U=U, but let’s not stigmatize being detectable

At the 2018 U.S. Conference on AIDS (USCA), Charles Stephens and Mark S. King raised an important question when they presented a workshop titled, “Are We Shaming Those Who Are Detectable?” The workshop focused on how the undetectable equals untransmittable (U=U) message impacts community discussions around having a detectable HIV viral load. At the workshop, one attendee, Martin Walker, announced that he was detectable and later shared his story with TheBody.

“Here was a room filled with advocates, people living with HIV, public health people, providers, and no one could manage a response to him that felt immediately comfortable,” said King about this moment. While he felt that there was a lot of empathy and compassion in the room, he said that at the time, it was “as if we hadn’t come up with the correct response that would make that person feel whole.”

When the U=U message first launched in 2016, it was a tremendous success and validation for many in the community. “U=U has had an incredible impact on the HIV movement,” said Charles Stephens, founder and executive director of CNP (founded as the Counter Narrative Project) and co-presenter of the USCA workshop. “Many of us have felt very affirmed and very empowered by U=U.”

At the same time, any new advance can widen existing disparities. “What we see time and again is that the latest advances in HIV—for example, a new HIV antiretroviral treatment medicine or regimen or a new educational message—are most accessible to individuals with greater privilege in our society,” said Cristina Rodriguez-Hart, Ph.D., M.P.H., a stigma researcher and senior community planner at the New York City Department of Health and Mental Hygiene.

So how is the U=U message playing out in the health care setting? Are we stigmatizing those who are detectable?

The Struggle to Get Providers on Board With U=U

To date, most of the focus on U=U and medical providers has been on the simple struggle to get providers on board with communicating U=U at all. For example, studies have found that providers do not communicate about U=U with patients due to lack of knowledge, disbelief, or concerns about sexual risk compensation. Additionally, many providers use unclear language such as “extremely low” or “negligible” risk, instead of recommended language, such as “no” or “zero.”

Rebecca Green, LMSW, a former HIV program director in New York City, recalls seeing these conversations play out regarding the U=U message. “Initially, we actually had some pushback from medical providers who did not want to get on board with the idea of U=U,” she said. She also recalls hearing some providers express that “you never really know” if a patient is taking their medication and communicate about U=U in a way that was conditional, with caveats, rather than in a way that inspired hope.

Even when a provider clearly communicates U=U without caveats, it’s important that the overall message about antiretroviral therapy (ART) focuses on an individual’s personal health needs. “The message helps providers encourage adherence by affirming to our patients that while taking ART is first and foremost about your individual health,” said David Malebranche, M.D., M.P.H., a physician and researcher specializing in HIV prevention and treatment, “the additional selling point is that it helps protect your sexual partners as well, regardless of condom use.”

Despite this, according to Green, some providers message about U=U by suggesting that being undetectable is a responsibility or obligation of people living with HIV (PLWH), rather than something someone might want to do primarily for their own health. TheBody staff writer Juan Michael Porter II has written about the inherent problems with this kind of responsibility-related message toward PLWH.

Increased HIV Stigma Toward Those Who Are Detectable

Unfortunately, the old trope of PLWH “putting others at risk”—an incredibly stigmatizing and hurtful message that has been perpetuated in various ways since early on in the epidemic—now seems to rest even more strongly on those who are detectable. “Everything old is new again,” said King when I asked him about this. “If there is language being used to stigmatize people who are detectable, it sounds an awful lot like the language that used to be used to stigmatize people with HIV in general.” For example, there may be a stereotype or assumption that someone who has a detectable viral load and is sexually active is not taking any other measures to reduce the possibility of HIV transmission, including condom use, having sex only with other HIV-positive partners (serosorting), or choosing sexual acts that have a lower risk of transmission.

As for clinical spaces, studies have shown that many providers have not been adequately trained in sexual history taking, and even HIV providers may not be adequately prepared to have a thorough conversation about options for reducing the risk of sexual transmission for individuals with a detectable viral load. While providers typically focus on condom use, a harm-reduction approach could involve discussing other options for preventing HIV transmission through sex, including serosorting and an understanding of the vastly different risks associated with different sexual acts. (If an HIV-positive person with a detectable viral load is the receptive partner for anal sex with an HIV-negative partner not on PrEP, the per-contact transmission risk is 11 in 10,000 sex acts, less than one-tenth the risk if they were the insertive partner, and HIV transmission risk associated with oral sex is known to be extremely low.)

Providers need to avoid guilt- and shame-based messages toward people who have a detectable viral load, and take the time to engage in discussion around the barriers they are experiencing in their care as well as the various steps they can take to attend to their own health and that of their sexual partners. “Shaming or scaring clients into doing what we want will not work in the long run,” said Rodriguez-Hart. “Instead, it will exacerbate medical mistrust and discourage continued engagement with health care systems, driving certain behaviors underground.”

