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 recentstudy,
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.”
By Emily Baumgaertnere
Source: http://pulitzercenter.org/
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