Exclusive: New GLAAD survey on HIV stigma and lack of knowledge about transmission shows 'how much work is left to do'
Only half of Americans feel knowledgeable about HIV, and nearly 90 percent believe that stigma still exists around it, according to new findings just released by GLAAD’s “State of HIV Stigma Study,” revealed exclusively to Yahoo Life.
The release of the findings on Monday come paired with another GLAAD announcement — that it will work even harder to fight the persistent HIV stigma by kicking off two programs, around accurate HIV media coverage and HIV outreach education, with a focus on the U.S. South and communities of color, through a $9 million multi-year grant from Gilead Sciences as part of its COMPASS Initiative.
The new survey was a partnership between Gilead Sciences, the biopharmaceutical company that primarily makes HIV drugs, and GLAAD, the LGBTQ-fairness-in-media advocacy organization that’s probably best known for its annual star-studded GLAAD Media Awards, set to happen virtually this week, on July 30, after being halted in April by the pandemic.
Among the other findings of the survey, which asked a national sample (2,506) of adults about their attitudes around the global HIV epidemic — ongoing in the midst of the coronavirus pandemic — was that a vast majority of Americans (89 percent) believe there is a stigma around living with HIV. Proving that, more than half (59 percent) agree with the stigma-furthering, erroneous belief that it’s important to be careful around those with HIV in order to avoid catching it. And only 60 percent of adults believe that HIV is a medical condition that can be treated — which it is, with proper medication and care, despite there being no cure.
Some results were broken down by LGBTQ and non-LGBTQ respondents, which in some cases made for a significant belief gap. Those surveyed, for example, were presented with eight situations to evaluate levels of discomfort around people living with HIV; that included doctor, dentist or medical professional (56 percent of non-LGBTQ respondents would be uncomfortable vs. 45 percent of LGBTQ); a partner or spouse (51 percent vs. 40 percent); a barber or hairstylist (47 percent vs. 39 percent); and a teacher (34 percent vs. 29 percent).
Regarding questions of feeling educated about HIV, 55 percent of LGBTQ Americans and 51 percent of non-LGBTQ Americans say they feel “knowledgeable,” while 34 percent of LGBTQ Americans vs. 40 percent of non-LGBTQ admit to knowing only “a little about it.”
Further, only 35 percent of those surveyed thought that a person living with HIV should not have to disclose their HIV status. (The issue of HIV disclosure is personal and complex, although 21 states, nearly half of which are in the South, have laws that require such disclosures be made to sexual partners; 12 states having such laws regarding needle-sharing partners.)
All told, GLAAD concludes it has its work cut out for itself when it comes to furthering people’s knowledge around HIV — which is why it coupled the release of the survey findings with news about its stigma-fighting programs in the South.
“The data around the stigma facing people living with HIV today shows how much work there is left to do to end HIV/AIDS,” Sarah Kate Ellis, GLAAD President and CEO, tells Yahoo Life (HIV, if left untreated, becomes AIDS). “GLAAD’s new programs in the U.S. South will elevate voices of local LGBTQ leaders in local and national media to grow LGBTQ acceptance and break down stigma facing people living with HIV.”
These programs, says Ellis, which represent work GLAAD has always done, only with renewed vigor and dedicated regional staff due to the new funding, “are long overdue, and will not only center inspiring stories of LGBTQ people and people living with HIV, particularly LGBTQ people of color, but also educate non-LGBTQ people about how people receiving proper treatment for HIV today lead long, healthy lives and cannot transmit the virus.”
Why focus on the South?
While the entire country could stand to be better educated about HIV, the survey’s findings, when broken down by U.S. region, showed the South as often lagging behind. But the larger motivation for the stepped-up HIV programs came earlier, from a 2016 GLAAD/Harris Poll “Accelerating Acceptance,” which found that LGBTQ acceptance in the South was lower than in other regions of the U.S.
HIV rates pointed that way, too: In the American South — home to the fastest-growing rates of infection in the U.S. — Black gay and bisexual men account for 60 percent of new diagnoses.
“You would think that we — specifically, my demographic, African American men, with the numbers that we have of HIV, that we would know no more. They don’t,” Morris Singletary, chairman of the Metro Atlanta HIV Health Services Planning Council, who participates in the new GLAAD programs as part of his outreach work around HIV prevention and treatment to Black and Latinx communities, tells Yahoo Life.
