Knowledge of U=U alone is unlikely to eradicate HIV stigma among gay and bisexual men in India, anthropologist argues

An ethnographic study explored how middle- and upper-class gay and bisexual men living with HIV in four Indian cities experience the concept of being undetectable in the context of preventing sexual HIV transmission.  For men in the study, the concept provided new ways to manage stigma and navigate responsibility.

In this study, being undetectable facilitated further closeting of HIV as men avoided social danger through ethical non-disclosure of their undetectable HIV. The weight of responsibility felt by men living with HIV presents a paradox posed by treatment as prevention, which the author argues shores up the logic of criminalisation. Viewing stigma as a complex social process, and not the result of individual negative beliefs stemming from ignorance, the author concluded that Undetectability alone would not eliminate stigma.

The knowledge that viral suppression prevents sexual HIV transmission offers many promises, such as remediating stigma that stems from fears of HIV transmission. As the scientific consensus about the effectiveness of treatment as prevention grew, so did efforts to use HIV treatment to curb new transmissions, reflected UNAIDS 90-90-90 goals, WHO’s widely adopted test and treat strategies, and ending the epidemic initiatives. Some critics have pushed back, arguing that this biomedical approach represents a re-medicalisation of HIV.

Writing in Medical Anthropology, Cornelius Rijneveld of the School of Oriental and African Studies at the University of London explored how treatment as prevention is experienced in a specific social, cultural, and geographic context. The author used a construct of ‘Undetectability’ to signify viral load in the context of HIV prevention and the accompanying ideologies and discourse central to ‘Undetectable equals Untransmittable’ (U=U).

India is home to the world’s third largest HIV epidemic, which is concentrated among key populations including men who have sex with men. Most HIV research in India focuses on women and key populations in working class communities.

Little is known about the experience of HIV stigma among more affluent gay and bisexual men, who mostly receive HIV treatment privately and have more privilege than their working-class counterparts. These men may be more likely to experience the discourse around U=U, given their fluency in English, access to viral load testing, and consumption of global gay media.

Methods

Between July 2019 and March 2020, Rijneveld conducted thirty loosely structured interviews with thirty middle and upper-class gay and bisexual men living with HIV in Bengaluru, Mumbai, Chennai, or New Delhi. The interviews were done in English, which all participants spoke as a first or second language. Of the thirty interviews, one focused on PrEP and the rest on experiences of Undetectability.

Participants were primarily recruited through Grindr. To gain trust and establish a shared connection, Rijneveld disclosed his own HIV-positive status on the profile created for recruitment. The research opportunity was also promoted via a WhatsApp peer support group for gay men living with HIV.

Results

The overall finding of the study was that the concept of Undetectability enabled new ways for participants to navigate responsibility, disclosure, stigma, and social danger.

Navigating responsibility

Early in the HIV epidemic, when a “gay lifestyle” was the only known risk factor, gay and bisexual men shared the responsibility for managing HIV risk. This changed as antibody testing allowed responsibility – and blame – to be shifted to those living with HIV. This led to a social norm about a moral obligation to disclose an HIV positive status. The preventive power of HIV treatment added to this burden of responsibility, and accompanying stigma, by assigning those living with HIV as the natural bearer of risk.

In the study, one man described being chastised for not putting his HIV-positive status on his profile, with his match stating that doing so would have given him a chance to “weed him out”. The participant viewed the interaction as reflective of his match’s anxiety around having unprotected sex, but he also experienced frustration. He shared:

“I know what I went through, and I know I’m not going to make someone else go through the same. So this whole playing with the guilt feeling doesn’t really work. I’m undetectable, and I’m using a condom, or just fucking blowing someone. So I don’t really need to come out, and I don’t think I should feel guilty.”

The participant felt like he was doing his part to mitigate risk by maintaining an undetectable viral load. This ethical non-disclosure freed him to reject the social norms that obligate disclosure; norms that are often challenged in the era of U=U.

In contrast, the partner of the participant above, also living with HIV, was not undetectable. Concerned that he wasn’t yet ready for the rigorous adherence demanded by HIV treatment, he had not yet started taking HIV medications. Emboldened by the medical training of a doctor he matched with on Grindr, he disclosed his HIV status:

“And I figured that since he’s a medical professional, it should be okay with him, he should have a better understanding.”

His match harshly admonished him:

“Why are you on Grindr? Don’t you feel ashamed? Why are you even speaking to people like this, what if you pass it to someone?”

Struck by guilt, the participant quickly retreated back into the closet, under the guise of “just kidding”. In contrast, his undetectable partner, fueled by biomedical certainty, was empowered to reject guilt from his Grindr match.

This divergence parallels some contemporary reforms of HIV criminalisation laws. In Canada, for example, the legal assumption of guilt stemming from nondisclosure is absolved by an undetectable viral load, leading Rijneveld to argue that Undetectability shores up the logic of HIV criminalisation.

Further, Rijneveld argues, it illustrates how Undetectability can worsen a viral divide among people living with HIV, empowering those who are on effective treatment while rendering those who are not virally suppressed as irresponsible and dangerous.

