Living With Hepatitis - A Patent's Perspective Part 1

Ben -   The scientific developments by Professor McKeating's team don't just help us with treating the diseases; the more we understand the virus, the less fear we hold.  This is especially true for those who are suffering from the disease.  So I spoke to Wendy to find out what brought her to the World Hepatitis Day event.

Wendy -   Well, I had hepatitis C for approximately twenty years.  I had treatment five years ago and I've been clean ever since, you know, clear of the virus should I say.  And I have a lot to do with the Hepatitis C Trust; I go to conferences, I've helped set-up a Hepatitis C support group, and they just invited me along today so I thought it would be a really good opportunity to see how the other side works, really, and what progress there is and what new things are going to come about to help people with the virus.

Ben -   We've heard today that in the course of the last twenty years there have been some very dramatic leaps forward in the understanding the science of hepatitis C.  As someone who suffers from the virus, do you appreciate being told all the nitty-gritty; is it helpful for you to know some of this deep science?

Wendy -   Yeah, I think so.  Twenty years ago, when I was first diagnosed, they phoned me up and said I needed to come to the liver unit because I had this hepatitis C virus.  I phoned my dad and I told him and he said I think it's something to do with AIDS.  That was my first thought.  For my first three years I was back and forth from the liver unit and twenty years ago they didn't really tell you a lot.  I didn't really understand what it was, anything about it, so I walked away and forgot about it, basically because I didn't know the implications of it.  So for five to seven years I walked around forgetting that I'd got this virus because I didn't really know anything about it; maybe it's I didn't want to know, I don't know but I think not enough was said to me to understand.  They may have told me but on my first appointment I didn't really have a clue what they were on about so I think people really need to know because it gives them more of an understanding as to the seriousness of it and the implications of having it long-term.  I think the media are getting better with it now but I still don't think it's enough to let people to know how serious it is.

Ben -  So you would support World Hepatitis Day from both a personal and professional view.

Wendy -   Oh, absolutely, absolutely.  I work for a drugs service.  We have approximately 800 clients.  We recognise that approximately 25% of those have got the hepatitis C virus and we haven't even tested all of them.  It's just so scary because of the amount of clients that are walking around that don't know that they've got it, that could be infecting other people that haven't got it, and I just think it's really scary and I don't think they understand.  The majority of people that you talk to will say "oh, that's that thing that kills you, isn't it?"  Well no, not necessarily, but left untreated it will really have a detrimental effect on your health in the long-term.  They just don't really understand.

Ben -   And having just had a tour of the research facilities here do you think you'll encourage more people, both healthy and people who have hepatitis, to actually get involved in the research?

Wendy -   Yeah, definitely, you know it's just about raising awareness from my point and coming to places like this and having tours and speaking to clinical directors and research students, it gives more people an insight and I'm excited now because I know that there's more research being done and they're becoming more better treatments for people; if they have more treatments for people then there's a better success because, at the moment, a lot of people are failing the treatment because of the side effects because they just can't manage it so, if we can make that easier for people then more people can  get treated.  I mean, we can't treat 50% of our clients that I work with because of their chaotic lifestyles, the support network they don't have and the vulnerability.  We couldn't contemplate putting them on treatment because they'd fail because of the extent of the side effects that it has on people, you know, we need to be looking at making it easier for people to have treatment.

Ben -   Wendy's position, not only a former patient but actively working with hepatitis patients in the community, highlights one of the benefits of World Hepatitis Day.   It's a unique opportunity for researchers and clinicians to communicate with patients and that means that everyone can benefit.