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Story Publication logo July 13, 2016

Sierra Leone: Ebola Lives on in Survivors' Eyeballs and Testicles

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Ebola survivors could be carrying live Ebola virus in their eyes. Many of them are going blind, but...

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Eye examinations at Kissy Eye Hospital in Freetown. Image by Emily Baumgaertner. Sierra Leone, 2016.

FREETOWN, Sierra Leone—Linda Harding survived Sierra Leone's 1991-2002 civil war and its Ebola epidemic of 2014. She says there's no question which one was worse. With Ebola, one could never be sure who the enemy was. To many in Sierra Leone, the enemy was, and still is, Harding and other Ebola survivors like her.

The 42-year-old Harding is a nurse who, during the epidemic, bravely volunteered to care for hundreds of the country's Ebola patients at a makeshift treatment unit in Freetown, the capital. She contracted the virus tending to a doctor who had himself contracted it from a patient and had started to bleed from the orifices in his face. Two days later, Harding woke up feeling nauseous, with a headache and chills. She packed a plastic bag with a dress and hairbrush and turned herself in to her colleagues.

Harding survived and was declared Ebola-free in December 2014. Despite lingering depression and joint pain common among survivors, she was eager to resume her role as a midwife to friends and neighbors. But when she returned to her village in Waterloo, a city 20 miles southeast of Freetown, she was not given a hero's welcome. Instead, she was shunned, threatened with death, and driven away.

There are at least 17,000 Ebola survivors like Harding in West Africa, and many face this sort of ruthless stigmatization. Since the beginning of the crisis, health professionals have pushed communities to reintegrate survivors. Although many describe lingering symptoms—60 percent have eye inflammation called uveitis, and two-thirds report neurological difficulties like insomnia and memory loss—doctors insisted they were Ebola-free.

But there's now evidence that, when it comes to fear of Ebola survivors at least, the folk wisdom of Sierra Leone may have had it right. No one is advocating for discrimination, of course, but doctors and scientists have determined that some survivors still carry the active virus in the so-called immune-privileged pockets of their bodies—places like the inner eye or testes, where antigens can survive without immune system detection—and could potentially pass it on to others. Survivors, in other words, could potentially be the source of another full-blown outbreak.

For Harding, the discrimination began peripherally. She was banned from using the local water pump, and when she resorted to buying "tourist water," the shopkeeper refused to hand the bottles to her directly, sliding them on the ground instead. Then the harassment became more insistent: Neighbors clapped pots and pans to warn others when the family left the home. Soon, they were receiving death threats.

"They wanted to kill me because of the stigma. They wanted to kill me before I could kill them," Harding said. "We were exiled."

For months after the epidemic began to die down, scientists and health professionals chalked the fearful reaction of communities like Harding's up to ignorance — the paranoid reflex of poor and superstitious people who had just endured a great trauma. Now they are discovering an uncomfortable truth: The fear was likely rooted, however unconsciously, in science.

Consider what happened to Ian Crozier, an American physician who contracted Ebola while volunteering for the World Health Organization in Sierra Leone and was declared virus-free on Oct. 19, 2014. Two months later—while advocacy groups across West Africa were working overtime to educate the public about the supposed harmlessness of survivors—Crozier was experiencing severe eye pain. Doctors withdrew fluid from his inner eye chamber and were shocked by what they found: a viral load higher than what they had registered in his blood at the height of his infection. The inner eye, the incident proved, is an immune-privileged pocket.

Researchers have since discovered the live virus in the cerebrospinal fluid of a survivor who had previously been declared Ebola-free. Unless a survivor is operated on, Ebola is unlikely to escape these immune-privileged pockets and make it to the outside world. But there are more accessible areas of the body where the virus can live on undetected. Complications in Ebola survivors' pregnancies and their newborns have prompted some experts to postulate that the virus can survive in breast milk and the placenta.

Likewise, another study conducted in Sierra Leone and published by the New England Journal of Medicine demonstrated that the testes are immune-privileged as well. The virus can persist in the semen of male survivors for at least nine months and, when transmitted to sexual partners, has sparked acute Ebola cases.

"Is it valid to talk about endemic Ebola? Some people do go ahead and talk about it that way," said Mauricio Calderon, the team leader on Sierra Leone's Ebola survivor research for WHO. "Whether you like the word or you don't, you have thousands of people, a portion of whom have a chance of having persistent virus in them. So the plot thickens, right?"

