New HCV infections in HIV-positive gay men

In the UK, most cases of acute HCV infection in people with HIV have been reported among HIV-positive gay men.

The majority of these cases occurred from sexual exposure, even though large studies in heterosexuals have shown that HCV is not easily transmitted sexually.

HIV clinics in London and Brighton have now reported over 400 cases since 2003. In many of these cases, HCV has only been found because routine monitoring required during HIV treatment picked up increases in liver enzyme levels.

At the time I was diagnosed, I had been feeling really ill for about 6 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.

This has led to several public health campaigns for gay men, although awareness of HCV is still low.

The experience for many people of being diagnosed with HCV after many years of living with HIV is very traumatic, and is not helped by the lack of information about which risks are related to HCV transmission. For other people, the impact of HCV may be underestimated because they still see HIV as being more serious.

It was like getting an HIV diagnosis all over again. It changes how you think about sexual risk.

It is also complicated on a personal level because many of these men were open about their HIV status and chose other HIV-positive partners as part of a choice to responsibly deal with HIV. An HCV diagnosis often means contacting previous partners to advise them of their risk of HCV.

… 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. Consequently, my sex life has declined dramatically and I see no sign of it improving.

People would like to protect themselves and each other, but often do not have accurate information to use to make these decisions.

I suspect that disclosure within the group of HIV-positive men would be very similar to disclosing one’s 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.

Risk factors

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
• Unprotected anal intercourse
• Sharing sex toys
• Rougher sex (longer fucking or fisting)
• Group sex or sex parties
• Number of partners
• Recreational drug use
• Other sexually transmitted infections (especially syphilis)
• Meeting partners online

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, and are not helped by a general stigma and lack of information about hepatitis C.

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.

Advantage of detecting acute hepatitis C infection

The advantage of detecting acute HCV (within 6 months of infection) is that there is a higher chance of clearing HCV with treatment, especially for harder to treat infections with HCV genotypes 1 and 4. HCV may progress more rapidly in people who are already HIV-positive.

The chance to clear HCV and protect sexual partners can be an important reason to use treatment.

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.

The decision to treat early – although recommended because of higher clearance rates – also needs to be balanced against the side effects from HCV treatment. Some people do not treat early because of the hope that easier to tolerate drugs may become available in the next 5-10 years.

Deciding on treatment for the HCV was a difficult process. I have an excellent relationship with my HIV doctor but there was considerable pressure from the HCV specialist for me to start treatment immediately. Because I have lost the sight in one eye because of CMV in the 1990s, I also consulted my ophthalmologist. She told me that the current HCV treatment carries a risk for a minority of people of causing fuzzy spots in the eyes. Because of this information, I decided not to use HCV treatment at that time. I was not willing to risk any further damage to my eyesight. I do not drink, which will hopefully slow down the progression of any  liver damage. In twenty years I will be in my 70s and I suspect that it will not be the HCV that kills me. Over this time I gamble that HCV treatment will improve.

Living with HCV

Lack of information about HCV in the gay community, even amongst HIV-positive men makes a new diagnosis difficult at a time when you need most support. 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

0870 200 1 200, Monday to Friday, 12.00 to 6.00pm, Thursday, 12.00 to 7.00pm. 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 support group for gay men co-infected with HIV and hep C.

Glossary

genotype type 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