HIV and the LGBTQ Community
*This section was created as a collaboration between GLAAD and Prevention Access Camapign
2021 marked the 40-year anniversary of the first cases of AIDS being formally diagnosed and recognized. GLAAD was created on November 14, 1985, by journalists and writers determined to hold the media accountable for grossly defamatory and inaccurate media coverage of HIV and HIV patients. Today, remarkable scientific progress has made HIV a preventable, treatable, and when treated properly, untransmittable condition. But tremendous stigma remains, compounded by racism, homophobia, biphobia, transphobia, and misogyny. This stigma fuels new HIV diagnoses. Media must do its part to convey facts about HIV to end the stigma and the HIV epidemic, including:
People living with HIV today, when on effective treatment, lead long and healthy lives and cannot transmit HIV. Treating HIV can suppress the virus to the point where it is no longer detected. When it is undetected, it is not sexually transmittable. The key message of the U=U campaign: undetectable = untransmittable. Nearly every mention of HIV in news articles should be paired with this fact.
Approximately 1.2 million people in the U.S. have HIV: 13% of them do not know it.This statistic reinforces both the need for HIV testing and the necessity of ending stigma around HIV testing.
Medications like PrEP (pre-exposure prophylaxis) protect people who do not have HIV from contracting HIV. The Center for Disease Control and Prevention (CDC) states that PrEP (a daily pill) is 99% effective at preventing HIV when taken as prescribed for people who do not have HIV. Nearly every article about HIV today should note the option of PrEP. In December 2021, the U.S. Food and Drug Administration announced its first approval of a long-acting HIV prevention medication. From UNAIDS: “The long-acting injectable cabotegravir (CAB – LA) marks the first time an injectable antiretroviral drug is available as a pre-exposure prophylaxis for HIV prevention. The long-acting formula is a step forward and a valuable addition to the HIV prevention toolbox and will make acceptance and adherence easy. A long-acting PrEP product such as CAB-LA, taken initially as two injections one month apart and then after every two months afterward, could offer a better choice for adults and adolescents at substantial HIV risk who either do not want to take or struggle with taking a daily tablet.”
The impact of HIV is systemic, related to racism and discrimination in healthcare access and in stigma around HIV and being LGBTQ. The CDC notes that Black Americans account for more HIV diagnoses (43% of diagnoses), people living with HIV (42%), and the most deaths among people with HIV (44%) than any other racial and ethnic group in the U.S., despite making up only 13% of the overall U.S. population. According to the CDC, if current rates continue, 1 in 2 Black men who have sex with men will contract HIV in their lifetimes.
Reporting on HIV must include additional context that prevention and access to treatment can be limited by lack of equity in healthcare, housing, and transportation. People most at-risk of contracting HIV are more likely to have limited access to transportation, housing, healthcare, and social support. HIV is not solely a matter of behavior, but of systemic inequities.
There is a troubling lack of awareness about HIV prevention and treatment in the U.S. The 2021 State of HIV Stigma Study, published by GLAAD and Gilead Sciences, shows low levels of accurate knowledge about HIV transmission and persistent stigma toward people living with HIV:
- 48% of American adults feel knowledgeable about HIV, down 3 points from the previous year.
- 87% believe there is still stigma around HIV.
- Only 42% know that people living with HIV cannot transmit the virus while on proper treatment.
- 53% of non-LGBTQ people surveyed noted they would be uncomfortable interacting with a medical professional who has HIV; 43% would be uncomfortable around a hair stylist or barber living with HIV; 35% would be uncomfortable interacting with a teacher living with HIV.
- Levels of discomfort around people living with HIV are higher in the Midwest and highest in the U.S. South.
When reporting on HIV:
- Articles about the state of HIV today should always include two critical facts:
- Undetectable = Untransmittable (U=U): People living with HIV, when on effective treatment, live long and healthy lives and cannot transmit HIV. When someone living with HIV receives effective treatment and follows regimens prescribed by their doctor, HIV becomes undetectable when tested. When HIV is undetectable, it is untransmittable through sex: U=U (#UequalsU).
- HIV prevention works: Medications like PrEP (a daily pill to prevent HIV) are 99% effective at preventing HIV when taken as prescribed by people who do not have HIV.
