A couple of months ago, I received this incredible story in my email. I was asked to help distribute information for the film documentary They Go To Die, and I immediately thought of posting it for the JIDC special TB Issue.
Jonathan Smith is an epidemiologist, who also has a special interest in each life that exists behind the statistics. His work focuses on the problem of TB and HIV co-infection among gold miners in South Africa. Importantly, not only does Jonathan strive to describe the scientific problem, he also wishes to tell the stories of the mine workers who have contracted these diseases. This compelling project has culminated in the production of a film documentary, They Go To Die, of the miners and their families as Jonathan lives and works with them in South Africa.
What really drew me to Jonathan and his project was that I felt he shared the same vision and goal I had when I started the JIDC Blog. This goal was to share the stories of the human lives behind the science. Below is the Press Release that was sent to me. Also, you can see an introductory video to his Film here:
For Immediate Release
Unique approach to conveying research stirs public interest in HIV/TB epidemics
Media project catches the attention of TB/HIV experts
NEW HAVEN, CT – October 3, 2011 – Among researchers around the globe seeking to find a solution to the world’s growing TB/HIV epidemics, one researcher at Yale University is taking a slightly different angle.
Jonathan Smith, a lecturer in Epidemiology of Microbial Diseases and Global Health at the Yale School of Public Health who focuses on TB and HIV among South African gold miners, has turned to artistry and visual media to convey the urgency of these concomitant epidemics. Visually presenting his research experience in a documentary film titled, They Go to Die, he is uniquely seeking to surface complex health and legal issues associated with these devastating epidemics though the prism of life, family relationships, and community.
“Health research has become a statistical argument about a gain or loss of numbers. Statistics are undoubtedly important because they highlight the gravity of a situation. But ‘mortality’ doesn’t simply mean someone dies, it means an individual is removed from a greater, organic infrastructure of family and community. The effect of this removal is something that you can’t relegate to the confines of an academic journal, much less verify with p-values,” Smith states, describing his approach.
Smith, who began the project as a graduate student at Yale, self-funded and self-organized two separate trips to southern Africa for the film’s production. After a year and a half of organizing, working several part time jobs, and a crash course in filmmaking, he left for Africa to live with the families of four former mine workers coinfected with TB and HIV. There he became immersed in their lives – even sleeping in the same communal bed with the families and garnering a traditional name, ‘Masheshay’nike.’ During this time, he documented their daily lives in order to understand how former mine workers and their families cope with life at home with TB/HIV.
South African mines have long been synonymous with disease. Informal and substandard living and working conditions underground lead to high rates of silicosis, a disease cause by silica dust produced in the mines, as well as TB. Living in hostel-style living conditions means intimacy is often only in the form of sex workers, which also puts miners at high risk for HIV infection. HIV and silicosis both act to increase TB susceptibility, but when combined, they multiplicatively increase the risk of TB infection.This ‘perfect storm of disease’ results in the highest rate of TB in the world: up to twenty-eight times a declared emergency set by the World Health Organization and three times higher than the highest burdened countries. Unfortunately, over ninety percent of the men are migrant workers and frequently oscillate between the mines and rural areas of southern Africa. This spreads the disease around the sub-continent with frightening efficiency: a recent study indicates that aside from HIV, South African mining is the largest driver of the TB epidemic in southern Africa and directly responsible for 760,000 incident cases of TB each year.
TB is perfectly curable and HIV is manageable with proper medication. However, when a worker becomes sick at the mine, their illness deems them ‘unfit for work,’ and legal complexities absolve corporate, governmental, and union-based accountability for the worker’s health and well-being. Subsequently, they are sent home to rural areas of southern Africa with no medication or means for continuation of care. Since these areas often have little or no access to medication, this process is colloquially termed, “sending them home to die.” It is this colloquial terminology where Smith derived the name of his film; a term that he feels highlights the complacency of the situation.
Without proper treatment, TB complicated by HIV kills with ease: eighty three percent of untreated, coinfected individuals will die, having an average life expectancy of only 6 months from onset of disease.
But don’t remind Smith of this. To him, it is all too real.
“These men were my friends. They invited me into their home and accepted me as family. Then they died a completely preventable death – so this is obviously personal to me. Needless.” he states, clearly affected.
