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Guide to Hepatitis C for People Living With HIV

Testing, Coinfection, Treatment and Support

August 2007

Issues Affecting People Living With HCV/HIV Coinfection

Acute HCV Infection in HIV-Positive Gay Men

"It changes how you think about sexual risk."

"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 onward transmission. 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."

"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."

"At the time I was diagnosed, I had been feeling really ill for about six weeks -- tired all the time, pains everywhere. My regular doctor 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."

"After diagnosis, I was determined to have the treatment immediately. ..."

"I needed not to be infectious. ..."

"... My concern turned to my partner, and I resolved to get rid of the HCV as quickly as possible. 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."

"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."

"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 as a result 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. As a result of this information I decided not to use HCV treatment at the 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 seventies, and I suspect that it will not be the HCV that kills me. Over this time I gamble that HCV treatment will improve."

Dealing With a New Diagnosis, Disclosure and Treatment Decisions

Outbreaks of acute HCV infection have been reported among HIV-positive gay men in the United States, the United Kingdom, France, and the Netherlands. Many of these cases were sexually transmitted. In the United Kingdom, HIV clinics identified many cases of acute HCV through routine monitoring of liver enzymes, which is required during HIV treatment.

These men were open about their HIV status and selected other HIV-positive men as sex partners, as part of their choice to responsibly deal with HIV. Unfortunately, the lack of information about sexually transmitted HCV meant that they did not know that they were at risk, or how to protect themselves and their partners.

Being diagnosed with HCV after many years of living with HIV can be very hard to deal with. Some people say it brings back feelings they experienced when they were diagnosed with HIV.

The advantage of finding hepatitis C infection during the acute phase is that treatment is more likely to clear the virus. This is especially important for people who have a harder-to-treat HCV genotype, such as 1 or 4. But the decision to treat early -- although medically recommended -- needs to be balanced against a person's life circumstances, concerns about how they will deal with side effects of HCV treatment, the risk of developing liver damage in the future, and optimism that newer, easier-to-tolerate drugs may become available in the next five to ten years. Some people choose to treat their HCV as soon as possible, to reduce further sexual transmission.

Chronic HCV/HIV Coinfection

Living With HIV and Hepatitis C Over the Long-Term

It is very common for people who became HIV-positive through blood products or sharing injection drug equipment to also be infected with viral hepatitis, including HCV.

Most people in this situation were likely to have been infected with HIV and HCV around the same time, and many have been living with both infections for many years.

Many people in this situation are concerned about the higher risk of HCV-related complications and liver damage due to the fact that they've had HCV for so long. Long-term coinfection may tilt the balance in favor of hepatitis C treatment.

HCV Transmission to Sex Partners

Heterosexual couples are often told that they are at little or no risk of sexually transmitted HCV.

When one or both partners are coinfected with HIV, assessing risk becomes more complicated. Although being on HIV treatment and having an undetectable viral load reduces the risk of sexual transmission of HIV, it does not provide complete protection.

Treatment Decisions

The choice about when to treat HCV is different for people who have had either infection for a very long time.

HCV treatment is difficult because most people get side effects that make them feel more tired and unwell. This can interfere with work and family commitments and with general quality of life. HCV treatment can affect mood and increase depression. Some people use alcohol to manage anxiety and depression, even though alcohol itself causes depression and liver damage. Cutting out -- or cutting down on -- alcohol during HCV treatment can be difficult but very beneficial. Since response rates to treatment are lower in people infected with HCV genotype 1 or 4, some of those people choose to wait for better treatment.

If your liver has already been badly damaged by HCV, then treatment is more important. In order to find out whether this is the case, you need to have some of the diagnostic tests discussed in the following pages.

Planning for treatment is important. With appropriate support, many people can manage treatment well when they need it. Many say that peer support is essential.

Access to treatment is not always straightforward, especially for uninsured people, and people who are using drugs and alcohol (see "HCV Treatment and People Who Use Drugs").

"Even though I was diagnosed in the early '80s 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."

"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. 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 I 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 big news."

"I am hoping that in a year or so, some of the drugs in 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 will do if that is what is required. But I am fearful because my quality of life is gonna drop to the floor -- and for a long period. ..."

"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."

"For years I was told that the risk of sexual transmission of HCV was very low. In fact, condom use is not recommended for heterosexual couples in which one partner is HCV-positive."

"Since [our] diagnosis with HIV we have practiced safe sex -- condoms -- primarily because of issues of HIV reinfection (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."

"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 one to two years (by FibroScan or biopsy) and wait for better treatment options."

"Having the experience of sharing with other people who have the same kind of health problems -- it 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 coinfected and the coinfection clinic are crucial."

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This article was provided by Treatment Action Group. It is a part of the publication Guide to Hepatitis C for People Living With HIV.