In South Africa, 94 percent of men with HIV know their status, but only 71 percent of those are on treatment. Thato Ncosta, a 24-year-old from Welkom, South Africa, is one of those men living with HIV and on treatment. He is also a champion of the power of HIV treatment.
Image of Coach Thato wearing a t-shirt with the USAID logo on it. Credit: Thato Ncosta
Growing up in the years before HIV treatment was widely available, Thato witnessed many AIDS-related deaths in his community. He was fortunate to have family members who talked openly about HIV and supported those who were living with it, however he still felt overwhelmed when he received a positive test result himself.
“When I went for my test, I was with my friends in a group, so I felt a bit ashamed of what my friends would think because of the stigma surrounding an HIV diagnosis at that time,” Thato shared. With the support of his family and other people living with HIV in his social group, he soon accepted his diagnosis and began treatment.
A nurse at the clinic where Thato was tested encouraged him to apply to a local coaching program, called the Coach Mpilo model. The research-based Coach Mpilo model found that an HIV diagnosis leaves many men anxious and afraid; many men do not believe that a long, healthy, happy, life with HIV is possible; and that most men are looking for support in coping with HIV, but do not feel like there are safe and relatable resources available.
The Coach Mpilo model is a reimagined peer support and case management model that employs men that are living well with HIV as life coaches to men who are struggling with linkage to treatment, adherence to medication, disclosure of their status, and other challenges. Coaches are recruited in the community and participate in a one-week informational training. Afterwards, they are linked to a clinic and deployed in their community. Coaches connect with men through a combination of clinic referrals and community outreach, and provide individualized support to each man in overcoming their barriers to treatment and retention. Once they become stable on treatment, support tapers off, although coaches continue to check in and remain available as needed.
Coaches, like Thato, draw on personal experience to provide empathetic, tailored, one-on-one support for men living with HIV up until the point of viral suppression. (When the men reach viral suppression, they are eligible to start picking up medication at a clinic fast-track lane, private pharmacy, lockbox, or other convenient pick-up point, and go to the clinic twice a year for viral load testing. Coaches let the men know they are always available for any new concerns or challenges.)
Master trainer Silver Shabalala visiting coaches in their community. Credit: Matchboxology
In 2020, a seven-month pilot of the Mpilo model with men aged 20-37 years in South Africa showed high levels of acceptability and effectiveness in supporting linkage to treatment and retention, with 3,811 men enrolled and 3,653 men retained on treatment, a 96 percent retention rate.
In 2021, the Mpilo model was moved into routine implementation and scaled by seven PEPFAR partners in South Africa, covering 20 districts in six provinces. Since routine implementation began, over 32,000 men have been linked to and retained on treatment, with 364 coaches providing support to 291 clinics.
“My training as a coach made me realize that there’s a person inside me that I have always underestimated. It gave me a platform to be my own coach, and to lead and mentor others regardless of their age, gender, race, or sexuality.”
Master trainer Thulani Grenville-Grey with a group of coach trainees. Credit: Matchboxology
Coach Thato recalls his first days of work, wondering whether other men would take him seriously and accept his support. Through his coaching efforts, Thato was encouraged to find that most men are looking for support to cope with a HIV diagnosis, particularly from someone who has walked the same path themselves – like him.
He says that empathy and vulnerability have been the key to building trust; by sharing his own HIV story, Coach Thato creates a safe space for other men to do the same. His goal is to empower people to take control of HIV, and in doing so, take back control of their lives.
“I would like to see all men living happily with HIV and being positive about life. That is what I want, and that is my goal.”
The Coach Mpilo model demonstrates that when we apply consumer insights and human-centred design approaches to understand people’s challenges from their perspective and to co-create solutions, we are able to achieve high levels of engagement, linkage, and retention. It also demonstrates that the right messenger is as important as the right message, and that the right messenger is often someone who brings the deep empathy of having walked a similar journey.