When trust means life or death

SPECIAL | Trust

When trust means life or death

Stopping Ebola virus disease is not just about providing information, vaccine and treatment. It’s about gaining the trust of people with good reason to be wary.

Reporting:
Red Cross Red Crescent
magazine Staff
and Fiston Mahamba

Photos
Paulin Bashengezi/ICRC

Like many people in the city of Butembo, 25-year-old carpenter Machozi had not heard much about Ebola virus disease before November last year. Up to then, the epidemic had spared the city of roughly 1 million people in the north-eastern corner of the Democratic Republic of the Congo (DRC).

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 rumours about how those who left for the Ebola treatment centre 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 IFRC. “Ebola is a very scary disease.”

I had heard many rumours about how those who left for the Ebola treatment centre died. So I fled the centre and went back home.

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 centre 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.

To navigate this fractious climate, the International Red Cross and Red Crescent Movement (Movement) relies on four of 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, Movement personnel never travel with military or police protection, nor travel in or with United Nations or government aid convoys.

Just as importantly, the Movement has been at the forefront of efforts to develop better systems — put into action largely by National Society volunteers — to better listen to, track, analyze and respond to community needs and concerns.

25-year-old Machozi is back to work as a carpenter after surviving Ebola virus disease. Now he helps spread the word that Ebola is real and can be prevented and cured.

Confronted by rumours

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 rumours and beliefs have taken hold in many communities: Ebola is a scam invented by international non-governmental organizations to make money. The disease 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 here?’,” says Eloisa Miranda, who coordinated the ICRC’s ground operations in North Kivu until February 2019. “And, ‘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 into someone’s home dressed in something that looks like a space suit — it is a very emotional thing,” says Jamie LeSueur, who served as IFRC’s head of Ebola response operation in the DRC for much of 2019.

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.”

ICRC

Getting feedback

The International Red Cross and Red Crescent Movement is also engaged in intensive community awareness-raising efforts. The Red Cross of the DRC, 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 (see sidebar, ‘In their shoes,’ page 7) to better understand people’s concerns, reminding people about the Red Cross and showing them how to protect themselves from Ebola.

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 and understand local concerns and the trauma people in the area have been through.

“I got goosebumps when I first heard [of Ebola],” says Adeline, a Red Cross volunteer for 17 years who now leads the Red Cross’s 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 are infected don’t seek treatment and some even go into hiding.”

Given this level of mistrust, along with lack of access to areas of violence, even the emergence of vaccine and new treatments that have proven to be effective do not guarantee success.
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 behaviour. It has kept many people alive.”

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