How Building Community Trust Can Help Fight Ebola in the Democratic Republic of Congo
When an Ebola outbreak was declared in the eastern part of the Democratic Republic of Congo last August, there were reasons to believe it would be different this time around. Since the virus swept through West Africa from 2014 to 2016, a vaccine that appears to be effective has been developed, and four experimental treatments have become available. Another recent outbreak in the northwest part of Congo had been stamped out within a couple of months.
But though this was Congo’s tenth Ebola outbreak, it was the first time the virus hit the North Kivu and Ituri provinces — regions that have seen decades of conflict. There, dozens of armed groups battle government security forces and each other, and more than one million people are estimated to be displaced.
That tumult has led to a distrust in the national government and outsiders, which posed unique challenges for the World Health Organization and Congo’s Health Ministry — the leaders of the country’s Ebola response.
A survey carried out in the early months of the outbreak by Harvard Medical School found that 45 percent of the people surveyed thought Ebola did not exist, or that it was being fabricated to destabilize the region or for financial gain. Phuong Pham, one of the researchers, said the team had seen declines in trust in institutions, especially the government, even before the outbreak.
“The timing [of the outbreak] was just so poor,” Pham said. “It happened just a couple of months before the elections, and it really gave some political tools to some of the actors there.”
The government’s decision in December to postpone presidential elections in areas hit by Ebola, which are also known as opposition strongholds, fueled suspicions that the outbreak was being used for political purposes.
“Late last year, when the elections were postponed, I think that was the first time we started to get insecurity specifically targeting Ebola,” Michelle Gayer, senior director of emergency health at the International Rescue Committee, told FRONTLINE. “They connected politics with the Ebola response.”
Protesters angry about the election delays set fire to parts of an Ebola triage center the day after the announcement. Violent attacks targeting Ebola facilities and health workers have become a worrying and near constant feature of this outbreak.
“Ebola responders are increasingly being seen as the enemy,” Joanne Liu, president of Doctors Without Borders, said in March.
Groups leading response efforts cited community mistrust as one of the factors making it more difficult stop the epidemic. Monitoring those who have come in contact with people with Ebola has become more difficult. And the Harvard Medical School survey found that people who have lower trust in institutions and believe misinformation about the virus are less likely to seek treatment in hospitals or Ebola treatment centers and less likely to accept the vaccine.
“It’s a population and area that’s been affected by conflict for a number of decades,” AnneMarie Pegg, clinical lead for epidemic response and vaccination at Doctors Without Borders, told FRONTLINE. “A good portion of the population doesn’t have confidence in state institutions. As the Ebola response represents a state institution, that’s certainly been a source of difficulty in terms of managing the response.”
In July, Congo’s new president, Felix Tshisekedi, announced that the Ebola response would no longer be led by the health ministry, but instead be overseen by a team led by veteran virologist Jean-Jacques Muyembe, who would report directly to the president. Muyembe, whom Science Magazine described as “the first virologist to ever see an Ebola patient,” told the publication that he plans to win back trust by relying more on locals and less on people from Congo’s capital and abroad.
More than a year on, this outbreak is the second deadliest ever and shows no signs of ending soon. As of today, more than 2,600 cases have been confirmed, and more than 1,800 people have died of Ebola. International organizations working on the ground have focused on building community trust as the outbreak has worn on.
‘Face-to-face and decentralized’ dialogue with the community
The International Rescue Committee focuses on helping Congolese health care facilities with infection prevention and control, training health care workers, and providing personal protective equipment and other supplies. However, Gayer said, it isn’t as simple as offering supplies and knowledge. “You can’t work in a health care facility and do a medical response, you actually have to combine it with community engagement,” she said.
Gayer said that community engagement has to be “face-to-face and decentralized” rather than “top-down.” The IRC has specifically focused on engaging with women, young people and community leaders. Women, Gayer pointed out, make up a disproportionate number of cases in this outbreak. According to the latest figures, 56 percent of Ebola cases were women and nearly 30 percent were children younger than 18. The organization has worked to tailor their communication to those groups. For example, women tend to have specific questions about how the virus complicates things like breastfeeding, water for baptisms and riding behind someone who might have Ebola on motorbikes.
“People have different levels of understanding of things,” Gayer said. “They have different concerns. Rather than transmitting a message, it’s about a dialogue and addressing their needs.”
