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HIV Activists, Organizations Call for Less-Stigmatizing Language

February 12, 2016

Despite what your mother taught you about sticks and stones, words can and often do hurt. To combat language that promotes HIV stigma, many groups and activists are calling for a shift in the conversation.

"The language we use to describe HIV can either empower or stigmatize people living with HIV," lead author Vicki Lynn, MSW, MPH, and five co-authors wrote in a sign-on letter to promote the use of preferred language.

HIVE, the Positive Women's Network - USA and several other HIV activist organizations have signed on to the letter in an effort to end stigmatizing language when referring to people living with chronic medical conditions like HIV.

"Researchers, clinicians, advocates and other professionals often use terms such as 'HIV infected' and 'HIV infections' which further stigmatize PLHIV [people living with HIV]," the letter states. "Being referred to as 'infected' repeatedly by medical professionals, the media, and others begins to have negative consequences on a person's self-worth and confidence."

Using what is called "People First Language" can shift the conversation from talking about the disease back to the person, the letter says. According to the letter, this shift can help to eliminate prejudice and remove value judgments about the person.

People First Language isn't limited to medical conditions -- it calls for the use of other non-judgmental terminology regarding lifestyle choices, household compositions and living arrangements that askew societal norms.

Examples of preferred language cited within the sign-on letter include:

Stigmatizing language Preferred language
HIV infected person Person living with HIV, Stage 1 HIV (acute, Stage 2 HIV (clinical latency), or Stage 3 HIV (AIDS)
Positives or HIVers
AIDS or HIV carrier
HIV patient, AIDS patient
Died of AIDS, to die of AIDS Died of AIDS-related illness, AIDS-related complications or end stage HIV
AIDS virus HIV (AIDS is a diagnosis not a virus it cannot be transmitted)
Full­blown AIDS There is no medical definition for this phrase, simply use the term AIDS, or Stage 3 HIV.
HIV virus This is redundant; use HIV.
Zero new infections Zero new transmissions/acquisitions
HIV infections HIV transmissions, received an HIV diagnosis
Number of infections Number diagnosed with HIV/ number of acquisitions
Became infected Contracted/acquired
HIV-exposed infant Infant exposed to HIV
Unprotected sex Condomless sex; sex not protected by condoms or antiretroviral prevention methods such as TasP &/or PrEP
Serodiscordant couple Serodifferent/ magnetic/ mixed status couple
Mother to child transmission Vertical transmission, perinatal transmission
Victim, Innocent Victim, Sufferer, contaminated, infected Person living with HIV (never use the term "infected" when referring to a person), survivor
AIDS orphans Children orphaned by loss of parents or guardians who died of AIDS related complications
AIDS test HIV test
To catch HIV To contract HIV, diagnosed with HIV
To contract AIDS, To catch AIDS Develop AIDS, diagnosed with AIDS. AIDS is a diagnosis and not a virus, AIDS is cannot be transmitted or "passed" to someone else.
Compliant Adherent
Prostitute or prostitution Sex worker, sale of sexual services, transactional sex
Promiscuous This is a value judgment and should be avoided. Use "having multiple partners."
Death Sentence, "HIV is not a death sentence anymore." HIV, chronic health condition, manageable health condition
"HIV does not have to be a life-threatening/ fatal condition." HIV, chronic health condition, manageable health condition
"Tainted" blood; "dirty" needles Blood containing HIV; shared needles
End HIV End HIV transmission/ related deaths/ stigma. PLHIV feel threatened by this, like they need to disappear for HIV to end.
End AIDS Be precise whether or not we are trying to end HIV (avoid, see above) or end AIDS related deaths or diagnoses.

Althea Fung is the community editor for TheBody.com. For her thoughts on the healthcare industry, food and other random musing, check out her personal website, follow her on Twitter or stalk her on Facebook.


Copyright © 2016 Remedy Health Media, LLC. All rights reserved.


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This article was provided by TheBody.
 

Reader Comments:

Comment by: Kevin McCarthy (San Diego CA) Fri., Feb. 19, 2016 at 6:58 pm UTC
A big part of my coming out process was learning what I could about the "gay cancer." I became one of the original volunteers at the San Diego AIDS Project, one of the first such organizations in the country. We were taught that one was not "dying of AIDS," one was "living with AIDS," one was not "infected with hiv," they were hiv "positive." This lead to all the cute names for groups, columns and blogs, "Young and POZ," "POZativily Speaking," and a guy who tells us how "fabulous" his disease is. Thirty five years later, the community is no better off.

Weather a person "catches hiv" or "contracts hiv," weather a person is "compliant" or "adherent," nor weather a "prostitute" is a "sex worker," semantics have nothing to do with biology and the "transmission" of hiv. Further, I never knew the word "promiscuous" was a "value judgement," but "having multiple sex partners," some how does not lead to the same alleged "value judgement?"