A focus on risk can also become problematic in terms of perpetuating harmful and oppressive narratives. “I would like to see us move away from ‘risk,’ and toward a framework centering mutual support and healing,” said Stephens.

A Focus on Undetectable Status Can Eclipse Other Needs

“There are other goals in life and good health and good mental health and physical health,” said Mark S. King, “and there are other goals [besides viral load suppression] in terms of what is success with one patient.” He recalled that prior to the advent of effective HIV treatment, there was more negotiation between people living with HIV and their providers regarding treatment choices, and that some of this seems to have gone away. “If you are not creating space where that person can tell you about his impediments to treatment, then you’re missing out and they’re missing out.”

Rebecca Green, the former HIV program director, feels that sometimes providers don’t have the training or cultural competency to understand the overall situation that their patients are experiencing and to elicit information about the reasons that someone might be detectable. Reasons can range from people needing to hide their pills from others in their household, to mental health issues, to not having transportation to the clinic. In these situations, an emphasis on ART adherence without taking the time to understand the underlying barriers can be very alienating and damage the relationship between patients and providers. David Malebranche, the HIV specialist, recommends utilizing nonjudgmental and supportive communication and exploring how to be more supportive or provide more assistance with their approach to ART.

“Providers too often focus on medical care without addressing the structural determinants of health that shape behavior and limit access to health care and supportive services,” said researcher Cristina Rodriguez-Hart. “It is critical to consider racism and systems of oppression when designing and implementing HIV services and programming.”

Reporting Metrics May Contribute to a Focus on Viral Suppression

While a whole-person approach is very important, the fact remains that many HIV service providers are reliant on grants for which viral load suppression is increasingly the most important metric that is reported. “I do worry that such an insular focus is problematic in that it reduces program effectiveness or people’s health to their viral load,” said Green. While of course viral suppression is very important, other metrics, such as retention in care, may also be an important measure of a program’s effectiveness in meeting people’s health needs and supporting ongoing engagement with a care team.

Further, viral load suppression is typically reported as the percent of individuals who are virally suppressed at a certain point in time, which does not take into account the various trajectories of care. Someone whose viral load is briefly detectable because they needed to resolve a problem with their insurance coverage or forgot their medications when they went on a trip has very different needs than someone who struggles with taking their medication due to substance use, lack of appropriate housing, or mental health challenges. Additionally, for a small number of people, complete viral suppression may be impossible due to drug resistance.

Despite this, it’s clear that a focus on viral load suppression is a key part of ending the epidemic efforts, but this conversation needs to occur in the context of other factors. As Rodriguez-Hart puts it, “Stigma is the first bar of the HIV care continuum.” She means that we cannot address other aspects of the care continuum, such as linkage to care, retention in care, and viral suppression, without working on multiple levels to address intersectional stigma affecting people living with HIV.

But even as public health efforts to end the HIV epidemic increasingly focus on achieving viral suppression targets, the voice of those who currently have a detectable viral load seems to be conspicuously absent in many settings. People who have a detectable viral load—or, at least, who discuss it openly—are typically not represented on community advisory boards and other forums for consumer feedback. While some of this may be due to the same barriers that prevent people from accessing HIV care, it needs to be acknowledged that those who are increasingly receiving the most attention regarding public health interventions seem to be the least represented in shaping those interventions.

Dignity Does Not Depend on Viral Load

While U=U is a powerful and affirming message, an overfocus on this message can direct attention away from the structural barriers that people face in accessing HIV care and achieving viral suppression. We need to avoid a “one size fits all” approach when it comes to addressing ART adherence, and take the time to understand and address barriers to care on multiple levels. Finally, we need to move away from stigmatizing stereotypes that suggest that everyone with a detectable viral load is creating risks for HIV transmission, and instead address people’s individual situations and needs.

Providers and trainees may benefit from increased training regarding social determinants of health, sexual history taking, and intersectional stigma. Close interdisciplinary collaboration among care teams can help to ensure that everyone has the information they need to provide appropriate referrals and support for each person’s individual needs—for example, a client may share more about the barriers they are experiencing with a peer worker rather than with their doctor.

Overall, though, we need to take the conversation from the individual level to the structural level. “Too often, individuals are singularly blamed for the barriers they encounter in attempting to access and remain in health care, without institutions being held accountable for creating those barriers,” said Stephens. He continued, “We must reject a value system that rewards and punishes based on health and, ultimately, access to health care. All members of our community are valuable.”

By Finn Schubert, M.P.H.