New HCV infections in HIV positive gay men
Since 2005, most cases of acute HCV in HIV positive people have been among gay men.
The majority of these cases occurred from sexual exposure. This raised new issues of disclosure that was often difficult because of prejudice and fear over HCV.
Although early treatment can cure HCV and reduce further transmission, access to DAAs might take time. Also, being cured once does not protect against HCV reinfection. Access to free DAAs in the UK after HCV reinfection is unlikely.
At the time I was diagnosed, I had been feeling really ill for about six weeks – tired all the time, pains everywhere. My GP failed to diagnose it but my HIV clinic picked it up straight away. In a way it was a relief because at last I knew what was causing it.
Even though the UK has had public health campaigns about sexually transmitted HCV for gay men, awareness of HCV is still low.
For some people, the impact of HCV may be lessened because they see HIV as more serious. But for many, being diagnosed with HCV after many years of living with HIV is traumatic.
It was like getting an HIV diagnosis all over again. It changes how you think about sexual risk.
Many positive gay men are open about their HIV status and chose positive partners so that HIV is not a problem.
HIV-related discrimination from negative or untested men may also have lessened. This is due to the growing awareness that an undetectable HIV viral load dramatically reduces the risk of sexual transmission.
An HCV diagnosis changes this – although the high cure rates with modern HCV drugs (DAAs) means that HCV should not be a long-term problem.
Until your HCV is treated, the lack of information about risk and protection makes HCV disclosure more complicated than HIV. Stigma against an HCV diagnosis is now more likely to affect your social and sexual network, than HIV.
… prior to the HCV infection, I had a reasonably active sex life, mostly with other HIV positive men. In these circles, the issue of HIV disclosure is resolved by the simple fact that everyone is HIV positive. However, because I do not really understand how I acquired my HCV, I am less clear about how to protect others from sexual transmission.
I suspect that disclosure within the group of HIV positive men would be very similar to disclosing ones HIV status to a prospective sexual partner who was HIV negative, indeed, maybe harder because of the lack of understanding over what steps to take to protect them. The solution of finding other men in a similar position to mine means that my sexual partners would have to come from an even smaller group than they do at present.
Exposure to hepatitis C is more likely if sex involves higher risk or trauma from rougher sex or from fisting, and this is often more likely if some recreational drugs are used. Because HCV is so infectious, it can also be more easily spread during group sex than HIV.
An analysis from the London and Brighton hospitals reported the following risks for HCV sexual transmission:
- Being HIV positive.
- Recreational drug use.
- Group sex or sex parties
- Sharing sex toys.
- Rougher sex (longer fucking or fisting).
- Barebacking (insertive or receptive anal sex without condoms).
- Other STIs (especially syphilis).
- Meeting partners online.
- Number of partners.
- Rectal bleeding from surgical procedures and/or rough sex.
HIV is a key factor in these cases of sexual transmission. This is likely to be related to the higher hepatitis C viral load in blood and possibly semen, in people with coinfection. As many of these experiences overlap there are limitations in trying to identify the exact cause or route of infection.
Another study suggested that the risk of HCV increased six-fold in people who get fisted compared to people who don’t fist.
It is also important to remember though that people can also catch HCV without fisting and without using recreational drugs or taking part in group sex.
There is so little information on the exact mechanism for HCV sexual transmission, and so little awareness amongst gay men or knowledge about what is safer HCV sex for an HIV-positive man that many people stop having sex until their HCV is cleared
Responses to a diagnosis
Responses to an HCV diagnosis are individual. The stigma and lack of information about hepatitis C can make an HCV diagnosis more difficult than HIV.
I immediately told my partner and two fuck buddies who I was concerned I had put at risk. All were tested but none were infected. I also told my immediate family but that was all … I decided not to tell my casual sexual partners – many men “don’t ask, don’t tell” and it was never an issue. I didn’t tell any of my friends because of possible stigma and I hoped the treatment would cure me and could put the whole experience behind me. As my partner and fuck buddies had not become infected, I decided that bareback sex alone was not enough to transmit it.
Advantages of detecting acute hepatitis C infection
Modern HCV drugs (DAAs) cure more than 95% of people with first treatment. So early diagnosis is better for getting earlier treatment and preventing other infections.
The chance to clear HCV and protect sexual partners can be an important reason to use treatment – especially with DAAs.
Acute HCV can sometimes progress rapidly in people who are already HIV positive, but this is controversial. HCV progression depends on many factors and some people may already have liver damage from other causes before they become infected with HCV.
However, DAA treatment does not protect against HCV reinfection. Currently in the UK, retreatment is not available for people who become reinfected.
Six months after treatment I feel very lucky to have a sustained virological response. I had all the side effects during treatment, and it truly was the worst time in my life, but it was all worth it.
Living with HCV
There is an increasing awareness about HCV in the gay community, especially among HIV positive men. But a new HCV diagnosis can be difficult and some people say it felt like getting their original HIV diagnosis again.
Living with HCV has been difficult. When I discovered my HIV infection, I told almost no one. When I discovered my HCV infection I told too many people which I now regret since it means I have less control over who knows and who does not.
But again there are many approaches to dealing with a new HCV diagnosis:
I regret not relying on my friends for support, because I know it put an enormous burden on my partner who had to juggle being both partner and sole carer for me. I know I am not an easy patient. I don’t think I could have done the treatment if it had not been for the unflinching support of someone who was totally devoted to me.
It is easier to talk about HCV once you feel stronger, or after a successful response to treatment. As with HIV, knowing other people in the same situation may be the most positive support.
There was no co-infection support group when I first went. I was the only HIV positive man at a group run by the Hepatitis C Trust… but it was tremendously useful. I got just as much from helping other people as I did from their support. They also run a fantastic helpline and everyone there has or has had hepatitis C and they really understand what support means.
Hepatitis C Trust helpline and support groups
0845 223 4424 – Monday to Friday: 10.30 to 4.30pm. Calls are charged at the national rate.
The Hepatitis C Trust run support groups that are women-only, men-only and mixed. They also run a Gay Men’s support group and a group for gay men co-infected with HIV and HCV. For information on support groups see their website.
genotype way to categorise different strains of hepatitis C viruses.
SVR sustained virological response – having a negative HCV viral load test 6 months after stopping HCV treatment – effectively being cured of HCV.
Last updated: 17 August 2017.