Stigmatizing Language Prevents People From Accessing HIV Care

HIV stigma has long been acknowledged for alienating and pushing people living with HIV (PLWH) out of care retention. As Donja R. Love, the award-winning, Afro-Queer playwright who is living with HIV, recently revealed to TheBody in an interview about positive-communication with medical professionals, after encountering stigma at the clinic where he received services, he stopped seeing his doctor and taking antiretroviral therapy (ART) for two years.

But the manifestation of HIV-stigma does not appear solely in person-to-person encounters. On July 26, during a performance at the Rolling Loud Festival in Miami, Florida, the rapper DaBaby launched into a speech that asked audience members who “didn’t show up today with HIV/AIDS, any of them deadly sexually transmitted diseases that’ll make you die in two-three weeks,” women whose “(pussies) smell like water,” and men who “ain’t sucking dick in the parking lot” to lift their cell phone lighters.

The offensiveness of DaBaby’s speech is clear, though hardly without precedent. The previous week in Italy, thousands of Twitter users sent the term #HIVPass trending across the country. As reported by Gay.IT!, the flare up began on July 21 after politician Claudio Borghi responded to inquiries about his vaccination status, by saying that journalists should ask “an LGBT if he is HIV positive and if he is taking prophylaxis.”

Soon afterwards, #HIVPass was trending in protest to Italy’s proposed green pass, or vaccine passport, using the failed logic that PLWH should be required to present a similar document to protect people who are seronegative, all while ignoring the fact that HIV is a bloodborne infection and, unlike COVID-19, is impossible to transmit by breathing in close proximity to others.

Though some Twitter users denounced the stigma and inaccuracy of these messages, once such misinformation is disseminated, it is difficult to correct, particularly when discussing a subject as widely misunderstood as HIV.

The Harm of HIV-Infected

Though unsettling, discovering HIV misinformation and stigma among uneducated provocateurs is not unexpected. It is considerably alarming, however, to encounter when engaging with scientists and medical professionals, as recently occurred during the 2021 International AIDS Society (IAS) conference.

On July 20, British HIV Association chair Laura Waters, M.D., shared that she’d come across 13 abstracts using the term “HIV-infected” at the conference, as well as many instances of use during sessions. This instead of using people-first language, which affirms the personhood of “people living with HIV.”

In his reporting on the matter, INTOMore’s editor-in-chief, Henry Giardina, revealed that a cursory search of the IAS abstract archive pulled up over 100 examples of the term in 2020 alone. TheBody independently verified Giradina’s count, finding that the terms “HIV-infected” or “HIV infected” appeared 280 times, and were used at least once in every single one of IAS’ 124 archived abstracts from 2020.

In these abstract briefs, HIV-infected was used to describe a wide range of subjects and people, including blood, women, drug-users, children, adolescents, Asians, Kenyans, mothers, pregnant women, participants, individuals, men and patients. In some instances, as with the abstract “HIV associated microbial translocation identified between 16S sequencing,” the terms “HIV-infected” and “healthy humans” were juxtaposed with each other as if to imply that PLWH cannot be bealthy, with zero regard for the fact that PLWH can be healthier than people who are seronegative.

Changing the Standard

In an interview with TheBody, Waters made clear that the use of stigma-laden language to describe PLWH was hardly unique to the IAS, pointing out that she’d encountered it numerous times at this year’s CROI conference and elsewhere throughout her career. For Waters, the issue is that people-first language has long been upheld as the preferred standard when administering or referring to PLWH.

Waters referenced the Joint United Nations Programme on HIV and AIDS (UNAIDS) guidelines as a good starting point for discussing PLWH. Since 2015, they have suggested that instead of “HIV-infected” or “AIDS-infected,” “refer to people as being HIV-positive or a person/people living with HIV (if serostaus is known/disclosed).”

In response to TheBody’s inquiry about the appearance and use of stigma-laden language in its approved abstracts, Bijan Farnoudi, the IAS director of communications and public wrote: “The IAS strongly encourages speakers and presenters to use the UNAIDS terminology guidelines at the conference. We believe that a people-centred HIV response requires people-centred language. We all need to use language that dismantles rather than perpetuates stigma and discrimination and we work to educate our audiences in that way.”

