HIV Stigma Remains High, While Public's Knowledge Remains Low

The level of perceived and actual stigma around HIV remains high, while public knowledge about it remains low, even though there are effective treatments and reliable means of preventing transmission.

Those are among the findings of GLAAD’s State of HIV Stigma Study, released Monday.

Nearly 90 percent of those surveyed said they believe “there is still stigma around HIV,” and a similar percentage agreed that “people are quick to judge those with HIV.”

There’s good reason to believe that. Nearly six in 10 respondents agreed that “it is important to be careful around people living with HIV to avoid catching it.” The percentages were similar for LGBTQ and non-LGBTQ participants. This comes even though HIV has never been spread through casual contact, and even though condoms, clean needles for injection drugs, pre-exposure prophylaxis, and treatment as prevention are all reliable means of preventing transmission. Treatment as prevention means that people with HIV who have suppressed their viral level to the point that it is undetectable have effectively no chance of transmitting the virus through sex.

Only 35 percent of those surveyed agreed that people living with HIV “shouldn’t have to tell others.” And about half were uncomfortable with having an HIV-positive spouse, doctor, or other person in close contact with them. LGBTQ people were more comfortable with people living with HIV than non-LGBTQ people in every scenario.

And despite the development over the past two decades of drugs that suppress the virus, 60 percent of those surveyed agreed that “HIV is a medical condition that can be treated.” Yet 90 percent agreed that “people living with HIV can live productive/happy lives” and that “great strides have been made in treatment.”

Many Americans feel ill-informed about HIV. In the survey, only 51 percent of non-LGBTQ Americans and 55 percent of LGBTQ Americans said they “feel knowledgeable about HIV.” But the survey participants were overwhelmingly for putting out more knowledge. More than 90 percent agreed with statements including “information should be readily available,” “promoting prevention should be a high priority,” and “schools should provide prevention information.”

In conjunction with the study, GLAAD announced its Accelerate Compassion and Accelerate Impact programs, which include media trainings for hundreds of HIV and LGBTQ activists in the U.S. South, regional media work to improve the quantity and quality of HIV and LGBTQ coverage across local media outlets in the region, and recent staff hires and leadership to support both the regional and national work. This work is funded by Gilead Sciences, which also underwrote the survey. GLAAD also released a video (see below) featuring celebrities Peppermint, Sheryl Lee Ralph, Michelle Visage, Tatiana Maslany, Jonathan Fernandez, Daniel Franzese, Parson James, Selenis Leyva, and Asiahn speaking about the study’s findings.

“People living with HIV today are leading long, healthy lives and cannot transmit HIV when they receive proper treatment, but the stigma that they face has persisted for far too long and leads to harmful discrimination,” GLAAD President and CEO Sarah Kate Ellis said in a press release. “HIV issues have flown under the radar, but with advances in treatment and prevention, we urgently need to educate the public on the facts about HIV today. GLAAD’s new programs will ensure that local HIV advocates are front and center throughout national and local media in an effort to educate the public and uplift stories about people living with HIV.”

“Gilead is committed to going where the need is greatest to end the HIV epidemic, and there is no better partner to help us do that than GLAAD,” added Amy Flood, senior vice president of public affairs at Gilead Sciences. “This new survey gives us valuable insight into the role stigma plays as a barrier to care. The solution will require collaboration between the entire community fighting this epidemic, from scientists to doctors and community leaders — and Gilead is proud to be a part of this effort.” 

The State of HIV Stigma Study was conducted online last November and December, among a national sample of 2,506 U.S. adults, age 18 or over, using a sample sourced by Cint, the world’s largest sample exchange. Read a summary here and the full study here.