- Include voices of people living with HIV. Often, news coverage is missing voices of those who are most impacted by HIV issues — the people living with HIV. Hearing from people living with HIV — not just medical experts or researchers — is critically important. Allow people living with HIV to tell their own stories, specifically around conversations about authentic experiences, full healthy sexual lives, and how antiretroviral therapies (treatment) make it possible to thrive while living with HIV. GLAAD and Gilead Science’s 2021 State of HIV Stigma report shows that there is an opportunity for stigma to be lessened by accurate and authentic media portrayals of those who are living and thriving.
- Be intersectional. People living with HIV should be represented across race, age, sexual orientation, faith, and gender identity.
- More than half of people living with HIV are over the age of 50 and many have been living with HIV for years, even decades. By 2030, at least 73% of people living with HIV will be over age 50, with concurrent issues that come with normal aging. They should be included in conversations about HIV and all coverage of an aging America. Whenever possible, reach out to the networks of people living with HIV, listed at the end of this section, for comment or analysis.
- A 2021 CDC report found that “4 in 10 transgender women surveyed in seven major U.S. cities have HIV.” The report also revealed that nearly two-thirds of African American/Black transgender women and more than one-third of Latinx transgender women surveyed have HIV. The study also found that “nearly two-thirds of the women surveyed lived at or below the poverty level, and 42% had experienced homelessness in the past 12 months.”
- Be discerning in whether to run a story that focuses on someone’s HIV status. Some stories about people living with HIV, particularly those in which a crime may have occurred, may fuel stigma. Often, a person’s HIV status will be included in a story purely for sensationalism. Reporters, producers, and editors should ask: Does this story serve a public health purpose? Will this fairly and accurately depict people living with HIV? Does this story increase understanding and decrease stigma? If the answer is no, then the story is likely not worth running. (See below for more guidance on accurately reporting on HIV criminalization.)
- Avoid suggesting that simply being LGBTQ makes one part of a “high-risk group.” Or that the likelihood of HIV transmission increases simply by having sex with someone of the same sex. Do not use the term “high-risk group”: instead use high-incidence population or affected community. People and communities are not inherently “risky.” The preferred terms acknowledge societal challenges and accurately reflect disease dynamics. HIV transmission is tied to specific personal behaviors, stigma, and systemic barriers that affect people regardless of sexual orientation or gender identity.
- Consult HIV research and advocacy groups who have knowledge of the current status of HIV research. Not every medical professional has the most current information about HIV prevention and treatment. The science related to HIV treatment and prevention is complicated and changing rapidly. It is important and critical to contact experts and advocates who can objectively discuss recent advances in prevention, treatment, cure, and the latest research happening in clinical trials that are pivotal to the future of HIV prevention. The National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health (NIH), has four HIV clinical trials networks to advance four key areas of research: HIV prevention,HIV vaccines, HIV/AIDS adult therapeutics, and HIV/AIDS maternal, adolescent, and pediatric therapeutics. The four global networks are: AIDS Clinical Trials Group (ACTG), HIV Prevention Trials Network (HPTN), HIV Vaccine Trials Network (HVTN), and International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT). Additionally, advocacy groups such as AVAC work to accelerate the ethical development and global delivery of HIV prevention options as part of a comprehensive and integrated response to the epidemic. Whenever possible, reach out to these clinical trial networks and advocacy groups, listed at the end of this section, for comment, updates, or analysis.
- “MSM” should not be used to describe men who self-identify as gay, bisexual or queer, individually or collectively, except in specific clinical or statistical contexts. “MSM” is acronym created by the CDC for “men who have sex with men.” For men who do not self-identify as gay or bisexual, and yet engage in sexual activity with other men, the term may not be useful as a description.
- Avoid terms that directly or indirectly pit LGBTQ people against others vulnerable to HIV. For example, references to “the general population” are often used to suggest that gay, bisexual, and queer men, and/or MSM should be considered separate and apart from broader prevention and treatment strategies.