Who are these people to come up with a "preferred language" to 'disseminate' information???

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Comment by: kevin paul (sd ca) Fri., Feb. 26, 2016 at 6:29 pm UTC
not for posting.....Y'all edited my comment in the anonymous rant, adding (Paul) to correctly identify me.....Thank you. Can you edit "McCarthy" and make it "Paul?" Continuity. It is my name, Kevin Paul McCarthy.
Comment by: Kevin Paul (San Diego CA) Wed., Mar. 2, 2016 at 10:25 pm UTC
Geeee thanks....now everybody knows who I am. Jokes on you. Everybody in this town already knows who I am. I am the guy who got a bath to shut down because of the crystal use and sales. Guys were effing bareback in the common areas, meaning they did not even bother going into a room. Publisher Micheal Portantino publically did what he could to try to humiliate me. Har har hardy har har....he be the one to take a header out of the sixth floor of the Park Manor, an iconic hotel here in SD. He lied to the community and was about to be indicted for fraud. I now consider you all to be in good company!!! I believe hiv to be a choice and the fundraisers and those of you with a "factious disorder" get really pissed.

Again, if you all thought you "outing" me in some way, ef off and die!


Comment by: Mark F (United Kingdom) Fri., Feb. 19, 2016 at 5:23 am UTC
I was infected with HIV in 2001 (yes, what's wrong with the word 'infected')? I have never referred to myself as HIV positive, as that is most definitely stigmatising. I remember when STD (Sexually Transmitted Disease) was changed to STI (Sexually Transmitted Infection) to make it sound less harsh, which was a good thing.

I agree that a lot of language/expressions surrounding HIV need to change, but the table of 'correct' terms above is taking it too far for me, and like with most things today it is Political Correctness that has gone too far!
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Comment by: jim (boston) Thu., Feb. 18, 2016 at 6:22 pm UTC
I've been living with HIV for nearly 28 years and I think much of this list is ridiculous. You are right - words are powerful and words can hurt, but if you're hurt by the word infection you are way too sensitive. I realize that I can only speak for myself, but MOST of the things on that list are not offensive. I'm less concerned that people have an ultra sensitive and nuanced vocabulary than I am with the attitude behind their words. If people are ignorant or hostile that's not going to be changed by calling it something else.
However, there is one word that I do find deeply offensive and stigmatizing and I don't hesitate to go full tilt ballistic when I hear someone use it. The word is "clean" to describe someone who does not have HIV. That is just so vile and damaging on so many levels it is totally unacceptable and the fact that it seems to be primarily used by gay men makes it even more disgusting.
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Comment by: Vickie Lynn (Tampa) Tue., Feb. 23, 2016 at 6:40 pm UTC
I have been referred to as "infected" for the past 30 years and I guess I am getting tired of the label.
Comment by: jim (boston) Sun., Feb. 28, 2016 at 10:37 pm UTC
Well, I am infected with a virus. That's not a value judgement - it's a fact. I have certainly never thought of it as a label. When a virus enters your blood stream you are infected. Calling it something else doesn't change that. All it does is set up another word for someone else to be offended by a few years from now. In the end we haven't improved our lot in life we've just made it more difficult to talk about it. A list like this just makes it more difficult for people to talk about HIV and by shutting down discussion you end up perpetuating the stigma you are trying to end.


Comment by: MICHAEL (OCALA, FL) Wed., Feb. 17, 2016 at 6:36 pm UTC
I was in the ER some months ago for shingles and even the nurse asked me if I had "full-blown AIDS".
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Comment by: Vickie Lynn (Tampa) Tue., Feb. 23, 2016 at 6:34 pm UTC
Michael,
Thank you for sharing this. Even the medical profession uses terminology incorrectly.


Comment by: Kevin (Nyc) Tue., Feb. 16, 2016 at 6:47 pm UTC
The cure for Hiv will be no ccr5recepror the virus can attach to. Genetically there are very few people with this profile in the US so positive and negative status now means in 2016 take a pill against attachment of HIV virus pre seroconversion or post. This is the true language that matters. Hiv has proven so successful its presence in our society and world in a sexually mature and active person post childhood means exposure risk to too high to really use terms like pre exposure honestly and the cdc should never have accepted such a bad description of what is pre seroconversion. Hiv is everyone problem stop projecting that on your sex partners and practice taking s pill to prevent Hiv with oneself by treating oneself whether prep or Tasp you are stopping this paradigm with yourself and that must be celebrated and rewarded not stigmatized and punished.
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Comment by: Vickie Lynn (Lutz, Florida) Tue., Feb. 16, 2016 at 4:49 pm UTC
Thank you for sharing the information! #languagematters
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Comment by: Kevin Paul (San Diego CA) Fri., Feb. 19, 2016 at 7:21 pm UTC
Perhaps we should stop calling hiv a "virus." How about "the love bug?"


