Rigorous as it may be, biomedical tuberculosis (TB) research has not succeeded in curing a once-curable disease.
This is the premise of medical anthropology and the medical humanities. It is with this in mind that UCT anthropologists began the project Social Markers of TB: A comparative study between southern Africa and India.
“Biomedical TB research is pivotal to understand the bacteria and the disease, to develop better drugs and better vaccines, but it cannot tell us why people do not take their TB drugs ... It cannot tell us about stigma, about hunger, about fear of being chastised by nurses and how these factors play out.”
So explains social anthropology student Chloë Shain, who contributed to the project as part of her postgraduate research.
The project proposes that the increased availability of innovative technologies will not necessarily lead to more diagnosis. Furthermore, increased diagnosis will not necessarily result in higher cure rates, or in lower rates of transmission.
Under the leadership of senior lecturer Dr Helen Macdonald, this interdisciplinary research delved into how the social nuances of the disease impact on the lives of sufferers, their families and their adherence to treatment programmes.
It began by trying to explain why patients lied, or provided false addresses to NGO workers who were providing medical care. (Research revealed pervasive public stigma and shame.)
The research project taps into this complexity in vastly different ways.
The three pieces of research that follow were presented at the Contemporary Ethnography Across the Disciplines (CEAD) conference, which was hosted in South Africa, and UCT, for the first time in November 2016.
Tuberculosis as ‘dust’
Although a great deal of research focuses on the treatment of patients, it struck social anthropology student Mutsawashe Mutendi that this research is not always inclusive of the political, social and economic factors.
With this in mind, Mutendi dedicated her honours and master’s research to the study of South African mineworkers and their understanding of this disease.
South African mines have the latest technology in place to detect infection, policy to ensure that patients continue treatment and protective masks to prevent infection. Despite this, the sector still has the highest rates of TB.
Mutendi argues that miners understand TB less in terms of a bacterial infection and more in terms of the conditions of life underground. This understanding is centred on the notion of dust, mine dust in particular, she explains.
As one interviewee repeatedly told her, “umoya lubile” (“the air is contaminated”).
This insistence is crucial, Mutendi explains, given that most gold miners are constantly exposed to silica dust, which greatly increases the risk of silicosis and pulmonary TB. By affirming this link, miners place themselves within a site of struggle against the hazardous working conditions they endure.
Demonstrating how theory and practise do not always coincide, Mutendi argues that the protective masks provided are not a practical means of preventing TB infection.
She explains how miners often use the phrase “ndibile” (“I am suffocating”).
The air, so dense and filled with chemicals, is already difficult to breathe in. The masks make this sensation of suffocating worse, so miners are largely unwilling to wear them.
Care makes for good science
This disease exists within human beings, explains Shain. Therefore, trying to understand it is also about understanding human beings.
By observing the interactions between molecular biologists and the bacterium, Shain’s research revealed unexpected care in an environment typically categorised by scientific lingo and jargon.
Her research took place in a biosafety level three (BSL-3) laboratory, where four scientists nurtured and cared for Mycobacterium tuberculosis, the bacteria responsible for causing TB.
“Without this care, the bacterium would die and the research would be unsuccessful.” She explains.
But instead of merely being subjects for experiments, the bacteria became like babies for the four scientists and a parent–child relationship revealed itself. One became so attached to her bugs that she could not bring herself to throw them away.
According to Shain, “Objective science is presented as a subjective experience, deadly bacteria are considered human babies and caring is what makes better science.”
Understanding inequality and TB
Macdonald entered the field in central rural India hoping to uncover local understandings of TB. What she found instead was doctors rejecting mainstream TB treatment models and adapting a body mass measurement to provide individualised care.
The doctors of Jan Swasthya Sahyog (JSS), which translates as the People’s Health Movement, run a non-profit organisation that provides effective low-cost community healthcare.
The JSS hospital is not part of the Revised National Tuberculosis Control Programme (RNTCP), which seeks to combat the TB epidemic in India.
While acknowledging the successes of RNTCP, JSS doctors reject its treatment regimes, which are not designed with individual patients in mind. In this model, measurements are used to average individuals and complexity, Macdonald explains.
The norms produced by these measurements do not resemble the population being treated by the JSS doctors.
“JSS doctors are in favour of an integrated system for care that places the responsibility of treatment on the patient. They are required to take daily medication and return to the clinic for a monthly consultation.”
Their system of care is centred on body mass index (BMI).
Instead of using BMI only to classify people as under or overweight, Macdonald realised that this measurement was being used to provide individualised care to TB patients.
“BMI was a proxy for hunger/malnutrition and ability to tolerate treatment, which served as a further proxy for poverty and one’s ability to pay for treatment,” she explained.
Just as medication is adjusted according to weight, so is the amount of discount a patient receives.
The poor often have a more extensive disease, a lowered ability to take in essential nutrients and tolerate anti-tubercular drugs, and are thus more likely to die despite treatment, she says.
“As such, people seeking their treatment through JSS tolerate TB treatment better, both physically and emotionally,” Macdonald explains.
It is by taking into account the political, economic and social complexities of tuberculosis that these UCT researchers are hoping to turn the tide of ever encroaching TB in South Africa and across the globe.
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