Issues Affecting Specific Individuals
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.
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.
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.
"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.
People would like to protect themselves and each other, but often do not have accurate information to use to make these decisions.
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:
"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 an HCV diagnosis are individual, and are not helped by a general stigma and lack of information about hepatitis C.
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.
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.
But again there are many approaches to dealing with a new HCV diagnosis:
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.
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:
And others explained:
"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.
Advice given to heterosexual couples about the risk of hepatitis C (HCV) infection emphasises that there is little or no risk from sexual transmission.
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.
Access to treatment is also not always straightforward, especially for those people who are heavy drinkers or who are using heroin and other drugs.
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.