When Kim Bouldin-Jones worked in outreach with St. Louis Effort for AIDS in the mid-1980s, she said, her main strategy was to “meet people where they are”: that often meant finding a gay bar and becoming a regular there, handing out condoms and talking about harm-reduction methods. She would sit down in a bar, and converse with people.
“Actually getting out on the street and talking to them about their risk factors is how you get people to lower their risk,” she remembered. “You can’t go from 10 to zero, but you can minimize risk.”
Since the COVID-19 pandemic hit St. Louis a year ago, she’s been seeing parallels between her own work against the AIDS epidemic decades ago and the effort against COVID today.
Both infections have disproportionately impacted marginalized communities—Black communities in particular. In fact, the first known HIV-AIDS case in the United States was that of a Black youth in St. Louis, 15 year old Robert Rayford, in 1968. Between Rayford’s death and the discovery of antiretroviral medication in 1991, AIDS was a mysterious disease and a death sentence.
In addition, much as we have seen with COVID, efforts to curb the spread of AIDS were plagued by misinformation.
This time last year, when COVID began to spread in St. Louis, Williams noticed that the same thing was happening again: misinformation was spreading, and accurate information about how to protect oneself didn’t get to marginalized communities quickly enough.
“We first heard [about COVID] on the news, and saw pictures of…the first 5,000 community cases. They were white people,” Williams said. “I even read posts at that time on social media that COVID don’t affect Black people.” This, as we now know, was not the case. “And here we have us being more infected than other folks, in terms of our proportion to the total population. So in that sense, it’s very similar to the AIDS epidemic.”
When the AIDS epidemic spread through the St. Louis community in the 1980s, Williams’ friends became infected one by one. He decided to get involved in AIDS activism because he realized that could easily have been him.
“I think I had a little crazy bargain with God,” Williams said. “If you spare me, I’ll commit my life to addressing this issue, and working with people, particularly Black people, who didn’t have the resources to really come out on the other side of this.”
Dr. Will Ross, associate dean for diversity and principal officer for community partnerships at Washington University School of Medicine and chairman of the City of St. Louis Health Board, said that more interpersonal outreach worked well when trying to ensure treatment equity at the height of the AIDS crisis.
“The immediate lesson we learned was that experts and individuals in academia were not the ones to go out and really try to rebut some of the misinformation,” Ross said. “It had to come from the community. So the use of community health workers really emerged as the bulwark against some of the more negative biases we were seeing.”
He also added that the role of Black healthcare providers in AIDS advocacy was crucial, much as Black doctors have recently been speaking out regarding COVID vaccine equity and vaccine safety. He likened it to the work of Prepare STL, a collaborative program between the city and county departments of health, that works specifically towards helping St. Louisans of color “prepare and prevail” during COVID. The program, Ross said, is “doing well…it just needs to be scaled up more.”
Dr. Shanti Parikh, a professor of sociocultural anthropology studying AIDS response with Washington University, noted that we need more person-to-person community outreach.
In a study of low-wage healthcare workers of color that Parikh participated in, she noticed that many individuals are hesitant to disclose the possibility of a COVID exposure due to stigma—and fear that a two-week quarantine might lead them to lose their jobs. The public health messaging currently being used, Parikh said, is “indirectly…making people feel like if they do get COVID, they have somehow not adhered to one of the common-sense public health messages, and that they are to blame for contracting COVID.”
“That is an HIV parallel,” Parikh added. “If you get COVID, if you get HIV, then you didn’t do the basics.”
Erise Williams, who Ross describes as “truly one of the pioneers” of AIDS mitigation in the Black community, suggests that pre-existing AIDS activist organizations be used more effectively to disseminate information, even as vaccine facilitators — the networks from 20 years ago are already there.
“I kind of wish as a country we could’ve done better,” he said. “Because we’d already been through this rodeo with the AIDS epidemic.”