Providing treatment for Ebola while addressing other needs
In an area that faces many hardships — including the proliferation of several other life-threatening illnesses — the money and resources poured into the Ebola response has aroused suspicion and resentment.
“Ebola has hit the region quite hard, and certainly just under 2,000 deaths is not a small number, but more people have died of measles in Congo than Ebola this year,” Pegg said.
Between January and July, there were 137,000 cases of measles and more than 2,500 deaths in Congo, according to WHO. Pegg noted that they’re also dealing with malaria, upper respiratory illnesses and malnutrition. “It’s frustrating and confusing for people to see the amount of resources poured into one illness,” she said.
Ebola is rare, and its early symptoms are very similar to diseases that are much more common in the region, Pegg said, making it harder for health care workers to diagnose them. When people do go to Ebola treatment centers, she noted that 90 percent of the time, “they leave with a diagnosis of ‘Congratulations, you don’t have Ebola.’ But they’re still sick, because they sought care.”
Over the past six months, she said Doctors Without Borders has tried to incorporate the isolation and diagnosis of Ebola patients into the existing health care system, so that people can start receiving care for their symptoms while they wait to hear whether they’ve tested positive for Ebola or not. This could also assuage any hesitance to go to Ebola treatment centers, which Pegg said “unfortunately have quite a bad reputation as places where you don’t receive very much care, and in many cases, go to die.” People wary of seeking care at Ebola treatment centers arrive too late, lowering their chances of survival and perpetuating a negative image.
Doctors Without Borders’ recent approach is also meant to strengthen the capacity of existing health care facilities, which have been understaffed and under-resourced. “Rather than build a transit center to house basically hundreds and thousands of Ebola patients over ‘x’ period of time, those financial and material resources, in infection control equipment, in cleaning supplies, in training and in actual extra stuff, can be invested in existing health care facilities,” Pegg said. That would help reduce the risk of transmission of not just Ebola, but other illnesses like multi-drug resistant infections, HIV, hepatitis C.
In the process of setting up systems that would allow them to handle diagnosis and isolation of Ebola patients in health care facilities, Doctors Without Borders also learned some lessons, she said. People reacted negatively to orange fencing and tents, which were now associated with the Ebola response.
There is reason to believe that the new approaches are working. The visitation rate at a hospital in Lubero is increasing, and at four health centers in Beni — where Doctors Without Borders previously saw drops in visits after setting up isolation areas to handle Ebola cases — it is holding steady.
Listening to community feedback and making changes
During this outbreak, the International Federation of the Red Cross and Red Crescent Societies has focused on another important aspect of controlling the spread of Ebola: safe and dignified burials.
The body of someone who died from Ebola remains highly contagious, and burial teams are trained and equipped with specialized gear in order to safely carry out burials and decrease the risk of infection.
“It’s incredibly difficult to explain to families who’ve just lost a loved one that they cannot bury their family member or their friend in a traditional way, and that there are certain reasons for doing that,” Eva Erlach, a community engagement and accountability delegate based in IFRC’s regional office in Nairobi, Kenya, told FRONTLINE.
Erlach said IFRC works with local volunteers to help gain an understanding of what the communities are thinking. Early in the outbreak, the organization set up a community feedback mechanism through which volunteers collected information that helped IFRC know which rumors and questions were circulating and allowed them to adjust their messages accordingly. Erlach said they’ve recorded and analyzed more than 300,000 comments from communities, with the help of the U.S. Centers for Disease Control and Prevention.
Last October and November, Erlach said IFRC received a lot of rumors around the burials — that it wasn’t really people who were being buried, that bodies were being sold, that organs were being removed. In reaction to this feedback, Erlach said, “We decided to purchase body bags with windows that are transparent so one can actually see the person inside.”
Community feedback also led to another big decision, Erlach said, with the IFRC working with communities to train and equip community members to carry out the burials themselves in very specific high-risk instances, where it wasn’t possible for IFRC teams or civil protection teams to carry them out. Erlach calls it a “last resort.”
“We can only create trust by showing communities what their role in the response is, by using local capacity and by responding to their feedback and their suggestions,” she said.
As the outbreak entered its second year, Gayer of IRC said, “We were really hoping it would cease transmission by now. We knew it was a difficult area, but we didn’t expect it to go on for so long.”
“The fact that it’s spread to Uganda, has crossed the border, and now that we’ve got cases and definite transmission within Goma itself is a dangerous sign. We really need to work on community engagement and we really need to continue responding for as long as it takes.”