A 12-Year-Old Girl Shows Us What It's Really Like To Face TB
How do you turn a contagious disease like tuberculosis from a set of statistics — 9 million cases, 1.5 million deaths a year — into a human story?
One way is by making a 4 1/2 minute video.
"Thembi Jakiwe: Strength of a Woman" is the story of a 12-year-old South African girl with a sweet, shy smile and luminous eyes. She is the oldest in her tuberculosis ward, she tells the camera. She thinks of herself as the mother of the ward, holding hands with and looking after the younger kids.
To beat TB, she needs 180 injections. On day 14, the very thought of the injection, she confesses, upsets her: "I'm nervous, and I'm shaking." She doesn't share her feelings with the other kids "because they don't have to know, I have to be strong."
Wearing a pretty pink coat, she lies face down on a hospital table. Her smile vanishes. A hospital worker prepares the injection. The screen goes blank for a second and you hear the girl's moans and tears. Then she's in the backseat of a car, waving brightly as she heads home for a weekend break from the clinic.
"She's literally my role model now, and I have very few 12-year-old role models," says Jonathan Smith, a Yale University epidemiologist, who co-created this video at his nonprofit company Visual Epidemiology. "Tuberculosis isn't one huge epidemic; it's a collection of individual battles fought every day."
Since 2010, the cinematography team has made three film series about TB and another on HIV. Jakiwe's story falls under their latest project, "The Human Spirit." Launched in September, it looks at the wide spectrum of people fighting TB: patients, health workers and policymakers. Next month, the team will travel to Geneva to interview Lucica Ditiu, the director of Stop TB, a United Nations-backed initiative.
Smith set up Visual Epidemiology as a grad student at Yale. To examine the spread of TB and HIV in South Africa, he spent hours interviewing patients. The end result of his labors was typically a chart that got buried inside a scientific journal. But Smith learned that behind each data point is a person, a family, a community and a story.
Smith's first film, an hour-long documentary called They Go To Die, explored migrant mining in South Africa. For decades, millions have left their homes and journeyed across the countryside to work in contract mines. They live in cramped, dormitory-style quarters — hotbeds for airborne diseases like TB. South African gold mine workers have the highest rate of TB in the world — 7,000 cases per 100,000 — 28 times the World Health Organization's bar for a declared emergency and 1,400 times the rate in Western countries. At the same time, HIV is also rampant, infecting nearly three of four workers. Miners who become sick lose their contracts and must return home.
"That's referred to as 'being sent home to die,' because there is very little infrastructure for care where they live," Smith says. They Go To Die follows four men, sick with TB, on their journey home and how one of them was able to survive.
The full-length version of They Go To Die toured 28 British cities in 2013, while Story of a Girl, which traces the experience of women living with HIV, will be shown at the Albany Film Fest.
The team also creates short films for global health institutes that want to add human voices to their presentations.
It takes weeks to produce even the shortest of films, but none of the six-person staff, including Smith, draw a salary. The team mainly works during off hours at home and when conducting studies in the field. Occasional grants fund travel and equipment. So this is a case where the cliche – "labor of love" – really does ring true.