You’ll be forgiven if you’ve never heard of AACO. That clunky collection of letters represented Philly’s AIDS Activities Coordinating Office, and unless you were a clinician, a community advocate, or HIV positive, you probably never came across the typo-like moniker.
That’s one reason the office underwent a rebranding recently to become the Division of HIV Health (DHH).
The tweak is vital to ongoing efforts to reduce infections and advance equity in public health, city officials say, as the virus becomes increasingly less about life or death and more about managing a chronic, lifelong illness.
From a numbers standpoint, the old name just wasn’t accurate. “AIDS” conjures imagery more aligned with the 1993 film “Philadelphia” than the 2023 reality of HIV in Philadelphia.
AIDS cases are increasingly rare, said Evan Thornburg, health equity special advisor to the Health Department’s HIV efforts, but there’s another, more qualitative reason the word was swapped out: “It also harkens to a time of stigmatization and systemic neglect that we are working to dismantle.”
Thornburg’s work focuses on increasing equity and broadening access to opportunities known to lead to healthy outcomes.
Positions like hers were unheard of when HIV first started appearing in U.S. cities in the early 1980s, but have become common at every level of government to address long-standing disparities along socioeconomic and racial lines.
“Continuing to use language that is so integrally associated with death, stigma, and phobias or isms — while saying we have shifted and improved our focus to our most vulnerable communities and their needs — is a passive choice that can often indicate being noncommittal to real change,” Thornburg said.
Guaranteed HIV care, yet disparities persist
To laypeople, the differentiation between HIV and AIDS can be confusing. The two are often thought of as the same thing. They’re not — well, not exactly.
Essentially, HIV is the virus that if left untreated will almost certainly develop into the condition known as AIDS. So the relationship between HIV and AIDS is more like that between Hepatitis C and liver failure.
In the United States, doctors diagnose AIDS based on the relative weakness of the immune system. The Philadelphia Health Department, in part to ensure fewer people find themselves with an AIDS diagnosis, uses federal funding to guarantee all HIV-related care and medicine.
Despite these generous benefits, city data shows that only 55% of HIV-positive residents are on treatment and “undetectable,” a state that renders the virus “untransmittable” to sex partners.
While a groundbreaking development in HIV treatment, being undetectable isn’t guaranteed. In fact, disparities persist in who stays undetectable, who is most at risk of developing AIDS, and who acquires HIV in the first place.
City officials say Philadelphia men who have sex with men are 64 times more likely to acquire HIV than heterosexual counterparts. Their likelihood is so great, in fact, that it’s eight times higher than people who inject drugs — where the city has recently recorded HIV outbreaks.
And while local officials say anyone living in poverty is at higher risk of acquiring HIV, the risk is not evenly distributed. It changes based on sexuality, lifestyle, and race.
The numbers are most daunting for Black Philadelphians, whom city epidemiologists say have the “highest burden of HIV compared to any other race or ethnicity group.”
Reducing stigma so people act on prevention or treatment
The city’s past emphasis on the word AIDS did not help the inequities, said Tyrell Brown, interim executive director of self-described radical social justice agency Galaei, based in North Philly.
“The destigmatization of HIV in brown and Black communities is one of the biggest efforts we need to undertake,” Brown told Billy Penn, “because many people in our communities still look at HIV as an ‘evil’ thing separate from people’s lives.”
Galaei, like most other community-based organizations with HIV treatment or prevention programs in Philly, receives funding from the DHH.
Alongside an emphasis on LGBTQ people of color, a focus on language is key, Brown said. There’s “already reticence to go to doctors,” Brown said, touching on historical medical abuses against Black and brown people, so anything that reduces the stigma is a step forward.
There have been efforts locally and across the country to broaden HIV prevention methods, such as uptake of preexposure prophylaxis (PrEP), a pill that prevents HIV, as well as efforts to increase access to treatment. But health officials still struggle with an unequal distribution of lifesaving care.
In 2018, the CDC acknowledged that “while two thirds of people who could potentially benefit from PrEP are African-American or Latino, they account for the smallest percentage of prescriptions to date.” These disparities have only slightly improved over the past five years.
Beyond accuracy, the city office’s name change is about reducing stigma, which will hopefully encourage more people to adopt preventative measures and seek help when they need it..
“If names be not correct, language is not in accordance with the truth of things,’” reflected Thornburg, the Health Department advisor, invoking Confucius. “‘If language be not in accordance with the truth of things, affairs cannot be carried onto success.’ DHH is invested in the success of all people living with HIV, especially the most marginalized, so then our name must be in accordance with the truth of these things.”
