Even as vaccines temper the spread of the novel coronavirus in the United States, North Carolina advocates gathered to remind lawmakers that the country remains in the middle of another pandemic.

The South is ground zero for new HIV cases within the United States, and the Tar Heel state is no exception.

“After last year, there are a lot of people out there who are probably walking around with an STI, hepatitis, or HIV who are not aware of it,” Jacquelyn Clymore, HIV, STD, and hepatitis director at the Department of Health and Human Services. She spoke during “HIV Virtually Speaks on Jones Street 2021” last week, an HIV and hepatitis advocacy day hosted by the NC AIDS Action Network (NCAAN) and the Southern AIDS Coalition.

HIV—or human immunodeficiency virus—has continued to spread  in North Carolina during the pandemic, but significant changes may be coming to how the state attempts to provide healthcare access in the near future to people living with the virus.  

Ground zero for new cases

Just over half the people who are diagnosed with HIV in the United States each year reside in the South, despite accounting for just 38 percent of the country’s overall population. 

As the southern U.S. is the fastest growing area for the virus, about 50 percent of all deaths among adults and adolescents living with HIV also occur here. While North Carolina fares better than some of its neighboring states, it still ranks 12th worst among states for the highest rates of HIV.

Black Americans are at the greatest risk, accounting for 52 percent of new diagnoses in the South in 2018, the year for which Centers for Disease Control and Prevention data is most recently available. Black southerners have higher rates of HIV than Black people in all other regions of the United States.

Cases up, testing down in NC

In North Carolina, efforts to combat the novel coronavirus at times subsumed HIV prevention and outreach initiatives over the last year, as many health officials were forced to shift their focus to pandemic-related work.

“A lot of our resources at the state health department, just like in the local health departments, have had to work on COVID,” Clymore said at last week’s virtual event. “It didn’t mean that our HIV and STI and hepatitis work stopped, but it did mean that some things we thought we would be doing just had to be put on hold.”

When last year’s public health crisis hit, one of the state’s most important resources was people power. But public health agencies across the state had bled resources for years and many were under-resourced.

Many county health agencies shuttered their HIV testing entirely in the early months of the pandemic, and struggled to balance the tasks required of the often minuscule number of staffers—in some places, an entire local health department can have a staff of three. 

“The people who would normally be offering HIV or STI testing in local health departments were fully pulled into COVID, so those resources—those human beings—were moved to other work,” said Clymore.

Testing for sexually transmitted infections in North Carolina dropped significantly in 2020, according to Clymore. In some counties, STI and HIV testing was down by 50 percent.

Early evidence suggests that HIV infection has nevertheless increased within the state over the last year.

“Unfortunately, we’ve seen the numbers for STIs and HIV have gone up,” said Clymore. “Not a lot, but they have gone up some, even while testing has gone down. What that tells us is that there are a lot of other diagnoses out there waiting to happen. We know there has to be more HIV and STIs and hepatitis out there than is currently being diagnosed.”

Increasing access

As COVID vaccines become widely available and accessible throughout the state, advocates and healthcare providers alike say they hope to move forward in the fight for better treatment for people living with HIV.

“At this point, we’ve said that if you’re a community-based organization funded by us for [STI] testing, it’s time to get back out there,” said Clymore. “Get on your PPE, you should be vaccinated, you should be able to do this testing now. 

“We’ve told our local health departments that if they can’t do that work because they’re still completely entrenched in COVID, please lean heavily on [these organizations] to do testing,” she added. “Because we need to get back to it.”

 Even before the pandemic, a person seeking to determine if they are HIV-positive could face barriers to getting tested. Although people with HIV can now live long, healthy lives if they have access to treatment, stigma around the diagnosis remains pervasive in many communities.

A historical lack of cultural competency in the medical field, as well as a documented history of systemic racism, may lead some individuals—particularly people of color, LGBTQ community members, and those with substance use disorders—to be wary of trusting a provider with confidential information about their HIV status, or fearful of the experience they’ll have at a testing site.

