In some ways, Phumzile Nywagi is remarkably average: a married middle-aged father focused on work and family who, like millions of other South African men, is HIV positive.
But in 2001 he started his own male-only support group in Gugulethu, Cape Town, to bring together men to speak about their experience with the virus.
His active encouragement to get other men to open up defies what he says is a culture of stoic masculinity in which men don't talk about, or take responsibility for, their health.
"It's so rare for men to go for checkups. They don't want to get involved. From a societal point of view, there's no notion of responsibility."
Nywagi can wax lyrical about the societal problems of health and masculinity now, but when he was first diagnosed in 2001, he was no different. "I was in denial. When I became sick I thought it was just a flu." After a month of hoping and waiting, and losing a lot of weight, Nywagi finally got tested.
After coming to grips with his new reality, he found a safe space at the now famous Médecins Sans Frontières- and Treatment Action Campaign-supported Site B clinic in Khayelitsha, the first public clinic in the country to offer antiretroviral treatment (ART). But although attending the clinic's support groups gave him "a sense of belonging", Nywagi noticed something strange. "Most of the time I was the only man who would attend, and I kept thinking ‘where are your partners?'"
So Nywagi founded his own group: Khululeka, which means "be free" in isiXhosa, brought together 44 men living with the virus, and focused on combating stigma.
The group's T-shirts embodied Nywagi's vision of men and women working together to live positively: a male and female logo, matched with the motto "Together we rise".
Khululeka has since collapsed, but Nywagi's work hasn't: he's now a senior trainer at Sonke Gender Justice, an organisation focused on involving men in the fight against HIV and gender equality.
Nywagi spends his time educating men in the Cape Town community about HIV, sexually transmitted infections and gender-based violence. He works with a male-only clinic in Gugulethu, a partnership between the municipality and Sonke – making inroads into an epidemic that is silently killing South African men.
Morna Cornell, senior researcher at the University of Cape Town's school of public health and family Medicine, has conducted research published in the medical journal PLOS Medicine which has shown that across Africa, men are less likely to test for HIV, less likely to get treatment, and more likely to drop out of ART programmes.
She also says that, across the continent, men are 35% more likely to die of HIV than women; that figure jumps to 50% in South Africa. Although the department of health estimates that about 55% of those living with HIV are women, a disproportionate two-thirds of public sector ART patients are women. Departmental figures also suggest that men made up only 30% of the 14-million people tested in the 2010-2011 nationwide testing blitz.
"Men are simply not on the agenda," says Cornell. "The [World Health Organisation] says that no one should be sick or die because of gender inequality, but the term ‘gender' has been misappropriated to mean the women of health and girls," she says. "Whenever you see the word ‘gender', you see the word ‘women' really close behind."
Women more vulnerable to HIV
The focus on women is in part pragmatic. Caring for a pregnant woman in effect targets two people: the mother and her unborn child. Research has shown that women of childbearing age are also more likely to go to a health centre then men, as they seek reproductive health services and prenatal and antenatal care.
Biologically, too, women are more vulnerable to HIV infection than men – studies have confirmed the vagina is more easily torn than the penis during penetrative vaginal sex.
But Cornell says that HIV programmes' focus on women also stems from a gendered notion of who seeks healthcare. "We stereotype men … as perpetrators of violence, as transmitters of infection," she says. "Our health services do nothing to draw men in. I think a lot of men feel that there is no space for them."
As a result, Tim Shand, Sonke's international programmes co-ordinator, says that "HIV prevention, testing, treatment and care rests squarely on the shoulders of women".
Making an effort
Bafana Khumalo, a senior programmes specialist and Sonke co-founder, says that, even when men do try to make an effort, they're often prevented from doing so.
He notes that, sometimes, when men accompany women to a clinic, they're told by nurses to "[go outside] and go sit under a tree … It's not just about men; there's a lot we need to do in transforming the healthcare system."
Shand says that leaving men out ironically hurts women: When men don't know their HIV status or aren't receiving care, their female sexual partners are more vulnerable to HIV infection.
"Women also suffer emotionally and financially when their male partners and family members are sick, as they are often the ones offering care, and face the potential loss of an economic contributor."
'It's a slow process'
Leaving men out of the system is "not just bad for men, it's bad for women, it's bad for families, it's bad for a public health system", Shand says.
"If you get both men and women to health services then it improves health outcomes that we are looking for as a country," Khumalo asserts. "We need to approach it as ‘how do we engage all our people in services?' "
According to Sheila Tlou of the Joint United Nations Programme on HIV and Aids, "the best way to end mother-to-child transmission [of HIV] is to stop the woman from getting infected in the first place".
There is progress being made. Shand says that South Africa's current national strategic plan for HIV, sexually transmitted infections and tuberculosis – which sets targets and guidelines for the country from 2012 to 2016 – focuses on male medical circumcision, and the problem of poor health-seeking behaviour among men.
Nywagi says efforts to change the way men are viewed – and view themselves – won't happen overnight. "It's a slow process, but we're making change."
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