More than 111,000 patients living with HIV have defaulted on their treatment in the past two years, a figure health experts warn is deeply concerning and largely linked to mental health challenges. While the numbers are worrying, professionals stress they are not new, and that addressing the mental health burden is critical to improving adherence.

According to Professor Ashraf Kagee, Distinguished Professor of Psychology at Stellenbosch University, co-director of the Alan Fisher Centre for Public Mental Health, and member of the Academy of Science of South Africa, stigma, depression, and the daily grind of poverty all contribute to patients falling out of care.

“I don’t know if it’s possible to break the stigma overnight. It’s a long process of educating people, of exposing them to alternative ways of thinking,” said Kagee. “Some decades ago, there was a big stigma around cancer. People didn’t talk about it, it was mysterious. Now, there’s far less stigma about most forms of cancer. The same shift is possible for HIV, but it takes time.”

He added that many who default on treatment may have competing demands on their attention. Some people may be struggling with depression and anxiety on top of social stressors.

“For a lot of people who are poor, in a country like South Africa and a city like Cape Town, daily life is a challenge. If people are living in unsafe neighbourhoods, if there’s unemployment, if you don’t have a job, if you’re living in a shack that’s not properly equipped with water and electricity, if it’s overcrowded the daily grind is a challenge. In that context, adhering to medication if people are asymptomatic, if they don’t necessarily feel ill, may not be highly salient.”

Kagee emphasised that treatment defaulting is not an individual failure but a systemic issue. “There are many structural factors at play, such as stigma and the burden of long queues at clinics when people need to work or care for children.”

Despite these challenges, he stressed that treatment is effective. “The key message is that adherence to HIV medication is extremely important. People can live long, healthy lives if they take their medication as prescribed.”

Kagee praised the Western Cape Health Department for their efforts and offered advice for patients.

“If patients experience depression, anxiety or trauma, they should seek help. Services such as Cape Mental Health or the Counselling Hub in Woodstock can assist, and doctors at clinics can refer patients to psychologists or psychiatrists in the public system. Additionally, following medication instructions, maintaining good nutrition, exercising, managing stress, and engaging socially all support overall health.”

He also highlighted barriers for men and young people. “Many public clinics are feminised spaces where most nurses and patients, even doctors are women, Some men uncomfortable there as if they don’t belong. We need to place extra emphasis on men’s engagement in care.”

He said young people face their own challenges around disclosure, particularly those infected vertically from their mothers or through sexual activity, making adherence more complex.

Kagee said that one way the challenge of treatment adherence can be addressed is by tackling stigma, strengthening healthcare access, and expanding psychosocial support. “Adherence to treatment should be seen not as an individual failing, but as a collective responsibility shaped by the conditions in which people live.”

A professional nurse working with ARV patients said mental health and stigma are central issues. “If you can fix the mind, we can conquer the stigma around HIV. Many patients grow tired; it is a lifetime treatment, and the stigma makes it harder. Some still believe HIV can be contracted through sharing a toilet or kissing. Education from a young age is vital.”

The nurse added that some patients ask for unlabelled containers for their medication. “They put pills into another container because of how family or community perceive HIV-positive people.”

On Tuesday, the Western Cape Department of Health and Wellness, together with the National Department of Health, hosted a campaign encouraging people to start or restart HIV or TB treatment. The Close the Gap Community Outreach event also marked the official launch of the Close the Gap campaign in the province.

Department spokesperson Shimoney Regter said the initiative aims to support patients and raise awareness about treatment adherence and mental health support.

Dr Melané van Zyl, member of the South African Society of Psychiatrists, highlighted the psychological and social barriers that prevent patients from staying in care.

“People suffering from HIV often have to deal with psychological barriers that impede access to care. This includes suffering from depression and anxiety, which impede the motivation and energy to access care.

“They often have to face stigma and have a fear of disclosure of the HIV status. They have to deal with low social support and isolation, and they often have to deal with their condition alone. They struggle with feelings of hopelessness. They are scared of the future and often live with denial and avoidance,” Dr van Zyl said.

Structural and socioeconomic factors also play a role. Patients must negotiate poverty, previous trauma, substance abuse, and the daily stresses of life, which often make adherence to lifelong treatment challenging.

She added that adolescents and young women are particularly vulnerable, with only 38% remaining in care for two years due to discrimination from families and healthcare workers. Men, rural populations, and marginalised groups also face barriers, including clinic access, stigma, and unsafe or unsupportive environments.

To support patients, Dr van Zyl advocates for person-centred care, rapid treatment initiation, and psychosocial interventions.

“It is important that counselling is provided at the time of return to service and that treatment can be initiated rapidly again with a non-judgmental attitude towards patients. Peer and community support structures and outreach programmes, including home visits, phone calls, SMS reminders, and community-based engagement, are also vital.”

She emphasised the importance of addressing stigma and social barriers: “Stigma is difficult but not impossible to overcome. Sharing experiences, community support, and accessible care are crucial. HIV is a very treatable condition, and with proper support, patients can lead long and fulfilling lives.”

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