Comment by: Anonymous Tue., Feb. 16, 2016 at 9:05 am UTC
"PLHIV feel threatened by this, like they need to disappear for HIV to end".

Are you kidding me? We don't "feel threatened by this, like we need to disappear". The word "feel" would imply that the sentiment was the result of subjective interpretation. Much of the language surrounding "the end of aids" has used sentences like "end new infections, and then when everyone with HIV finally dies we'll finally achieve our cure". There's not much subjective interpretation required to infer that we're being asked to disappear.

Part of the problem is that "activism" has allowed itself to become bogged down with semantics while disregarding very real problems surrounding the virus. Prime among these problems is that in the last few years, there has been a focus on HIV that quite explicitly excludes or disregards people actually LIVING WITH THE VIRUS. We saw this with the 2015 "World Aids Day", which seemed to be a 24 hour long infomercial for PrEP. This trend to "ask people with HIV to go away" is much more significant than conflating "AIDS" and "HIV", and has been observed by several HIV- lay people I've seen, who've noted a tendency to "treat people with HIV like goners".

Altering our words and phrases is like slapping new paint on an old house. It might make things seem better at a glance, but the place is still a mess.
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Comment by: Jimmy (Western New York State) Tue., Feb. 16, 2016 at 2:22 pm UTC
Hey, Anonymous, you need to veg a bit on this one. Sorry to say, but come on, pal. Really??

I've thought, gosh, so many times that language either when reading articles in the mainstream press or just hearing people speak, that such an excellent language guide offered by Althea Fung would not only be helpful, it also would reduce fear and stigma.

I am also thrilled about the more widespread acceptance in PrEP, and heck, don't we all need this information to be out there?

I wish I had this chart years ago. And people need this chart even today. Good job, Althea Fung!! Thanks!
Comment by: Vickie Lynn (Lutz, Florida) Tue., Feb. 16, 2016 at 4:54 pm UTC
No one is disregarding the problems surrounding the virus. Language is powerful and can change people's perceptions, attitudes, and awareness. Using less stigmatizing language is just one way to help reduce stigma and change the general public's opinion about HIV and about people living with HIV. If we do not take a stand researchers, professions, and the media will continue to "label" us how they want. After 30 years of living with this virus it is time for change.
Comment by: Kevin Paul (San Diego CA) Fri., Feb. 19, 2016 at 7:09 pm UTC
I agree. Semantics is like "slapping new paint on an old house...but the place is still a mess."
Comment by: Anonymous Wed., Feb. 24, 2016 at 2:44 pm UTC
For people who advocate an Orwellian list, you're awfully comfortable overlooking the implications of what was written here.

Again, let me be clear. There is no "feel like we need to go away". The problem is that the "End of AIDS" rhetoric consistently anticipates the death of people living with HIV as a means to favor those who don't have it. There are multiple ways to "End AIDS", but we choose isolation. This is an human rights violation, and it is significantly more offensive than "slut shaming" us if we're promiscuous.

I'm not sure what candyland you people live in, but as a person with "HIV, not AIDS", I don't find the word "AIDS" insulting at all. What I find insulting is that we've allowed our safety net to become so frayed that my HIV could conceivably progress to AIDS due to reasons outside my control.

"Transmission" vs. "Infection" is not insulting. What is insulting is that we're putting people in prison for behaviors we know don't cause infections.

I'm not saying language doesn't matter. Words and phrases like "clean" and "DDF" have been incredibly damaging to the well-being of people with HIV. Conspicuously, there is minimal discussion of those. Instead, we're being overly critical of words which were recently considered perfectly fine. Are we really "fighting stigma", or just controlling the conversation?

No "stigmatizing language" is as insulting as attempts by elite HIV media to define Our agenda, with zero regard for the commonsense needs of people living with HIV or the rest of society. Who are these "activists"? Why are they allowed to speak for an entire community when their priorities are tangential to the needs of every single person I know who actually has the virus?

Finally, if the word "infection" offends you, I suggest you come to grips with reality. YOU HAVE AN INFECTION! If you don't like that-and you shouldn't-FIGHT TO CURE THE INFECTION.
Comment by: Kevin (Paul) Thu., Feb. 25, 2016 at 5:50 pm UTC
"Are we really 'fighting stigma,' or just controlling the conversation?" Anony., I would quote you....I have just experienced a true, by the dictionary definition, epiphany. I had a sudden, striking realization as to what bothers me about the "elite HIV media."


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