Stopping Ebola is not just about providing information, vaccine and treatment. It’s about gaining the trust of people with good reason to be wary.
He soon learned more than he ever wanted to know. After taking an infected person — one of the city’s first cases — to a health clinic on his motorcycle, he was quickly identified as a ‘contact’, someone who was in close proximity to a person with Ebola.
Health workers tracked him down and asked him to come to the closest Ebola clinic for tests. As he waited for results, his dread increased. “I had heard many rumors about how those who left for the Ebola treatment center died,” he said later. “So I fled the centre and went back home”.
Hiding in a small studio next to his family home, he began to feel the symptoms. Headache. Fever. Vomiting. Machozi’s mother finally convinced him to return to the centre where he was ultimately cured.
As harrowing as it is, Machozi’s story is not unusual. Amid the violence, political turmoil and insecurity of North Kivu province, a combination of fear, mistrust, rumours and some very hard truths — a majority of people infected with Ebola do not survive — have led many to resist treatment or other measures aimed at preventing the disease’s spread.
“People are scared and they have very good reason to be,” says Gwendolen Eamer, senior officer for public health in emergencies for the International Federation of Red Cross Red Crescent Societies (IFRC). “Ebola is a very scary disease.”
In the meantime, the conflict that grips North Kivu — involving multiple armed groups, government forces and United Nations peacekeepers — continues to result in civilian deaths, both in cities such as Beni and Butembo and in remote rural villages.
“We live under one fear that adds to another,” says Euloge, a nurse at a private health center in Beni. “In the east you face machetes and in the west, where we were supposed to flee, now there’s this disease”.
The conflict has created a perfect storm for the spread of Ebola. The frequent attacks, often occurring directly in Ebola hotspots, result in sudden displacement of thousands of people. Meanwhile, the maps used by relief workers are marked with numerous ‘red zones’, places where medical and aid workers cannot go due to fighting. At various times since the outbreak began, major aid groups have suspended operations in North Kivu.
“It’s a war zone,” says Nicolas Lambert, deputy head of delegation and head of Ebola response task force for the ICRC in the Democratic Republic of the Congo. “Attacks between armed actors happen frequently. People in the communities are killed and there are days of tensions and protests in which people express anger at the lack of protection.”
Those attacks and protests often put a halt to the Ebola response as movement in certain areas becomes too dangerous. National elections in December only added to the tension. To navigate this fractious climate, the International Red Cross and Red Crescent Movement (Movement) relies on its Fundamental Principles — neutrality, impartiality, humanity and independence — to assure people that it is there to help vulnerable people, not take sides in the fighting. For that reason, Red Cross personnel never travel with military or police protection, nor travel in or with United Nations or government aid convoys.
Confronted by rumors
While many people in the communities torn by conflict and Ebola know and trust the Red Cross, due to its long-time presence providing a wide range of services, many others distrust anyone associated with the Ebola response. At the same time, a host of common rumors and beliefs have taken hold in many communities: Ebola is a scam invented by international NGOs to make money. The diseases is the result of witchcraft. The Ebola vaccine contains poison. Health workers steal organs from the dead. Ebola isn’t even real, it’s just fake news.
This distrust has potentially fatal consequences. Some communities have rejected the help of volunteers who have come to bury deceased people — who remain highly infectious just after death — in a safe and dignified manner. Suspicion of aid workers has at times led to verbal abuse, threatening gestures, even violence against Red Cross workers.
Why such a level of distrust? In North Kivu, Ebola has taken hold where health and education systems are either weak or non-existent and where people have suffered horribly due to relentless violence without much notice from the outside world. Suddenly, at the arrival of Ebola, hundreds of international aid workers show up, filling the hotels and driving four-wheel drive jeeps.
“People are asking ‘Why are all these people are here?’”, says Eloisa Miranda, who coordinated ICRC’s ground operations in North Kivu until February 2019. “’Why from one day to the next did everybody become interested in us when before this, there was no one — despite the fact that we had enormous needs.’ ”
At the same time, the response to Ebola can be incredibly scary. When someone is reported to have died from Ebola, family members are visited by Safe and Dignified Burial teams made up of people covered head to toe in protective clothing. “You are coming in to someone’s home dressed in something that looks like a space suit — it is a very emotional thing,” says Jamie LeSueur, IFRC’s head of Ebola response operation in the DRC.
As part of their work, the teams must disinfect the corpse, then put the deceased in a body bag and bury the body. This work is absolutely critical in the effort to stop Ebola, but if not done with sensitivity, people may reject it entirely. LeSueur says great pains are being taken to gain people’s acceptance by allowing family or even community involvement and observation.
“We don’t go into a community and take a body,” he says. “We work with a community to make sure that they understand why we are there, what we are doing, why our teams are dressed that way and why we are doing this with the body of their loved one.”
The International Red Cross and Red Crescent Movement is also engaged in intensive community awareness raising efforts. The Red Cross of the Democratic Republic of the Congo the ICRC and the IFRC have organized hundreds of community meetings and reached out to religious, youth and community leaders who can influence local opinion. Red Cross volunteers also go door-to-door to better understand people’s concerns, reminding people about the Red Cross and showing them how to protect themselves from Ebola.
“Tackling community mistrust is the only way we can carry out our response,” LeSueur says. “Community acceptance is our security. So we have to consistently engage with communities to ensure that we can gain acceptance and trust so we can access the people who are most vulnerable.”
The bulk of the trust building falls on the shoulders of local volunteers of the Red Cross of the DRC who are known in their communities, understand local concerns as well as the trauma people in the area have been through.
“I got goosebumps when I first heard [of Ebola],” says Adeline, a Red Cross volunteer of 17 years who now leads the Red Cross’ safe and dignified burial teams in Beni. “There are ten, five deaths at a time. That made me so scared because it reminded me of the massacres.”
Others, like Deborah, are specifically trained in “community engagement and accountability,” in which volunteers gather information on people’s concerns and raise awareness about Ebola by going door-to-door, organizing community education sessions, speaking on local radio shows or producing street theatre performances.
Knowledge and trust are critical, she says, because with Ebola, every second counts. “The virus is really dangerous and can be misleading as its symptoms mimic those of malaria, typhoid or cholera,” Deborah says. “Ebola spreads because people who’re infected don’t seek treatment and some even go into hiding.”
Community engagement does not pay off overnight. It takes time. LeSueur says there’s evidence that community resistance has ebbed somewhat even in some hotspots. But there’s still a lot of work to be done.
Despite the outreach efforts, the risk of being attacked, stoned or chased away way, remain quite high and this means people still don’t know enough about how to protect themselves from Ebola. “All this distrust contributes to feeds a vicious cycle that perpetuates the disease and the frustration of the people,” says the ICRC’s Miranda.
Given this level of mistrust, along with lack of access to areas of violence, even the emergence of vaccine (which has shown to be effective in trial and is being offered to anyone who has been in contact with an Ebola victim) does not guarantee success, notes Florent Del Pinto, who served as head of Ebola operations the IFRC for both Ebola outbreaks in the DRC in 2018. “In one area, we had new Ebola cases and some vaccinators were sent. By the time they got there, the whole village was deserted.”
This response may seem odd to some, but it makes perfect sense given that in many places in the DRC, the arrival of strangers in cars often spells danger. “Distrust is a survival mechanism,” notes the IFRC’s Eamer. “You listen to what people are saying and if something is happening, you drop everything and flee. It’s a very rational behavior. It has kept many people alive.”