HIV Media Guidance

OVERVIEW

These guidelines are intended to assist reporters, journalists, and the media in creating fair and ethical stories about people living with HIV and HIV policy, prevention, and treatment. It is critical that the media uphold the highest standards for fair and ethical journalism when covering HIV. In the United States, 1.2 million people are living with HIV, and one in eight do not know their status. In 2022, more than 38,000 people received an HIV diagnosis. LGBTQ+ men, Black people, trans women, and people in the South are disproportionately affected. Because of racism, transphobia, and discrimination, as well as a lack of access to prevention, testing, and treatment, Black, Latina, and Indigenous trans women are disproportionately harmed. Continue Reading

Available data from a 2020 CDC report found that four out of ten trans women were living with HIV, and trans women of color faced even higher rates of HIV, due to systemic barriers and oppression like racism, transphobia, stigma, and unmet gender affirmation needs.In the more than forty years since HIV was first diagnosed, there have been remarkable advancements in the treatment and prevention of HIV. There are widely available medications, PrEP (Pre-Exposure Prophylaxis) and PEP (Post-Exposure Prophylaxis), that prevent HIV transmission. With access to health care, people living with HIV and receiving treatment are living healthy and fulfilling lives. In fact, more than half of people living with HIV are over 50 years of age. Some people living with HIV may have undetectable levels of HIV, meaning they cannot transmit HIV to sexual partners. Reporters covering HIV and related topics have a duty to the public to fully understand the current landscape and accurately cover it. Public awareness and education are important factors in reducing the transmission of HIV and shaping public policy. Studies show that media coverage of HIV often contributes to increased stigma.

Guiding principles for reporting on HIV

1. Include people living with HIV.

No story is complete without the perspectives of those who are most directly impacted. Bear in mind that this is a diverse group, and that media representations of people living with HIV shape public perception.

2. Do no harm and avoid sensationalism.

Stigma, racism, and discrimination contribute to the ongoing HIV epidemic. Studies have shown that racial and other disparities in HIV are not based on behavior but instead are rooted in economic barriers, lack of access to health care, and bias and discrimination by healthcare providers. Media coverage of the disparate impacts of HIV on specific communities can sometimes have the unintended effect of reinforcing negative stereotypes or perpetuating stigma. Don't use language that is alarmist or creates fear around HIV. Focus on facts and evidence-based information. Do not identify individuals who have not chosen to be public, and do not use information that could be used to identify individuals, such as photos. When covering court cases, do not imply that someone charged with a crime is guilty. When covering public figures, avoid repeating misinformation, or if necessary, use the truth sandwich approach.

3. Undetectable = Untransmittable.

People living with HIV who are receiving treatment may have an undetectable viral load. Numerous scientific studies have shown that people with an undetectable viral load cannot sexually transmit HIV. In public education, this message is summarized as U=U.

4. Prevention works.

There are widely available medications that can prevent HIV transmission. Prevention medications include PrEP (pre-exposure prophylaxis) and PEP (post-exposure prophylaxis). Taken consistently as a daily pill, PrEP reduces transmission of HIV from sex by about 99%. Emphasize prevention. For instance, when discussing sex without condoms or PrEP, acknowledge that HIV transmission is less likely when someone is on effective HIV treatment and has an undetectable viral load.

5. Consult medical experts with specific HIV expertise.

Because much has changed in recent years, not every medical professional is aware of the latest advancements in HIV. Even leaders and experts in other healthcare fields may not be well informed about HIV treatment and prevention protocols and the most recent science and research. Additionally, make sure every medical claim is fact checked and backed by a reliable source. Because of widespread misinformation about HIV, sources may repeat inaccurate information. For instance, spit does not transmit HIV, yet prosecutors continue to charge people with attempting to transmit HIV via saliva.

