What the death of two men teaches us about our blind spot in the AIDS response

HIV services are not geared towards men even though they make up two-thirds of the HIV-related deaths globally. shutterstock

Meet Reuben Mokae and Sonwabo Qathula. Two men who both died unnecessarily of AIDS-related illnesses.

They have the same story as hundreds of thousands of men who die of AIDS each year in Africa. And their deaths reminds us of the enduring blind spot in the collective response to HIV and AIDS: our failure to adequately reach men with gender equality education and lifesaving HIV services, especially testing and treatment.

Their deaths also conform to a now predictable pattern. While HIV prevalence is nearly equal between women and men, men make up nearly two-thirds of those who die of AIDS-related deaths globally. Yet, in most of Africa, men make up only one-third of those tested and treated.

Not enough is being done to address this, with consequences for both men and women. And it also severely undermines efforts to reach the goal to end AIDS by 2030.

Reuben’s story

Reuben Mokae was part of the now defunct Men as Partners Network – a coalition of grassroots organisations that educates and supports men to prevent gender-based violence and HIV and AIDS.

A father of three and the son of a priest, Reuben joined the network through a HIV support group he and his wife attended after testing positive in 1998.

He used his own story to help men understand the devastation of gender stereotypes. He spoke proudly of how he rejected them to care for his wife, struggling with AIDS related opportunistic infections. She died in 2003.

His involvement in the program encouraged him to use condoms and other HIV-prevention strategies and understand the need for gender equality. But anti-retrovirals were only started to be available in 2004.

By then it was too late. Reuben was seduced by the South African government’s AIDS denialism at that time. He stopped taking his medication after then-health minister Manto Tshabalala-Msimang described anti-retrovirals as toxic. His health slowly deteriorated until he passed away in June 2005.

Sonwabo’s story

Sonwabo Qathula left home in the Eastern Cape province as a young adult to work on the mines in Johannesburg. He contracted HIV like so many other men forced to live away from their partners for months on end.

He participated in Sonke Gender Justice’s One Man Can Campaign, which mobilises men in rural villages across the Eastern Cape to respond to the interlinked epidemics of gender based violence and HIV and AIDS.

Sonwabo attended a support group for people living with HIV. But typical of these groups and the treatment adherence groups they often evolve into, it had no other men. He struggled to find people to relate to his struggles of living openly with HIV in a society that still stigmatised men who sought health services. He died in 2011.

Like Reuben, he also stopped taking his treatment. He had also stopped attending the support group regularly.

Lessons to be learnt

There are two lessons that can be learnt from Reuben and Sonwabo’s stories.

First, it is possible to get men to recognise the harm rigid gender norms cause for both women and men. Evaluations have shown that programs like the Men as Partners Network and the One Man Can Campaign can reduce men’s violence against women, increase their support for gender equality and improve their use of condoms and other HIV-prevention strategies.

But very few of those programs are being implemented. To stop AIDS, we will have to recommit to rolling such programmes out across Africa and across the world.

Second, Reuben and Sonwabo, like far too many men, fell through the gaps of a healthcare system oriented primarily towards reaching women during their reproductive years. Women access health services and can be tested for HIV during antenatal and well-baby visits. Men, on the other hand, are not often engaged through their partners’ participation. Men use workplaces and other community-based testing services, but these are not widely implemented.

Creating the right environment

When policies and programs are not developed to increase men’s access to and use of HIV services, the outcomes are predictable. Men get sick and die unnecessarily.

The impact is felt by their sexual partners, their families, their communities and the health systems that serve them. When men do not know their HIV status they are less likely to change their sexual practices and they are less likely to use condoms.

They are also less likely to access treatment and they are more likely to need ongoing care and support. This burden is initially borne by women who care for them at home. Later it is public health officials. In addition, patients with low CD4 counts require expensive treatment.

The failure of health services to adequately engage men drastically reduces the effectiveness of the impressive new HIV prevention breakthroughs. If adopted widely they have the potential to break the back of the epidemic. But the success of approaches like treatment as prevention or pre-exposure prophylaxis will be undermined if men are not reached.

In the last ten years, many studies have raised alarms about men’s low involvement in HIV services. Researchers have urged action on two fronts. Challenge the norms that portray seeking health services as unmanly and a sign of weakness. And improve health system policies, programs and service delivery strategies for better HIV services for men.