The first of December marks World Aids Day, 40 years since what was to become known as HIV was recognised as a virus needing special attention. Politicians, activists, researchers, doctors and community leaders all worked hard at developing a collective response that culminated in South Africa today managing the world’s largest antiretroviral programme, with 5.5 million people on treatment.
Tracing the trajectory of the virus from when it first spread among mainly gay men in America to black women in Lusikisiki in rural Transkei and Inanda on the fringes of the eThekwini urban metropole, tells the story of how inequality within patriarchy, racism and the economy, conspired to wreak havoc on communities in South Africa that represent the most marginalised and bear the greatest burden in our unequal society.
Understanding how poorer black South Africans, mostly young women, became the population with the highest prevalence rates will go a long way in informing how the country addresses the poor health outcomes associated with poverty, unemployment and access to health services.
With early access to the first treatments, the men in the richer Western cities, who were the most impacted by HIV, were able to live longer. Nowadays, treatment advances mean that people living with HIV can live almost entirely normal, healthy lives.
Studies show that a person living with HIV now has a similar life expectancy to an HIV-negative person – provided they are diagnosed in good time, have access to medical care, and are able to adhere to their HIV treatment. This, sadly, is not the case for many South Africans living with HIV.
Untreated or poorly treated HIV infection makes people vulnerable to many other serious infections such as TB and Covid-19. In fact, TB is the leading cause of death among people living with HIV and South Africa’s number-one natural cause of death.
Unequal power relationships between younger women having sex with older men and the stark disparities between richer urban centres and poorer rural areas will continue to fuel the spread of the virus for as long as South Africa continues to be the most unequal country in the world.
Although we can see that these are drivers of poor health, community leaders, the government, political parties and social movements struggle with developing collective responses that will build a strong, more equal, healthy and safe society free from the burden of HIV and Aids.
Read in Daily Maverick: “Six graphs that tell the HIV story in South Africa”
Much of the focus of the leadership in the country has been on deepening the understanding of the technical and scientific reasons behind the poor health outcomes. These have ranged from biomedical to behavioural science interventions – better and longer-acting treatments, more convenient prevention options, programmes that work to empower and build resilience among young women and girls, and capacity-building work with community organisations that are at the coalface of working to overcome the burden of the disease.
Visit Daily Maverick's home page for more news, analysis and investigations
But the organisational challenges faced by leaders building organisations, be they community-based organisations, government departments, social movements or political parties, have similar roots that result in similar problems that, on the surface, present as corruption and bullying that can be traced to undemocratic practices where leaders have drifted away from their constituency and the people they serve.
Parallel with political parties, unions
The decline of our political parties and trade unions – the bedrock of democratic practice and rooted in struggle – means they have become distant from the people they serve. Tracing the history of organisations working within the HIV response over the years shows a similar pattern.
Trade unions, political parties and NGOs went through similar transitions in South Africa over the period of our transition that spanned the heightened struggles of the 1980s to where we find ourselves today. Organisations born out of struggles had democratic practice and servant leadership that got lost as the democratic government and the Constitution set the framework for our liberation from apartheid, racism, poverty and gender-based violence.
These practices waned as organisations became bureaucratised, grew exponentially and had their budgets distorted by huge investments that did not necessarily build on the years of organisational development, processes and practices that entrenched accountability and democracy.
Read in Daily Maverick: “‘Equalise’ or lose the Aids battle, UNAIDS warns”
Sadly, the trajectory did not lead to a progressive change that improved lives for all at the pace and to the extent that many dreamed of.
Perhaps the answers lie in leadership development that centres our values deeper in understanding the drivers of our oppression and taking personal responsibility. Making the issues personal requires a deeper internalisation of our daily practices in relational leadership with those around us, with whom we strive to build a better future.
While understanding the systemic and structural drivers of poor health – poverty, inequality, racism and gender-based violence – can be helpful, making change happen requires active, engaged, thinking individuals bringing their whole self and values to addressing the problems.
The key leadership lessons from these 30 years are, first, to pay attention, remain close to and centre our constituencies; and in South Africa this means poorer black communities.
Second, one must understand oneself in relation to these constituencies, in respect of how power is being played out in organisational and individual relationships.
And finally, a warning: be mindful of the distortions that money and privilege wreak on building strong organisations and responses. DM
The Networking HIV and Aids Community of Southern Africa is a national NGO that supports community-based organisations working on HIV.