2021 State of HIV Stigma Study

Measuring American attitudes toward HIV and the impact stigma has on people living with HIV

The HIV epidemic won’t end until we tackle the effects of stigma. We partnered with Gilead Sciences and Southern AIDS Coalition to better understand how much stigma still exists and its impact on those living with HIV. Despite making significant progress towards ending the epidemic, a majority of the public feels uncomfortable, uninformed, and concerned about HIV and people living with it. The State of HIV Stigma survey confirms that stigma and misinformation around HIV is widespread, and there is much work to be done to educate the public before we can end the epidemic once and for all.

Foreword:

The GLAAD 2021 State of HIV Stigma Study paints the picture of the challenges we must overcome to end HIV-related stigma. The findings reflect a vast lack of understanding of HIV and how it can be prevented, as well as significant discomfort and unfounded fear about people living with HIV. The Deep South has the highest rates of HIV diagnosis, yet the study reveals that the U.S. South also has some of the highest discomfort levels pertaining to the virus. This is a perfect storm for the perpetuation of misinformation. Read More

Introduction:

The 2021 State of HIV Stigma Study is a national survey in partnership with the Gilead COMPASS Initiative measuring American attitudes toward HIV and people living with HIV. In this report, we also systematically review the history of HIV stigma
in the media to document the current state of research and offer recommendations for media to increase and improve coverage of HIV and people living with HIV. This report also offers strategies from leaders in HIV education and treatment for defeating stigma in all areas of society.  Read More

Read Full Report

GLAAD 2021 State of HIV Stigma Study

The 2021 State of HIV Stigma Study was conducted through an online survey between January 14, 2021 to January 29, 2021, among a sample of 2517 U.S. adults, 18 years or over.

The findings paint a troubling picture of the general US population’s overall attitude and knowledge around HIV, particularly levels of accurate knowledge around HIV transmission and stigma still present towards People Living with HIV.

Americans still don’t know much about HIV

The study found less than half of Americans, 48%, feel knowledgeable about HIV, down three points from a year ago.

Discomfort around people living with HIV

There is still unfounded fear about people living with HIV, even though those receiving proper medical treatment cannot transmit HIV. The study asked about feeling discomfort in interactions with the following people with HIV. 53% of non-LGBTQ people surveyed noted they would be uncomfortable interacting with a medical professional who has HIV, 44% uncomfortable around a hair stylist or barber living with HIV, 35% with a teacher living with HIV.

Regional differences

Discomfort levels around people living with HIV are higher in the Midwest and highest in the U.S. South.

Media representation

On a more positive note, 56% of non-LGBTQ respondents noted they are seeing more stories about people living with HIV in the media, up four points from 2020.

Understanding HIV

Only 64% of those surveyed agree with the true statement that medications exist to protect someone from contracting HIV; just 42% agree with the true statement that people living with HIV who are on proper medications cannot transmit the virus.

Methodology 

The 2021 State of HIV Stigma Study was conducted through an online survey between January 14, 2021 to January 29, 2021, among a sample of 2517 U.S. adults, 18 years or over. The sample was sourced and aggregated through CINT, the world’s largest consumer network for digital survey-based research with access to 144 million panel members globally, was consistent with the inaugural 2020 sample survey.

Strategies to Combat HIV Stigma:

The Gilead COMPASS Initiative® is working to address the HIV/AIDS epidemic in the Southern U.S. by collaborating with local community organizations to meet the needs of people living with and impacted by HIV/AIDS. The following COMPASS leaders  are calling for specific actions to reduce stigma.

1. Provide tangible and accessible information to counter misinformation

“People fear what they don’t know,” states Kia Colbert, Director for the COMPASS Coordinating Center at Rollins School of Public Health at Emory University. “Stigma is rooted in fear, thus for every accurate piece of information and knowledge that is available, there is an equal amount of misconceptions based on preconceived notions about the virus.”

2. Build trust between healthcare provider and patients

“The doctor/patient relationship – like all relationships – takes work,” notes Ian L. Haddock, Founder and Executive Director of The Normal Anomaly Initiative. “Each person comes with a wealth of knowledge – one with medical experience and the other with lived experience. Physicians often don’t recognize the patient’s expertise.”

3. Confront fear with facts and honest conversation

“People still see HIV and AIDS as a death sentence,” says Tatiana Williams, Co-Founder & Executive Director of Trans Inclusive Group. “ We have to normalize the conversation surrounding HIV, and how HIV impacts the entire community, not just certain communities and/or sub-groups.”

