Long-term coinfection from blood products or injection drug use

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

Most people in this situation 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 co-infected 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.

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 HIV-positive 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.

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 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

Treatment in long-term infection

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

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.

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 (see HCV treatment and drug users).

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-infectedand the co- infection clinic is crucial

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 types 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

fibrosis mild to moderate scarring of the liver