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Issues Affecting Specific Individuals

March 2009


New hepatitis C infections in HIV-positive gay men

In the UK, most cases of acute hepatitis C (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.

Long-term coinfection from blood products and injecting drug use

It is very common for people who became HIV-positive through blood products or sharing injection drug equipment, to also have HCV.

Most people in this situation have been living with both infections for many years.

New hepatitis C infections in HIV-positive gay men

In the UK, most cases of acute hepatitis C 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 hepatitis C is not easily transmitted sexually.

HIV clinics in London and Brighton have now reported over 300 cases of hepatitis C (HCV) among since HIV-positive gay men 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.

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

"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."

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

Risk factors

"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."

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

"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."
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.

Responses to a hepatitis C 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.

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.

"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.

"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 hepatitis C

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 is no coinfection support group yet. 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."

Long-term coinfection from blood products or through injection drug use

It is very common for people who became HIV-positive through blood products or sharing injection drug equipment, to also have HCV. Most people in this situation have been living with both infections for many years.

One activist said:

"Even though I was diagnosed in the early 80's when HCV was called 'non-A non-B', that diagnosis was irrelevant compared to HIV. Now it has changed: while HIV is often under control, HCV has become the main cause of death for co-infected people."

And others explained:

"I can't remember exactly when it was that I learned I had HCV but it was within a couple of years or so of receiving my HIV diagnosis and that was in early 1987. As an event, it pretty much went unnoticed as far as I was concerned. While I had experienced my HIV diagnosis as a devastating and life-changing blow, it barely registered when I was told I had HCV."

"The only people l told were other ex junkies who I knew were also being tested. Even though my family and friends knew that I was HIV-positive, I didn't consider HCV as big news."

For most of this time HIV was the most important health issue and HCV was just in the background.

Now, HIV treatments have kept people alive long enough to develop complications from HCV, and dealing with hepatitis C is now the most important health concern.

Many people have lived with hepatitis C for years, before there was an effective treatment available. This involved monitoring and generally delaying treatment for as long as possible.

This was partly because of the side effects, and partly because treatment does not work as well for HIVpositive people. Also, many people chose to wait for newer treatments to become available.

"I am hoping that in a year or so some of the drugs on the pipeline will prove to be more effective. I hope that my liver will hold that long. I am really not looking forward to starting treatment with what is available at the moment -- but I will do if that it is required. But I am fearful because my quality of life is gonna drop to the floor -- and for at least a year ... "

"Careful monitoring is really the key to safely being able to delay treatment, especially if your liver enzymes remain stable and scans show little fibrosis."

Hepatitis C transmission to sexual partners

Advice given to heterosexual couples about the risk of hepatitis C (HCV) infection emphasises that there is little or no risk from sexual transmission.

"For years, I was told that the risk of sexual transmission of HCV was very low, in fact recommendations for heterosexual couples in which one of them is HCV positive is not to use condoms."

"Since diagnosis with HIV we have practised safe sex by using condoms -- primarily because of issues of re-infection (especially as we are both on different combinations). But, we had unsafe sex for nearly 3 years and he's not HCV-positive ... "

"More recently, after my HIV viral load had been undetectable for several years, my partner and I stopped using condoms, although sometimes we worry about the potential risks of HIV and HCV infection."

Hepatitis C treatment in long-term infection

The approach to when to treat hepatitis C (HCV) is often different for people who have had HCV or HIV and HCV for a long time.

Getting the right balance between delaying treatment and not waiting too long is very difficult though because treatment is less effective if the liver becomes seriously scarred.

HCV treatment is difficult because side effects can make you feel more tired and unwell. This can interfere with work commitments and general quality of life.

HCV treatment can affect mood and increase depression. Some people use alcohol to cope with anxiety and depression in their life, even though alcohol itself causes depression and liver damage. Cutting out or cutting down on alcohol for the period of HCV treatment is a very good idea, since it may increase your chances of responding to treatment, even though it can be difficult.

Response rates to treatment are lower in people infected with HCV genotype 1 or 4. Some people choose to wait for better treatment.

If your liver has already been badly damaged by HCV, then treatment is more important.

Planning for treatment is important, and with support, many people can manage treatment well when they need it.

"I know people doing very well on HCV treatment, but at the moment, I don't feel strong enough to try it. The fact that there are new treatments coming in a few years, even though they will probably be added to the current treatment, has helped me to take the decision to check my liver every 1-2 years (by Fibroscan or biopsy) and wait for a better treatment options."

Access to treatment for drinkers and drug users

Access to treatment is also not always straightforward, especially for those people who are heavy drinkers or who are using heroin and other drugs.

"Working with a team is often essential if former and current drug users are to be able to understand and access treatment.

"Having the experience of sharing with other people who have the same kind of health problems helped me to make informed decisions. It helped me to know where the information was available. They helped me understand things that were not easily understandable -- because there's quite a bit of jargon there ...

"Peer support, by people who are co-infected and the coinfection clinic is crucial"

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This article was provided by HIV i-Base. It is a part of the publication Hepatitis C for People Living With HIV. Visit HIV i-Base's website to find out more about their activities, publications and services.