UPDATE: Individuals and organizations can add their names to the letter; the deadline is Thursday, Feb. 29. Individuals can add their name here. Organizations can add their organization to the letter here.
A coalition of HIV activists and about 60 organizations are sending a letter to the National Institute of Allergy and Infectious Disease (NIAID), calling on the agency to require the use of non-stigmatizing language in HIV research.
Addressed to NIAID director Jeanne Marrazzo, MD, MPH, who was named to the position last August by the National Institutes of Health (NIH), the letter asks for changes in HIV-related language policy to be established across the organization, removing stigmatizing and dehumanizing terms such as HIV-infected, populations and subjects when referring to people living with HIV. As one of the 27 agencies within the NIH, NIAID conducts and provides federal funding for research on infectious diseases, including HIV. The proposal would apply to all NIAID-published documents, including grant applications, materials for clinical trials and NIAID-funded research papers.
“We are calling on you as the new NIAID Director to create a new era, fostering the use of appropriate and person-centered language for a new generation,” the letter said.
The letter went on to elaborate. “Stigmatizing HIV language generally takes three forms: (1) marking or labeling someone as ‘other,’ (2) assigning responsibility or blame, and (3) invoking danger or peril.”
Acknowledging that the use of such language is not intentional, the letter continued. “Many people do not realize many terms are offensive and stigmatizing to people with HIV and affected communities and use old terms out of habit. They are not purposefully trying to be offensive. That is exactly why we are making our requests directly to you since you can help effect the necessary changes much more expeditiously across NIAID.”
“We have a new NIAID director,” said Lynda Dee, from AIDS Action Baltimore, and one of the activists who helped organize the letter. “We want her to know how we feel about this and that it's really important.”
Activists have for years promoted the use of people-first (or person-first) language, which prioritizes the individual over their condition. It’s why saying someone “is HIV-positive” is generally no longer considered acceptable; instead, it is preferable to say a person “is living with HIV.” Similarly, rather than calling someone “a diabetic,” people-first language would identify them as “a person with diabetes.”
While some researchers have adopted the language in their personal conversations and in their work, others have pushed back, saying how they talk among themselves shouldn’t be subject to “political correctness.”
Recruitment flyer asking for volunteers for an HIV cure clinical trial; arrow points to stigmatizing language
It was a recruitment flyer for an HIV cure clinical trial that helped spark the letter. Calling for volunteers, the flyer said, “You may be eligible if you are HIV-1 infected.”
The flyer was seen in the lobby of NIH headquarters in Bethesda, Maryland, during a meeting with members of the community advisory board (CAB) of the Martin Delaney Collaboratories, an interdisciplinary group of advocates and medical researchers who work on developing HIV cure strategies. This was following a number of NIH presentations during the meeting that had included similar language.
Yet, the NIH website includes a style guide to person-first and destigmatizing language; NIAID has its own HIV Language Guide, a downloadable PDF, produced in July 2020.
“It just didn't seem like the NIH was familiar with its own language guide around HIV,” said Michael W. Louella, manager of the Office of Community Engagement at the University of Washington/Fred Hutch Center for AIDS Research. “Hearing the language was sort of triggering, combined with the sudden appearance of this flyer in the lobby. They have a guide on how not to say these things, and yet, no one seems to be actually following it. And so that became the impetus for, How can we fix this? How can we get this addressed?”
Louella added, “It's not so much about being right or wrong, it's about becoming better communicators. I think it's language that separates us, and it’s language that can also unite us. That's what I'm hoping that we get from this effort.”
“We're not trying to call people out or embarrass them,” Dee said. “We're just trying to make them understand, if you're trying to get people to enroll in your trials, don't offend them when you’re trying to get them to help you.”
Another Martin Delaney Collaboratory CAB member, Jeff Taylor from the HIV+Aging Research Project-Palm Springs (HARP-PS), acknowledged that clinical wording is “ingrained” in researchers’ heads. “It's been used in research over many years; they see it in the literature all the time,” he said. “Even though they know that people don't like it, it's really hard to break those habits. So, we thought it was important to go to [NIAID] and say, Remove this language, let people know that it cannot be used.”
If NIAID adopts such a policy, it would apply to researchers’ grant applications, study papers and presentations.
Another term the activists take exception to is sterilizing cure, referring to a therapy that would eradicate or viral clearance—terms that are not as triggering while remaining medically accurate, said Louella.
Controlling how scientists talk to each other is not the goal, Louella, who uses the pronouns they and them, added. “We are talking about when you were talking to a broader audience, where there is a likely chance that there are more than just scientists in the room. I also think it's a good practice for scientists anyway, even if there are no other people in the room, because it’s hard to code switch,” shifting from impersonal vocabulary to person-first language.
“It doesn't hurt for someone to learn how to speak about HIV without needing to use HIV infected or to use certain terms that people find triggering,” they said. “It would be nice to see researchers take this idea on and for them to work amongst themselves, reminding each other, so it's not just put on the shoulders of community members who have always had to fight for dignity.”
The activists are also turning their attention to HIV/AIDS conferences and to medical journals.
Dee commended the Conference on Retroviruses and Opportunistic Infections (often referred to as “CROI”) for being supportive. New guidelines were issued by CROI last year, Taylor said. Dee added that she expects to see continued progress at this year’s conference, set for March 3–6 in Denver.
“We're going to both the journals and to the main conferences like IAS and CROI, asking them to do the same thing, so that hopefully when people are being told across the board, you cannot use this they can't include it in their abstracts, or their presentations. It'll move the needle on this in a way that wasn’t happening before.”
(Although not a medical journal, as a publication that reports on HIV treatment and health, POSITIVELY AWARE is constantly revising its word usage and style, recognizing that language is ever changing. POSITIVELY AWARE is a signatory to the letter.)
Among the organizations adding their names to the letter are:
Advocacy Treatment Group (ATG)
African Alliance
AIDS Action Baltimore
AIDS Foundation Chicago
aidsmap
AIDS Treatment Activists Coalition
AIDS United
BABES Network
BEAT-HIV Martin Delaney Collaboratory
Caring Cross
CEYOHO
Chicago Women's AIDS Project
CHLP (The Center for HIV Law and Policy)
Collaboratory of AIDS Researchers for Eradication (CARE) C.A.B.
Community Expert Solutions Inc
DARE Collaboratory Community Advisory Board
Equality Access to Health and Rights Initiative
G III Associates
Global Alliance For Public Health Intervention (GAPHI)
Good Health Community Programmes
HIV+Aging Research Project-Palm Springs (HARP-PS)
H & B Ministries
HIV and Hepatitis Policy Institute
HIV i-Base
HIV Medicine Association
Impacto LGBT
Joint Adherent Brothers and Sisters Against AIDS
Key Population Consortium of Kenya
Latino AIDS Commission
Latinos in the South
MPact Global Action
NASTAD
National Coalition of STD Directors
National HIV & Aging Advocacy Network (NHAAN)
NMAC
Network of ARV Users in Zambia
NJ Association on Correction
People First Charter
PFLAG National
Pitt CRS CAB
Positively Aware
Program for Wellness Restoration (PoWer)
Red Ribbon Istanbul
Reversing Immune Dysfunction (RID) HIV Community Advisory Board
Ribbon
RID-HIV MDC Collaboratory
Rural Women's Health Project
SAGE
San Francisco AIDS Foundation
SEEDS of Healing Inc
Shanti Project
The Reunion Project
The Well Project
The Wistar Institute
Treatment Action Group (TAG)
Treatment Educat10n Network
UK CAB
Vivent Health
We the Positive / My Brother's Keeper
Woodhull Freedom Foundation