What’s in a name?
Community members living with HIV, especially people who have at some point received an AIDS diagnosis, are pushing back against a major U.S. advocacy organization's decision to remove the word "AIDS" from its annual meeting.
The organization, NMAC, announced this week that their annual conference, USCA—short for the U.S. Conference on AIDS)—would become USCH, the U.S. Conference on HIV.
The name change was announced in an email sent to the organization's email list on Feb. 4. In the email, titled “Changing Our Name to USCH,” NMAC executive director Paul Kawata said, “AIDS is considered stigmatizing language to many people living with HIV,” and explained that the move was meant to stop further discrimination against people living with HIV.
However, some members of the community feel the move achieves the opposite effect, further entrenching a divide between people living with HIV and those with an AIDS diagnosis.
“Many of us that are living with an AIDS diagnosis feel as though most AIDS service providers are moving away from acknowledging we are still here,” Ed Barron, who has been living with HIV since 1986 and was diagnosed with AIDS in 1993, told TheBody. “Very few are even addressing the issues we experience. It’s like we don’t exist.” Bannon added that it feels like some AIDS organizations are not honoring the experiences of people with AIDS.
Tez Anderson, founder of advocacy group Let’s Kick ASS (AIDS Survivor Syndrome) and founder of HIV Long-Term Survivors Awareness Day, said that it wasn’t the name change itself that offended him, so much as Kawata’s reasoning in the email.
“He just added gas to the fire of stigma,” Anderson said. “If they had just said they were changing it to be more inclusive, it might not be as offensive.” Anderson said that by getting rid of the word “AIDS,” Kawata and NMAC are “ignoring those of us living with AIDS.” Anderson has been living with AIDS since 1993.
“I’ve seen the despair of people who have survived AIDS, watching our history being erased in front of our eyes,” he added. “As if what happened in the ’80s and ’90s does not matter, that it’s in the past where it should be and we’re moving to End the Epidemic and we’re going to ignore the 7,000 people a year who die of AIDS.”
He added, “I see it as divisive and dismissive of a large population.”
Anderson also claims that this is part of a larger problem within NMAC of ignoring the voices of long-term survivors.
In a statement, Kawata responded to community pushback about the name change. For Kawata, the name change is about “self-determination.”
“Time, history, and self-awareness have evolved and thankfully landed at a place where people get to decide for themselves how and if they want to be labeled,” he said in a statement to TheBody. Citing the Denver Principles, which derided language about people living with HIV as “victims,” Kawata says that language around HIV has changed and will continue to change.
“In solidarity with PLWH [people living with HIV], USCA changed its name to the United States Conference on HIV,” the statement reads. “I’ve heard there are concerns from people with AIDS that we are trying to erase AIDS, nothing could be further from the truth. Our goal in changing the name is to continue the evolution of self-determination and empowerment.”
In a phone call, Kawata said that before finalizing the name-change decision, the organization weighed several options, including calling the meeting "USCA" but no longer having the letters within the acronym officially stand for any words. NMAC itself (formerly National Minority AIDS Council) went this route, as have several other organizations, like PFLAG, GLAAD, and GMHC, in recent years.
Nonetheless, Kawata continued to voice his support for the change to USCH, and said that he understands the hesitation to embrace it, as he shared similar concerns.
“Let me be very honest and say I had a lot of trouble with the changes when they first came out,” Kawata said. Kawata said that this is a “generational issue” and that he was part of the generation that grew up with the term AIDS, but that it might be time to cede ground on the term. “As an older activist, I’ve had to learn how to give space to younger activists and hear their voices.”
He added, “We felt that rather than just use the acronym, that we could actually use this as what we hope would be a teachable moment, to talk with our movement about how many people living with HIV consider AIDS stigmatizing. And in our efforts to end the epidemic, we have to minimize the stigma. I think that this story is absolutely about trying to figure out that balance of how communities self-define themselves.”
Kawata pointed out that the decision to change his organization's name from National Minority AIDS Council to NMAC in 2015 was intended to do away with outdated language while honoring the legacy of its founders.
“If we created NMAC today, we probably would not use the word ‘minority,’ and we would not use the word ‘AIDS,’” he said.
HIV activist Daniel Driffin, M.P.H., applauded the move. Driffin told TheBody that the term "AIDS" carries a lot of stigma and may actually deter people from getting tested or engaging in care.
“I remember being in 8th grade the first time AIDS crossed my mind. I was about 14. I tested positive after college at the age of 22, and now I’m 33,” he said. “I connect AIDS with wasting and losing dignity, and I didn’t want to ever burden anyone like that.”
He called the move to USCH a “milestone.” He added, “I hope our community is compassionate to see that erasure is not occurring with the change.”
However, while you can erase the word AIDS, you cannot erase the diagnosis, as AIDS activist Sean McKenna told TheBody.
“I have AIDS, and I will until there is a cure or I die,” he said.