Medical care and human rights in Uganda

Esther sits outside her mud hut home in front of a rust-red tree framed by the lush vegetation of the central Ugandan countryside and tells her shocking story. For more than two months her doctor had imprisoned her behind a locked gate and barbed wire-topped fence. She received no food, relying for sustenance on visitors and her son, whom the doctor also detained and compelled to work as a guard and laborer.

The reason for the detention: Esther owed $65 of $200 for an operation that cured her of a crippling disease. But Esther is reluctant to condemn the doctor too harshly. He operated on her when no one else would.

“I just pray that God forgives him for what he has done,” she said.

Esther plays a pivotal role in a documentary by Michael Otremba, M.D. ’12, which explores the detention of Ugandan patients unable to pay their bills. The movie is titled Twero, which means “right to health” in Luo, the language of that part of Uganda. Otremba, who devoted his fifth year at the School of Medicine to the project, wanted to combine his interests in human rights and the visual arts. He paints, and as a first-year student he organized a Christo-like art project that involved wrapping anatomy tables in pink [“End Note,” Yale Medicine, Autumn 2008]. Although Otremba had been to Uganda twice, he knew nothing about film.

In stepped Gretchen K. Berland, M.D., associate professor of medicine, an accomplished documentary filmmaker, and recipient of a MacArthur “genius” grant, whose work includes the award-winning Rolling about wheelchair users. Berland schooled Otremba in moviemaking, provided weekly advice by phone during six months of filming in Uganda, and helped edit 50 hours of raw footage. She was careful to ensure that the film remained Otremba’s. “It’s very easy for the mentor, as someone with more experience, to take over,” Berland said.

Berland’s assistance was crucial, Otremba said. Her most valuable insight: interviewing documentary subjects is like interviewing patients. In both cases, you are asking them to open up and tell truths. Berland also helped Otremba with an ethical dilemma when he filmed a father who could afford malaria medication for only one of his two daughters. Otremba arranged treatment for both girls.

What appears to be a black-and-white story isn’t; and conveying that reality is the film’s biggest challenge. “In some ways, there’s an understanding of the doctors’ plight,” Otremba said. “Only 60 percent of Ugandan physicians stay in the country, and not many are willing to work in these rural areas. I don’t think in any way it’s okay. But it is difficult when you meet a bunch of physicians. They make so little money, and they are the only ones around.”

A doctor who detains patients—not the one who treated Esther—justified the practice, saying he needs to pay his bills. He added that he always treats first even though he knows that 30 to 40 percent of patients can’t pay the full fee. “It’s a controversial and disturbing practice,” Berland said. “Patient detention is part of a larger set of responses to an inadequate health system.”

Patient detentions are a symptom of larger systemic problems, including corruption, funding shortages, and a culture maimed by years of civil war, Otremba said. He hopes to enter his 30-minute movie in human rights film festivals and plans to show it to policy makers in human rights, but isn’t about to give up his stethoscope. “This reinforced that I want to be a doctor,” he said. “I like being able to help.”

In August Otremba learned that he had received one of six awards conferred in 2012 by the international consortium, Networked Digital Library of Theses and Dissertations, for his film. The awards recognize students who have written exemplary electronic theses and dissertations.

Update
As we were about to publish this issue of Yale Medicine, we learned that Michael Otremba’s film had won the award for best documentary feature in the 2nd Annual NYLA International Film Festival.