Not only can HIV be transmitted, but stigma surrounding the virus can be, too, said Valerie Wojciechowicz of CAN Community Health in Sarasota, Florida, during her presentation at the recent Association of Nurses in AIDS Care conference in Portland, Oregon. Bias in electronic medical records follows someone from one provider to the next and can influence not just how the person is treated, but whether they are prescribed certain medications. She summarized a 2018 study from Johns Hopkins University that showed the effect of the language used to describe a substance user on providers' prescribing practices. People working in the HIV field should consider the resistance they themselves face when telling others about their work, she counseled: "Just think about that: If that's the stigma you are experiencing and you are that frustrated and hurt by it, imagine how we feel."
Stigma impacts the health of people living with HIV (PLWH) in other ways, too. In the clinic where Wojciechowicz works, some clients will leave the parking lot, if they see another car that they recognize parked there, for fear of being "found out" as living with HIV. As a result, they miss their appointment, which in turn affects their care, Wojciechowicz noted. She recounted her experience with a clinic's electronic system, which displayed a large warning window over her record on the provider's screen admonishing them to use gloves because of her HIV status. She complained to the clinic. Their excuse? They have too many patients with diabetes from whom they draw blood and therefore can't use gloves with every patient.
Such actions stigmatize. So can the language used to communicate with, or about, PLWH. As they hear biased language, people may internalize that terminology and use it themselves. That is especially true of people who have been living with the virus a long time, Wojciechowicz noted: "In that community, it's a little more difficult to say, 'We don't say that anymore.'" On the other hand, "The folks who get diagnosed late in life typically know very little about HIV or language itself. So they are easier, because we can teach them right off the bat. By using non-stigmatizing language, they will learn non-stigmatizing language."
Negative language is also used within the HIV professional community itself, noted Vickie Lynn, Ph.D., M.S.W., M.P.H., of The Well Project, in her presentation. For example, the term "full-blown AIDS" was used in research journals more than 150 times this year alone. There is no such thing as "half-blown AIDS" -- either you have an AIDS diagnosis, or you don't, she explained. Another example is peer navigators who work with people in recovery. "They'll call the people 'dirty' if they test positive for a substance, and I am trying to get them to change their language," she said. Often, people using substances will then use that language themselves. "I used it when I first went into recovery," she recounted. It took her a few years to understand the negative effects this was having on her. Using non-stigmatizing language can have the opposite effect. "Instead of feeling dirty and unworthy and unwelcome, when we treat them with respect by using respectful language, that could just help to lift their self-esteem a little bit more so maybe they could not relapse," said Lynn.
So how should we talk to and about PLWH? The Denver Principles laid that out in 1983, but their demands haven't been met yet in many places. "What they were fighting for in 1983, we are still fighting for in 2019. And that's heartbreaking to me," commented Wojciechowicz. 5B, a documentary about the early days of the epidemic that was screened at the conference, portrayed the stigma and discrimination people living with the virus faced back then. "AIDS became a vehicle to justify hatred," the film proclaimed. We may think that era is behind us. Not quite, Guy Vandenberg, M.S.W., RN, one of the nurses portrayed in 5B, reminded us during a panel discussion following the film. "Today we have other untouchables. We have the homeless, we have kids in cages. This year, 22 trans women of color have been killed. It's not over."
The principles demand "people-first language" -- focus on the person, not the disease. For example, don't use "HIV-infected person"; use "person living with HIV" instead. Similarly, an "HIV-exposed infant" is an infant first, so he or she should be called an "infant exposed to HIV."
Other common terms were listed in a one-page chart of stigmatizing terms and preferred language, which both presenters distributed. Currently, the list exists only in English. There may be Chinese and Spanish versions soon, Wojciechowicz said. Creating the chart in another language is not just a straight translation task but requires adaptation for a specific cultural community. However, be careful about linguistic stereotyping, Michele Crespo-Fierro, Ph.D., M.S., M.P.H., RN, AACRN, warned in her presentation. Not everyone who identifies as Latinx speaks or reads Spanish.
Stigma is also common in African-American communities, which are often singled out as at risk for HIV acquisition. "The messages that have been delivered to the communities of color are: 'You're the one who is going to get it. You are the one who needs to worry,'" explained Wojciechowicz. People in these communities often don't expect a white woman to be living with HIV. "When I disclose my status in a church or in a group setting, you can hear a pin drop," she reported.
No matter the cultural community, however, people living with HIV have commonalities that bind them, said Wojciechowicz. "I feel like we people living with HIV, we are a culture." In 2019, this means demanding culturally sensitive -- non-stigmatizing -- language.