AIDS groups remove 'AIDS' from their names
HIV/AIDS / Distancing themselves from the stigma
Richard J Dalton Jr / Vancouver / Monday, January 31, 2011
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Three decades after AIDS was identified, some Vancouver HIV/AIDS organizations are considering a dramatic transformation: removing the acronym "AIDS" from their names.

The organizations are contemplating the change to reflect that many of their clients are living with HIV, not AIDS.

While AIDS is no longer a death sentence, staff at the organizations say, the word still carries the stigma, deterring people with HIV from associating with AIDS groups.

"AIDS still conjures up those scary images of dying alone in a hospital bed or where you're isolated," says Ian Nelson, reception services coordinator for the BC Persons with AIDS Society (BCPWA). "And those images are really, in my mind, gone."

BCPWA will vote by Feb 11 on seven possible names, five of which don't include "AIDS."

Last week, YouthCO AIDS Society, officially called Youth Community Outreach AIDS Society, presented members with four names, none of which includes "AIDS."

At AIDS Vancouver, a name change is "something that we're always talking about. Should we be doing it? Are we being a detriment to potential new clients or consumers because the name is still stigmatized so much?" executive director Brian Chittock asks.

An HIV-positive person is considered to have AIDS when his or her body can no longer fight infections.

"When AIDS first came onto the scene it was 'AIDS,'" Chittock said. "People were contracting various diseases, and they were being diagnosed with a syndrome. And in response to that, almost all the AIDS service organizations back in the early 1980s were being called 'AIDS whatever.'"

Now many people are living for decades with HIV without developing AIDS.

AIDS Vancouver hasn't formally considered a name change. "For me the biggest issue is: how can we de-stigmatize HIV and AIDS so that people are not afraid to be associated with us?" Chittock said.

But others have made the switch. AIDS Network of Edmonton changed its name to HIV Edmonton in 1999. The AIDS Committee of Toronto is more commonly known by its acronym, ACT.

Last year, BCPWA proposed the name "HIV Society of BC," but members rejected it. This month, members will reconsider whether to take that name, keep the group's current name or switch to "HIV/AIDS Society of BC" or four other names that include "Living," "HIV," "+" or "Positive" but not "AIDS."

"Twenty-five years ago, 'AIDS' was very fitting to have in our name, and we were persons living with AIDS," Nelson says. "HIV and AIDS is such a continuum these days that with the new medication now, many people probably will not experience AIDS. And so, in that context, somebody that's newly diagnosed with HIV really would probably wonder why they want to join an AIDS organization. That would almost be giving up the fight."

Still, members are torn.

"There's a lot of mixed views from the membership from what I hear," Nelson says.

YouthCO AIDS Society is considering the name "YouthCO HIV" and "Hep C Community Outreach" among other names, says Jesse Brown, its community engagement coordinator.

Brown says "HIV" and "Hep C" — not "AIDS" — better reflect the organization's mission to support positive youth and to educate youth on HIV.

An update to members says, "By removing 'AIDS Society' from our official name we feel that the historical weight of trauma and death associated with AIDS is lifted and our name can better reflect our mission."

The renaming originated when the group was rebranding its website last summer. The website already uses the name YouthCO HIV and Hep C Community Outreach, but the group is still considering other names, Brown says. YouthCO plans to survey its members on the name change.

Rick Marchand, managing director of the Community-Based Research Centre, which conducts research on gay men's health, says AIDS is in decline while HIV remains quite prevalent.

His research shows one in five men in gay venues in Vancouver are HIV-positive.

"How many of them are living with AIDS?" he asks. "Fewer and fewer."

The personal experience of Brown, born five years after the death of five gay men in San Francisco brought AIDS to light in 1981, demonstrates the change.

"I know lots of people with HIV but no one who's ever been diagnosed with AIDS," Brown says.

Nevertheless, changing a name can be a sensitive issue, Marchand says.

"These things don't happen lightly," he says. "There's a lot of emotion attached to it."

 



