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AIDS groups remove ‘AIDS’ from their names

Distancing themselves from the stigma

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.”