Understanding Inclusive HIV Language

This week, I'm pausing my TeethTalk articles because I want to talk about an important issue in healthcare that's probably not getting enough attention in our society — HIV.

It is a global health challenge with decades of history. Yet, many misconceptions about it have prevailed today, and how we speak about it can reinforce these misguided beliefs.

As language shapes beliefs and influences behavior, words can play a significant part. On top of that, mainstream media uses misinformation and medically inaccurate terms with an alarming frequency, perpetuating the stigma.

In this week's blog post, I want to share some bilingual HIV and AIDS terminology guidelines (in English and Spanish) for those interested in understanding how to use language to improve people's lives amidst this public health challenge.

Talking about proper language and terminology may not end HIV. Still, it is a great excuse to discuss this issue and why language can be crucial to ending HIV-related stigma. As language professionals, we are uniquely responsible for promoting inclusivity and visibility, for which we must choose our words right.

If anyone close to you is living with HIV, you may already know the nightmare that could become to navigate the healthcare system and disclose their status because they may feel exposed to discrimination, even if unintentional. As a healthcare professional, I have witnessed how even practitioners and medical staff are not exempt from having misconceptions about HIV/AIDS, most of which are rooted in our language.

Eliminating HIV seems unlikely at this point, as with all other viruses. However, there are many efforts in place to develop and study new therapies, prevent the transmission of HIV, and improve the lives of those living with it.

It is a duty to use language that honors and respects the dignity of people with HIV in everyday life, especially in healthcare and clinical research, considering that these trials and drugs wouldn't exist without their collaboration.

Let's explore some basic HIV terminology, People-First Language — an excellent way to put the person before their diagnosis and show respect by addressing who they are, not what they have been diagnosed with — and other conflictive terms we should avoid.

Without further ado, let's dive in!

HIV Terminology Guidelines

⚠️ Avoid: AIDS virus (virus del sida)
No one gets infected with AIDS because it's not a virus — HIV is. AIDS stands for "acquired immunodeficiency syndrome" and is not a condition but a range of conditions. It is developed and cannot be transmitted like viruses to other people.
✅ Try: HIV (VIH)
HIV stands for "human immunodeficiency virus" and is the actual causative agent of AIDS. Therefore, expressions such as "HIV virus" are also incorrect. It is preferred to speak in terms of "being diagnosed with HIV" or "acquiring/contracting HIV."

⚠️ Avoid: HIV/AIDS (VIH/sida)

This combination should be avoided whenever possible because it can be confusing. Most people with HIV do not have AIDS, and terms like "HIV/AIDS prevention" are problematic because HIV prevention comprises entirely different actions than the prevention of AIDS.

✅ Try: HIV (VIH) or AIDS (sida)

Depending on the context, you should use only one term. It's better to use "AIDS" when specifically addressing AIDS. HIV is inclusive of both HIV and AIDS when the reference is not specific, as in "the HIV epidemic." If you need to address both, it is preferred to say "HIV and AIDS."

⚠️ Avoid: contagion (contagio), infection (infección)

HIV advocates frequently highlight the consequences of using these words. These terms have historically been rooted in fear and misunderstanding. They may imply that HIV can be easily passed on, like highly infectious or contagious diseases.

✅ Try: transmission (transmisión), transmissible (transmisible)

"Transmission" conveys a more scientifically accurate understanding of how HIV is acquired. Although "infectious/contagious" should be avoided, it can be used in the context of epidemiology or in vitro studies, not to talk about persons or patients. When referring to people, there are alternatives like "person with transmittable HIV" or "patient with detectable viral load."

⚠️ Avoid: HIV/AIDS infected (infectado/a por el VIH o el sida), HIV-positive (VIH positivo), HIV/AIDS victim (víctima del VIH o el sida), HIV/AIDS patient (paciente con VIH o sida), HIV carrier (portador del VIH), AIDS sufferer (enfermo de sida, sidoso)

People living with HIV do not want to be labeled as victims, which implies defeat. Similarly, they're only patients occasionally, so labeling them as such permanently may imply helplessness and dependence upon the care of others. "HIV-positive" might be a common term, but it also puts the diagnosis before the person.
✅ Try: person living with HIV (persona que vive con el VIH), person with AIDS (persona con sida)
As people living with HIV are not just hosts for a virus, "living with "emphasizes their humanity and is an affirmation of life. Likewise, it is better to keep the terms "HIV patient" and "AIDS patient" for medical contexts when the person with HIV is indeed taking the role of a patient. The group's name should be written out entirely since abbreviations like "PLWHIV" can dull awareness of designated groups of people and give a feeling of being labeled.

⚠️ Avoid: fight (luchar), combat (combatir), battle (batalla), campaign (campaña), war (guerra)

Describing HIV in militaristic ways, such as immune cells fighting HIV like soldiers, may have a hostile connotation. Aggressive words may imply that people living with HIV must be "fought" to reach an end to the epidemic, making them the enemy.
✅ Try: response (respuesta), management of (gestion de), measures against (medidas contra), initiative (iniciativa), action (acción), efforts (esfuerzos), program (program)
These alternatives shift the language from war to collaboration and collective actions. They emphasize a comprehensive, coordinated approach involving various stakeholders, including healthcare professionals, policymakers, communities, and people living with HIV.

⚠️ Avoid: end HIV (poner fin al VIH), eliminate HIV (eliminar el VIH), eradicate HIV (erradicar el VIH)
Eradicating HIV is not an attainable goal — as with all other viruses. We can compare this to the COVID-19 pandemic, where the objective was never to eliminate the virus but to control the transmission and public health crisis it caused.
✅ Try: end HIV transmission (acabar con la transmisión del VIH), end AIDS as a public health threat (poner fin al sida como amenaza para la salud pública)
These terms are in line with actual expectations. We do have measures to prevent the transmission of HIV, and it is indeed possible to treat HIV as an effective action to end the AIDS epidemic as a public health threat. The word "ending" is much softer and just as descriptive.

⚠️ Avoid: high-risk group (grupo de alto riesgo)
This term could be understood as the risk is contained within certain groups, whereas all social groups can be vulnerable. They may create a false sense of security in people who have risky behaviors but do not identify with such groups. It can also increase discrimination against the designated populations.
✅ Try: key population (grupos de población clave),vulnerable population (grupos de población vulnerable)
Key populations are different from vulnerable populations, which are subject to societal pressures or circumstances that may make them more vulnerable or exposed to HIV. Each country should define the specific populations key to its epidemic based on the epidemiological and social context.

⚠️ Avoid: mother-to-child transmission (transmisión materno-infantil)
This term is perceived to have an accusatory tone, blaming the mother for "transmitting" the virus to her child, which can have negative repercussions on the mother, like criminalization, forced sterilization, and physical or emotional abuse by family members.
✅ Try: parent-to-child transmission (transmisión paterno-infantil), vertical transmission (transmisión vertical), perinatal transmission (transmisión perinatal)
Some countries prefer these terms because they're more inclusive. Using them avoids stigmatizing mothers with HIV, acknowledges the role of the father or male sexual partner in transmitting HIV to the mother, and encourages male involvement in HIV prevention.

Sources:

• Let’s stop HIV together. Centers for Disease Control and Prevention. Published November 3, 2022.

• People First Charter. Recommended Terminology. Published July 2, 2022.

• National Institute of Allergy and Infectious Disease (NIAID) HIV Language Guide. Published July 2020.

• UNAIDS Terminology Guidelines - 2015. Published September 21, 2015.