4. Apply lessons from COVID-19 response

“The urgency of addressing COVID-19 revealed our ability to swiftly build infrastructure for a response that is comprehensive and accessible,” shares Dafina Ward, Executive Director of Southern AIDS Coalition. “COVID-19 has provided an opportunity for dialogue regarding transmission of viruses, vaccines research and more, while making more people receptive to the conversation. COVID-19 has also demonstrated the layered impact of diagnosis on all aspects of a person’s life, and the inequities that must be addressed to ensure that every person impacted receives the same level of care.”

5. Consider internal and external factors

“It’s important to remember that stigma is not an issue that only manifests itself externally,” says Sandra C. Melvin, Chief Executive Officer of the Institute for the Advancement of Minority Health. “We have to think about the ways it impacts one’s mental health and their self-esteem. We must remember, even with all the COVID-19 conversations, that discrimination and human rights violations are major factors that drive HIV stigma in today’s society.”

A Study of HIV Stigma in the Media:

Musical artists have historically led the way in raising awareness about HIV and accelerating acceptance of people living with HIV. Pop culture icons like Elton John, Madonna, Sheryl Lee Ralph, Naomi Campbell, Magic Johnson, Paula Abdul as well as the late Princess Diana and Elizabeth Taylor used their platforms to elevate understanding and compassion.

Unfortunately, stigma, lack of education, and hate speech around HIV/AIDS continues to fuel fear. After Easy-E, the iconic front man of N.W.A. died in 1995 from HIV-related health complications it became clear that HIV and AIDS impacted everyone- not just white gay men. Forced to address the impact HIV/AIDS has, particularly on the Black community, artists and emcees reckoned with their duty to use the powerful political potency of hip hop to shift mainstream conversations about the pandemic. The 1996 collaborative album America is Dying Slowly centered Black male youth and featured acts such as Common, Wu-Tang Clan, Goodie Mob, Spice 1, Mobb Deep, and De La Soul. These artists affirmed the influence and power of musicians to shift public opinion and intervene in a global health crisis. Read More

A Culture of Shame:

People living with HIV now live full lifespans, but the media has failed to create dynamic characterizations that transcend one-dimensional victimhood, or criminality. Black and Latinx communities not only make up a significant portion of HIV cases in the United States, they continue to suffer rampant criminalization.

The CDC says state laws against people living with HIV, many created in the early days of the epidemic when far less was known about the virus and before treatments were developed, are now outdated. State laws criminalizing HIV exposure do not reflect current research and advancements to prevent HIV transmission. Read More

Media Case Study: HIV Criminalization, Misinformation, and Race:

In Missouri in 2013, Michael L. Johnson, a young Black man, was arrested for allegedly failing to report to a white male sexual partner that he was living with HIV before engaging in condomless sex. In 2015, he was originally sentenced to thirty years in prison for “reckless transmission of HIV– a sentence longer than almost any other crime in the state including the state’s average for second degree murder. The nexus of HIV stigma and the prison industrial complex continue to disproportionately impact Black gay men. According to the Centers for Disease Control, if current rates continue: 1 in 2 Black gay men who have sex with men will contract HIV in their lifetimes[4]. Read More

Stigma in the Deep South:

In an expansive review of the literature, a particular emphasis was placed on HIV-related stigma where it is the most prevalent, in states that also have limited HIV coverage across the Deep South including Alabama, Georgia, Louisiana, Mississippi, South Carolina, and parts of Tennessee.

In the void of accurate information about HIV and AIDS, too many people believe the lie that HIV is still a death sentence. In addition, many in the South still fear that HIV and AIDS is something that can be “caught” by the simple gesture of touch, leading folks to fear that coming in contact with someone who has the virus could lead to a death sentence. Combined with lack of universal healthcare, widespread poverty, and few opportunities for rapid HIV tests, a significant portion of new HIV cases continue to emerge from the South. Read More

Acknowledgements:

GLAAD is the world’s largest LGBTQ media advocacy organization. GLAAD rewrites the script for LGBTQ acceptance. As a dynamic media force, GLAAD tackles tough issues to shape the narrative and provoke dialogue that leads to cultural change. GLAAD protects all that has been accomplished and creates a world where everyone can live the life they love. Read More