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Originally published in the Spring 2009 issue of Harvard Kennedy School Magazine.
When Wafaa El-Sadr MC/MPA 1996 first heard about victims of AIDS, the disease had not yet been named. She remembers the precise moment. It was in 1982 in Cleveland at Case Western Reserve University School of Medicine, where she was finishing up a research fellowship in infectious diseases. Her mentor showed her a report from the Centers for Disease Control listing the deaths of five young men in New York City from pneumocystis pneumonia, a rare form of pneumonia not usually contracted by the young.
“He said,” El-Sadr recalls sitting in her office at the Mailman School of Public Health at Columbia University, where she is a professor of medicine and epidemiology, “‘you should read this because you’re going back to New York and this might be important.’”
On her return to New York, El-Sadr, an Egyptian-born and -trained physician, began seeing increasing numbers of patients, mostly gay men, with the same condition, brought on by the disease eventually labeled HIV/AIDS (Human Immune Deficiency Virus/Acquired Immune Deficiency Syndrome). In just a few years, the number of new infections in the United States climbed to 130,000 per year, affecting a widening spectrum of individuals. By the early 1990s, she was also seeing an increase in the number of cases of tuberculosis.
With what was to become a hallmark of her approach to care, El-Sadr helped bring the spread of TB under control by her patient-centered approach. Suspecting that patients were not completing the six-month treatment because they often lacked the strong family networks that help patients want to get well, she created a home-like atmosphere in the clinic, one where patients enjoyed coming. In one year, the completion rate rose from 11 percent in 1992 to 89 percent in 1993.
Using the same approach, she was able to increase the number of HIV-positive mothers who remained in care by working with her pediatric colleagues to create a mother-child clinic.
Soon she was bringing her family-focused approach to Sub-Saharan Africa as founding director of the International Center for AIDS Care and Treatment Program, which now supports programs in 14 countries in Sub-Saharan Africa and Asia. Refusing to accept the common wisdom that treatment in poverty-stricken countries is useless and that prevention is the only course, she showed that successful antiretroviral treatment and comprehensive prevention and care were possible by again focusing on the lives of the people affected by the disease.
By the mid-1990s, after more than a decade of nonstop work, El-Sadr felt she needed her skill set to catch up to her growing responsibilities.
“You grow in your position, and suddenly you’re supervising large numbers of people. You fall into it without really having much training in management and leadership,” she says.
El-Sadr enrolled at the Kennedy School where she was struck by the school’s methodology, in particular its case method and its group-focused approach. “I had to learn to step back and accept that this was a different method,” she says. “It’s slower, on one hand, but it’s probably more effective in the end.”
Today she divides her time between the United States and Sub-Saharan Africa, following patients, and overseeing, designing, and evaluating programs in both locations.
While an estimated 22 million people are now living with HIV in Sub-Saharan Africa, El-Sadr points to a silver lining amongst the devastation. “As horrible as this epidemic is, it has the potential to transform health systems in this part of the world,” she says. “There’s never been such focus and energy, and it’s because of the passion around HIV and around the people with HIV. It has forced people to look at things and want to change them.”
As for how the epidemic has affected her personally, El-Sadr, now 58, who last spring was awarded a McArthur Fellowship, says her work with the disease has enriched her life beyond her imagination. “It has been a window into worlds I may never have known. I feel my life would have been much shallower.”
Photo by Levi Stolove
“As horrible as this epidemic is, it has the potential to transform health systems in this part of the world. There’s never been such focus and energy, and it’s because of the passion around HIV and around the people with HIV. It has forced people to look at things and want to change them.”