The fear that survivors might unwittingly set off another deadly epidemic has been heightened by recent studies suggesting many more people may have contracted the virus than previously thought. One recent study, presented by Stanford University's Eugene Richardson at a special Ebola session at the Conference on Retroviruses and Opportunistic Infections in Boston in late February, suggests that tens of thousands of people who came into close contact with Ebola patients may have contracted the virus without ever realizing it.

Richardson's team had initially set out to determine how many Ebola survivors in one severely affected village in Sierra Leone had gone unaccounted for. Given the number of Ebola victims who were never admitted to a health care facility (either because they didn't trust hospitals or because they died before arriving), Richardson assumed the count of 28,000 West African Ebola cases—roughly 17,000 of whom survived—was hugely underestimated.

But after testing village residents' blood for Ebola antibodies, Richardson's team found that 29 percent of people who appeared to have had the virus hadn't just gone undiagnosed—they had never experienced any symptoms. And although the findings from such a small village can't be extrapolated out to an estimate for the entire outbreak, Richardson said they're comparable to the results of other recent studies. In fact, 29 percent is among the lowest estimates for the rate of asymptomatic Ebola cases. Other studies have put the rate at as high as 70 percent.

"My conservative estimate would be that there were at least 50,000 [symptomatic] cases, and if you add another 29 percent for asymptomatic infections, it's reasonable to say it could even be up to, say, 65,000 transmission episodes," Richardson said.

Researchers are now debating whether asymptomatic Ebola survivors could also be carrying the active virus. Richardson argues we can't assume asymptomatic cases are "a dead end" to transmission, especially because male survivors who infected their sexual partners were typically asymptomatic at the time of transmission. Until persistence in asymptomatic survivors is proved one way or the other, those who came in close contact with Ebola patients—people like Harding's daughters, both of whom were expelled from school when their parents' status as survivors became known—could be considered potential vectors.

Still, Richardson argues they should not be viewed as threats—and certainly not stigmatized the way many survivors have been. While he's interested "from a virology standpoint" in finding out whether asymptomatic people can harbor the persistent virus, he said, "From a public health standpoint, it's not worth saying, 'We could have silent spreaders out there!' Even when I bring it up in a scientific conference as a virological question worth answering, there are a certain number of people that get offended because it's going to cause alarm and stigma for all close contacts. And there was a lot of hysteria, a lot of mistrust—I understand where they're coming from."

Researchers say they have been here before. In the 1980s, many of the same people who are studying Ebola today were baffled by the mystery of HIV/AIDS. What they came to understand about that viral epidemic is now informing their understanding of the Ebola virus' pathology. For example, the discovery that some HIV symptoms are caused by the immune system's response to the infection, rather than a direct result of the virus' assault, has helped scientists understand some aspects of the post-Ebola syndrome.

But perhaps the clearest echo between the two epidemics is that early on researchers didn't know enough to calm the public. Just as scientists didn't rule out the possibility that HIV might be transmitted through saliva early on in that epidemic, today they can't, with absolute certainty, dismiss fears that survivors might trigger another Ebola outbreak. In fact, today's limited Ebola pathology evidence—suggesting sexual transmission, patient-to-surgeon transmission, and perhaps even mother-to-child transmission­­—looks eerily familiar. So does the stigma.

"This is not the first time that societies are confronted with this problem. We're not inventing anything new," said WHO's Calderon. "Look at what societies have learned—that people carrying a virus like HIV can be members of the community. Those same types of lessons are to be disciplined for the current condition."

But scientists admit that Ebola stigma may be even harder to combat than HIV stigma, since the stakes are higher—at least in the short term. When a person living with HIV infects a sexual partner, the virus isn't unleashed out into the population via sweat, tears, and vomit, with the ability to kill others quickly. Though such a scenario is unlikely with sexually transmitted Ebola, it is technically possible.

"For me, Ebola is not over. It isn't. What we need to learn to do is not only to live with what happened, but also to live with what is left," Calderon said. "People are suffering because of the persistence of either the virus or the fear of it. What has been interrupted is the transmission chain in the community. That part of the war is over. But Ebola is still there."



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