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Why HIV Organizations Are Dropping 'AIDS'

Dawn

Originally called “gay-related immunodeficiency disease” (GRID), AIDS quickly took over as the known term for the mysterious and deadly health epidemic that arose in the early 1980s, killing gay and bi men in large numbers at an alarmingly swift rate. Fear reigned as the world witnessed its heroes, like Rock Hudson and Freddie Mercury, as well as hundreds of thousands of sons, uncles, cousins, and friends succumb to the then-deadly affliction over the next decade.

Though it was soon made clear that no one was naturally immune to HIV, the term AIDS had already been cemented as a stigmatized acronym associated with queer men—and death—and remained so throughout the ’80s and ’90s.

The term has proven itself problematic in a few ways over the years. First of all, as many now know, AIDS—an acronym for “acquired immune deficiency syndrome”—only describes the advanced stages of HIV. It is not the name, nor was it ever, for the virus itself. However, it stuck and has often been misused to describe someone who is simply living with HIV. In those early days of the epidemic, little talk was ever heard in the media of HIV (human immunodeficiency virus), the correct name of the virus.

When the first versions of the lifesaving antiretroviral drugs we use today were developed in the mid-’90s, quite suddenly, having HIV was no longer a death sentence. Now one could simply be living with HIV—and no longer condemned to “dying of AIDS.” Although this medical revolution has drastically changed the lives of people living with HIV, in many ways, the rest of the world has failed to catch up with current science.

It’s not that AIDS is necessarily an erroneous or bad term, as it was and still is a widely used medical term for the advanced stages of HIV. The problem, many experts and activists argue, is that due to its history of misuse and stigmatization, the term is now somewhat antiquated and actually promotes stigma. It also overemphasizes the fatal phase of the condition in a time when the life expectancy of those living with HIV is pretty much the same as anyone else’s.  

This has led to a huge push, particularly in the last five years or so, to eradicate the term from the conversation around HIV as much as possible. Some of the first organizations to do so have been ASOs—an acronym that ironically stands for “AIDS service organization.” However, it makes sense that the orgs directly serving the actual people living with and affected by HIV would be first to lead the charge.

APLA Health, formerly known as AIDS Project Los Angeles, in 2016 was one of the first major ASOs to go through a complete rebranding in order to reflect the evolution of HIV, as well as the changing needs of the LGBTQ community and beyond. When APLA’s cofounders first met in the early ’80s to try to combat the growing “GRID” issue (as HIV was still being called then), it was actually a bold move at the time to name their org AIDS Project Los Angeles—and was done so rebelliously to reinforce the fact that HIV was not just a gay man’s disease. But today, the virus and its related terminology continues to evolve.

“Since 1983, we have been committed to delivering care to the people who need us most,” APLA Health CEO Craig E. Thompson said of the rebranding. “Thirty-three years ago, that meant ensuring people with AIDS died with dignity. Today, it means much more…. Our mission is to achieve health care equity and promote well-being for the LGBT and other underserved communities, and people living with and affected by HIV.”

The same year, on World AIDS Day and during the final days of the Obama administration, the federal government announced its decision to change its official HIV information website from AIDS.gov to HIV.gov, which went into effect the following spring.

Miguel Gomez, senior communications adviser for the Department of Health and Human Services’ Office of HIV/AIDS and Infectious Disease Policy, said the decision was based largely upon the preferences of people living with or affected by HIV as well as current science.

“We want our program to reflect today’s science,” Gomez wrote in the announcement, “as well as the terms most of our visitors use to tell their stories about HIV or to search for information about HIV and AIDS on our website.”

“In the beginning of the epidemic, the term ‘AIDS’ became implanted in the public’s mind because it was used in the popular press before researchers identified the cause of AIDS and an international committee of scientists named it the human immunodeficiency virus (HIV),” Gomez noted, adding the decision was a practical one as well. “Today, twice the number of people who come to our website from internet searches use the term ‘HIV’ rather than ‘AIDS.’ In addition, the majority of the social media conversations we participate in focus on the term #HIV.”

Dr. Richard Wolitski, a former director of the HHS Office of HIV/AIDS and Infectious Disease Policy who’s been working in HIV advocacy and policy for over 35 years, was very pleased with the decision.

“I started doing this work in 1985, when the reality of living with HIV was so very different than it is today,” Wolitski commented when the change was announced. “Now people with HIV can live just as long as their HIV-negative peers. I’ve been living with HIV for more than 20 years, and I don’t expect to ever develop AIDS.”

Often, such rebranding isn’t just about changing terms, but changing times and expanding programs. A lot of these organizations have grown immensely over the years and now include numerous other wellness programs such as dental, vision, mental health, housing assistance, and addiction recovery. With health care in general moving in a more holistic direction, things like HIV testing, prevention, and treatment are now simply considered a part of general LGBTQ wellness (or for anyone in the community who is served). Removing “AIDS” from these orgs’ names not only creates a more welcoming environment for poz folks but more accurately reflects the range of services they provide—and for whom.

In 2017, AIDS Service Center NYC formally changed its name to the Alliance for Positive Change. This change came as the nonprofit expanded to help more New Yorkers with substance use and mental health issues, and program participants with chronic illnesses such as hepatitis, diabetes, and heart disease.

“We used to be the AIDS Service Center of Lower Manhattan, and then AIDS Service Center of New York City—and as the epidemic evolved, so did we, as an agency,” Deborah Yuelles, director of the peer training program at the The Alliance for Positive Change, tells Plus. “At our core, we are an AIDS organization, but because there are so many other connected issues like substance abuse, like chronic illnesses and mental health…and high rates of trauma within our population—we’re addressing HIV [and] we’re addressing chronic conditions.”

Also in 2017, Montgomery AIDS Outreach, while retaining its original acronym for recognizability, rebranded as Medical Advocacy and Outreach. For over 30 years MAO has been primarily serving communities of color in rural Alabama—where terms like “AIDS” can be especially stigmatizing. In addition to its HIV-related services, MAO has an ever-expanding list of services designed to address hepatitis C, diabetes, behavioral health, and other health and wellness issues that are particular to these communities.

“The new name reflects our expansion of quality services to new healthcare issues facing rural Alabama,” says Michael Murphree, MAO’s chief executive officer, summing up the general philosophy behind rebranding. “The MAO team does not just see health conditions, we see human beings in need.”

Since then, this movement has only gained momentum. Over the past few years, dozens if not hundreds of other orgs have followed suit with their own AIDS-free rebranding. Among the more recent to do so is Vivent Health, which announced its new name just this past World AIDS Day. Originally the AIDS Resource Center of Wisconsin, the org took the opportunity to modernize its brand when it merged with Rocky Mountain CARES in Colorado and St. Louis Effort for AIDS in Missouri.

Michael J. Gifford, Vivent Health president and CEO, says it’s not only important and necessary to change with the times in terms of serving those living with HIV, but to also make things like HIV prevention and testing more accessible to all.

“As the need for PrEP [pre-exposure prophylaxis] increases and HIV continues to be a leading example of a health disparity, Vivent Health will be as committed as ever to expanding lifesaving programs to individuals with the greatest need,” Gifford said in announcing the change. “Together, we will continue to work toward a world without AIDS, ensuring accessibility and affordability of essential health care services.”

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