HIV/AIDS: Stories from an epidemic
June 8, 2010 — They are an odd couple of co-authors. Max Essex, chair of the Harvard AIDS Initiative and a world-renowned research scientist, teamed up with Unity Dow, author of four novels and the first woman to sit on Botswana’s High Court, to write Saturday Is for Funerals. The book, a hybrid of the science of HIV/AIDS and the personal stories of African families affected by the epidemic, plays to the strengths of both authors.
The two met when Essex was working in Botswana to establish what would become the Botswana–Harvard AIDS Institute Partnership. At the time Botswana had the highest rate of HIV infection in the world. About 35% of pregnant women attending antenatal clinics were infected. (Dow, left, and Essex are pictured).
Essex remembers his first impression of Dow. “She seemed poised and intelligent. I recall asking her to respond to a particular ethical dilemma we faced in our research. We were planning to conduct a trial on how HIV-positive pregnant women could avoid infecting their infants. Some girls under 21 wanted to participate to protect their babies, but would only do so if they didn’t have to tell their own parents that they were HIV positive. Unity helped us understand the law and address the problem.”
The initial admiration was mutual. “Quiet dignity,” is how Dow describes her first impression of Essex, “a man with purpose, a listening man.”
The idea for Saturday Is for Funerals came from Essex’s frustration when he couldn’t find a book that dealt with both the science of AIDS and the epidemic’s profound consequences for individuals and entire societies. “I had been teaching an undergraduate course called “AIDS in Africa.” I thought the material could be made more compelling for both students and the general public if they came to the material by sharing in the emotional episodes of real-life stories about how AIDS affected families in Africa.”
Not finding the book he needed, Essex decided to write it himself. Explaining science comes easily to him, but he realized he couldn’t write the book alone. “I needed someone who understood the culture and would ‘tell it like it is.’ I had read a couple of Unity’s earlier books. It seemed obvious that she was the one.”
Dow agreed to collaborate. “At first I assumed she’d use fictional families,” said Essex. “I was amazed and delighted when she told me she had more than enough to work with using real-life situations.” Only the names have been changed.
Much of the work of the Botswana–Harvard Partnership involves conducting clinical trials for the prevention and treatment of HIV/AIDS. Regulations are in place to protect the privacy rights of patients enrolled in clinical trials. Their identities and personal stories remain anonymous. It is important to protect the confidentiality of patients, especially because stigma about AIDS is still widespread. Yet privacy restrictions mean that the benefits of clinical trials are reported in statistics and percentages, rather than personal stories.
In Saturday Is for Funerals the stories behind the science are told by a world-class novelist. “The greatest challenge in writing the book,” said Dow, “was the constant knowledge that these are stories of real people. The lives of those people did not stop when I stopped writing.”
Publishers Weekly says of the book, “The authors offer an empathetic account of everyday life in a country where the disease infects one of every four adults—the constant funerals, the heroism of community workers and activists—and miniature narratives from the lives of the suffering and surviving: a teenager raising his siblings after being orphaned, a newlywed’s discovering that her new husband is HIV-positive.”
In the final analysis, understanding how people live and love is the key to developing scientific solutions that will truly work.
–from HAI Spotlight newsletter. Photo by Ryan Louis Hurley.