Long-term HIV/HCV coinfection

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

Importantly, modern HCV drugs (DAAs) mean that most people with long-term HCV can now be cured.

Having long-term coinfection might help you access DAAs early on. Please talk to your HIV doctor about this.

Most people with long-term confection have been living with both infections for many years.

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 coinfected people.

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.

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.

Some people decided against earlier HCV treatment because they did not have serious liver damage, because they were worried about side effects or because the success rate with older treatment was low. Many people chose to wait for newer treatments and have now been cured

Transmission to sexual partners

Advice given to heterosexual couples about the risk of 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 three 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

Treatment decisions

Deciding when to treat HCV should now be an easy decision.

Modern HCV drugs cure more than 95% of people with short-course oral treatment and few side effects.

The only factor that makes treatment difficult is getting access to these new drugs.

If you only have access to old HCV drugs – pegylated interferon and ribavirin – then getting the right balance between delaying treatment and not waiting too long is difficult. Treatment is less effective if the liver becomes seriously scarred.

Although guidelines all now recommend treatment with all-oral DAA combinations, some people are still only offered peginterferon and ribavirin.

If your liver has already been badly damaged by HCV, then treatment – even with peginterferon and ribavirin – is more important.

Planning for peginterferon and ribavirin treatment can make a big difference. With support, many people can manage treatment well when they need it.

Access to treatment, even with peginterferon and ribavirin, is not always easy, especially for those people who are heavy drinkers or who are using heroin and other drugs. (See HCV treatment and people who use drugs).

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-infectedand the co- infection clinic is crucial.

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.

Last updated: 17 August 2017.