While gay men are the most HIV-affected population in the U.S., accounting for 70 percent of new diagnoses, according to the Centers for Disease Control and Prevention, Black gay men account for nearly 40 percent of those new infections; of all new HIV diagnoses in the U.S. in 2018, 42 percent were among African Americans, 31 percent of whom were men.
It’s a troubling imbalance, and one recently called out by Elton John in an essay in The Atlantic, in which he discussed the high rates of HIV among Black Americans, specifically noting the high vulnerability of Black trans women to HIV.
“These disparities are not random,” he wrote. “Rather, they reflect centuries of discrimination. Persistent structural inequities in economic opportunity, education, and housing disproportionately expose Black families to serious health risks, including HIV/AIDS.”
John isn’t the only big name lending his voice to the issue of HIV education and prevention: As part of its survey and programs announcement, GLAAD also released a video of other celebrities chiming in.
Further, a report released last week by the Movement Advancement Project and Campaign for Southern Equality revealed that one in three LGBTQ people, or 32 percent, live in the South — despite it having the most hostile LGBTQ policies in the country, with 93 percent of LGBTQ Southerners living in a state with a low LGBTQ-equality score, reflecting laws that impact virtually every aspect of daily existence.
“Contrary to media depictions of LGBTQ people primarily living in New York or California, the South is home to more LGBTQ people than any other region, as well as incredible racial diversity among LGBTQ people,” said Logan Casey, Movement Advancement Project policy researcher and author of the report, in a news release. “LGBTQ advocates in the South are both creative and effective in response to the political landscape and have often led the nation in working in broad coalitions and across a wide range of issues.”
It’s a narrative that has frequently popped up in GLAAD’s other research over the years, continuing to inspire activists like Singletary, whose nonprofit PoZitive2PoSitive has been nurtured by Gilead grants and GLAAD recognition for working hard to get the message out to communities of color — often in spite of huge barriers to care, from unemployment and homelessness to persistent stigma.
“Ending stigma is how we end the HIV epidemic once and for all,” Korab Zuka, vice president of public affairs for Gilead Sciences, tells Yahoo Life. “Programs like PoZitive2PoSitive are doing the hard work needed for America to turn a corner on HIV infection rates. Our partnership with GLAAD gives leaders like Morris a platform we hope inspires others to expand their own anti-stigma work. GLAAD shares our belief in going where the need is greatest to affect change, and working together allows us to reach new audiences and create a bigger impact.”
As Singletary explains it, “Stigma goes before you get HIV. Stigma is with getting tested — stigma starts there, like, ‘If I go and get tested, I’m admitting I’m doing something I ain’t supposed to do [by getting infected]. I’m admitting it.’ And so that’s a huge thing for people.”
Part of what makes him an effective peer advocate is that he has gone through his own journey of coming out and of dealing, with much initial difficulty, with an HIV diagnosis.
“I am a Black man in the South. I am my mother’s only child. I am my father’s only boy. I’m the first to go to college and graduate. The next thing for me to do was get married and have kids,” he says. “I broke hearts. I hurt feelings — and all of which I put on myself. Stigma is a self-thing,” Singletary says.
That pressure, he adds, led him to “some really rough times mentally,” including with drug-abuse issues. “It went from … not knowing how to ask for help to me wanting to commit suicide without committing suicide, which means I didn’t take my meds,” he says.
Now that he’s come through the other side, Singletary is using his experience to help others, including through his nonprofit’s Facebook page, where he posts educational and supportive videos, often leading viewers directly to the care that they need. He also attends medical appointments with people who need a bit of hand-holding, and focuses much of his outreach efforts on prevention, spreading the word about PrEP and PEP, which are widely available pre- and post-exposure prophylactic HIV prescription drugs.
“This is the scary part: So many people do not know about PrEP. I educated [recently] in Atlanta — a group of 18- and 19-year-olds from Huntsville, Alabama — and they never heard of PrEP. And I said, ‘Hey, y’all, I know all y’all is sexually active, and there’s nothing wrong with that!’” In September, Singletary will continue spreading the word, hosting a virtual “PrEP Rally” ahead of Atlanta Black Pride Weekend.
All in all, what Singletary does through his HIV work — and what the new dedicated staffers of GLAAD will be able to do through the Gilead grant — is vital, and complex, aiming for more encouraging survey results next time around.
“It’s a layered program of me trying to teach people and show people that you’re a whole person,” he says. “So, yes, you live with HIV, but HIV is not you. You’re so much bigger and better than that.”
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