Tuberculosis was once known by the Victorians as “the scourge of the empire”. Many a white man sailed out to fulfil his role in “Empire-building” with medicine chests filled with all the “known cures” – cures that should in some ways remind us of the Mbeki-era HIV pronouncements.
As the historian Jan Morris revealed, one Scottish explorer in the 19th century set off with his medicine chest filled with: “Brown’s blistering tissue, lunar caustic, citric acid, julap, camomel, rhubarb, colocynth, laudanum, Dover’s powders, emetic essence of ginger and something called simply ‘Blue Pill’.”
Of course, the same Victorians also believed sea sickness could be cured by drinking seawater or simply taking Messrs Lorimer and Co’s “Infallible Cocaine Lozenges”.
Many people think of the story of TB as one of the past. Perhaps some might think of it as the story of John Keats, George Orwell or Albert Camus, all of whom caught it in overcrowded, unhygienic conditions. Keats and Orwell almost certainly caught it in overcrowded and unhygienic hospitals, while Camus contracted it while growing up in the slums of Algiers.
Without the terrible burning of the lungs and the coughing up of blood associated with TB, “Ode to a Nightingale”, Nineteen Eighty-Four and The Plague might never have been written. But their personal stories of infection, suffering and the inability to breathe still happen to this day right under our noses.
Yet most middle-class people seem barely aware of the fact that in South Africa, TB is of epidemic proportions. As my friend Dr Tash Koch, one of the founders of the TB engagement NPO, Eh!woza, tells me: “TB is one of the leading causes of death in South Africa (largely owing to the fact that around 65% of TB occurs in HIV-infected individuals).”
Khayelitsha now has one of the highest TB- and HIV-infection rates in the world. Just why this is, is obvious: poverty, cramped living conditions, a lack of access to healthcare and bad nutrition.
In 2021, the World Health Organisation (WHO) estimated that around 56,000 deaths occurred in South Africa due to TB. This is a figure not dissimilar to the official number of Covid-related deaths in the same year. We have a TB epidemic in South Africa, but it is one largely occurring among the poor and marginalised. And as a result, it is socially invisible. Or at least invisible to the middle class. And like most issues here, this problem has a very distinct racial dimension.
Racism and TB have a long history. As the American experience in the early 1900s proved, different TB mortality rates occurred among different racial groups. It was something that in fact helped fuel ideas of segregation.
The mortality rate of Native Americans in the early 1900s was estimated to be a staggering 3,000 per 100,000 people per year. At a similar time, the average mortality rate of African Americans was around 600 per 100,000 in urban settings, while being much lower – around 300 per 100,000 – in rural districts. The mortality rate for whites in America was seemingly a lot lower at around 210 per 100,000 of the population.
However, you just needed to look at the different white communities to realise there was another story going on. The mortality rate among the Irish was almost identical to the African American population. It was around 400 per 100,000 nationally, but as high as 600 in New York and Boston. However, among the largely Polish Jewish community, the mortality rate was only 170 per 100,000.
History and lifestyle played a major factor in these statistics. The Irish were much like the African Americans, in that they had come from rural communities where exposure to TB historically was far less. And the urbanisation of rural communities always saw a large uptick in infection rates.
The Jewish community was of a different socioeconomic class and they had had a much longer experience of urban living. But these statistics did not seem to convince certain researchers that circumstance, rather than race, was an important factor.
Rather depressingly, it was research in South Africa that further racialised the issue. From 1926 to 1932, research into black miners in South Africa led some scientists to speculate that black people lacked “immunity potential”. Some people have suggested that this “proof” of “racial susceptibility” allowed the mining companies in SA to simply ignore the high death toll among their miners.
It was only in 1952 that race as a factor in TB infection was globally debunked. In that year, the WHO stated that there was “no convincing evidence that susceptibility to tuberculosis, or the course of tuberculosis, is dependent on the degree of pigmentation of the skin or any other racial factor”.
As the WHO now states, TB infection “is strongly influenced by social and economic development and health-related risk factors such as undernutrition, diabetes, HIV infection, alcohol use disorders and smoking”.
Its spread has always been exacerbated by spikes in urbanisation, cramped living conditions, poor sanitation, poor diet and, perhaps most importantly today, a lack of access to healthcare.
It is modern infrastructure and access to healthcare that are required to help solve the problem of TB. In Europe, the rise of infection rates due to industrial-era urbanisation was later curtailed through the improvement of infrastructure and decent housing.
Just how basic and blasé South Africa’s approach is to the desperate need to build infrastructure in our townships was brought home to me again the other day by Twitter handle, @DAward54. It proudly informed me that the DA-run city “provides access to shared toilets. Communal water points are situated within 200m of each household.” In many countries, a statement like this might evoke great shame. But seemingly not in ours!
However, in South Africa we face another issue: a failure of awareness and mixed messaging. The uptake of biomedical, clinical and public health measures proves a significant issue here. Stigma, taboo and mistrust are some of the major factors that we face.
In South Africa, trust in government is at one of the lowest levels in our history. And the post-apartheid government messaging around health has a long history of dysfunction and a distinct lack of credibility.
From the Sarafina HIV awareness corruption scandal, to Mbeki’s minister of health recommending the African potato as a defence against HIV, to illogical Covid-19 policies, to John Steenhuisen’s recent meeting and photo op with the vaccine sceptic Dr Aseem Malhotra, all have created mistrust and confusion.
There certainly is a credibility gap that has sapped trust.
An interesting observation, made by Nobel Prize-winning economist Esther Duflo, is that people can and do listen to members of their community and friends on issues of health. Duflo discovered this, in particular, during the Covid crisis where experiments proved male Republicans would wear masks when encouraged to do so by somebody they trusted. Some male Republicans even responded well to messaging by a young female doctor!
This idea of messaging and awareness is precisely an idea being explored by Koch and her partner Ed Young in their Eh!woza NPO. The programme for high school students in Khayelitsha involves documentary-making and workshops which stimulate discussion around disease and health, and help improve the distribution of accurate knowledge.
As Koch says, the point of Eh!woza is “to try to encourage health-seeking behaviour. To encourage people to get tested if they are worried about whether they have TB, and to minimise stigma around people who might have TB.”
Awareness, the WHO argues, can save lives. Certainly in South Africa, a little more awareness of the TB epidemic is urgently required. DM
Matthew Blackman is a friend of the founders of Eh!woza, Dr Tash Koch and Ed Young. He has received no financial benefit from this article.