For Ebola patients who end up in Western hospitals, it’s hard to remain anonymous. As a story in this week’s special issue on privacy shows, public health fears often trample privacy concerns during disease outbreaks, and the media’s curiosity is relentless.
But one Ebola patient who had a brush with fame has held on to her anonymity. The only Ebola case ever recorded in West Africa before the current outbreak, she is simply described in four scientific papers as a 34-year-old woman who contracted the disease in 1994 while working as a chimpanzee researcher in the Taï National Park in Ivory Coast. She was evacuated to Switzerland for treatment.
The researcher has never before spoken to the press, but she agreed to discuss her thoughts with ScienceInsider about the importance of privacy and why, to this day, she does not want her name publicly known in relation to Ebola. “I don’t want it to be my claim to fame,” she says. “It seems wrong.”
The woman’s case did receive substantial media attention. Not only were the circumstances of her infection dramatic and somewhat bizarre, but her case also provided the first strong evidence that the Ebola virus naturally infected chimpanzees and suggested that the virus might be devastating both chimp and gorilla populations. Some stories also questioned the risks her Swiss medical team took by caring for her.
The researcher, an ethologist, worked in the forest studying a community of chimpanzees that her adviser, Christophe Boesch of the University of Basel in Switzerland, had followed since 1976. Although the chimps had been “habituated” to humans, the researchers made a point of staying at least 3 meters away. They knew the histories and habits of individuals, and when a 4-year-old female lost her mother and became lethargic, the team took notice. “That was the only time I broke into tears when I was in the forest,” says the ethologist, who thought the chimp was depressed. “It wasn’t clear to me that she was ill.”
Two days later, the researchers found the chimp’s dead body and carted it back to their field station to conduct a necropsy.
The woman was one of three people who dissected the chimp on 16 November 1994. She wore “household” gloves while the other two had gloves made of latex. No one donned masks or gowns, and it never crossed their minds that the animal might have died from Ebola. “We were more worried that we had introduced an illness into the chimpanzee community,” she says.
Eight days later, she developed a fever and began losing her appetite; a colleague finished her dinner. She suspected she had malaria, but antimalaria drugs did nothing. After 3 days had passed, she was driven to a hospital 600 kilometers away in Abidjan, where a friend stayed in her room to keep her company. Her condition continued to deteriorate with classic Ebola symptoms kicking in: diarrhea, vomiting, rash, and confusion. But she was not hemorrhaging, which then was the telltale sign of the disease.
No one at the hospital suggested testing for Ebola. “Nobody suspected it,” she says. “They immediately thought I had malaria. At one point my temperature went down and they said, ‘See, we told you.’ ”
Her boyfriend phoned from Europe and asked if he should fly over. “I said, ‘It would be nice to see each other one more time,’ ” she recalls.
Instead, a Swiss Air Ambulance jet transported her to Basel, where she received treatment in a negative pressure isolation room at the University Hospital Basel. Her caregivers wore gowns, gloves, and masks, but not the type of personal protective gear now used in Ebola treatment units. Fifteen days after she fell ill, the hospital discharged her, and a month later, she returned to Ivory Coast to continue her research. “I felt like I had abandoned my colleagues and I went back as quickly as I could,” she says.
She did not learn what had caused her illness until February 1995—and it was detected somewhat by happenstance. During the fall that she became ill, eight of the 43 chimpanzees her team had been following died, and four others disappeared. Boesch enlisted the help of virologists in France to study blood taken from three living chimpanzees (they tranquilized them with darts), as well as tissue from the animal she necropsied and one other that had died. The lab also analyzed the blood from the researchers who conducted the necropsies, which led to the isolation of Ebola virus from her sample. “I had no idea about Ebola,” she says. “I became aware by reading a few articles that we could have really been the origin of something big.”
In the wake of her belated diagnosis, 74 people she had come in contact with during her illness received Ebola antibody tests. None, including the two workers she did the necropsy with, had a positive result. “Imagine if I had been contagious,” she says. “No, don’t imagine.”
Even though she was in a remote locale with no telephone, journalists soon started contacting her. “A lab person leaked my name,” she says. “I got the strangest of letters in the Taï Forest.” Media requests intensified that May when a large outbreak of Ebola surfaced in Kikwit, in what is now the Democratic Republic of the Congo, and European journalists who covered it wanted to make a stop in Ivory Coast to meet with her. “I thought it was ridiculous that people wanted to come and interview me on the way home from the Congo,” she says. A German TV station even offered to fly her in for the taping of a show. “I was kind of disgusted by the whole thing.”
Although a few journalists knew her name, she is grateful that none ever made it public—now more so than ever given the mini–celebrity status heaped upon Kent Brantly, Nina Pham, Craig Spencer, Thomas Duncan, Nancy Writebol, William Pooley, and others during the recent West African epidemic. “I find it shocking the way the press put people out there right away and you’re practically in bed with them,” she says. “I’m not sure what that does for you, but I suspect it’s not very good. They’re victims in a sense.”
Aside from the personal toll it may have taken had her name become public, stories like hers, she says, distort reality. “People are getting all this media attention because they caught a virus,” she says. “I was ill for 2 weeks—and I was really ill—but there are so many people who suffer so much more and one would not think to write about them.”
For more on privacy and to take a quiz on your own privacy IQ, see “The end of privacy” special section in this week’s issue of Science.
*The Ebola Files: Given the current Ebola outbreak, unprecedented in terms of number of people killed and rapid geographic spread, Science and Science Translational Medicinehave made a collection of research and news articles on the viral disease freely available to researchers and the general public.
First published here: sciencemag.org