By Elizabeth Thompson

As the COVID-19 pandemic unfolded, North Carolinians sheltered in place, masked up and maintained distance, all in an effort to stop the spread of the infectious disease. Along the way, many people may have forgotten about getting tested for other infectious diseases, such as HIV.

But that disease hasn’t gone away.

One recent study found that, especially during the onset of the pandemic, HIV testing decreased by as much as 97 percent in multiple locations across the U.S. And testing numbers stayed down by as much as half, even after lockdowns were lifted, as positivity rates increased. 

Christina Adeleke, policy and communications manager for North Carolina AIDS Action Network, said that trend was also true in North Carolina.

“A lot of that testing that would normally be happening, a lot of those outreach opportunities that would normally be happening out in the field, all of that wasn’t happening,” Adeleke said.

It’s likely that HIV testing data might see an increase in people testing positive for HIV and other communicable diseases such as hepatitis C, Adeleke said.

“People were still having sex,” she said. “People were still using drugs.”

Even as attention to HIV waned throughout the pandemic, advocacy groups across the state continued working to erase stigma and raise awareness about the disease.

The North Carolina Department of Health and Human Services has a list of HIV and STD testing services that you can find here.

Misconceptions about HIV

In 2020, the highest rate of newly diagnosed HIV infections in North Carolina was among Black men, according to data from the North Carolina Department of Health and Human Services. Men who were having sex with men accounted for 56 percent of new HIV diagnoses, while people in heterosexual relationships accounted for 17 percent of new diagnoses. Injection drug use accounted for three percent of new diagnoses.

There is a misconception that only men who have sex with men get HIV, but in 2019, nearly 7,000 women in the U.S. were diagnosed with HIV, according to the Centers for Disease Control and Prevention (CDC).

The NC Aids Action Network has been working to fight stigma and raise awareness about HIV, as well as preventative medications and treatment for HIV, especially for people who may not realize they could be at risk. The group’s newest advocacy effort, the Ella/Her Project, focuses on HIV and AIDS outreach for Black and Latina women in North Carolina.

“As the epidemic progressed, we were finding that we were seeing increases in women, specifically Black women, Latino women,” Adeleke said. “We’re seeing an increase in HIV rates in those communities.”

The Ella/Her Project is a collaboration with Latinos in the South and the Southern AIDS Coalition to prioritize Black and Latina women in outreach and education about HIV.

“We thought it would be a really good idea to develop outreach strategies to work to figure out what Black and Latina women need,” Adeleke said, “like why are we experiencing these disparities?” 

The rate of HIV diagnoses for Black women in 2020 was 11.2 out of 100,000 people and 4.1 for Latina women, according to the North Carolina Department of Health and Human Services. The rate of HIV diagnoses for white women was 1.3 out of 100,000 people.

She said their goal is to find innovative ways to educate the community and educate Black and Latino women about HIV prevention. They’re working on gathering feedback from women about how they want to be reached, in order to tailor the program to their needs.

Getting on PrEP

Getting tested for HIV and obtaining a prescription for preventative care, such as Pre-Exposure Prophylaxis (PrEP) can help reduce the spread of HIV. 

PrEP can prevent a person from contracting HIV if they are exposed to it, said Mehri McKellar, an infectious disease specialist at DukeHealth. The medication is available either as a daily pill or as a shot taken every two months.

There are various factors that could make someone a good candidate to go on PrEP, McKellar said. She pointed to CDC guidance which recommends PrEP for people who have had anal or vaginal sex in the past six months with one or more sexual partners with unknown HIV status and not consistently worn condoms or have had some bacterial sexually transmitted infections.

For people who inject drugs, they should be prescribed PrEP if someone they share drugs with is HIV positive or share drug-use equipment, said McKellar, who also works at the Duke PrEP Clinic for HIV Prevention.

There is still a stigma surrounding PrEP, McKellar said, but that has improved as more people learn about it and the medical knowledge advances.

“I think the lack of education around these issues creates a lot of fear and creates a lot of assumptions or a lot of outdated information that people use to justify their behavior,” Adeleke said.

As a way of breaking down misunderstandings about PrEP, Adeleke works to make people aware of their options. She’s seeing some progress.

Current medications, such as PrEP and antiretroviral therapy — which can control HIV so that people cannot transmit it — have been huge for reducing stigma around the disease, she said. When it became clear that antiretroviral therapy prevents transmission to others, McKellar said, it changed her patients’ lives.

“You could literally, physically, watch the stigma kind of fade away,” McKellar said.

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