26 August 1989 as a result of HIV infection carried by the factor VIII products.
Most patients who were treated do not believe they or their families were properly warned of the risks. They say the infected blood inquiry, which is due to report next month, has been a painful experience, but they hope it will expose the scale of the tragedy and the negligence which led to so many deaths.
“I don’t think we’ll ever get full accountability,” concluded Chris Smith. “But hopefully brighter days are coming.”
