Pivot Point caught up with Benji to hear his story about living with hep C. Hepatitis C (hep C) is an inflammation of the liver caused by infection with the hep C virus. It is estimated that in Australia, around 230,000 people are living with hep C. Hep C is passed on through blood to blood contact and it is not usually considered a sexually transmitted infection, however if there is blood to blood contact during sex, hep C can be passed on.
Hey Benji. First of all, tell us a bit about yourself.
Hi! I’m Benji, I’m a gay Asian man living with HIV. I used to consider myself a party pig in my mid–to–late 20s but as life has got busier and other priorities have been set, I’ve decreased my frequency of sexualised drug use to a couple of times per year.
My drug of choice is meth and I usually inject it.
How did you contract hep C?
I don’t know exactly how I got hep C. I was quite shocked when I got the diagnosis because I didn’t perceive myself to be at risk. I knew that hep C was associated with injecting drug use and I had not injected drugs (at that point in time).
Turns out there were a few risk factors for me: I had fuck buddies who injected drugs, and I was engaging in group sex as a bottom and some of those sessions went for hours. It is possible that I had small abrasions or tears inside my arse. I had also shared douching equipment and a toothbrush with my fuck buddy (who I found out years later was hep C positive at the time we were fucking).
Unlike HIV, hep C can live for a long time (editor’s note: up to two weeks) outside of the body, so anything with even a spec of my fuck buddy’s blood on it (lube, sex toys, fingers) could have transmitted it to me via arse play.
How did you discover you were living with hep C?
A routine BBV/STI blood screening at a sexual health clinic. Just six months before I had been diagnosed with HIV, and the hep C blood test was part of my HIV and STI tests that I was having every three months.
I got a call from a nurse to come in and discuss some liver test results. I had no idea what the connection between HIV and my liver was – it turns out it had nothing to do with HIV and was that I was hep C positive.
How did it feel to be diagnosed? Did you have any symptoms?
A few weeks before the diagnosis, I had been at an exhibition opening at the National Gallery of Victoria. I got invitations to opening nights at galleries and the theatre regularly due to my work, so I was good at drinking lots of complimentary sparkling wine!
At this exhibition, I had noticed that I was quite intoxicated from just half a glass of bubbles. I had dismissed this at the time, thinking it was from drinking alcohol on an empty stomach.
In fact, my low tolerance for alcohol was related to the hep C. I gave up alcohol for six years until I got cured of hep C, and turns out I don’t really like drinking alcohol that much now. It’s hard to say what the impact of hep C was other than the alcohol tolerance.
The psychological impact was probably the hardest to deal with. First, I was dealing with not knowing I was at risk and feeling incredibly stupid and confused because I wasn’t able to contact trace (my fuck buddy had gone off the radar). Second, I was dealing with the feeling of living with two blood-borne viruses. I felt diseased and dirty. Third, was the stigma from myself and people in our community around hep C and injecting drug use.
Tell us about accessing treatment?
I accessed the old treatments soon after my hep C diagnosis. I don’t want to go into it too much, because the treatment was intense, and it failed to clear my hep C. There are better treatments available now.
I was lucky enough to access the new treatments for hep C when they first became available in 2016. I took one tablet per day and in 12-weeks had cleared hep C.
I had next to no side effects – it was such an easy treatment compared to what I had experienced five years earlier.
Do you have any advice to others about hep C?
When I was diagnosed, it was among a cluster outbreak of hep C among gay and bisexual men with HIV in Sydney and Melbourne. Similar outbreaks had happened in other major western cities in the USA, UK and Europe.
These hep C cases were mostly related to sexual transmission of hep C. Community organisations and researchers thought that living with HIV placed us at greater risk than our HIV negative peers.
Since the rapid increase in things like treatment as prevention for people living with HIV and PrEP for HIV-negative people, there has been an overlap in our sexual networks and with condomless sex, particularly in group sex and sexualised drug use settings. Hep C has started to be transmitted among HIV-negative men.
There is not cause for alarm, rather that we need to understand the risks and take appropriate precautions.
The other important note is that you don’t know your hep C status unless you get tested. For HIV negative men on PrEP, consider asking for a hep C test next time you test for HIV.
To read more about preventing hep C while injecting drugs and having sex, check out our blog.