A small knot of people grappled with pieces of the HIV awareness sculpture outside Gage Hall at the Unitarian Universalist Church in downtown Charleston.
There were two big letter U's, painted blue, one made up to look like the South Carolina flag with a palmetto tree and a crescent painted on it. They were supposed to be connected by an equal sign, symbolizing the phrase "undetectable=untransmittable" — the point where medication has driven the virus so low for months that the person is no longer deemed infectious to a sexual partner.
But no one seemed to remember exactly how the thing fit together.
"It has been 2½ years," said advocate Michael Luciano as he tried to work a tab into a slot of the sculpture. At the first in-person World AIDS day event since the pandemic began, there is a clear need for more education and awareness of a disease overshadowed by COVID-19 in recent years.
Testing for HIV and services plummeted at the beginning of the pandemic in March 2020 as facilities shut down, people stayed home and others lost their jobs and their health insurance, the Centers for Disease Control and Prevention said in a report Dec. 1. Testing dropped off 32 percent nationwide and new diagnoses fell 26 percent. There was a partial rebound by the third quarter of 2020 as facilities reopened and people ventured back out, and fortunately many patients were able to stay connected to care and continued to receive their anti-retroviral therapy, the report found.
Now, service levels are almost back to pre-pandemic levels, said Hayley Berry, a pharmacist with the Ryan White program at Medical University of South Carolina.
"We're getting there," she said.
South Carolina ranks ninth among states in terms of HIV rate at 13.2 per 100,000 people, with 19,437 people living with HIV/AIDS as of the end of 2020, according to the S.C. Department of Health and Environmental Control. The rate of HIV diagnoses has been dropping nationally since the 1980s, according to CDC. In 2020, 30,635 people were newly diagnosed with HIV in the U.S. and its territories, a 17 percent decline from 2019 and a 19 percent decline from 2015, CDC found. Rates of new HIV diagnoses declined 7 percent between 2011 and 2020, DHEC found.
That is particularly true for women, who have seen a 22 percent drop from 2011 to 2020. Men, however, have had only an 8 percent decline over the same period, and men continue to make up the vast majority of HIV cases in South Carolina at 72 percent, and 80 percent of new diagnoses.
Services for women are still needed, however, particularly for those on the margins of society. The pandemic placed an enormous strain on many social agencies, including I AM VOICES, a nonprofit in North Charleston that provides housing and resources for women who have faced sex trafficking, sexual violence or homelessness.
"Let's just say we now have two houses" to meet the demand, said Faith Bradley, volunteer coordinator for the group. Among the many services they need is HIV testing, she said.
With women who have been exploited "they have no idea who they have been with, what they had," Bradley said. "They don't know their status."
That has been a chief driver of new HIV diagnoses across the country: Among the 1.2 million with HIV, 13 percent do not know they have it, CDC said. Rates of new cases continue to be highest in the South, according to the U.S. Department of Health and Human Services.
Part of the problem is access to services, which can vary widely across the state, said Richard Reams, director of development and marketing for Palmetto Community Care and Truesdale Medical Center in Charleston.
"Especially when you start talking about rural and impoverished areas, access to care is a huge thing," he said.
Prevalence of HIV varies widely across South Carolina, with much higher rates in Greenville, Horry and Richland counties and less so in Charleston, Berkeley and Dorchester, according to DHEC. Those ages 20-29 in South Carolina make up 13 percent of the total population but account for nearly 40 percent of new HIV diagnoses, according to DHEC.
That speaks to a need for greater awareness and education, which can be hampered by a number of things, including stigma, Reams said.
"It’s very challenging to get the word out," he said. Part of that has to do with the perception of HIV, particularly among the young, Reams said.
Quite often he will be doing community outreach, "And they say, 'Oh, AIDS is still a thing?'" Reams said.
Luciano, a peer services coordinator at Palmetto Care, encounters that lack of concern and awareness of recent history as well.
"People in that 20-29 age range don’t have any memory of the point in time when HIV/AIDS was a terrifying prospect and they have no experience of the trauma of seeing members of the community die around them," he said.
When Luciano speaks to college groups, "I can't tell you how many times I've been asked, 'Is that still a thing?'" he said.
Part of it is awareness, said Shanna Hastie, a licensed master social worker with DHEC Lowcountry Public Health Region.
"That’s where we come in," she said. "We want to make sure individuals know their risk."
But it can be challenging to make people aware of things like pre-exposure prophylaxis (PrEP) medication that can reduce the risk of infection, Hastie said.
"There may not be a lot of conversations around sexual health or PrEP or if it is something they may qualify for," she said.
Fortunately during the pandemic, many people who were already diagnosed and in care were able to stay on their medication, so the number with a suppressed viral load remained stable, CDC reported.
That was a concern Luciano had of losing people during the pandemic.
And it turned out, "it was a much smaller number than I feared," he said.