21st International AIDS Conference (AIDS 2016), Durban, South Africa. Photo shows: In Our Voice: Positive Stories! Positive Teens! Positive Lives! Photo©International AIDS Society/Marcus Rose

Lee Storrow, the head of the NC AIDS Action Network is in Durban, South Africa for the 2016 International Conference on AIDS to present his own research. This week, NC Health News will be featuring some stories from Lee about the conference and where North Carolina fits into the global fight against HIV/ AIDS.

By Lee Storrow

One of my board members told me that coming to the International Conference on AIDS would be a life-changing experience. I felt it the first day I arrived in Durban.

[pullquote_left]The International Conference on AIDS is the largest conference on any global health or development issue, and occurs every other year. This year’s conference runs through July 22.[/pullquote_left]

That day, I was sitting in a pre-conference session on PrEP when the lightbulb went on for me.

PrEP stands for pre-exposure prophylaxis, a medication that HIV-negative individuals can take that will prevent HIV transmission. Its introduction as a prevention strategy several years ago has radically changed the face of the HIV prevention movement. And the seminal research on PrEP was done by scientists from UNC Chapel Hill.

Dr. Aaron Siegler from Emory University presented on a recent National Institute of Mental Health study on “PrEP @ Home,” a shift in the way PrEP follow-up is provided.

It’s a technique that could make preventing the spread of HIV among rural residents of North Carolina much easier.

UNC Chapel Hill researcher Myron Cohen makes a point during the Towards an HIV Cure Symposium,17 July, 2016 at the 21st International AIDS Conference (AIDS 2016), Durban, South Africa. Cohen lead the international study that confirmed the PrEP strategy of preventing HIV transmission by using prophylactic medication.  Photo©International AIDS Society/Rogan Ward

Could one visit replace four?

Currently, individuals on PrEP are required to meet with their medical provider every three months and get a full screening for sexually transmitted infections before getting their next prescription for the medication.

These frequent visits place a heavy burden on providers and the healthcare system and are time-consuming for consumers. Siegler’s study explored the concept of mailing materials to individuals on PrEP so they could complete their STI screen at home.

Participants received a package in the mail with STI-testing materials that they returned when completed. They had to prick their fingers for blood samples in addition to completing oral and anal swabs.

I was skeptical at first. I’ve always seen that one value of PrEP is the way it helps link people to primary care.

The process also seemed cumbersome.

But as I pondered it further, I became excited.

Lee Storrow and Ashley Moore next to condom couture dresses designed by Adriana Betini on display in the Global Village at the International AIDS Conference in Durban, South Africa. Photo courtesy: Lee Storrow

Many individuals in rural communities in North Carolina struggle to find a medical provider who’s knowledgeable about PrEP, and may have to drive hours to take part in the process. Plus, four visits a year to a provider is excessive for otherwise healthy HIV-negative individuals.

But with a PrEP @ Home regimen, I can imagine a client’s maintaining one in-person visit a year to a provider for a broader conversation about sexual health. You’d still need to meet with your provider in person to get the initial

rescription and start the medication. The provider would do an STI-screen during that visit, and give advice based in the results.

The other three tests during the year could happen at home.

PrEP @ Home isn’t likely to be a reality anytime soon. This initial study only showed that a home care system was feasible and acceptable. Now Dr. Siegler and his team are considering a randomized controlled trial to determine retention in care & drug effectiveness.

The unofficial theme of the conference feels like it’s #PrEPWorks. That thread has run through many presentations and conversations already and it was definitely on display in Siegler’s talk.

If you’re at the conference, Dr. Siegler will be presenting his results on Friday morning at 11:00.

Access denied

The conference repeatedly provides moments that remind me how unique our experience of fighting AIDS is in North Carolina, yet bears similarities to other places.

Ashley Moore, a former NC AIDS Action Network intern, is spending the summer in Durban managing a Duke study abroad program. She’s volunteering at the conference, and told me that being here has given her a deeper perspective about the global work of HIV treatment and prevention.

“Being at this conference reminds me that North Carolina is part of the global community, and our actions are recognized by the global network,” she said.

A rock in Durban, South Africa memorializes the life and work of Gugu Dlamini near the site where she stoned and stabbed death after admitting she was HIV-positive on a radio program on World Aids Day in 1998. Photo credit: Lee Storrow

Moore pointed out that this year’s official conference theme is “Access Equity Rights Now.” She said it’s inspiring, but also infuriating.

“It’s frustrating to see other countries fight so hard for access, especially when leaders in North Carolina have rejected access to healthcare for so many people by refusing to expand Medicaid,” she said.

Beyond the conference

By far, the most powerful experience so far has been getting outside of the walls of the convention center and visiting the Gugu Dlamini Foundation.

The Foundation was established to honor Gugu Dlamini, a South African activist who was killed for speaking out about her HIV status. Her daughter, Mandisa Dlamini runs the agency in a small home where she once lived with her mother. The foundation works with young women in Durban and gives them with job skills to help prepare them for employment. They help place young women in internships and connect them with career counselors.

The Foundation also supports the neighborhood by stocking a food pantry and dispersing food for those in need. It also provides a support group for women living with HIV in the community. Through the work, Mandisa is constantly speaking out about HIV and the toll it’s having in Durban to break down stigma.

When we arrived, singing women from the neighborhood greeted us. They were dressed in traditional attire, and a younger girl was beating a drum. I didn’t understand they language they spoke, but their energy and power of the song said more about their pride for the work and the foundation than any speech ever could.

Singing women greet participants of the International Conference on AIDS to the Gugu Dlamini Foundation in Durban, South Africa. Photo credit: Lee Storrow

We visited a rock at the site where Gugu Dlamini was killed, a memorial to her passion and advocacy. Masndisa showed us the home that now houses their work, a modest two-room building with dedicated panels telling the legacy of Gugu Dlamini.

Gugu died in 1998 because of HIV stigma. Nearly two decades later, that fight is ongoing. We see it in places like rural North Carolina, where sons are afraid to tell their parents they’re HIV-positive and people travel for hours to receive care because they fear their neighbors finding out their status.

Carolyn McAllaster, a professor at Duke University School of Law and the director of the Southern HIV/AIDS Strategy Initative (SASI) is at the conference to learn more about the kind of stigma the Gugu Dlamini Foundation works against.

“SASI will will be focusing its upcoming research on the impact of HIV-related stigma on access to care and prevention in the U.S. South, including North Carolina,” she said. “I’m excited to learn about stigma interventions from experts around the world while I’m in Durban!”

There are a number of North Carolinians attending the conference, including researchers, medical providers, and academics. I’ll be featuring some of their presentations and posters over the course of this week.

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Today, I’ll be offering up a poster presentation on our advocacy work in North Carolina. For those of you reading from Durban, stop by Track D of the poster section from 12:30 – 14:30/2:30 and say hi!



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