At the end of the day, Jules regarded the researchers as the unsung heroes of hepatitis treatment but I found out what had attracted him to the event in the first place.
Jules - For more awareness about hepatitis C and to see what goes on on the other side, which I found very interesting. Because I think the research people are the sort of the unsung heroes, shall we say.
Ben - And, you actually suffer from hepatitis C, how long have you been suffering?
Jukes - 25 years, 26 years, Iím not really sure.
Ben - And in that time, as weíve seen today, thereíve been some huge advances but still, relatively little is known and itís great that we have opportunities like this. And do you think more people should find out about the clinical research and the science behind it?
Jules - I think so, yeah, because people arenít so scared of whatís going down. Because a lot of people are ignorant, shall we say, of whatís hepatitis C and the causes and the facts and people think you can catch it by holding hands with somebody whoís got it and thatís not the case. And this sort of thing brings awareness from both sides.
Ben - And obviously itís very much in your interest as well as in the publicís interest that we find new treatments and new cures
Jules - Well, without a cure Iíd be dead. If you get it and you donít get treated, somewhere along the line youíre going to die and thatís as easy as...
Ben - So how have you been treated for hepatitis?
Jules - Iíve had liver biopsies, Iíve had the early stage interferon when it was first under development, I had to give myself three injections a week and lots of tablets and that wasnít very nice. That failed. Then a few years later I took a second course of interferon for 18 months, which was pegylated so I had to have only one injection a week. That wasnít quite so bad but still not pleasant. And Iíve got twenty weeks left, now, of my third course of interferon, so far so good. You can have nothing in your body and then all of a sudden the treatment stops and itís back and theyíve got to give you something else. But you know youíve just got to keep trying and trying. Youíve got to be a pretty clean liver, just keep yourself focussed and thatís all you can do isnít it?
Ben - And itís also very important that people get tested, as you said thereís a lot of stigma. Thereís even stigma about having a test.
Jules - Well, if theyíve ever had tattoos, shared a needle or anything else then they should have a test because you never know. You could be walking around thinking youíre happy as Larry, sound as a pound but, unbeknownst to you, youíve got this virus inside your body that wonít really do anything for ten, fifteen, twenty years and then itíll hit you like a tonne of bricks.
Ben - And in that time not only are you becoming more ill but also youíre quite likely to be passing it on.
Jules - Well, this is the one. If youíre aware yourself. Say youíre in an intravenous drug-taking clique, if youíve got it, all your friendsíll have it and nobodyíll know. Itís just an ignorance thing isnít it?
Ben - Do you think that the fear of the treatment and itís side effects is something that keeps people from being tested?
Jules - Perhaps, but I donít think people realise about the treatment. I think the initial stages, a liver biopsy, thatís sounds very scary to a lot of people, you know, they wonít even go there. But once youíve had the liver biopsy, thatís the easy bit, shall we say. The treatmentís not pleasant, but you know youíve just got to grin and bear it. Because, like I say, itís either take it or donít take it. Itís live or die, so where do you go?
Ben - So what do you think is going to be the future both from your perspective as someone who is looking for ways to control and treat the hepatitis but also what do you think based on what youíve seen today is going to be the next step?
Jules - Well, I think the next step is going to be amazing. The technology is coming on in leaps and bounds, the researchers, theyíre getting there. What Iíve seen today has shown to me that theyíre making massive leaps and advances in the discovery of this virus and, you know, how to combat it which is very tricky. Itís a cuckoo in the nest isnít it; do you know what I mean?
Ben - And that cuckoo in the nest may yet be flushed out.