Fear and stigma creating hepatitis C transmission risk for HIV-positive gay men

Michael Carter
Published: 25 September 2008

Stigma is contributing to the sexual transmission of hepatitis C virus amongst HIV-positive gay men, a small qualitative study published in the journal Culture, Health and Sexuality suggests. The study revealed that the fear and stigma surrounding hepatitis C means that gay men are engaging in sexual activities with a high risk of hepatitis C transmission and are reluctant to disclose or discuss hepatitis C infection.

The investigator suggests that efforts should be made to counter the stigma that surrounds hepatitis C amongst gay men, and to provide targeted information about the risks of sexual transmission of hepatitis C to gay men with high risk sexual behaviours.

Outbreaks of sexually transmitted hepatitis C have been reported amongst HIV-positive gay men in the UK and across Europe. Sexual behaviours linked with the sexual transmission of hepatitis C in this population are fisting, group sex and unprotected anal sex.

Significant numbers of HIV-positive gay men select sexual partners who are also HIV-positive, a practice called “serosorting.” Although this can avoid the risk of infecting a partner with HIV, it can involve a risk of other sexually transmitted infection, including hepatitis C.

Both HIV and hepatitis C are stigmatised illnesses, arising from the potentially life-threatening nature of the infections and their association with lifestlyes that are often perceived as “deviant.”

Earlier research suggests that stigma can affect the willingness of individuals with HIV or hepatitis C to disclose their infection.

Dr Gareth Owen therefore designed a pilot study to determine the emotional experiences of stigma of HIV-positive men who were either coinfected with hepatitis C or had received successful treatment for the infection.

Six in-depth interviews were conducted in London with men aged 32 – 43. All the men had risk factors for the sexual transmission of hepatitis C, including fisting, unprotected anal intercourse and group sex. These activities often occurred within the context of private sex parties where recreational drugs were consumed. Serosorting was reported by all six individuals.

All the men attributed their hepatitis C infection to fisting, although this activity had occurred within a context of other activities that potentially involve a risk of hepatitis C transmission, including group sex, and the sharing of lubricant, sex toys and tubes to snort recreational drugs.

“Feeling” stigmatised because of hepatitis C was common amongst the six men. One individual reported that these feelings were often worse than the physical effects of the infection: “I think how it makes you feel is worse than the actual thing itself…The fear of rejection, the fear of the stigma and all that is actually more toxic than the disease itself.”

The study participants said that fear was the most important factor leading to the stigmatising of hepatitis C. This fear was attributed to a lack of knowledge about hepatitis C, fear of contagion, fear that hepatitis C would complicate existing HIV infection, fear of the impact of hepatitis C on lifestyle behaviours such as drug and alcohol use, fear of hepatitis C treatment, fear of rejection (particularly sexual rejection), and fear of death.

“I think that hep C is the big new white elephant in the room”, said one participant, “I think that gay men are afraid of hep C and I think that’s because they don’t seem to know much about it, except maybe it kills you.”

One man told of his sexual rejection because of his hepatitis C infection: “the guy who rejected me had heard about the implications of coinfection. It’s very bad news because you have to stop drinking and taking drugs.”

Diagnosis with hepatitis C was associated with shame and guilt, adding to its stigma. One individual told the investigator: “I felt grubby. I felt scanky. I felt isolated. I felt lonely…it’s the shame: the shame, secrecy, stigma and everything else.”

A diagnosis of hepatitis C was perceived as excluding men from the “cameraderie of just being HIV-positive.” This was illustrated by the comments of one of the study’s participants: “Hep C is not yet owned by the gay community like HIV, and if it isn’t owned, then it is outside and more stigmatised…Even within the gay community, and the HIV community too, it has created a ‘them’ and ‘us’ type situation.”

Stigma meant that men were not discussing hepatitis C with their sexual partners or disclosing their infection. One man said that HIV was not considered a “such a big deal” for HIV-positive men engaging in serosorting behaviours. However, “this hep C thing is a big issue. People are scared of it but nobody is talking about it.”

Another individual said, “I’ve never had anyone disclose their hep C to me yet in a sexual situation.”

There was also confusion about hepatitis C, with some men reporting that men in their sexual milieu were confusing the infection with hepatitis B.

Several of the men indicated that stigma was silencing discussion of hepatitis C amongst HIV-positive men with a high risk of sexual exposure to the virus. “Stigma silences things and that allows more stigma to build in that silence”, said one individual, “but you can understand why people have to remain silent because the stigma is there in the first place.”

Although the investigator acknowledges that the small size of his sample is a limitation of his study, he believes it “adds depth” to the evidence showing that HIV-positive gay men require health promotion information about hepatitis C.

Based upon his research he proposes a model where the fear of hepatitis C causes hepatitis C to be stigmatised by HIV-positive gay men. This fear leads to sexual rejection should hepatitis C be disclosed, with this sexual rejection leading to shame and more fear, which in turn leads to silence and non-disclosure. “This creates transmission risk in situations where HIV-positive men have serosorted and to engage in unprotected sexual practices.”

Dr Owen concludes that more needs to be done to counter the stigma surrounding hepatitis C amongst gay men and that HIV-positive men should receive targeted information about the risks of hepatitis C transmission from fisting and other sex practices that can cause mucosal bleeding.

Reference

G. Owen. An ‘elephant in the room’? Stigma and hepatitis transmission among HIV-positive ‘serosorting’ gay men. Culture, Health and Sexuality 10: 601 – 610, 2008.

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