Our Projects

The Human Spirit Project is a collection of individual stories showing everyday people fighting the TB epidemic. 

The tuberculosis epidemic will not be overcome in one fell swoop.  There will be no grand sweeping gesture that accounts for its demise. There will be no lump sum that can pay off this treacherous disease. These are things most of us already know, but we don’t think about critically. Thinking about it critically reveals that the TB epidemic is not one large, global epidemic, but rather it manifests itself as a collection of singular, individual battles fought everyday by the people living with and working in tuberculosis around the globe.

This is a slight but important distinction. It indicates that in order to overcome the TB epidemic, our best chance is in sustaining these small, individual battles just as much – if not more than the – grand, overarching plans to eradicate this disease. For too long we have been defining successes and failures as a fluctuation in data. But the heart of overcoming the TB epidemic will be when we begin defining success as an individual battle that has been won, and failure is an individual battle that has been lost – whether it be the loss of a life, a failed policy, or a missed shipment of drugs.

 This is why we came up with the Human Spirit Project.  We want to begin to shift the conversation from data to people in a meaningful way. We want to make it beautiful and engaging, yes, but more than that, we want to characterize the epidemic as a collection of individual battles – that this shift doesn’t mean focusing on patients, but also on the researcher, innovators, policy makers, and medical personnel. Everyone has a role in the TB epidemic.

 

The first installment of the Human Spirit Project, "Strength of a Woman" shows a day in the life of quarantine for 12-year-old Thembi Jakiwe, who has been diagnosed with MDR-TB in Cape Town, South Africa. Despite her age, she is a leader among her peers, as well as her medical team (including us).

We take ethics in filming very seriously. As she is only 12 years old with a severe illness, we considered her a vulnerable subject and took special care and sensitivity when interviewing her, as well as when editing her interview. As with all our subjects, Thembi and her family provided full written and verbal consent and approved not only the interview, but also the final edit shown here. She and her family are fully aware of this distribution and are in full support - actually proponents - of it being shown globally, including online.

http://humanspiritproject.com

Behind the Numbers is a short-film series that highlights people working on the tuberculosis (TB) epidemic. The purpose of the project is to coordinate the individual battles fought in the TB epidemic and show that each person has a role in overcoming the epidemic.

There is too much discoordination among the various disciplines in tuberculosis, and we must realize that each individual faces a much different epidemic than the next: patients pervieve the epidemic much differently than researchers, and policymakers confront different issues than clinic managers. Unifying these battles, however, is paramount to successfully overcoming the TB epidemic. Behind the Numbers will consist of a wide-ranging collection of short films (3-5 minutes) which profile various individuals and their role in overcoming the TB epidemic. Importantly, however, these short films will not be an ‘informational video,’ but rather an intimate portrait of the individual’s life as a whole. We will see the researcher who loves ballet, or the World Health Organization official who has trouble feeding their newborn child. This will not only highlight the individual battles fought in the TB epidemic, but it will also create stories that inspire us, entertain us, and show that we are all connected as human beings. By connecting the individual efforts in global TB control through the prism of life and humanity, the project hopes to inspire those of us working in TB to continue fighting our individual battles.

The project is advocacy for the advocates. The fight against global tuberculosis is daunting, and many people are overwhelmed in the endless statistics. With all of the numbers, too many become weary, jaded, and perceive the battle against tuberculosis as too difficult to overcome It is all too easy to lose hope. The Project will not reiterate or focus on the data and epidemiology of TB, but rather the specific challenges associated with an individual’s work. It will make a complex network of individual battles simple and human. It will hope to build a unifying camaraderie among advocates, researchers, care providers, and the many other roles in the field of TB control. However, with arresting cinematography and compelling stories, the project also hopes to attract a wide range of viewers.