Social danger

An undetectable viral load unequivocally resolves any actual risk – danger – for HIV transmission to sexual partners. But for men in this study, Undetectability did little to resolve social danger stemming from their HIV positive status.

Rumors and public shaming were commonplace. Grindr, a tool of connection for gay and bisexual men, was also a platform of hate. Fake profiles were used to weaponise status, by naming and shaming men living with HIV. For men in the study, privacy offered safety.

“I have to keep it private because it is stigmatized. I don’t have a problem telling people if they react normally…I shouldn’t be traumatized by your response, right? And then you’ll go and tell a hundred other people who respond in a hundred other ways … that’s very hard to take, no? If you judge me, discriminate me, I can’t take it, right? I also need to have safety.”

Men felt torn between wanting to educate others about Undetectability and preserving their own safety:

“It’s my responsibility to be vocal about it. But even though you’re undetectable, they might go through any length to tell everyone [that] this person is bad. I don’t want a bunch of people standing in front of my house one morning saying, oh he’s poz, etc. I don’t want to take that chance.”

Rejneveld states that Undetectability pushes those living with HIV into a “biomedical closet” and as a result, HIV negative men in the study were less likely to be exposed to the concept of Undetectability. He describes this as illustrating a paradox inherent to treatment as prevention: namely that Undetectability impedes solidarity among those with differing HIV statuses, instead of strengthening it.

The complexity of stigma

U=U has been described as a way to dismantle HIV stigma by reducing fear of HIV transmission. This hope hinges upon a concept of stigma as individual negative attitudes stemming from out-of-date knowledge or ignorance, which can be remediated with accurate information.

However, in this study, stigma was a complex social process, inextricably linked with class, caste, and education. Rejneveld interviewed a gay HIV-negative private medical professional who prescribed PEP and PrEP. The interviewee, who was taking PrEP himself, shared that he would not sleep with a man living with HIV because:

“There is still a 1% chance.”

He said he always asked about HIV status and requested a “clean” lab report as proof. Rejneveld asked the interviewee how he responded when people told him they were living with HIV and undetectable. Looking surprised, he shared that:

“I’ve never had anyone tell me that they were positive. I kind of weed profiles off. You don’t put too much time into conversations when you know there is something about it that just doesn’t click with you. So I haven’t had that. I have had someone tell me that they were undetectable a couple of times, but I didn’t engage in any of those interactions. I kind of let them whither way as politely as possible.”

Rejneveld asked him to say more about how that filtering works. The man laughed, then said:

“Well, you can sort of tell from a person’s profile, their level of … understanding of just general things. You know, the way they structure their sentences, the things they write about, you can tell whether you will be able to have a same wavelength as them to [be able to] converse with them, or whether you’re coming from completely different worlds. And if that’s the case it’s gonna be awkward, you won’t know what to talk about, how to communicate …”

When asked if he thought that was linked to the likelihood of them being HIV positive, the participant responded with:

“I think there’s definitely a knowledge gap. And that’s where the problems are, where you’re just completely ignorant and unaware – not bothered to learn about the problems as well.”

This exchange illustrated value judgements underpinning the participant’s assumptions and understanding of HIV as a problem impacting those from a “completely different world”. Rejneveld argues that the participant’s references to the ‘same wavelength’, ‘clicking’, and communication were all euphemisms for communicating a preference for socially privileged partners.

For this participant, an HIV positive status denoted a fundamental lack of compatibility. HIV was something that happened to men who weren’t on his wavelength; the ignorant and unaware. The impact of HIV on social desirability was borne out in other interviews, where men described their HIV positive status as something that undermined their class and caste privilege.

Rejneveld argues that Undetectability alone is no match for the HIV stigma experienced by men in this study, given a concept of stigma as a complex social process and not just out-of-date information. 

Conclusion

In this study, many men engaged in ethical nondisclosure of their undetectable HIV. These men rejected guilt because they felt their untransmittable status obligated their responsibility for HIV prevention. In contrast, men who were detectable found no such relief from guilt. Rejneveld argues that the disproportionate ownership of responsibility felt by men living with HIV illustrates a paradox of treatment as prevention that shores up HIV criminalization logic.

Another paradox described by Rejneveld is that the concept of treatment as prevention requires widespread engagement by both men living with and without HIV. Yet in this study HIV negative men did not encounter men who discussed being Undetectable, as severe social danger from stigma drove men into what Rejneveld coined the “biomedical closet”.

The stigma experienced by the men in the study was more complex than individual attitudes stemming from out-of-date information. Rather, stigma was a complex social process tied to education, class, and caste. For this reason, Rejneveld concluded that Undetectability alone is not sufficient to eradicate stigma among gay and bisexual men in India.

Rejneveld, himself European, noted that a recurring theme emphasised by men in the study was placing Undetectability into the social and cultural realities they faced:

“U = U is okay, but the way the message is put forward is very important. In a country like India, you can’t expect people to disclose and be safe.”