By Dan Avery
Published:August 26, 2021
Just days after Moderna announced it was starting Phase 1 trials of an HIV vaccine, a new report reveals that stigma and misinformation about the virus continue 40 years after the first articles were published about a mysterious cancer killing “active homosexuals.”
The report, “The State of HIV Stigma 2021,” found that less than half (48 percent) of American adults say they feel knowledgeable about HIV, down from 51 percent last year.
According to the study, which was published by the LGBTQ advocacy group GLAAD and the Southern AIDS Coalition, 64 percent of adults said they’re aware that there are medications that protect against HIV, but only 42 percent knew that someone properly following an antiretroviral drug regimen can’t transmit the virus.
Gilead Sciences, which funded the study, makes HIV medications like Biktarvy and Atripla and the HIV prevention pills Truvada and Descovy.
Half of respondents (50 percent) said they’d feel uncomfortable with a HIV-positive medical professional, 42 percent were uncomfortable with a hair stylist or a barber living with the virus, and a third (34 percent) said they were uncomfortable with an HIV-positive teacher.
There were some notable differences between LGBTQ and non-LGBTQ respondents: Fifty percent of straight, cisgender respondents said they wouldn’t be comfortable with a partner or spouse with HIV, for example, compared to 38 percent of lesbian, gay, bisexual, transgender and queer respondents.
The discomfort was highest in Southern states, which also have the highest rates of diagnosis and the highest number of HIV-related deaths, according to the Centers for Disease Control and Prevention.
“There’s a correlation there,” Southern AIDS Coalition Executive Director Dafina Ward said. “Fear comes from a lack of knowing. A lack of information drives the stigma, which feeds the feeling you have to hide. It’s a vicious cycle. People are so afraid of being found out they defer treatment.”
More than 500,000 people live with HIV in the South, according to the coalition, but the region falls behind in quality HIV care and prevention services. Sex education in the South also tends to be abstinence-only, Ward added, “so vital conversations aren’t happening” and students aren’t given comprehensive information about preventing HIV/AIDS.
According to Planned Parenthood, seven Southern states either prohibit sex educators from discussing or answering questions about LGBTQ identities and relationships “or actually require sex educators to frame LGBTQ identities and relationships negatively.” Such laws further stigmatize LGBTQ youths and leave them without the information they need to protect their sexual health, the reproductive health services organization said, putting them at greater risk for sexually transmitted diseases.
HIV is a reality in the LGBTQ community: In 2019, men who had sex with men accounted for 69 percent of new HIV diagnoses in the U.S., according to the Department of Health and Human Services. At the same time, the CDC found an HIV rate of 42 percent among transgender women in seven major cities.
‘We’ve lost the sense of urgency’
Some issues fueling HIV misinformation, like inadequate sex education, have existed since the dawn of the AIDS crisis, Ward said, but new hurdles have emerged in recent years.
“We’ve had so much advancement in treatment and people living longer, healthier lives that we’ve lost the sense of urgency,” she said. “There’s a new generation that’s not hearing about HIV — not in the media, not in schools and not from the government.”
And when they do hear about it, the message is often warped: Hip-hop star DaBaby came under criticism last month for telling fans at the Rolling Loud music festival in Miami to shine their smartphone flashlights if they “didn’t show up today with HIV/AIDS, any of them deadly sexually transmitted diseases that will make you die in two to three weeks,” and made other disparaging remarks about gay men in a viral video.
A November 2019 survey from the pharmaceutical company Merck and the Prevention Access Campaign underscored how pervasive stigma and misinformation around HIV are among younger Americans.
More than a quarter (28 percent) of HIV-negative millennials (ages 25 to 36 at the time) said they had avoided hugging, talking to or being friends with someone with the virus, and 30 percent said they’d prefer not to interact socially at all with people with HIV.
Researchers also found that 23 percent of HIV-negative millennials admitted that they were either “not at all” or “only somewhat” informed about the virus. For HIV-negative members of Generation Z (ages 18 to 22), the figure leaped to 41 percent.
Nearly half of all HIV-negative young adults in the 2019 survey believed the virus could be transmitted by someone whose viral load is undetectable, even though the CDC has confirmed that there’s “effectively no risk” of infection if someone’s viral load is undetectable.
“Stories and voices of people living with HIV are not prioritized regularly to humanize the epidemic, reduce stigma around it, and illustrate how HIV is preventable,” GLAAD President Sarah Kate Ellis said in a statement about “The State of HIV Stigma” study. “Their stories must be told to show how people with HIV lead long and healthy lives, and cannot sexually transmit HIV when on proper treatment.”
J. Maurice McCants-Pearsall, director of HIV and health equity at the Human Rights Campaign, an LGBTQ advocacy group, said the report “confirms that HIV stigma permeates throughout our entire society.”
“And as long as HIV is stigmatized, the more it will continue to devastate multiple marginalized communities,” he added.
Last week, the Human Rights Campaign launched the first national in-home HIV testing program, also supported by Gilead Sciences. Partnering with the health equity nonprofit Us Helping Us, the organization has pledged to ship at least 5,000 free at-home HIV testing kits over the next year, focusing on marginalized communities disproportionately affected by the virus, including Black and Latino men who have sex with men, as well as bisexual and transgender women of color.
The kits include an OraQuick oral swab, as well as condoms, lubricants, a card with testing information and a referral to providers of pre-exposure prophylaxis, or PrEP, in their area.
“These in-home self-testing kits empower people to learn their status and take control of their sexual health in the privacy of their own home, helping reduce HIV stigma and fear,” McCants-Pearsall said.
Ending the epidemic
President Joe Biden has made bold promises about fighting HIV/AIDS, starting with a campaign commitment to end the epidemic by 2025, five years earlier than President Donald Trump’s stated goal.
“Updating the nation’s comprehensive HIV/AIDS strategy will aggressively reduce new HIV cases, while increasing access to treatment and eliminating inequitable access to services and supports,” Biden wrote in a 20-page candidate HIV questionnaire submitted by a coalition of AIDS organizations.
The White House requested $670 million from Congress this year to end HIV/AIDs, an increase of more than $267 million from previous budgets. He has also pushed to expand the use of HIV-prevention medication and ensure access to HIV services by minorities.
But ending the stigma surrounding HIV/AIDS will take more than money, said DaShawn Usher, GLAAD’s associate director for communities of color.
“We have to think critically and intentionally about how we truly equip and engage everyday Americans with the facts, resources, and scientific advancements about HIV,” Usher said in a statement. “We must hold the media accountable to the 1.2 million Americans living with HIV who are not seen, represented, or discussed. Their stories matter and are beyond worthy of being told.”