Researchers at the University of North Carolina at Charlotte are in the middle of a two-year study to find out who is accessing PrEP in the community and barriers to access.

By Yen Duong

It’s been almost a year since President Trump announced that Mecklenburg would be a target for a national initiative to eradicate new HIV diagnoses and four years since Mecklenburg County Public Health started organizing its “Getting to Zero” initiative with a similar goal.

In a two-year project, researchers at the University of North Carolina at Charlotte and Mecklenburg County Public Health have started looking at the demographics of people taking pre-exposure prophylaxis, or PrEP, the drug which has been shown to almost completely prevent HIV transmission.

During the first year of the ongoing study, the researchers interviewed 28 providers from 20 different sites who covered just under 1,300 patients on PrEP in Mecklenburg County, said UNCC professor and study author Monica Sawhney.

“We wanted to determine the extent of PrEP usage and to describe the PrEP administration practices among health care providers in Mecklenburg County,” Sawhney said. “We wanted to see which PrEP providers are doing it, which are not doing it, what are the barriers, to what extent are they doing it?”

Who takes PrEP?

Nationally, the Centers for Disease Control and Prevention estimate that 1.1 million Americans should be on PrEP, but as of 2018, only about 132,000 were. White men who have sex with men (referred to as MSM) dominate the demographics of those who actually take PrEP, and in the study, white men with insurance made up a large amount of PrEP users.

“It’s the same kind of trend that we see nationwide,” said Brian Witt with Mecklenburg County Public Health, a co-author of the study. “We know that it’s not reaching the individuals that at the highest risk in Mecklenburg County, which are going to be our young black MSM without insurance… It’s very underutilized.”

To take PrEP, patients must take the daily pill and come in to the doctor’s office quarterly for STI lab screenings and kidney function tests. While the cost of the pill can be covered by patient assistance programs, the lab and doctor visit costs offer a hurdle for underinsured patients, Witt said.

“Even if their insurance is covering 80 percent, it can still be a costly experience,” Witt said. “The cost of coming to a clinic every three months, even with a copay for the insured population, was still a challenge for individuals.”

Advocates use community outreach to reach the ‘priority population’ of those who should take PrEP, said Wesley Thompson, a certified physician assistant who has 435 patients on PrEP.

“We’re looking at going out into the community, whether it be the barber salon, the hair salon, or churches or other non-clinical settings where we can reach out and meet people,” said Thompson, who co-chairs the county’s “Getting to Zero” initiative, which covers costs for over 100 patients at seven clinics.

“There’s also focus groups being done to look and ask MSMs of color, ‘Why are you not on PrEP? Are there barriers to care? Why did you stop PrEP?’ … Sometimes once you do focus groups and you talk to the population, you realize that you’re missing something.”

Of people on PrEP, about 18 percent were 50 or older, which Witt found surprising. He suggested that established patients were aging with their providers.

“It appears anecdotally, the older MSMs are getting it because they have a partner that is HIV positive,” Thompson said. “Even though we know undetectable equals untransmittable, you always have that little fear factor in the back of your head, the ‘what if’… and this is the insurance that you don’t have to worry and they can be as close and as intimate as they want to be without fear of transmission.”

Part of the national picture

Mecklenburg County is one of 48 target areas for the national 2030 target plan to eradicate new HIV cases. Though only 38 percent of Americans live in the South, the region has 52 percent of new HIV cases, said Arun Skaria, who works at Gilead Sciences. Gilead manufactures Truvada and Descovy, the only two FDA-approved drugs for PrEP.

Over 10 years, Gilead, which made $22.1 billion in 2018, has pledged to donate $100 million to chip away at the HIV epidemic. Next year, they will donate $2.3 million to 40 community organizations in the South: the North Carolina grantees are the AIDS Leadership Foothills-Area Alliance in Hickory, Circle of Friends Task Force in Kinston, Latino Commission on AIDS with directors in the Triangle and Positive Wellness Alliance in Lexington.

“We really need to help scale up the work of the organizations that are currently providing services across the south,” said Neena Smith-Bankhead of Emory University, which is one of the partners in administering the Gilead funds. “These groups are already tackling some of the unique challenges that are faced by the South. But due to lack of resources, oftentimes these organizations aren’t able to realize their full potential.”

Rose Hoban contributed reporting to this story.