By April Dejarlais
As part of Macalester’s AIDS Week, Yale graduate student Jonathan Smith stopped at Macalester last Tuesday to show and discuss clips of his in-progress documentary They Go To Die. The documentary delves into Smith’s research with South African miners who contract tuberculosis or HIV, and are sent home by their mining companies with no access to treatment – essentially “sending them home to die,” which is a common phrase used by South Africans when a miner’s contract is terminated. The case has been an on-going problem for over a century, and been declared a public health emergency 28 times by the World Health Organization (WHO). Self-described as “not a filmmaker,” Smith was motivated to use his epidemiology research for a documentary in order to make the knowledge accessible and reach further than the pages of an academic journal. “I wanted to bring lived experience to the academic realm and a larger audience,” he said. South African mines are the deepest in the world, which makes cycling fresh air into them difficult, Smith explained. The ore in South Africa has a particularly large amount of silica dust which is absorbed by the miners’ lungs and destroys the organs’ immune system – a “physiological perfect storm for disease,” he said. Smith stayed with four miners and their families throughout his research period, and took on the combined role of anthropologist, journalist, and epidemiologist. His relationships with the people he stayed with went deeper than the typical “people of disease” that epidemiologists see, which increased his frustration toward the international inaction on the miners’ behalf. Three of his host miners who had no access to medicine later died of tuberculosis, news that he called “mentally disturbing.” “You rarely see the translation of rhetoric into action,” he said. “We often ignore the individual when thinking about policies.” Smith’s research led to his rethinking of public health policy and what it means for societies. When epidemiologists focus only the disease affecting a person, they miss out on the rest of that person’s life that has nothing to do with the disease, he said. Adding in the personal factor of living with families – seeing between him and them the “common threads” as people – showed Smith the shifts that families and communities have to make around a disease, and how it disrupts their lives. For instance, Smith recounted the story of a son who had to take care of his father with tuberculosis since his mother was away. The father would often wake up at night with coughing fits, and consequently the son had to drop out of school because he was too tired during the day to concentrate. “Public health understanding will increase when we know why people are who they are,” he said. “It [public health] should be us working with them, not us helping them.” Mining in rural South Africa is the largest employment opportunity for adult men, and black males make up 90-95% of the miner population. Paradoxically, the South African mining industry has the highest cure rate of TB among mining populations, with 85% of patients with access to treatment recovering fully. Access, however, is the main problem – only 10% of miners are directly employed through companies, with the rest being contracted with no guarantee to medication. Tuberculosis treatment is free to all South African citizens, but a large amount of paperwork and documents are needed which many miners do not have, Smith said. Shying away from the title of “activist” (saying “I don’t like activists per se”), Smith aims to “weave together the components” of academic research, engaging policymakers, and motivating civil society. By themselves, he said, these areas would only result in “small individual pushes” toward a solution to the miners’ problems, but tying them together can lead to larger action. His envisaged solutions to the health emergency are the acquisition of official diagnoses for miners with tuberculosis from doctors, so miners are able to give it to clinics, receive treatment, and still go home to be with their families rather than working or staying in a hospital. Treating and reducing silica dust would help reduce the tuberculosis contraction rates, and advocating for family-style housing near the mines would lower HIV rates, since many miners make use of sex workers while they are far from home. Smith will be returning to South Africa in January to raise awareness among miners about increased access to treatment, and for further research to back his message: “If you can turn an epidemic into an emotion, then you can motivate change.”
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