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HIV Is Not A Crime

Currently, 26 states have specific criminal penalties related to HIV. This is referred to as HIV criminalization. Even in states without specific criminal penalties, people are prosecuted under general criminal laws. HIV criminal laws increase fear and stigma and can decrease testing and treatment. This fear is often summarized in affected communities as “Take the test, risk arrest.” In many states, a felony conviction means someone can be denied a job or housing, lose access to social services, or lose the right to vote and participate in civic life. Despite decades on the books, there is no evidence that HIV criminal laws benefit public health. Continue reading

The criminal justice system, including HIV-related penalties, disproportionately harms Black communities and marginalized groups. State-specific reports from the Williams Institute have found that Black people are likely to be disproportionately criminalized because of their HIV status, with significant variation by state. When people living with HIV are incarcerated, they may face a lack of adequate health care that can lead to worse health outcomes, as well as stigmatization and poor treatment. Incarceration is much more expensive than the cost of treatment and health care.

Specific Terms
Terms to Use	Terms to Avoid
People living with HIV	Victims HIV-positive Carriers
Diagnosed with HIV Transmission of HIV Transmitted HIV	Infected with HIV Disease vector
HIV	Only use HIV/AIDS as a general term when the subject matter warrants it. Only use AIDS when referring to someone who has been diagnosed with AIDS. Never use “full-blown AIDS.”
Sex more likely to result in HIV or STI transmission Sex without prevention methods Condomless sex	Risky sex Unprotected sex
Groups disproportionately affected by HIV Communities facing barriers to HIV prevention and care	High-risk groups
Use person-first language: - people who use drugs - people living with HIV	Drug user Drug addict HIV patient

Never use terms like “clean” to describe someone’s HIV status; it is stigmatizing and implies that people living with HIV are “dirty.”

Be precise and specific when referring to bodily fluids. Some fluids, like urine and saliva, do not carry or transmit HIV. Only four bodily fluids can transmit HIV: breastmilk, blood, semen, and vaginal fluids.

While the term “men who have sex with men” or MSM is commonly used in public health research and reports, it should not be used with general audiences. For decades, HIV data and collection methods have systematically misgendered transgender and gender expansive communities, especially trans women. Data sources often ignore the full spectrum of gender identity in LGBTQ+ communities, for instance by not acknowledging non-binary people. Also, the term “men who have sex with men” should not be used as an umbrella term for men who are gay, bisexual, or queer, as it overly simplifies identities and relationships. Finally, there is a racialized dimension to the term MSM. It was created by public health officials specifically to address the fact that HIV and AIDS research and advocacy was often overly focused on white gay men, yet it ignores labels that communities of color have chosen for themselves, such as same-gender loving.

Because of these issues, the term MSM should only be used for public health audiences or when directly quoting sources or data. For general audiences, make sure that language is specific, respectful, and acknowledges the reality and diversity of LGBTQ+ communities.

For further examples of specific terms to use and avoid, please consult the comprehensive 2024 guide from the National Institute for Allergy and Infectious Diseases.

Resources
‍These organizations represent HIV advocates and people living with HIV:

The CDC and HIV.gov have up-to-date information on HIV’s impact on specific communities, HIV science and research, prevention, testing and treatment, and national efforts to end the HIV epidemic.

The 2024 comprehensive language guide from NIAID is a useful resource for reporters, health care professionals, and policy makers.

The Center for HIV Law and Policy, CHLP, offers resources on HIV criminalization and the current status of HIV law and policy across the states.

The Williams Institute at UCLA School of Law publishes state-specific factsheets on HIV and public health and HIV criminalization, including racial disparities.

For an expert medical perspective, NASTAD represents public health leaders in HIV and hepatitis in all US states and territories.

Equality Federation is a national network of 48 state-based LGBTQ+ advocacy organizations. We can provide a national perspective, recommend other national organizations with relevant expertise, and connect reporters to leaders working in their states to modernize HIV laws.

Equality Federation appreciates the collaboration of our coalition partners and their many contributions to HIV advocacy, including best practices for talking about HIV.