“They go to die”: A quest to tell the story of HIV/TB among southern Africa’s gold miners

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Jonathan Smith, writer and director of the documentary "They Go to Die."

The following is an interview with Jonathan Smith, writer and director of a documentary-in-progress highlighting the extent of the dual HIV/TB epidemics among South Africa’s mine workers. Entitled “They Go to Die,” the feature-length film follows four former migrant gold mineworkers in southern Africa who have contracted drug-resistant tuberculosis and HIV while working at the gold mine. When the miners fail to improve their TB status at the mining hospital, they are sent home with no continuation of care or means for treatment.

Smith earned his master’s of Public Health degree at Yale University with dual concentrations in Global Health epidemiology and epidemiology of microbial diseases and chose to do his graduate thesis on the HIV/TB co-epidemics explored in his film. Now a lecturer in global health at Yale, he is working to raise the funding needed to complete the documentary’s production. Science Speaks sat down with Smith to discuss the film, what the epidemics look like on the ground in southern Africa, and what he is doing to raise the money needed to complete his documentary

See a brief introduction to his documentary here:

Tell me about what is going on with TB and HIV among the mining population in southern Africa.
Geez, where do I start? South African gold mineworkers face the highest rates of TB in the world – up to 7,000 cases per 100,000 people. The gold mining industry experiences rates of disease 28 times what would be declared a TB emergency by the World Health Organization, which is 250 cases per 100,000. You can contrast that with the 5 cases seen per 100,000 in the U.S.  And on top of that, one in three mineworkers will get HIV within 18 months of working at the mine.

Today in South Africa, thousands of men migrate to and from the mines from rural areas of South Africa and surrounding countries. In Lesotho alone, more than 50,000 men migrate to the South African mines each year; 60 percent of these men travel home at least once a month. As a result of this circular migration, an estimated 760,000 cases of incident tuberculosis in the general population of sub-Saharan Africa is directly attributable to the mining industry, 165 percent more cases than the entire country of South Africa has each year.

When did you start working on this project and who introduced you to the topic?
Greg Gonsalves actually introduced me to the topic in a global health module at Yale. It was actually quite funny because I didn’t want to do the class assignment which was a presentation, so I just picked a topic off of the syllabus and Greg had designed the syllabus and included mining and TB.  So I picked that topic. I still remember giving my presentation  on TB and mining and thinking, “These are not the correct statistics – I made a type-o.” And then I realized, no, it really was that bad. I decided, “I’m going to do a research project on this for my graduate thesis.”

I started investigating all of this, and I contacted the National Union of Mineworkers in South Africa. They wrote me back and said, “Yes, we’ll help you with your research, but so you know, there’s been a century of research on this population and people essentially use the miners as Guinnea pigs, and they’ve seen no benefit from the research.”

I thought – what’s the point of public health research if there’s no public benefit? To me it’s the worst public health epidemic that we’re facing today. How could you get worse? It’s the highest rates of TB in a 90 percent migrant population that has no access to health care. These three things are terrible alone, and they’re all combined.

The last straw was I read a statistic from a Deloitte Audit that said 400 out of 28,000 gold mineworkers received compensation for their occupational TB. I thought, that’s ridiculous, I have got to do something. I’ve got to make a film.  I had no knowledge of filmmaking so I organized for a year and a half, and eventually arranged to live with these mineworkers who had been infected with TB on the job. Two lived in an informal settlement outside of Carltonville in South Africa, and two lived in remote parts of Swaziland. These were urban slum settings and extremely rural settings. And both had their own challenges with access to care.

Initially I was still in a data-type mindset, but once I got there and once I started living with the families, I started realizing that the story went beyond the numbers. One mother I met was in between her newborn’s first and second test for HIV – they do a test at birth and then the main test about six weeks later – and to watch her mental rollercoaster with that made a real impression. It’s easy to say in a class presentation that a woman and her baby were waiting for test results, but to actually live that experience with this mother at her wits end, finally coming to know that her child did not have HIV, jumping and clapping and coming back to her community and everyone was really happy – that’s just one of the things that really made me want to bring the life of these people into the discussion.  So I did ask the people I filmed explicitly about their experience with HIV and TB, but I also asked, you know, how they met their wife, and followed them around, and learned about their lives.

Tell me about the situation in the mine – was the TB testing done by the mine? Do they get sick and then they get tested?
It kind of varies. One miner went home for a few weeks and started coughing, and he came back and told the mine he was coughing and sick, and they said, “You got TB at home so we’re terminating your contract.” And they sent him home. Other workers did get sick in the mine – they tested and treated them – and then after six months when they didn’t get better, because it was multidrug-resistant TB, so when they didn’t get better they were released from their contract. This practice is commonly referred to as “sending them home to die” by leading health officials. However, it is still allowed under South African legislation.

It all deals with this very complex legal contract system that I’m not an expert on. They’re using third-party labor contracts. These people aren’t directly employed by the mines, so the mine isn’t legally responsible for their health care. This sounds very Michael Moore, but it is true.  If the mine sees it in their best interest to terminate the contract and send them home, then they do. The problem I’ve found is the cycle of poverty it perpetuates.