 

They Go to Die is a doc­u­men­tary film-in-progress inves­ti­gat­ing the life of four for­mer migrant gold minework­ers in South Africa and Swazi­land who have con­tracted drug-resistant tuber­cu­lo­sis (TB) 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 to rural areas of South Africa often with no con­tin­u­a­tion of care or means for treat­ment. This prac­tice is often referred to as “send­ing them home to die” by lead­ing health officials. The film raises con­cerns of dis­ease and human rights vio­la­tions uniquely though the con­text of life, love, and fam­ily; unlike tra­di­tional health films, it focuses on rela­tion­ships and bond­ing, not death and dis­ease. It is a film of unit­ing across cul­tures and paints a por­trait of com­mon humanity.

www.theygotodie-movie.com

The Voices Campaign is an innovative advocacy campaign seeking to advance global tuberculosis (TB) education, funding, support, and research by leveraging the collective power of an individual voice. Using personal storytelling, the project hopes to translate the wealth of TB statistics, research, and policy into inspiring short portraits that are globally accessible on a novel web-based platform.

The pilot Campaign focuses specifically on gold mine workers in sub-Saharan Africa. Due to conditions at the mine and the concomitant HIV epidemic, migrant miners in South Africa face the highest rates of TB recorded in the world. Many men return home with little or no continuation of care, and risk both their health and transmission of the disease in the community. This process is colloquially referred to as being “sent home to die” after they contract TB while working underground.The pilot campaign will collect dozens of miner’s stories around the southern African region, focusing on Lesotho, Swaziland, and the Eastern Cape of South Africa. Instead of focusing on the disease, stories will celebrate the lives of the miners – their interests, their hobbies, their sense of humor – showing the people behind the numbers we know so well in the epidemic. Using GPS signaling and a novel web-based entry platform, the stories will become dynamic – linked together on an interactive map using key words and visualizing the geographic breadth of the epidemic among mineworkers.

www.voicescampaign.org (under construction)

Visual Epidemiology is constantly entertaining new ideas. Some will work, others will not. Success is not based on a completed product but rather the product’s ability to foster a better understanding of global health by pushing the boundaries of creativity and innovation. A few ideas are listed here, but by no means limited to these. If you are interested in working on a project with us, contact us to begin the discussion.

Decisions (tentative title) (Forthcoming)

Global Health Issue: Various

Decisions (tentative) is a novel, interactive narrative film project following out the health decisions faced by various high-risk populations for diseases such as smoking related illnesses, HIV and other STD's, and drug related issues, among others. Following the life of statistically high risk individuals – an indian youth, a sex worker in Thailand, and a married woman in sub-Saharan Africa, for example – Decisions will interactively engage the viewer to actually make various decisions for the character on the screen. Filming for a wide variety of outcomes to account for the multiple decisions posited, and using statistical algorithms based on the health choice from the viewer, this novel interactive medium will simultaneously engage and educate viewers on the realistic possible outcomes of high-risk behavior.

Helpless (tentative title) (Forthcoming)

Global Health issue: Cerebral Palsy in developing countries

Both born in rural Africa with cerebral palsy (CP), best friends Mike and Chris have no use of their lower and limited use of their upper body. Despite their physical impairment, Mike, a self-proclaimed ‘charmer’ to the ladies, and Chris, who describes himself as the ‘strong silent type,’ are excelling in school and both DJ at local clubs. Helpless is a real-life documentary that addresses CP research and conveys their intelligence and skill set through the narrative of their unique friendship – best described as ‘compatibly contrasting’ personalities.

I Will Survive (tentative title) (Forthcoming)

Global Health issue: Access to care

I Will Survive is a narrative short film investigating disparities in access to healthcare. The story follows an elderly Chinese woman living in the inner city as she becomes diagnosed with cancer and struggles to find access to care. As she works the local Chinese market to pay for treatment, her family members do everything in their power to contribute. However, dogged with low paying jobs and little support from the government, her fight is becoming ever more uphill. As the family continues to seek support, the film ends leaving the viewer questioning her outcome, and coming to the stark realization that the family has not been living in urban China, but rather the Chinatown district of inner city Los Angeles. The film seeks to highlight the 50 million Americans that have barriers to treatment, and create a likeness to those living in developing countries: who are often the only ones we perceive as those unable to access care.