On a crisp fall day, a small group of masked community researchers fanned out on the streets of Slavic Village to ask residents a few questions about their sex lives.
The effort was one part of a plan to understand why the Cleveland neighborhood has seen higher levels of new HIV cases diagnosed over the past five years, despite an overall downward trend in Cuyahoga County. The clipboard-toting volunteers also popped into local stores to record condom prices and availability.
The Slavic Village ZIP code, which also includes the Union-Miles neighborhood, was one of two in the county to report 50 or more new HIV diagnoses between 2015 and 2019, according to the most recent Ohio’s HIV Surveillance program. (The other ZIP code, 44102, includes the Detroit Shoreway and Edgewater neighborhoods.)
Slavic Village’s hyper-local response to the rise in cases, aided by a $25,000 AIDS Funding Collaborative grant, mirrors a national trend in prevention and treatment efforts, which until recently were orchestrated at the city or metro level.
It also means combating two viruses at once: HIV, which has lingered stubbornly for decades, and the coronavirus that has ripped through a neighborhood already exhausted from efforts to tackle cycles of generational poverty, food insecurity and low literacy.
“I felt kicked in the stomach with another reality about Slavic Village,” said Earl Pike, who for about a decade headed the AIDS Task Force of Greater Cleveland but had heard little discussion about the issue since taking the helm of University Settlement, a social services agency, in 2017.
One more challenge
Viruses don’t respect neighborhood boundaries, but learning more about how HIV is being transmitted in Slavic Village is key to tailoring a prevention strategy, said Bob Eckhart, a public health practitioner who has worked on HIV prevention and treatment and AIDS services since the 1980s, when he helped catalyze the local and national response.
In recent years, new diagnoses of HIV in Cuyahoga County have overwhelmingly been among men who had sex with men and who were Black and under the age of 35. (Note: HIV infections among transgender women are counted based on their assigned sex at birth.)
But the full picture of what is happening with HIV countywide is murky because of a shift to “priority-based testing,” which requires a focus on the most at-risk populations that can also be harder to reach. The new protocols and organizational problems within the Cleveland Department of Public Health, which until last year was responsible for testing, led to a steep drop in HIV tests countywide from more than 10,000 in 2018 to about 3,000 in 2019.
County health officials are still trying to get a sense of what the infection numbers signify, said Melissa Rodrigo, deputy director of prevention and wellness at the Cuyahoga County Board of Health, which took over testing for a six-county region in 2020.
The pandemic created more obstacles for community partners, though most have adjusted, meeting people at their homes to administer HIV tests. Still, Rodrigo said, it will take a little time to understand whether the reported infection numbers are low because of the reduced amount of testing.
“It’s hard to know exactly where we are at,” Rodrigo said.
There are other issues to untangle, as well, to understand how the virus is spreading.
For instance, ZIP codes with the highest number of emergency room visits related to opioids and the distribution of naloxone, which reverses overdoses, overlap with the greatest number of HIV diagnoses, according to a county epidemiological profile published in August. But the number of newly diagnosed patients linked to needle sharing or drug use is low, possibly because Cleveland supports one of the largest free clean needle exchange programs in the state.
Hearing from the community
Though it can be awkward to ask questions about a person’s sex life or what protection they use, hearing directly from residents helps to avoid assumptions, said Autumn Franz, a recent John Carroll University graduate who helped to organize the community “research mob” and collect surveys from about 50 residents to learn more about how often they use protection during sex.
It’s particularly important in Black communities, where it can be harder to come out as gay or bisexual, or where transgender women of color are not always part of the conversation, Franz said.
Another challenge is figuring out who can help pay for and deliver prevention messages and services to the neighborhood’s 22,000 or so residents, many of whom are low income.
When Eckhart started reaching out to interview community leaders, most were surprised to hear HIV infections were on the rise.
“People haven’t thought about AIDS and HIV in a long time,” he said. What he heard was ‘we just didn’t know.’”
