Hepatitis C diagnosis was often given in a very casual manner. Many recalled the information being given as a vague part of another conversation or by a photocopied letter. Many were not informed for many years after the diagnosis was apparent.
There was a blasé attitude towards hepatitis C by the patients and by the medical profession all believing HIV was a far greater concern. It was believed that few with HIV and haemophilia would live to experience any long term liver damage due to hepatitis C infection.
In the late 1990s, when HIV became a more manageable and treatable condition, hepatitis C became a realistic health concern. Many people interviewed had recently undergone treatment for hepatitis C and recalled the horrors of side effects and disappointment of its failure to cure.
Andy: Recently the government launched this Hepatitis C awareness campaign, which had to make me laugh, you know? They weren't that keen on raising awareness when they filling haemophiliacs full of hepatitis and testing us all and using us as guinea pigs in the 70s and 80s, but now they're a caring, sharing government and they want to raise awareness. But to my mind, they're lying murderers, basically.
Catherine: I had to do it! I wanted to get to the end and I wanted to be Hepatitis C negative. I'd rather die having my teeth pulled and my nails pulled out than go through that treatment again! The reality was I couldn't keep my eyes open. I could not function and I was surly and miserable and tired all the time. I just wasn't safe to do anything on my own. I don't think I've ever felt so disorganised or totally and utterly useless.
Dave: The Interferon is an injection once a week into your stomach that you self-administer and the Ribovirin is tablets twice a day. So, as well as my other tablets I was taking, I had to remember to take my Ribovirin tablets and then once a week inject myself into the stomach. But before I went on it, the specialist nurse at the hospital said: 'You will get side effects, it's just like flu-like symptoms.' But when I started it, it knocked me sideways. I was on it for six months. I lost four stone. I was lucky if I got an hour's sleep a day. I was aggressive. I didn't eat. It was just a nightmare. My hair was falling out. It was like I was somebody else; it was the worse six months of my life.
Mick: I'd never really blamed the hospital before about the HIV and the Hep B, but I think after that letter it was like - you were giving me frigging everything, you know? You give me Hep B, Hep C, HIV. It just keeps coming. So I distanced myself from the hospital quite a bit.
Mike: When I was told about it, I really honestly didn't give a shit, because I thought, 'I've got HIV. That's enough for me to be getting on with. There's no room in my brain to think about this.'
Stuart G: Because I was expecting to die from AIDS, the fact that I had hepatitis wasn't really an issue. So it's only in the last few years that HIV's stabilised more for me, that I'm aware that hepatitis is a bit of a problem, actually, and I'm more likely to die from hepatitis now than HIV.