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Reader Comments


 
It's behaviour that still needs changing
If I thought for one minute that removing the name AIDS would change the behaviour of kids too young to remember when AIDS was killing - dead - our friends, or would facilitate more people seeking help, or would change the lax attitude towards infection (something like "I'll only have HIV and there's pills for that so why should I care if I become infected?") then I'd be all for springing for the cost of removal of AIDS from websites, letterhead and pamphlets.
Kenn Chaplin, Toronto Ontario
01/31/11 10:19 PM EST
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Still have AIDS, we didn't all die
I was diagnosed with AIDS in 1994, and am dealing with a myriad of health issues because of the length of time I have been HIV positive (since 1989), nearly 20 years of treatment and my age (55 years). Feels to me that all this talk of name change is more exclusionary, than inclusionary. I really hate to read that the current thinking is that HIV diagnoses doesn't mean AIDS. Heard of Africa? How about resistance? For many of us in Canada, HIV did and does mean AIDS. I think this is the slippery slope that will lead to the depoliticizing of HIV/AIDS. I think it is a great dishonour to our history and to us as a community, that the word AIDS be removed from the name of an AIDS organization.
Janet Conners, Halifax Nova Scotia
02/01/11 9:53 AM EST
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Lets look at and talk about it!
I like the article and think it is time for the discussion to happen especially with changes in medications and illness realities for those newly infected as HIV positive, those diagnosed with AIDS as first diagnosis (it still happens at hospital emergency rooms)and long term survivors with a history of treatments, side effects and long term health issues not yet identified as a result of long term exposure to HAART therapies. We must however not lose the history of loss and challenges with governments, pharma's and society perceptions while trying to remove the stigma from what is still the "reality" for many being HIV is AIDS (eventually). Forgetting the past causes repeating previous errors. Bring on the discussion as we revisit so many areas of HIV and coinfections prevention and treatments.
Mark Randall, Calgary Alberta
02/01/11 11:29 AM EST
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Diagnosis AIDS = Advance HIV Diagnosis
I have been HIV+ since 1989. I started taking meds 10 years after my diagnosis. I have in that time been on and off meds 3 different times for various times each time. In that time I have had PCP Pnumonia twice. PCP is an AIDS related illness. Once you have contracted an AIDS related illness you are considered to have AIDS. I am now on a steady regiment of meds and have my highest CD4 count (490) in ten years and have been UNDETECTABLE for over a year now. I do believe that the younger generation is becoming complient with HIV or living with it. I also believe that thew word AIDS also still holds a stigma to it. I believe that more younger people may search out learn more information in regards to HIV than AIDS. There needs to be be more information available to these people on the LONG TERM affects that the disease and meds will have on your body and mind. I may have a health immune system but the years of fighting the disease have taken its toll in other health/mental respects. EDUCATION IS AND ALWAYS WILL BE KEY!
Glenn Anderson, Vancouver British Columbia
02/01/11 12:32 PM EST
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Echoing other comments
I understand the motivation for discussing this change; I am also overwhelmed by the thought of having to implement it. I'm fairly sure the decision not to include the term AIDS in our name (Positive Women's Network) was intentional, for confidentiality reasons more than anything else. But I share the concerns other commenters have expressed about the premise that HIV doesn't cause AIDS anymore. In many communities (for women, Aboriginal folks, injecting drug users, and Blacks in the US ...), there are still far too many AIDS diagnoses. Still, I'm looking forward to BCPWA's new name, embracing the new accronym-only names (like YouthCO and CATIE), and hoping we can keep doing the work we're doing to educate and inform, and to reduce stigma.
Miriam Martin, Vancouver BC
02/01/11 3:11 PM EST
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Changing Name Won't Change Stigma
I have HIV and I have AIDS. I was diagnosed with AIDS in 2002 when my t-cells fell below 200, and that diagnosis will always be there even though my immune system (on medications) has remained within "normal" range ever since. My family, my friends and my co-workers know I have HIV, and they know I have AIDS. Why? Because I'm not ashamed about either acronym. I wouldn't haven gotten to this place of acceptance if there weren't AIDS organizations and people with AIDS out there who are comfortable stating that they have AIDS. What reduces stigma and fear around HIV and AIDS is encouraging people with HIV and AIDS to stand up and say, "I have HIV and AIDS." Removing the acronym really only sends the message to people (HIV - OR +) that their fears and prejudice are justified.
Terry, Ft. Lauderdale USA
02/05/11 12:33 PM EST
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I support the name change; I have dead friends too
Among HIV/AIDS-infected peeps, some of us have AIDS and some of may never develop it, even decades from now. What we all have in common is HIV. As someone infected four years ago, it's a bit rich for me to hear the "old-timers" talk about the "kids" who are supposedly just cavalier and indifferent about safer sex. Talk about people who don't understand you at all. You know what? I was careful for a long time but I'm only human. Something happened and it was an accident. There's no point to try and explain because it doesn't matter; the outcome is the same. I'm doing well, I take care of myself and don't expose others to risk. Elders who supposedly know better wagging their fingers -- or the A-word -- in my face doesn't, and wouldn't have, changed anything.
Tony, Toronto ON
02/06/11 9:25 AM EST
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HIV causes AIDS
I have been living infected with HIV since 1984. In 1994, I announced publicly on national TV,(the Dini Petty Show, World AIDS Days 1994)that I was living with HIV; to help break down the stigma associated with HIV and AIDS. In 1997, I developed AIDS. If it were not for antiretroviral drugs, I would not be alive today. If I were to stop my HIV/AIDS medications I would die of AIDS. I am grateful to the many HIV/AIDS service organizations for there support all these years. I support keeping AIDS front and center, along with HIV. After all, HIV causes AIDS.
Bradford McIntyre, Vancouver, BC B.C.
02/06/11 12:55 PM EST
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