One thing, though, was clear: Residents don’t want people to come in from outside the neighborhood to address the issue.
That makes sense to Gary Scofinsky, who has called Slavic Village home since 1995. Despite all of its pressing problems, it’s a place that has a strong network of neighbors who take care of their own, he said.
Scofinsky is known for his massive garden operation, which provides vegetables like kohlrabi and eggplant for neighbors, and jalapenos for employees at the nearby Dollar General, where he often shops.
The 54-year-old, who has lived with HIV for more than two decades, believes one way to raise awareness might be to use neighbor networks to pass out literature and condoms, particularly to younger residents who might be harder to reach or who aren’t openly gay or bisexual and have concerns about people passing judgment on them.
“A lot of teenagers and young adults don’t seem to care about [the virus] anymore,” he said. “It will be tough to reach them.”
Scofinsky also thinks there should be more outreach at local drug rehabilitation centers. Often, he said, people are careful about needle sharing but not as cautious about unprotected sex when drinking and using drugs.
Scofinsky, who is partially paralyzed due to a violent physical attack decades ago, says he has mostly stayed inside during the pandemic. But once it is safe, he’d volunteer to hand out condoms or answer questions at community events.
“There’s a lot of people who know me,” he said. “They might hear it coming from me.”
Local voices key
Information gleaned from community research can be invaluable, said John Barnes, executive director of Funders Concerned About AIDS.
For a variety of reasons it is harder to give federal money to small neighborhood groups. The formulas used to measure the problem and dole out the money have also disadvantaged communities with new or emerging outbreaks, he said.
In some ways, the work to eradicate HIV has been hampered by strides in treating the virus. “The success of treatments and prevention strategies have lessened the sense of urgency,” Barnes said, though the people currently at the highest risk for infection are among the most marginalized.
In 2019, the Trump administration announced it would direct the majority of HIV/AIDS-related funding to 57 communities with the goals of diagnosing infections and identifying outbreaks more quickly, stepping up the use of pre-exposure prophylaxis (PrEP) medications and allowing communities to locally design treatment and prevention initiatives.
The grant to University Settlement was one of the first the Cleveland AIDS Funding Collaborative gave for a “neighborhood deep dive,” said Julie Patterson, director of the collaborative.
It has since awarded “catalyst” grants to several other community or neighborhood organizations that might not qualify for larger federal grants with more rules and restrictions, Patterson said.
COVID-19 halted the door-to-door part of the community research as infections climbed this fall and winter, so the group went virtual, organizing a Zoom call recently with nearly a dozen residents: mothers, artists, health care workers, a young couple with a chubby-cheeked baby.
From their couches and kitchens, they brainstormed potential places where free condoms could be distributed in the community, such as the rapid transit station on E. 55th Street or a blood plasma donation center on Broadway Avenue. They also discussed how to best weave conversations about sexual health into the fabric of neighborhood events that already exist.
While most agreed free condoms should be widely available, they also thought opportunities for discreet testing would be helpful for those unwilling to get tested at a doctor’s office or at the AIDS Task Force office, which features its name on a large sign over the door.
It’s also essential to acknowledge men are in relationships with women and have sex with other men on the “down low” because it is not culturally acceptable, said Mimi, 41, who runs a church-based group for mothers of all ages. (She asked that only her first name be used.)
The place to start, most agreed, was to raise awareness about how to prevent HIV and reduce the stigma of talking openly about it.
“People that I know have shut down and they have feared for their lives because people may get angry and treat them a certain way, and so they are scared to let people know what is going on,” Tyra Jackson, 44, told the group.
“We know everybody is not going to be accepting,” said Jackson, who last year started an outreach organization called “The Caring.”
“But if we can get more people to be a little more welcoming, she said, “ maybe we can make a difference and make people feel like they can come out and say, ‘Hey, I have HIV.’”
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This story is provided by ideastream as part of special community coverage of COVID-19 and funded by Third Federal Foundation and University Settlement.