November 26, 2007
Aiding Africa and beyond
By Carol Clark
Susan Allen was 28 when she moved to Rwanda in 1986 to begin her career as a physician. During her residency at the University of California in San Francisco, she had autopsied gay men dying of unusual disease combinations that would soon be linked to AIDS. When Allen learned that heterosexuals in Africa were also wasting away from typically treatable diseases, she wanted to investigate. She wrote 150 grant applications, netting $30,000 to go to Kigali, Rwanda, and test pregnant women for HIV antibodies.
She couldn't afford an office. "I'd drive up to the hospital in my little, beat-up Jeep with my lab equipment and set up a card table in the open-air waiting area," Allen says. "When it would rain, I'd fold up the card table and move under the eaves."
Her humble operation was the first mobile HIV testing lab on the African continent. Out of 3,800 women tested, 32 percent had antibodies for the strange new virus.
"We were stunned," Allen recalls. "At that time, we had no idea what to tell people when they tested positive."
More than 20 years later, Allen's work remains at the forefront of AIDS research. A professor at the Rollins School of Public Health since 2004, she continues to direct the African project she founded in 1986, which has evolved into the Rwanda Zambia HIV Research Group. Now headquartered at Emory, the RZHRG is following the longest-running and largest cohort of heterosexual, HIV-discordant couples in the world, providing vital data about HIV transmission and prevention methods.
Her reddish-blond hair still damp from a swim, Allen is a whirl of energy in her office in the School of Nursing. She answers questions from interns who pop in her door, taps out e-mails and takes the occasional international phone call as she gives an interview to Emory Report.
"We just got our posters and fliers printed — here, take some," she says, referring to "Beyond Hollywood's Rwanda," a Nov. 27 panel discussion she's helping to organize.
'I just did the work'
Allen was born in Caracas, Venezuela, to Irish-American parents, and raised in Lebanon and Brazil. She is fluent in French, has dual Irish and American citizenship, and is passionate about serving as a physician in the developing world.
"I was too young to really grasp the enormity of it," she says, reflecting on her early days on the AIDS frontline. "I didn't really think that much about it — I just did the work."
Despite her youth and lack of research experience, Allen received NIH funding to conduct a long-term follow-up study of about 1,500 of the original women she tested for HIV. The cohort expanded in 1988 to include spouses, revealing the surprising data that 14 percent of the women were in an HIV discordant relationship — where one partner is positive and the other negative. Allen was unable to publish the data until 1991, due to political sensitivities.
"My phone was tapped, they opened my mail, I had spies following me all the time," she says, describing the military dictatorship running Rwanda at that time. "I'd grown up in developing countries, so I was used to an oppressive atmosphere."
'I could hear gunfire'
The small, landlocked country of Rwanda is the most densely populated in Africa. Rwandans share a common culture that is socially differentiated into Tutsis (who traditionally depended upon cows for their livelihood) and Hutus (who farmed for their living). Belgian colonizers exacerbated the division. After the Belgians left, unrest and power struggles between the two groups led to a series of mass killings of the Tutsis. A growing number of Rwandan refugees put pressure on the bordering countries.
As Allen and her staff developed a program to save lives, other forces were mounting a campaign of death. Harrowing messages were broadcast over the radio. "They demonized the Tutsis, calling them cockroaches and saying they must be wiped off the earth," says Allen, who banned the radio from the office.
Against this ominous backdrop, Allen continued her work and started a family. Although she had not found a life partner, she wanted children, and had two sons with an American biologist living in Rwanda. In April of 1994, she traveled to Zambia to set up another research project. She was five months pregnant with Kieran and left 13-month-old Ryan with his father in Kigali.
"I got a fax telling me that the [Rwandan] president's plane had been shot down and that things were really bad," Allen recalls. Rwanda closed its airports as the genocide of an estimated 800,000 to 1 million people began.
Allen managed to reach Ryan's father by phone. "I could hear gunfire in the background," she says. "He was sobbing and said, 'I don't think we're going to make it out of here alive.'"
Days later, Allen was reunited with her son and his father, who made it out of Rwanda via an overland route. In August, she returned alone to Kigali to learn the fate of her colleagues. About half of the staff of 70 had been murdered. Many of the survivors were grieving for lost family members.
Allen needed a break. After eight years of making her home in Rwanda, she returned to the U.S. to pursue an M.P.H. at the University of California at Berkeley. She still traveled to Africa to keep the research program going.
"I had a lot of survivor's guilt," Allen says. A counselor at Berkeley who had worked with Holocaust survivors helped her stay sane.
Threatened by war
Her research had expanded to Zambia, where Allen received death threats from Rwandan refugees who had been involved in the 1994 genocide. For a while, she carried a gun when she visited Zambia. Many of the top commanders responsible for the Rwandan atrocity are now living in other African countries, as well as in Europe and the United States, she says.
In 1996, she joined the University of Alabama at Birmingham, where she met and married Eric Hunter, who was then director of UAB's Center for AIDS Research (Hunter is currently a researcher with the Emory Vaccine Center.) "He's a unique guy," Allen says. "That's a lot to take on: a single mother with two toddlers, who has been threatened by war criminals. He listened to me and didn't think I was crazy. And he wasn't afraid."
Allen visits Africa for three months each year, relying on local staff and more than a dozen Emory interns to carry out the day-to-day research in Rwanda and Zambia. In Kigali, the same Jeep that Allen bought second-hand in 1986 is kept running by a driver who doubles as a mechanic. The director of the Rwandan team, Etienne Karita, lost most of his family in 1994, but he has managed to keep the project operating.
"He's the embodiment of courage to me," Allen says.
"It makes me realize how lucky I am to have had this career," she adds. "I have lost a lot of friends to AIDS and genocide, but our project has also saved lives. It's definitely been worth it."