Hopefully, this encouragement will lead to a transformation in the language that is used at IAS’ 2022 conference.

Within the United States, the federal government’s source for information about HIV, HIV.gov, uses the terms “people (adults, adolescents, or persons) with HIV,” or “living with HIV,” in all of its clinical guidelines, except for on the resource space that has been dedicated to treating children. That page has not yet been updated with people-first language and continues to use “HIV-exposed” and “HIV-infected.”

According to The Global Network of People Living With HIV (GNP+), an organization that was founded in 1992 to improve the lives of PLWH, stigma is a significant barrier preventing people living with HIV from accessing healthcare. In 2016, BMJ Journals published a study that formally examined this claim. The study used six electronic databases of articles that reported on the associations between HIV-related stigma and health-related outcomes, between 1996 and 2013.

The study concluded “that HIV-related stigma has a detrimental impact on a variety of health-related outcomes in people with HIV,” and maintained that its review could help to develop interventions to reduce the impact of HIV-related stigma on well-being of PLWH.

The Personal Stake

But no study can speak to the personal devastation that stigma inflicts upon PLWH. In an interview with TheBody, Gina Brown, the director of strategic partnerships and community engagement of Southern AIDS Coalition, spoke about how stigma has affected her clients. She says that while working at a health clinic that offered mental health services, syringe exchange services, as well as testing for HIV, “people would come get tested in disguise because they didn’t want others to see them. When they came in, they would get off the elevator on the top and then walk down the stairs to our floor.” Brown explained that one client refused to come in for services unless she met him at a nearby store and walked him over, as if they were friends, heading somewhere other than the clinic.

“People don’t realize what stigma does to people who are living with HIV,” she said. “And it’s not just the external stuff that people are saying about us; it’s all the things we say about ourselves. Especially in small towns. Say you go to the doctor to get HIV care, and the same people who you go to church with see you there. Before you walk out, everybody in town is gonna know about your business. Many people would rather sit in their houses and slowly die. Stigma kills.”

That’s what is so harmful about DaBaby’s comments and using language like “HIV-infected.” When people hear that language, what they hear is, “I’m not just living with this infection,” added Brown. “I am this infection and every part of me must be infected. It doesn’t feel good. But if you’re newly diagnosed and don’t know another term or haven’t found your advocacy legs yet ― even though it feels horrible to you, you don’t know you can say, ‘I don’t like this.’ And that can keep people from starting treatment or from coming back. Because no one wants to feel like they’re an infection.”

Upholding the Personhood of PLWH

Given that stigma-laden language remains pervasive even within reputable institutions ― despite guidelines and recommendations from qualified studies, researchers, and organizations ― it is essential for medical doctors and providers to ensure that they are communicating with their patients who are living with HIV in a manner that upholds the dignity of their personhood.

As with discussing a person’s gender expression, preferred pronouns or sexual identity, a simple way to avoid pitfalls is by asking how a patient responds to specific terms. Doctors who would like to have assistance with navigating the most up-to-date HIV terminology can visit People First Charter, a resource that follows the World Health Organization’s (WHO) directive to use positive and inclusive language when administering medical care. The website was created by Waters after her experience at IAS to help researchers avoid inadvertently using stigma-laden language.

PLWH can also use these resources to arm themselves with the most up-to-date language of care, or to initiate conversations with their medical providers about improving the way they communicate.

Additional resources include UNAIDS’ Terminology Guidelines from 2015, as well as People Living With HIV’s Stigma Index. The index was developed by GNP+, ICW, UNAIDS and IPPF to provide evidence on how stigma and discrimination affects the lives of PLWH and provides individual reports on 24 countries that detail the specific challenges that PLWH experience within their borders.

Juan Michael Porter II is a contributing editor for TheBody and TheBodyPro. He has been living with HIV since 2015. This column is a project of TheBody, Plus, Positively Aware, POZ and Q Syndicate.