In the era of U=U, disclosure still feels like a ‘grey messy area’ for gay men living with HIV in the US

A ‘sense of obligation’, ‘situational disclosure’ and ‘partners responsibility’ are the three main factors that gay men living with undetectable HIV consider when disclosing their HIV status to sexual partners, according to a new study in the journal Culture, Health and Sexuality. The study by Grant Roth and colleagues at Emory University also shows how these gay men consider U=U, HIV criminalisation laws and finding partners online when they make decisions about sharing their status.

In the US, 70% of gay and bisexual men living with HIV are virally suppressed within six months of their diagnosis. The fact that these men can’t pass on HIV to their sexual partners is likely to affect decisions to talk about their HIV status. However, most existing disclosure studies focus on men who were not virally suppressed or were conducted before the U=U message was widespread globally. The new study tries to understand the multiple personal and structural factors that influence the disclosure process of undetectable gay men in the US.

In August 2020, the research team conducted in-depth semi-structured interviews via Zoom with 20 undetectable gay men, exploring how they balance cognitive, contextual interpersonal and structural factors when making decisions about sharing their HIV status in sexual contexts. 

The study recruited participants from all regions of the country. Their ages ranged from 23 to 62 years (average 38 years old), and the time since HIV diagnosis ranged from 2 to 34 years (average 12 years). The participants included eleven White, two Black, three Hispanic/Latino, one American Indian, and three mixed race participants.

Analysis started with a model developed in a study published a decade ago. This evaluated two cognitive factors (cost of disclosure and moral beliefs) and three contextual factors (partner HIV assumptions, location of sexual activity and sexual risk behaviour). Roth and colleagues identified three new factors that influence disclosure amongst undetectable gay men: sense of obligation, situational disclosure, and partners’ responsibility in the disclosure process.

Sense of obligation

Disclosure to consent was important for many participants. Some felt it was ‘ethical’ or the ‘right thing to do’ allowing others to consent to sex knowing their HIV status. They wanted to ‘give others that choice’ that they felt they did not have when they acquired HIV. 

Some felt that partners ‘deserved to know’. Telling them was a way to avoid guilt and shame, avoid an internal struggle and get internal peace even when they knew they couldn’t pass HIV on. This was particularly relevant if they thought there was potential for a long-term relationship.

Some felt that U=U pre-empted obligation: they saw telling others as not being necessary.

"[I] just don’t see how there has to be a conversation had, if the person who’s undetectable knows they’re undetectable, knows they can’t transmit.” [23-years-old; 4 years since diagnosis].

The reasons for withholding this conversation were linked to privacy and avoiding stigmatising interactions. These participants saw HIV as private information and used non-disclosure in a self-protective way to avoid rejection, judgment, stereotyping.

Situational disclosure

For participants, decisions around disclosing varied depending on the situation they were in. Emotional closeness, varied HIV knowledge, condomless sex or how they met partners were all factors considered.

Emotional proximity to a partner was a factor in their decision-making. Participants considered the strength, longevity and emotional closeness in a relationship and tended to discuss HIV less frequently with one-time sexual partners than to those with some potential to meet again. In romantic relationships, disclosing was seen as the ‘authentic’ and ‘honest’ thing to do.

“If it’s a relationship-based conversation… disclosure is important because that’s going to be something that is going to continue to affect your life… But in the quick hook-up scenario, it’s of very little importance to the grand scheme of things, [being] undetectable… It’s a very grey, very messy area…” [36-years-old, 18 years since diagnosis].

The location of sex was another factor considered. Participants were less likely to disclose in geographical areas where they perceived a lower level of HIV knowledge and education. They wanted to avoid having to ‘give a lesson’ around HIV to the man they disclosed to or getting into ‘high-risk situations’ in relation to HIV criminalisation. 

Sex on-premises venues were not seen as conducive to talking about HIV; not telling others in this setting was seen as ‘kind of okay’ when there was no risk of passing HIV on. Participants mentioned being in the heat of the moment, not knowing the partner and alcohol or drug use.

“Do you think I’m telling people at a bathhouse? No… I don’t think it’s the right moment… you’re there for a purpose. I think we are long enough in terms of education that we should know going to a sex club and what risks that brings… you’re there to kind of do your thing and then leave… I just think the mentality of going to a sex club or a bathhouse is different than a hook-up.” [43-years-old; 19 years since diagnosis].

Find out more: Telling people you have sex with that you have HIV

For participants, disclosure was dependent on the risk level of sexual activity. Some saw oral sex as ‘not being a big deal’ and not requiring disclosure, whereas condomless anal sex was seen as higher risk, therefore it was ethically important to disclose and give partners a choice. 

“If we’re just gonna… exchange oral sex, like, fine, not a big deal. But if we’re gonna actually do anal then yeah… I think [HIV status is] probably a conversation that should be had.” [23-years-old; 4 years since diagnosis] 

HIV was often a topic of conversation on hook-up apps. For some disclosing HIV status in their profile was ‘easier’ and avoided ‘awkward conversations’ – participants did not know when they were rejected due to HIV, which protected their emotional well-being. Others prefered to use the chat function where the conversation was often prompted by discussions on sexual preferences, safer sex practices and/or sexual health.

Not telling people about their HIV status through their profiles, or delaying the conversation in chats, was a way for some participants to limit and control access to this information. Decisions about how to disclose in these apps were related to giving other users a choice, avoiding rejection or stigmatising interactions, and ensuring they only shared their status once they received a confirmation that sex would occur. 

Partners responsibility in the disclosure process

Some interviewees said that partners should ask (if they want to know), rather than relying on men living with HIV to start these conversations. Many participants disclosed when asked, but did not make the information readily available. They thought that partners not asking meant they are willing to assume the risk (which in their case is non-existent).

“I would say since [I’m] undetectable, it should be up to the other person to ask the question… you don’t necessarily have to [disclose] since the danger isn’t there so to speak, right? So if the other person wants to ask the question, it should be up to them to ask the question.” [48-years-old; 20 years since diagnosis].

"Participants used non-disclosure in a self-protective way to avoid rejection, judgment, stereotyping."

Others said discussing HIV should be a shared responsibility – in theory. But these participants felt that because of their status, and stigmatising views around it, they carry the burden of telling others. In reality, HIV criminalisation laws placed the onus of disclosure on the partner living with HIV.

“If I’m talking about a perfect world, it’s both parties’ responsibility to have that conversation to talk about [HIV status]. And you protect yourself and it’s the other person’s responsibility to protect themselves. But I don’t think… with a lot of gay guys, that’s the way it works. I think the expectation is that the HIV-positive individual has to disclose…. And I think that’s a general societal thing, too.” [59-years-old; 34 years since diagnosis].

Some participants were aware that the law sees people living with HIV as a ‘biological danger’. Even when there was no risk of transmission, some told others because ‘criminalisation laws are still on the books’. But others were less willing to disclose because of their undetectable status.

“I shouldn’t have to worry about going to jail if I know I’m not gonna transmit my virus to anyone. Just because we are both consenting adults, you know what I mean?” [23-years-old; 4 years since diagnosis]

Conclusion

The study shows the importance of having a nuanced conversation around hook-up apps, HIV criminalisation and structural stigma. It provides an argument in support of decriminalising HIV, expanding HIV education, and increasing awareness and acceptance of U=U. Undetectable gay men are still burdened with the disconnect between how the law conceives the risk of HIV transmission and the fact that effective treatment means the level of HIV in their blood is so low that they cannot pass it on sexually.