- Avoid reducing people to their HIV status. Always remember that people living with HIV are people first — not a condition or a statistic. People living with HIV live robust, full lives. Personal stories about people living with HIV can help increase knowledge about the disease and decrease the stigma associated with it.
- PrEP and PEP should be presented alongside other methods to present a complete picture of HIV prevention tools. PrEP (pre-exposure prophylaxis) is a daily pill for HIV-negative people that is 99% effective in protecting against HIV from sex. The federal government recommends that PrEP be prescribed for people who have substantial likelihood for contracting HIV. In December 2021, the U.S. FDA announced its first approval of a long-acting HIV prevention medication. A long-acting PrEP product, taken initially as two injections one month apart and then after every two months afterward, offers another choice for HIV prevention to adults and adolescents who either do not want to take or struggle with taking a daily medication.
- PEP (post-exposure prophylaxis) is an emergency medication for HIV-negative people that can help prevent HIV after an exposure. PEP should be started within 36, and ideally no later than 72, hours after exposure to HIV. With expanded knowledge and use of PrEP and PEP, alongside regular testing, condom use, access to clean needles, and mutual monogamy, HIV transmission can be severely curtailed.
- Despite rigorous blood testing and behavioral factors that include all sexual orientations, self-identified gay and bisexual men still face different restrictions when donating blood, tissue, plasma, and organs that is rooted in HIV stigma. Gay and bi men are still subject to a discriminatory deferral period when donating blood or plasma. It is now a three-month waiting period instead of a year-long or lifetime ban thanks to advocacy efforts from medical organizations and LGBTQ organizations, including GLAAD. GLAAD continues to call on the FDA to remove the deferral period altogether in favor of risk-based screening, noting that basing any policy on sexual orientation alone is unscientific and discriminatory. In June 2021, the UK’s National Health Service announced that gay and bisexual men in England, Scotland, and Wales can now donate blood, plasma and platelets. From NPR: “Donor eligibility will be based on each person’s individual circumstances surrounding health, travel and sexual behaviors regardless of gender. Potential donors will no longer be asked if they are a man who has had sex with another man, rather they will be asked about recent sexual activity.”
- Talk to the people who are affected by HIV in your local communities to gain various perspectives for fair and accurate reporting. If you report on HIV and AIDS, please seek information from diverse resources, including talking to people who are living with HIV, public health agencies, service organizations, advocacy organizations, and groups that focus on health education for LGBTQ communities of color (see below).
The CDC has declared that many state laws that increase prosecution or punishment due to HIV status are “outdated and do not reflect our current understanding of HIV” or the 40 years of HIV research and significant biomedical advancements to treat and prevent HIV transmission. The CDC says such laws actually work against public health as they discourage HIV testing and increase stigma.
The term “HIV criminalization” refers to the inappropriate use of a person’s HIV-positive status in a criminal prosecution, typically under an HIV-specific criminal statute, or as heightened charges or punishments under general assault, prostitution, or other statutes. As of 2021, 35 states have laws that specifically criminalize HIV exposure (not transmission) through consensual sex, needle-sharing, spitting, and biting. Many of these laws also target other identities, including sex workers. 12 states have criminal penalities for sex work or solicitation while living with HIV. Public health professionals oppose HIV-specific criminal statutes because they may discourage persons at risk from getting tested for HIV, and make those who do test positive less trustful of public health officials and less willing to cooperate with public health measures. HIV criminalization perpetuates unwarranted stigma and treats HIV differently from other sexually-transmitted infections, which if left untreated, can inflict serious harm or even be fatal.
In July 2014, the Department of Justice called upon states to eliminate or reform antiquated laws that criminalize conduct by HIV-positive people that would be legal if they were not HIV-positive or did not know their status. In 2021, Illinois became the second state (after Texas) to repeal its HIV criminalization law. For detailed information about states with HIV criminalization laws, contact the Sero Project. And to learn more about the 2013 high profile case of Michael Johnson, and how HIV statutes overlap with existing racial disparities in the criminal justice system, see GLAAD’s 2021 State of HIV Stigma Study.
Please reach out to the below organizations — or GLAAD (firstname.lastname@example.org) — to learn more and connect with spokespeople:
HIV Clinical Research Trials Networks and Advocacy Groups: