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Social stigma means surviving Ebola is not the end of patients’ suffering

Ebola
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Health care workers go through a simulation of how to treat Ebola.
(WF Sihardian/Anadolu Agency/Getty Images)
Health care workers go through a simulation of how to treat Ebola.
The people in Guinea lucky enough to recover from Ebola face the gruelling task of re-entering society. Having survived the horrors of the disease they are now being ostracised from their communities.
J ust a few months ago, people would queue outside the shop of Jean Segbé Bavogui, 41, a tailor in Banizé, a neighborhood outside the Guinea town of Macenta. But the small workshop is now empty. Bavogui hasn't seen any clients or received any orders for over a month. Even the well outside his door where his neighbors used to collect water has been deserted. This is all because Bavogui is an Ebola survivor, which makes him a damned man in the eyes of his community.
Bavogui was infected by his wife Jeanne, becoming sick on Sept. 28 just as his wife was being released from the hospital — cured. As soon as the first symptoms appeared, he rushed to the treatment center in Guéckédou, which is run by Doctors Without Borders, before going through the living hell that the disease creates for patients: vomiting, diarrhea, fever and bleeding.
"I thought I was going to die," he says. "Three other patients in my room passed away. I wanted to call my brother, who was taking care of my children, to tell them goodbye."
The tailor is among the lucky ones. Between 50% and 80% of those infected die from the virus — 1,192 patients of the 1,971 infected since the beginning of the outbreak in March, according to the Guinean Health Ministry. Doctors declared Bavogui "healthy" Oct. 5 and gave him a certificate to confirm he was cured and carried an immunity against the virus.
NOTE
US President Barack Obama has called upon Congress to approve $6.18 billion in additional aid. Mr. Obama said: “We cannot beat Ebola without more funding. If we want other countries to step up, we are going to have to lead the way.”
When he returned home to his wife with his "release certificate," the neighbors had moved away. Other people in the neighborhood now greet him only from a distance, when they don't turn away from him entirely. Today, the tailor works with his wife at a nursery where Ebola patients send their children. Like him, a handful of survivors participate in Ebola-related humanitarian aid work.

 A double hell 

"Even with the certificate, I see mothers, cured, forced to leave their homes with their children, thrown out by their own husbands who, when they have another wife and other children, don't want to take any risks," explains Dr. Abdul Fadiya, who works for UNICEF.
In the region, where the epidemic started in March 2014, almost 80% of the population is illiterate. And for months, people in villages have been saying that nobody ever comes out alive from treatment centers. The authorities accuse community leaders of spreading the worst rumors about the disease.
"If you tell these people that coal is white, they'll say it's white," says Sékou, a teacher and a cured patient himself. "If you tell them to attack, they'll attack. So when somebody who was infected comes back, if the village leader doesn't help that person, they don't belong there anymore."
It doesn't help that survivors appear ravaged. In the vast majority of cases, patients return weakened, exhausted, leaner and in pain. "In Balisia, a 13-year-old boy was cured but remained so weak that his mother wasn't sure he had recovered," explains pastor Jérémy Boré. "I told her that his fatigue was normal and that he should be well fed and eat fruits." A few days later, the boy was able to go outside and play soccer with his friends.
Curing patients is no longer enough. Overwhelmed by the urgency to take care of the sick, aid organizations have had to learn to handle the return of cured patients after their communities reject them. UNICEF, Doctors Without Borders or the Red Cross now allocate means especially for this mission. The World Food Programme gives supplies of rice, oil, salt and lentils to villages that have had at least five cases of Ebola.
The treatment center in Guéckédou now provides Ebola survivors with hotel rooms and meals. It was also necessary to raise awareness among bus drivers to prevent cured patients from being barred from public transport. "But in bush taxis, other passengers refuse to travel with them, so they have to pay alone for the journey, and it's too expensive," says Pascal Piguet, a Doctors Without Borders official in Guéckédou.

 Is relapse possible? 

Over the past few days, the return of cured Ebola patients has been dramatically questioned. A woman officially declared "healthy" was released from the treatment center and transported back to her village in Djomba Koidou. But a few days later, new symptoms appeared: She was very tired, which can be easily explained, and her gums were bleeding. The villagers instantly suspected Ebola. The Guinean Red Cross came to get her and, after going through more tests, she was once again declared infected with the virus. She died on Nov. 16. Organizations that were visiting the village the same day had to flee for fear that the population might take them hostage.
This case, the first suspected relapse, is yet another worry for authorities. Until now, the scientific community has claimed that a patient cured from Ebola was immune to the disease and no longer contagious. "It's an exceptional case, and we have to go through the woman's whole file once again," says Saverio Bellizzi, a doctor who specializes in epidemiology for Doctors Without Borders in Macenta. "The virus' location could be out of the ordinary — for example, in a part of the brain more protected against antibodies."
The virus is known for surviving longer in certain areas of the body — testicles, for example — and sperm can still carry it two or three months after a patient is cured. A mistake during the woman's test could also explain the result, but the laboratory that did it in Guéckédou has ruled out that possibility.
"For the first time, we have a large number of Ebola survivors and, more importantly, we are still faced with an active epidemic," says Professor Jean-François Delfraissy, a French immunologist. "We still have a lot to learn. We will be able to study when and how antibodies appear and are active. Cured patients are not a homogenous population. So, did that woman die of the first infection, or was she infected again after she went back home?"
The news, which has been kept quiet, could be a bombshell and make it more difficult for populations to accept the return of survivors. Until the results of the investigation are complete, the rule still stands: In 99.9% of cases, those cured are not infectious and are immune to the virus.
Remi Barroux
Le Monde
04 December 2014 - last edited 04 December 2014