Understanding HIV Undetectability: ‘If U equals U what does the second U mean?’
For over five years, the U=U campaign has worked to communicate current scientific knowledge regarding HIV and HIV-transmission. Following over a decade of clinical research, there is overwhelming research evidence to demonstrate that HIV undetectability – the inability for a standard viral load test to detect HIV in the blood of a person living with HIV – means that a person living with HIV can’t pass HIV on through sex, or HIV is untransmittable.
Yes, people living with HIV who are able to reach and maintain an undetectable viral load through antiretroviral medications can’t pass it on!
Our research team was interested in exploring what this new breakthrough in HIV science meant to Canadian sexual minority men living with and without HIV. National campaigns communicated messages such as #UequalsU, #FactsNotFear, and #ScienceNotStigma, but how did gay, bisexual, queer, and other men who have sex with men understand the meaning of HIV “undetectability” in their everyday social and sexual lives?
Between late 2016 and early 2017 we spoke to 25 sexual minority men in British Columbia with various sexual and gender identities. This sample included both HIV-negative men and men living with HIV. We asked our study participants about their general sexual health knowledge and behaviour, including HIV viral load and undetectability.
Most of the participants that we spoke with acknowledged that undetectability meant a reduced likelihood that HIV-positive people could sexually transmit HIV. In short, these men understood undetectability to mean reduced transmission rather than no transmission. As Owen put it, “it’s like 99.9% they’re not transmitting the virus”. All names used here are pseudonyms.
For some men, undetectability was a medical term related to an HIV-positive person’s last lab test, but they weren’t entirely sure what that meant for them personally. Sure, the lab test was “undetectable”, some men said, but that’s not a result that an HIV-negative person could be entirely confident in. Paul put it like this:
...assume that they [persons living with HIV] don’t have the virus, but you still have to be aware.
Some men questioned if being undetectable at the point of testing meant that the person would remain undetectable in the future.
A small number of men completely discredited the concept of undetectability. It didn’t mean anything to them, and they felt that it shouldn’t mean anything to them. If someone’s HIV-positive, then they’re just that. As Michael explained, “if someone tells me they are undetectable, I don’t think about it anyway except that they’re HIV-positive. I say to someone that that has really no bearing to me. You’re either positive or you’re not.”
It was apparent that HIV undetectability made some of the men that we spoke to feel a sense of unease or doubt. For others, undetectability was scientifically uncertain or simply unimportant. We called this sense of apprehension among gay, bisexual, queer, and other men who have sex with men untransmittable scepticism.
Some HIV-negative men who exhibited untransmittable scepticism said that they were not inclined to have condomless anal sex with men who were undetectable. Others were explicit that they would not have any sexual interaction with a person who was undetectable. For these men, it was just “not worth the risk.”
The HIV epidemic has had a profound social, economic, and health burden for queer men around the world.
We have come a long way and have substantially reduced the economic and health burden associated with HIV, but it is apparent that the social burden persists today. We believe that the sexual decision-making of all men who have sex with men needs to be grounded in evidence that people can be certain of.
So how do we move forward?
There is seemingly a disconnect between the scientific community and some within the broader queer community. It is likely that over time, as more information and messaging around HIV undetectability becomes widespread, there will also be a reduction in untransmittable scepticism. But we need to do more.
We think that a vital next step in disseminating reliable and clear information around HIV and healthy sexual practices is ensuring that healthcare providers are on board.
Recent data from an international survey of people living with HIV found that roughly one-third of participants reported that their healthcare providers have not discussed U=U with them. Another survey of adults living with HIV across the United States found that roughly 80% of respondents felt that U=U messaging made them feel better about their own HIV status and thought that U=U messaging would have a positive impact on HIV stigma.
In addition to informing national and international healthcare guidelines regarding discussing U=U with their patients, we need to speak to healthcare providers across Canada to ask them about their knowledge of HIV undetectability and how that affects their practice.
Our hope is for healthcare providers to have conversations with all of patients about HIV transmission and undetectability, including people living with and without HIV. This way, we can all make educated and informed decisions regarding the sex we have.
Improving the sexual health of the broader queer community requires that we continue to add resources and reliable information into our HIV prevention toolboxes. Widespread messaging regarding U=U is needed to combat misinformation and confusion among some men who have sex with men, including misunderstandings we found in our research that some men have about the meaning of pre-exposure prophylaxis (PrEP) and HIV undetectability.
We also need to ensure that all people living with HIV have reliable access to antiretroviral medications and receive the support necessary to take treatment if they choose. Together, these initiatives have the potential to prevent new HIV transmission and minimize stigma related to HIV, ultimately enriching the social and personal lives of all queer men.
Daniel Grace and Jad Sinno
University of Toronto, Dalla Lana School of Public Health
Questions about the study?
Leave us a comment below or contact Daniel directly:
Daniel Grace, PhD
Associate Professor, Dalla Lana School of Public Health, University of Toronto
Canada Research Chair in Sexual and Gender Minority Health
You can also review the full, open access peer-reviewed publication here. And if you haven’t been on our blog page in a little while, we have added a couple of other posts related to U=U and PrEP. Go check them out!