Why you should care
South Africans carry the largest HIV burden globally. How they tackle their youth treatment crisis could hold lessons for the world.
As a community service doctor in 2006, Mhairi Maskew remembers a woman in her 30s who was wheeled into the clinic where she was working. The woman had a CD4 count — a measure of immunity where the healthy range is 500 to 1500 — of just 1. “I thought she’d never make it,” Maskew recalls. But thanks to antiretroviral therapy (ART), the woman was soon living a normal life again, unable to transmit HIV.
She is one of 5 million South Africans whose lives have been transformed by ART. The problem? A recent Lancet HIV paper (lead-authored by Maskew) shows that, despite those gains, only 44 percent of the country’s 15- to 19-year-olds who seek HIV care actually go ahead with ART. It doesn’t get much better with under-24s. Those concerns are now spawning a fast-expanding set of innovative tools targeted at youngsters who currently aren’t starting ART.
These include “adherence clubs” that provide peer support for those already in treatment; tablet and mobile apps to tackle stigma and misinformation; and youths-only clinics where youngsters don’t feel judged. The first hurdle is getting youth to understand that “an HIV diagnosis is no longer a death sentence,” says Dr. Anna Grimsrud, lead technical adviser for the International AIDS Society.
HIV is now easier to manage than diabetes. But we are still struggling to get youth through the door.
Dr. Aurelie Nelson, Medécins Sans Frontières
South Africa is the world’s HIV capital — its 7.5 million HIV-positive residents constitute 21 percent of those with the virus globally. Among Black South Africans, every fourth woman and sixth man has HIV, while the numbers are negligible for Whites. How these tools perform could offer critical lessons for other unequal countries that too are locked in a battle against AIDS.
“HIV is now easier to manage than diabetes,” says Dr. Aurelie Nelson, from Medécins Sans Frontières (MSF) in Khayelitsha, a township on the outskirts of Cape Town. “But we are still struggling to get youth through the door.”
Youth-friendly clinics appear to be changing that. They offer youth-friendly hours (they are open later so that patients don’t have to skip school, college or work), nonjudgmental staff (it’s common at regular clinics for youngsters to be told they’re too young to have sex) and integrated consultations (no need for multiple appointments). They were launched by MSF in 2001 but are spreading nationally only now. By 2018, 70 percent of youth who came to them had started on ART and 75 percent of these were retained in care after 12 months. These clinics are currently being rolled out in 27 particularly vulnerable districts nationwide.
Another initiative involves group therapy sessions with between 20 and 30 patients on ART who meet at a clinic every two months. These collectives were initially called adherence clubs but weren’t successful among youth. They’ve now been rebranded as youth clubs and taken out of clinics and into community halls. A nurse is always present to cater to other medical needs, including family planning. After seeing its success, the country’s ministry of health plans to roll out the initiative, started by MSF, on a larger national scale — youth clubs have yielded an 86 percent 12-month retention rate for ART newcomers, and 94 percent for “stable” patients.
In rural KwaZulu Natal, faculty lead Dr. Maryam Shahmanesh and her colleagues at the Africa Health Research Institute (AHRI) are trialing EPIC-HIV, a tablet-based counseling application “rooted in local narratives and personal testimony.” In late 2018, the application — designed to encourage men to test for HIV and access care — was found to result in around 85 percent of participants going for a test. And 97 percent of those surveyed felt the application helped them manage their health.
Shahmanesh hopes that ultimately EPIC-HIV will dovetail with Zenzele (“do-it-yourself” in isiZulu), a mobile phone-based app piloted in 2018 that takes users through the process of conducting an HIV self-test and links HIV-positive users to care.
That’s easier said than done. Earlier this year, Canadian health products company Aviro Health partnered with MSF to launch a web-based platform called Khetha [“choose” in isiXhosa] featuring educational videos and animations about HIV and sexual health. Preliminary results suggest that the biggest barrier to success will be the cost of mobile data. From next month, MSF will be offering it for free in two Khayelitsha clinics. But ultimately, Nelson hopes a network provider will come on board to offer a data-free version and that libraries, schools and universities will adopt the platform and offer it free of charge.
At AHRI, meanwhile, the EPIC-HIV trial is ongoing but Zenzele is currently on ice — wider rollout of both apps will depend on the institute finding funding. Shahmanesh is hopeful but acknowledges that mobile applications can only assist in overcoming external stigma.
Challenging the internal stigma that somehow still persists will require “an overhaul of societal norms,” she says. Getting everyone to accept that “adolescent sexuality is a normal thing” requires open dialogue — and this must start with community work and youth engagement.
Grimsrud couldn’t agree more. Challenging internal stigmas starts with “open and frank discussions” at home and in the classroom, at the water cooler and on the sports field. To achieve the dual goal of increasing the number of people on ART and reducing the rate of new infections, “we all need to know more about HIV.” It should be common knowledge that condoms aren’t the only way to prevent transmission; that people who commence ARTs early enough enjoy normal lives with on-par life expectancy and that an ART patient with an undetectable viral load cannot transmit the disease.
In a stark warning to both regular South Africans and international donors suffering from “HIV fatigue,” Grimsrud says that “now is definitely not the time to take the foot off the pedal.”
“This should be a good news story,” she says, referring to all the hard work, frank conversations and creative initiatives happening in South Africa’s nine provinces. “And it still can be.”