One question I would ask of the mines if I could would be – every mine worker that I’ve talked with said when they got sick the mine offered, as a financial means for their family to survive, that their son come work at the mine.  That makes absolutely no sense to me, but they are eager for their sons to work. I don’t understand why the mines don’t offer to treat the father and make him better rather than say, “You’re sick, can we come get your son?”  It really is this cycle of poverty.

What about prevention for TB?
That’s another point of contention and that’s another point where you can sound very much like an activist. The reason TB is so bad in the gold mines specifically is the silica dust combined with the HIV problem. They work together to greatly increase the rates of TB infection.

There was this mass silica dust reduction campaign facilitated by the mining industry as a whole. The Chamber of Mines organized this thing called MOSH – the Mining Occupational Safety and Health committee – and one of their goals was to reduce the silica dust levels in the mines, and they had a very large PR campaign and everything. The problem is every health official in and out of the mines that I’ve spoken with about silica dust reduction has said that the level at which they are saying they will reduce the silica dust to needs to be about half that to be physiologically relevant. So they are having this large push for reducing silica dust – which is good, you can never say any push for reducing silica dust is bad – but it’s not enough, they need to cut it at least in half to see a benefit.

So they can’t put on masks?
They do, but that’s another issue. The mines are up to six kilometers underground, so the cycling of air that’s about 12 kilometers round trip – it’s just a logistical problem. With poor air circulation, it gets really hot and sweaty. And the paradox here is that silica dust is so fine you have to have an extremely thick mask to prevent its respiration – and these masks make it extremely difficult to breath, and then it’s also hot and sweaty. So the miners will take off their masks.  And there is no supervision down there, or education of these miners, to say by taking off your mask you are putting yourself at a much higher risk for TB.

What do they attribute the high rate of HIV to among this population?
Right, so a new HIV-negative mine worker 1/3 of them will get HIV within 18 months. That’s a very daunting statistic. I could talk forever about this issue – the crux is that the mine doesn’t offer family-style housing, so they often times end up living in these single-sex hostels of 15 to 20 men. They can’t have relationships when they live with 20 men in a hostel, so their source of relationships is the sex workers. The rates of HIV among the sex workers range often times up to 70 percent. The contextual mental anguish of being away from your family and your social network results in high rates of alcoholism, which also increases the use of prostitution.  

A solution to that would be to facilitate family style housing where they could bring their family. But that isn’t happening. It’s gotten to the point now that it’s the cultural norm for the wife and the family back at home to know that the husband will engage in sexual activity, and it is not looked down upon. It is not seen as cheating. So they have what they call “town wives” or “senior wives,” and then the “junior wives” out at the mine. So it’s a cultural norm that was born from apartheid and the century of forcing men to come work away from their homes.

Do the mines do anything to promote safe sex – like distribute condoms, etc?
Some mines do more than others. The larger, more regulated mines do have TB and HIV programs and they do distribute condoms. Keep in mind this film doesn’t discount anything.  My goal is to present everything about the situation in a very non-biased and clear way. So there are some progressive programs, but that’s mainly in the two larger mines.

A lot of the mines have excellent tertiary care – the problem is not the quality of care or having care – because they have the financial resources for that. The problem is keeping those people in care and treatment. So the issue is the mines sending these people home when their TB is not cured, and since these are migrant workers they also want to be in the comfort of their families when they are sick and dying. Even sometimes a worker’s contract wasn’t terminated and they leave to go home and be with their family. So the problem is continuation of care.

So the statistic you gave about 400 of 28,000…
That is the number of people that got compensation to continue TB care when they went home —  28,000 mine workers applied for compensation for their occupational TB and only 400 received it.

What’s the situation with your film?
I have literally begged, I have slept in my car, I’ve done everything I can up to this point, and taken the film as far as it can go with no funding.  Funding has always been in the back of my mind, and so my thought process has been if I don’t have any funding I’m going to do whatever I can to advance it. And now I’m coming to the very sobering realization that I will be running in circles now until funding comes through and I can finish the film. I’ve very diligently and strategically lined up the film so that once the financial dam breaks – it can just go and we will very rapidly have a finished film, probably in about three months.

The version that I created for my thesis I put together in about three and a half weeks in time for graduation, and it won the Lowell S. Levin award for Excellence in Global Health from Yale University. That cut was 70 minutes long. The editing space that the school let me use was basically just a desk in a room, and I had a cot and I just slept under the table for about four hours a night and I just worked all day to complete the piece on time. To make matters worse, while I was in Swaziland I contracted both Scarlet Fever and scabies, so I had a fever and I was itching everywhere, trying to edit this film… I would never put anyone through that. But it’s a testament to how badly this story needs to be told.

2 thoughts on ““They go to die”: A quest to tell the story of HIV/TB among southern Africa’s gold miners

  1. Anne Marie Ruff

    This is an amazing story, both the story Jonathan Smith is telling and the story of Jonathan Smith’s storytelling. Thank you for spreading the word to your audience.

    Anne Marie Ruff
    author of Through These Veins

    Reply

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