“Infection” is a dirty word
HIV is hitting the headlines for all the wrong reasons.
Just a few months ago, HIV was in the news because the end of the more than 40-year pandemic was in sight. There is still no vaccine or cure for HIV. But treatment and prevention have advanced to the point that scientists have created a drug called lenacapavir that can prevent HIV with a six-monthly, and now annual, injection.
Today, Trump, his minions and his buyer have reversed much of that progress with their unspeakably cruel actions. Again, people are dying without access to antiretrovirals (ARVs), and as viral loads increase in people who can no longer get ARVs, HIV is more easily transmitted.
Icky
So HIV is at the top of the news – and so is the word, “infect”, and its variants to describe people diagnosed and living with HIV. Every single time I see or hear it, I cringe.
“Infect”, etymologists tell us, means to contaminate, pollute, corrupt, fill with disease, spoil … you get the picture. “Infection” is the state of being infected, the state of being polluted, contaminated and so on. And “infectious” means that the pollution, contamination and so on is spread by infection.
So it’s just icky and disrespectful to describe people living with HIV as “HIV infected” or “HIV infections” or even to describe an increase in the number of people diagnosed with HIV as “increased HIV infections”. Then we forget that we are talking about people. And what this does is perpetuate the social stigma that has historically been associated with HIV due to misinformation, fear and prejudice.
When it’s okay
It’s okay to talk about “HIV-infected cells” (not “HIV-infected people”). It’s also considered okay to use the word, “infection”, in some instances, for example, sexually transmitted infections (STIs) and opportunistic infections (OIs). Using “infection” to describe the nature of these conditions does not inherently stigmatize individuals with these medical conditions.
Also, many STIs and OIs can be cured, which reduces stigma associated with these terms. HIV, meanwhile, is a chronic condition that cannot be cured, although it can be managed with ARV therapy.
There are so many acceptable alternative terms. Instead of “HIV infections”, we can talk about “HIV acquisitions” or “HIV diagnoses”. Instead of labelling someone as “HIV infected”, we can describe them as “a person living with HIV”.
Putting people first
It’s called “people-first language” and being respectful to people living with HIV. And it’s not rocket science, although it might require a little conscious effort to start with.
This simple thing – choosing non-stigmatizing language – makes such a big difference. As the International AIDS Society, which organizes the world’s biggest conferences on HIV, says in its “Language matters” campaign:
“At the IAS, we actively use language that puts people first. This is because words have power: they bestow or remove dignity, build or break stigma, and divide or unite the HIV response. Through the words we choose to use at the IAS, we acknowledge that a person is so much more than a condition; we promote inclusivity, dialogue and equality.”
“Infect” is not the only hurtful, inappropriate word in the context of HIV. Some others are “patient” (implies being a passive recipient instead of an active participant in your own health) and “innocent victim” (the worst! Who is “innocent” and who is not?). I’ve put together a list of resources (below) that you can easily consult to find alternatives.
Laying the foundation
Don’t just take it from me. Way back in 1983 – long before effective ARVs had been developed – a group of people living with HIV created a manifesto called the Denver Principles. They asserted:
“We condemn attempts to label us as ‘victims,’ which implies defeat, and we are only occasionally ‘patients,’ which implies passivity, helplessness, and dependence upon the care of others. We are ‘people with AIDS.’ ”
They laid the foundation of what has become known as people-first language. We’ve come far since then, and one thing every one of us can do in this full-frontal assault on progress in the HIV response is to treat people living with HIV with dignity and respect – not least in how we talk about these people.
It evolves
I’ve been in this HIV word minefield for a long time – including being a health reporter on a Sunday newspaper in KwaZulu-Natal in the early 1990s (struggling to find appropriate language) and consulting as a writer and editor for global health organizations for the past decade or two (still grappling with appropriate language).
What I know for sure is that language evolves. So the Denver group in 1983 called themselves “people with AIDS”. Today, effective treatment can stop HIV from progressing to AIDS, and you’ll likely hear people describing themselves as “people living with HIV” – and they are living; with treatment, living a long and healthy life.
Here’s my list. Please share it!
ONE. The People First Charter: “Person-first language simply puts people before their condition, recognising that people are people, and not defined by their condition,” it says. It’s a brief and very useful guide.
TWO. The US National Institute of Allergy and Infectious Diseases (NIAID) HIV Language Guide: The Trump administration removed this guide from the NIAID website (likely because it deals with key populations and issues like race and gender), but you can find it on the PrEPWatch site. It’s one of the best guides around – thorough, easy to use and includes explanations. It points out that “language has the potential to perpetuate stigma, and as studies continue to show, stigma helps perpetuate the HIV epidemic”.
Here’s an example from the NIAID guide. Avoid using “HIV infection/HIV-infected”. Why? Infection carries the stigma of being contagious, a threat, or unclean. HIV advocates frequently highlight the damaging consequences of this word choice. In specific situations, the term “HIV infection” is necessary to describe the biological process. In most cases, however, “HIV” alone accomplishes the necessary communication.
THREE. The UNAIDS Terminology Guidelines: “Language influences the way we think, how we perceive reality, and how we behave. With respect to HIV, language can embody stigma and discrimination, which impacts access to testing, acquisition of HIV, and engagement with treatment,” UNAIDS says. It’s an excellent guide on just about everything, but sadly, continues to use “infection” … maybe in the next revision.
FOUR. The Well Project’s “Why Language Matters: Facing HIV Stigma in Our Own Words”: The guide includes a to-the-point list of stigmatizing language and preferred alternatives. “One way to address internalized stigma is to change the messages we say to ourselves.”
FIVE. The Salamander Trust’s “The power of language”: “An increasing number of HIV organisations, academics and health service providers are thankfully growing to recognise the effects that the language they use can have on what works – or doesn’t – in an effective and ethical response to HIV and AIDS.” This site includes a list of other resources.
SIX. The International AIDS Society’s “Language matters” site: This includes links and a table that lays out the main terms at a glance.