“Its frustrating. You hear it at every conference; every health official with a voice has deemed TB in the mines an ‘emergency’, ‘threat,’ or a “catastrophe.’ But lethargy and inaction deflect this hopeful rhetoric and reality shows the epidemics have only gotten worse. The unfortunate paradox is that this is a preventable and curable disease in a well-regulated industry with a competent government that can easily rectify the situation if there was enough political momentum,” he continues.
Smith’s approach, however, hopes to cut past the statistics and politics by uniquely focusing not solely on death, politics, or numbers, but on the importance of the individual’s life. “No one wants to watch a film about death and become depressed. We want to know there is hope, that there is a reason we should stop this, and that this can be surmounted,” he states. The film’s website goes on to explain, “They Go to Die surfaces issues of health, human rights, and legal complexities… nonlinearly though the context of life, love, and family. It is ultimately a story of humanity – a celebration of family and the power of relationships.”
The distribution plan for the film is also what makes the concept particularly lucrative. With eye-catching aesthetics and high production value combined with valid academic rigor, Smith hopes to make the film appealing to both a general audience as well as decision makers in the academic and governmental realm. This combination, for instance, would make it dually relevant at venues such as academic conferences and university lecture halls, as well as international film festivals, television, and other mainstream outlets.
“Most individuals are not decision makers, so motivating civil society is pointless without a means to release that energy; conversely, educating decision makers is pointless without accountability. This film will hopefully bridge both academia and civil society, and act to accurately inform decision makers while empowering civil society to remain as a watchdog,” Smith states in describing this unique model.
His approach seems to be working and is attracting attention from many leading public health officials.
“Jonathan has done something that most of us in academics rarely achieve,” says Dr. Kaveh Khoshnood, global health professor and HIV/AIDS researcher at Yale University. “[He tells] a compelling story that provokes action.”
Dr. Elizabeth Bradley, Director of Yale’s Global Health Initiative says of his project, “The key about Jonathan’s work is it is authentic. He really knows his stuff and captures reality in a way others have not. You are not the same after you see his film – a great piece of public health.” Dr. Bradley is world renowned for her work in health delivery and quality improvement.
Last May, Dr. Paul Cleary, Dean of the Yale School of Public Health, awarded Smith the distinguished Lowell S. Levin Award for Excellence in Global Health. Smith was also awarded the Yale Global Health Initiative Field Experience Award in 2010 for the project’s innovative approach to global health.
The project is currently in post-production, where Smith is using the website Kickstarter.com to crowd-source the $13,000 in funds needed to advance the project. Over 10,000 projects have been financed through Kickstarter since its founding in 2009, which allows individuals donations towards a variety of creative projects. To date, the project has raised $6,520 from 81 supporters, some of whom are those mentioned above, but per Kickstarter’s all-or-nothing policy he has only 21 days left to reach the goal or he will receive no funds at all.
But again, don’t tell Smith this.
“[Fundraising] is a necessary evil, and I’m trying to figure it out at the moment. It is not a question of ‘if,’ but of ‘how’ and ‘when.’ But I am acutely aware that money alone will not make this approach successful. Like any effort in public health, money is necessary, but it doesn’t equal change. We want the film to serve as a thread that weaves together interested organizations and individuals and mobilizes them to enact change. That will take commitment, teamwork, and dedication, not simply money,” he states.
“We could raise all the money in the world but if we don’t create action, quite frankly, the project is rendered pointless,” he continues.
Jonathan will be travelling through Canada and the United States in late October through December. He is planning multimedia presentations and Q&A sessions at local campuses and other forums, and is looking for individuals and groups who would be interesting in attending these talks.
Now a lecturer at Yale, he hopes to teach and reproduce this model in other areas of global health. Smith states, “There are a number of global health issues that where data clearly delineates a need for change, but action seems to be absent. If we connect that statistical evidence with the power of humanity, then we can motivate the change needed to help those who need it most.”
For more information about They Go to Die, visit: http://www.theygotodie.com
Jonathan can be reached at: firstname.lastname@example.org
The They Go to Die kickstarter page can be found at: http://kck.st/ocZ5rn
If you (or your organization) is interested partnering with the film, please contact Jonathan Smith directly.
Press Release and Photos provided by BGS Horsman