Dear HIV Researchers, Language Matters.: A Recap from CROI 2023

Submitted on Apr 18, 2023


Bridgette Picou, LVN and logos for the conference and The Well Project.

By Bridgette Picou, LVN

The International Workshop on HIV & Women and the Conference on Retroviruses and Opportunistic Infections (CROI 2023, celebrating its 30th year) took place back-to-back in February 2023 in Seattle, Washington. This was the first in-person gathering for both conferences since the COVID-19 pandemic began, and members of The Well Project's community were on hand (in some cases virtually). Read this author's perspectives and check out all The Well Project's coverage of these fascinating research meetings.

CROI 2023 marked the 30th year of this major conference for the world of viruses including HIV, COVID, hepatitis – and this year, Mpox (formerly monkeypox). Unlike last year, which was strictly virtual, this year's meeting was a hybrid of in-person and virtual. Much like last year, though, it was still intense. Attended by close to 3,000 people, the sheer numbers lent to it being a lot to process, but added to that was science itself. Topics ranging from HIV vaccines, to PrEP (pre-exposure prophylaxis) – including the use of the antibiotic doxycycline as PrEP to reduce cases of syphilis and chlamydia – to women and HIV, to HIV cure, and beyond.

Before I get too far into the actual science, I want to talk about some personal observations and sticking points I felt from CROI. I attended CROI on a Community Scholarship – the purpose of which is to learn about the latest science and innovation and take that knowledge back to the community to inform on where the science of HIV is headed and how it benefits (or doesn't) those of us living with HIV. There remains a divide between community and science. Most think of "Community" as the folks living with HIV, advocates, activists, social workers, those who work in AIDS service organizations and "do the work," so to speak – versus "Science," the folks who do the research, manipulate the virus, and do the math. You know, those who study the "subjects" or quantify the data. After last year's CROI, I wrote about having an epiphany around the fact that while my perspective on HIV is as a human with lived experience, scientists and researchers are connected to my reality of HIV because they are humans who do the work which helps me live with HIV, both longer and more healthily. A human element and connection, right? This year, I was more struck about how the divide between Science and Community is persistently wide – and some of the basic things that keep it wide open.

In my opinion, and through the expressed opinions of others in conversation, language is a persistent and frustrating element that stands between the two worlds. I'm being honest when I say I felt triggered by the number of times I heard the term "HIV-infected person" or "HIV-infected." That is such grossly stigmatizing language. Then there are terms like "study subject" and "risk behaviors" or "at-risk populations." Person-first language is not that difficult. It is a simple thing to replace acquired/acquisition for "infected," volunteer for "subject," and to focus less on "risk behaviors" and more on reasons people may be vulnerable to HIV.

It is baffling to me that no matter how many times folks living with HIV say it, people insist on putting the virus before human experience. It's ironic that we continue to fight 40 years in to communicate the difference between HIV and AIDS, but it took almost no time in comparison for the WHO (World Health Organization) to adopt the term Mpox due to the racist stigma inherent in the term "monkeypox." At some point, the refusal to change the language starts to feel more like disrespect and less like old habits – which is one of the excuses I heard for the behavior. I do believe language is behavior, not just a tool for communication. The science community needs to do better.

Language use aside, CROI always offers a packed three days of information presented in a lot of ways. There are plenaries, oral abstract presentations, posters, and meetings. The posters are set in a hall, and you have the ability to walk through them and speak with the poster authors, which is nice because you can get an in-depth understanding of science. I found the volume of posters this year a little overwhelming; there were literally hundreds of them displayed each day over three days.

The oral sessions are a different experience. They are fast paced, and the information is delivered in sets of three or four related abstracts at a time followed by short question-and-answer sessions. You have to listen fast and process faster.

The symposiums are spaces for attendees to explore big-picture ideas that are considered important to the future of HIV. (Read "Misinformation, Disinformation, HIV, and Us" – a recap by Bridgette of one such symposium at CROI 2023) The opening symposium this year included an appearance by Anthony Fauci, MD, who retired from the NIH (US National Institutes of Health) in 2022 after serving as director of NIAID (National Institute of Allergy and Infectious Diseases) for 39 years. Fauci gave a great talk about the history of CROI and connected the dots between science that has been presented there and the innovations and treatment breakthroughs that have happened in HIV care over the years.

Additionally, there was a community speaker who was nothing short of phenomenal. Yvette Raphael, who is co-founder of Advocacy for Prevention of HIV and AIDS (APHA) in South Africa and a leader in the country's HIV prevention movement for young women, gave the Martin Delaney presentation and spoke passionately about the roles and accomplishments of women and the need to center women in the HIV response. She made it clear that women have been too long ignored in the big picture of HIV. There was a collective, palpable response in the room to her passion and her words.

Watch the full opening session of CROI 2023 on the CROI website

Overall, it always does my nurse heart good to see thousands of medical professionals gathered to further work that goes into the care and health process of people living with HIV. It matters to see how many people are really doing the work. It's easy to feel alone in life with this disease; it's also heartening to know that people care about this work.

Do I think the conference is worth it? Certainly. Do I wish that there was better language governance and behavior? Definitely! I hope at CROI 2024 to see more language justice.

Read all coverage from The Well Project at the International Workshop on HIV & Women and CROI 2023!


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