Qualitative research with HIV-positive gay and bisexual men in Australia who had been cured of hepatitis C infection revealed that having hepatitis C was more stigmatising than HIV infection. While being a member of certain social and sexual networks increased the chances of reinfection with hepatitis C, leaving these networks and abstinence from drug use could lead to social isolation.
Engagement with treatment services for hepatitis C often led to a better understanding of hepatitis C infection risks and an improvement in strategies to avoid reinfection. Participants also reported that engagement in hepatitis C care encouraged a reduction in sexualised drug use (often called 'chemsex' or 'party ‘n’ play'). This was reported in the Journal of the International AIDS Society by Sophia Schroeder and colleagues at the Burnet Institute in Melbourne.
Hepatitis C co-infection in gay men living with HIV has been on the rise in Europe, Australia, Asia and North America over the past decade. Specifically, gay men who inject methamphetamine and engage in condomless group sex are at greater risk for co-infection with hepatitis C. Stigma around hepatitis C (linked to stereotypes regarding drug use and the type of individual who may have hepatitis C) limits conversations pertaining to infection status, knowledge about hepatitis C diagnosis and management.
Hepatitis C can be cured with direct-acting antivirals and this treatment has been publicly subsidised for all with hepatitis C in Australia since 2016. However, reinfection after successful hepatitis C treatment is common due to repeated exposure to risk factors involved with hepatitis C. While the scale-up of treatment could lead to a possible elimination of hepatitis C, repeated reinfections seen in a sub-group of men indicate the need for more research into the social and behavioural factors linked to reinfection, as well as men’s perceptions and attitudes towards reinfection with hepatitis C.
Fifteen men who were living with HIV and had been cured of hepatitis C were recruited for this qualitative study through their participation in a clinical trial in Melbourne. The aim of the clinical trial was to assess the possibility of the elimination of hepatitis C using a treatment-as-prevention approach in those with hepatitis C and HIV co-infection.
Eligibility criteria included: male gender, identifying as gay or bisexual, living with HIV and having recently completed direct-acting antiviral treatment and been cured of hepatitis C. Semi-structured interviews were conducted in 2017, exploring hepatitis C awareness and experiences of care, living with hepatitis C/HIV co-infection and participants’ understanding of and attitudes towards hepatitis C reinfection risk.
The median age of participants was 46 (range 26-60) and almost all participants identified as gay. They had been living with HIV for a median period of 15 years, while the median time since hepatitis C diagnosis was seven years. Twelve participants had used illicit drugs in their lifetime and ten reported ever injecting drugs.
Analysis of the interviews revealed the following themes.
Comparing HIV and hepatitis C
Most participants used HIV as a point of reference when discussing hepatitis C infection. While there was still stigma surrounding HIV, it had become more normalised in the gay community and was seen as a manageable illness. Men tended to limit their sexual networks to other people living with HIV and this facilitated disclosure.
Stigma surrounding hepatitis C infection made participants want to remain free of hepatitis C.
This was contrasted with the stigma experienced as a result of hepatitis C infection: it was seen as taboo, associated with injecting drug use and shameful. Participants described hepatitis C as more stigmatising than HIV and this extended to internalised stigma. Prevention messages also tended to focus on HIV at the expense of other infections, leading to less awareness of hepatitis C.
“I knew that [hepatitis] C existed and was one that injecting drug users tended to have, but I thought that was more associated with heroin users who were desperate and sharing needles.” (Angelo, 48)
“It was bad enough when I found out I was HIV positive but when I found out that I had hep C… I felt disgusted, like I was a disease, and judged, and felt dirty and gross… and where did I catch it from?” (Jeremy, 31)
As a result of community stigma around injecting drug use, men differentiated types of drug use (injecting vs non-injecting, stimulants vs opiates) and the associated risks. Risk perceptions of contracting hepatitis C centred around those who shared needles when injecting drugs. However, most men indicated that they were most likely infected through sex.
“I was very confused [when diagnosed with hepatitis C]. The closest running theory I’ve got is that it was somehow transmitted sexually. Because I didn’t start injecting until I was already diagnosed.” (Liam, 26)
Risk environments and avoiding reinfection
Many participants linked hepatitis C infection to being in high-risk social and sexual networks, as opposed to personal engagement in risk behaviours. These networks included gay community venues and circles where higher sexual risk-taking and drug use were common. Participants were often invited to inject drugs by a sexual partner, or sought out partners who would not judge them for their methamphetamine use. Behaviour would centre around sexualised drug use and participants described being rejected by friends who disapproved.
Hepatitis C treatment often prompted lifestyle changes that meant that men would disengage from sexualised drug networks; this could cause loneliness and isolation. If men chose to no longer take drugs after hepatitis C treatment, it possibly meant having to find a new social network.
“It kind of becomes this thing where you no longer know whether you’re looking for sex for the sex or whether you’re looking for sex for the drug.” (Joshua, 38)
“I’ve been clean since [the beginning of hepatitis C treatment]. So it’s been pretty good but hard, only because now I gotta change my circle of friends again because. . . it’s difficult, they’ll be still using when I’m with them.” (Oliver, 44)
Hepatitis C care as a catalyst for change
The opportunity to receive a cure for hepatitis C was viewed positively by participants. Stigma surrounding hepatitis C infection made participants want to remain free of hepatitis C and to avoid the association of being labelled an injecting drug user or having to disclose hepatitis C infection.
Engagement in hepatitis C care led to better ability to recognise risks and to find ways of reducing transmission. Participants expressed that they were more willing to ask partners about hepatitis C status and avoid rough, condomless sex with partners of unknown status. However, men said that it remained difficult to ask about hepatitis C status because of the associated stigma.
Several participants also described their engagement in hepatitis C care as a catalyst to reduce their methamphetamine use and to re-think their sexualised drug use. For some, reinfection was seen as failure when it came to remaining abstinent from drugs and avoiding sexualised drug circles. Thus, the avoidance of certain social and sexual networks was closely linked to remaining hepatitis C negative.
“People that have had hep C and finished the treatment. . .are more open about it once they don’t have it anymore.” (Dan, 32)
“[The treatment] set me up with supports that I could use to change my life… That’s why I wanted to stop using [drugs]. I’m too scared, in case I get reinfected.” (Oliver, 44)
For those who chose to continue using drugs, they expressed confidence about risk-reduction strategies to avoid reinfection and using their experiences to educate peers within drug-using networks.
The authors conclude: “HCV [hepatitis C virus] prevention campaigns tailored towards MSM [men who have sex with men] living with diagnosed HIV need to take account of the multiplicity of transmission risks in the context of sexualized drug use and the intersectionality of multiple stigmatized social identities. Engagement in HCV care presents an important opportunity to provide support beyond curing HCV and could be pivotal in facilitating the behaviour change necessary to achieve elimination targets.”
Schroeder, SE et al. Hepatitis C risk perceptions and attitudes towards reinfection among HIV‐diagnosed gay and bisexual men in Melbourne, Australia. Journal of the International AIDS Society 22: e25288, 2019. (Full text freely available).