“This is still part of the ongoing problem that people living with HIV experience,” said Clymore. “There’s still a lot of judgment, and unfortunately some of it is affecting people as they come to clinics and as they come to care.”

“There’s still a lot of judgement, and unfortunately some of it is affecting people as they come to clinics and come to care.”

To address this problem, the state aims to have home testing kits, with which a person can conduct an HIV diagnostic test themselves, approved and available by the end of June. 

Currently, only Mecklenburg County offers home testing through a direct agreement with the federal government, according to Jeffery Edwards-Knight, supervisor at the Mecklenburg County Health Department and longtime AIDS activist, who spoke at the event.

“This is another access opportunity— removing barriers, whether they be transportation barriers or cultural barriers, and putting the power back to the person,” Peggy Weil, public policy and grants coordinator at Western North Carolina AIDS Project, said about home kits during the meeting. “There’s evidence out there that once people know their status, that even if they don’t immediately engage in care, it does alter their behavior.”

DHHS is also developing a “cultural humility” training that, starting in August, will be mandatory for organizations that receive state funding for HIV testing, in hopes that it will improve the experience of people arriving for HIV testing.

“We heard loud and clear that people really wanted that addressed,” said Clymore.

Other changes ahead

The same day “HIV Virtually Speaks on Jones Street 2021” was held, lawmakers introduced a bipartisan bill in the House that would amend the state’s “Good Samaritan Law,” which is intended to provide protection from prosecution to a person who calls 911 in the event of an overdose.

“Our [current] law is actually one of the most limited in the country,” Lee Storrow, executive director of NCAAN, who helped lead the push for this legislation alongside members of the DHHS opioid overdose prevention team, said at the summit’s closing event. 

“When the Good Samaritan Law was enacted, our drug supply looked very different,” he added. “Right now the main case of drug overdose in North Carolina is fentanyl—but possession of fentanyl is not protected under our Good Samaritan Law, so it’s a real barrier for people calling 911.”

House Bill 852, proposed by Reps. Donny Lambeth (R-Winston-Salem), Gale Adcock (D-Cary) and Vernetta Alston (D-Durham), would expand those protections to people using a broader range of substances. 

Organizations like NCAAN are also advocating for a bill that would make it easier for people to access HIV prevention medication, following on the heels of states like California and Colorado. HB 691, sponsored by Rep. Wayne Sasser (R-District 67), would eliminate the need for a prescription to obtain PreP (pre-exposure prophylaxis) or PeP (post-exposure prophylaxis), medication that prevents infection after possible HIV exposure if taken within a few days.

“It is 100 percent designed to allow someone to walk in the door and say, ‘I need post-exposure prophylaxis,’ and the pharmacist has the capacity to administer that without a prescription,’” said Storrow.

Throughout the day, participants discussed another bill currently working its way through the legislature—one that could threaten syringe exchanges across North Carolina. Senate Bill 607 would, among other things, ban mobile exchanges, require programs to use engraved needles and force people using their services to undergo treatment.

“Obviously there’s a lot of concern about what’s been introduced in the legislature to limit what syringe service programs can do that are absolutely not friendly to people who use drugs, people who are considering recovery, people who are actively needing the work of syringe services programs,” said Clymore. “We [at DHHS] have had the opportunity to comment on those and to say why we think they aren’t going to work, why we’re concerned about them, why they are not in the best interest of the people who those bills were created to help.”

Next year, the state anticipates it will be ready to adopt an electronic portal for its North Carolina HIV Medication Assistance Program (NC HMAP), a federal- and state-funded program which provides financial assistance for medications specifically used to combat HIV. Once the program is implemented, Clymore said, case managers should be able to determine a client’s eligibility and quickly enroll them for assistance online.

DHHS hopes to release its updated “Ending the Epidemic” plan for combating HIV in North Carolina in June, according to Clymore.

North Carolina Health News is an independent, non-partisan, not-for-profit, statewide news organization dedicated to covering all things health care in North Carolina. 

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