BHEKISISA | Could games help people stick to HIV treatment?

They teeter on a narrow, unstable bridge with the hope of making it to the other side — a sun-baked island where life is good, But the journey will be treacherous. If they fall off the bridge there is a menacing shark, crocodiles ready to snap and hippos about to charge.

It’s game day at the Eersterust Community Health Centre in Pretoria and Portia Mazo, an HIV counsellor, explains the lay of the land.

The photo of the island represents the hopes and dreams of a bright future, she tells the participants. The ropes are the support systems that will help get them there — things like abstinence, mutual faithfulness and condom use. The sharks, crocodiles and hippos — fellow participants wearing masks — represent HIV, sexually transmitted infections and unintended pregnancies.

Today’s game is helping Mazo teach her patients about sexually transmitted infections. She uses the same approach to show people who have HIV why sticking to their treatment will allow them to live a healthy life and get to the island with a beautiful future. 

According to a study published in the Southern African Journal of HIV Medicine, it’s an approach that works.

The countdown to ending Aids

Adherence to antiretroviral treatment (ART) — properly taking medicines that help people with HIV reach viral levels so low they can’t infect someone else — is a big barrier to ending Aids.

“Adherence is the be-all and end-all of successful HIV treatment, especially as side effects are so limited and far less common,” says Francois Venter, executive director of the Ezintsha research centre at the University of the Witwatersrand. “The struggle is to swallow the tablet every day and that is an issue for almost all of us taking medication.”

It’s also a big part of the UN 95-95-95 plan to end Aids around the world. By 2025, the goal is for 95% of people in those states to know if they have HIV. Of those who tested positive, 95% should be on ART and of that group 95% should have viral levels low enough that they can’t infect someone else.

Though South Africa has come a long way, reaching the middle 95 could be a problem. The country’s latest figures — from the Thembisa model, which the government uses to report on its UNAids targets, show 95% already know whether they have HIV. 

But of those — the group for the middle target — only 78% are on treatment.  

Workshopping the game

Mazo learnt about using a game as a teaching tool at the South Africa Aids Conference in Durban in 2023. 

Peter Labouchere, the social and behaviour change specialist who came up with the game, held an interactive workshop to show how it works. 

With Labouchere acting as the director of a sort of microbiological play, he instructed Mazo and her fellow participants to put on masks to represent different characters. They would play the roles of white blood cells, HIV and ART.

Labouchere then instructs the players when to move into or out of a square marked out on the floor and which represents the body. The white blood cells wait inside the square. Then, the HIV invaders move into the block. They attack the white blood cells, pushing them out of the square until there aren’t many left. 

Then the ART players move in, coming to the rescue. White blood cell characters then start moving back in and HIV players get kicked out. The white blood cells celebrate.

The game helps participants understand how the body responds to infection and treatment. But more than that: it also shows why it’s important for someone to take their pill at the same time every day, how to deal with the stigma of being HIV positive, how to ask for the support of family and friends and the importance of people telling others about their status. 

Labouchere, who started the Bridges of Hope Training programme, says physical experiences that use different senses — seeing, hearing and feeling — tap into emotions, which is better at changing behaviour faster than just teaching someone the facts.

He says it comes down to people saying: “As I hear and see and do, I really get it, internalise it and apply it.”

The University of Pretoria’s Sanele Ngcobo led the research team that found the approach works. 

They tracked 467 participants in Tshwane over 12 months and found those who used games to learn about ART stuck to their treatment 97% of the time, while those who were taught using more traditional methods adhered to treatment only 78% of the time.

Mazo, who is now a trained Bridges of Hope facilitator, has seen its success first hand.  

“It’s difficult to explain to someone what antiretroviral drugs (ARVs) do, why they need it and how it works,” she says. “It’s also difficult to understand. But armed with the knowledge, disclosure becomes easier and so does accepting that you can still have dreams and goals in life.”

Why people don’t take their medicine

There are many reasons why people don’t stick to ART — from fear of being discriminated against and the stigma of having HIV to high transport costs to get to a clinic for refiling a script, side effects and not having support from family or friends. Issues such as long queues at a clinic or negative attitudes of health workers towards people with HIV can also be a problem. 

Ezintsha’s Venter puts it down to the “chaos of everyday life”. 

“There are so many reasons for interrupting therapy and the system doesn’t make it easy to move clinics or to come back after you’ve stopped your treatment. The healthcare workers routinely yell at you. It’s a huge disincentive to come back.”

Despite studies having shown  young men who have sex with men and teenagers and young adults are willing to try online or video games to help them learn about HIV transmission or stick to treatment, Venter isn’t convinced it’s the fix. 

Discussions that help people stick to treatment can play a positive role but he is doubtful that patients will stick with it long-term. Adherence, he says, is influenced by everything from moving and losing a job to a relationship that breaks down, taking alcohol or drugs, having mental health issues and the occasional “I forgot”.

Ngcobo and his team found using a physical game like Labouchere’s is particularly important where “access and knowledge of digital technology are limited”.

Sticking to ART

Patricia* had been living with HIV for many years, but it wasn’t until she came to some of Mazo’s groups that she understood the importance of adherence. After telling her three children and her mother she was HIV positive, taking her medicine regularly became a lot easier.

Adherence also helps the clinic, says Mazo.

Women who stick to treatment can enrol in the government’s chronic medication dispensing and distribution programme. It allows those who have repeat prescriptions to use pickup points closer to their homes or work than the clinic. 

Patricia is now one of them. She gets her medication from the pharmacy and only comes to the clinic once a year for check-ins and blood tests. 

She’s far better at sticking to her treatment than she’s ever been in the past, but she still struggles with telling others about her status — like her new partner, who she’s not yet had that conversation with. 

That’s a problem, says Mazo.

“If they don’t disclose their status to their partners they hide their medication and don’t take it as prescribed,” she says. “If children don’t know it’s difficult to convince them to take their medication ... the 10- to 12-year-old group is not adhering, often because the mothers did not inform the children of their status.”

A future with HIV

Back at the health centre, Mazo turns to the participants and the sun-baked island of life ahead.

“Tell me about your future. Where do you see yourself in five years’ time?” she asks.

One young woman says she sees herself in a house with her husband and children, running her own business, happy and content. A woman in a floral dress says she’ll also be working and self-employed. A girl in a pink shirt sees herself living abroad. 

“We do not have to abort our goals,” Mazo tells the women. “Even with HIV.” 

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.