Written by Denise Grady (Steve Wembi contributed reporting from Kinshasa, Democratic Republic of Congo)
The family of a young woman who died from Ebola last month in the Democratic Republic of Congo dressed her body, put makeup on her face and propped her up in a car, hoping to make her look alive so they could drive her through checkpoints set up to prevent spread of the disease.
It was dangerous: Corpses are highly infectious. But they wanted to bury her in another town, next to her husband, who also had died of Ebola. Their desperate ploy failed. They were stopped at a checkpoint, according to a report from the country’s Ministry of Health.
The family’s flight, and apparent lack of understanding that bodily fluids spread the disease, help explain why this Ebola outbreak, in its seventh month, has become the second largest ever. No end is in sight, despite the use of promising antiviral drugs and a vaccine that were not widely available in past epidemics.
There have been 907 cases and 569 deaths attributed to the disease in the war-torn northeastern part of the Democratic Republic of Congo, near borders with Rwanda, South Sudan and Uganda. The region has decent roads and a highly mobile population, experts said, so there is constant concern that the disease will spread to those countries.
More than 80,000 people have been vaccinated, and although hard data is lacking, experts suspect that without the vaccine, the epidemic would have grown much larger.
But efforts to stamp out the disease are failing in some areas because many people still don’t understand Ebola, and also because heavy-handed measures by outside organizations, local police and the military have alienated the communities, officials from aid groups and doctors who have worked in the region said. Fearful of being confined in isolation units, people have avoided testing and treatment. They do not want outside interference in rituals around death and burial.
“Ebola responders are increasingly being seen as the enemy,” Dr. Joanne Liu, president of Doctors Without Borders, said at a news conference in Geneva on Thursday. “In the last month alone there were more than 30 different incidents and attacks against elements of the response.”
“The existing atmosphere can only be described as toxic,” she said.
Some people in the region question why the vaccine is being given only to certain people — including health workers and contacts of patients — and not to everyone, she said. Many wonder why outside aid has flooded in for Ebola, but not for malaria, diarrhea or other common, debilitating diseases that afflict many more people. Some have asked aid workers where they were when militias were carrying out massacres of civilians.
The northeastern part of the country where the epidemic has struck has been a conflict zone for decades, with more than 100 armed groups, as well as security forces posing a constant threat of violence to the population.
Distrust of outsiders is entrenched, and grew in two areas, Beni and Butembo, after the government barred residents there from voting in the long-delayed elections in December, supposedly because of concerns about the spread of Ebola. Many people thought the government had used the disease as an excuse to keep them from voting, and some of their anger turned against the outside groups that had drawn so much attention to Ebola.
Recent attacks on two treatment centers operated by Doctors Without Borders led the group to close them, and brought a scorching and highly unusual self-assessment by Liu, who included her organization among those that had fallen short. She urged medical teams to treat Ebola patients “as humans and not as a biothreat.”
She blamed not the communities, but the responders, for failing to win people’s trust.
“They hear constant advice to wash their hands, but nothing about the lack of soap and water,” Liu said. “They see their relatives sprayed with chlorine and wrapped in plastic bags, buried without ceremony. Then they see their possessions burned.”
In a piercing essay published Thursday in The New England Journal of Medicine, another physician from Doctors Without Borders, Dr. Vinh-Kim Nguyen, wrote: “Early in the epidemic, we witnessed armed agents forcibly bringing patients in for treatment. In a population already traumatized by violence and forceful responses to numerous crises, such tactics fuel distrust of responders, which prompts patients to flee and spawns violence.”
Nguyen also noted that when Ebola teams were accompanied by security forces, they were met with fear and distrust, especially of forced vaccination. But when the security forces were absent, people would actually ask to be vaccinated.
“The lesson is clear: Guns and public health don’t mix,” he wrote.
Liu said aid groups needed to offer help in ways the community would accept, even if it meant helping families to safely care for Ebola patients at home, or giving them information and equipment to carry out safe burials on their own.
The key to stopping past epidemics had been to isolate the sick and track everyone who might have been exposed, until there were no more new cases. But that approach is not succeeding in Congo.
“More than 40 percent of the deaths are right now happening in the community,” outside of treatment centers, Liu said. “That means we have not reached them and they have not sought our care.”
It also means that untold numbers of people around these patients have been exposed and may have contracted the disease.
A spokesman for the World Health Organization, Tarik Jasarevic, confirmed that 40 percent of deaths were occurring in the community.
“But, and this is key, despite these worrying figures, the response has managed to bring the outbreak under control in 10 of 19 affected health zones, where there have not been cases in three weeks or more,” he said in an email. “The incidence numbers have dropped steadily since November. Clearly the response has had traction in these places, despite the challenges of community mistrust engendered by the years of conflict they have endured.”
But he also acknowledged that building trust was an important part of the work to be done.
“In every newly affected town, WHO and partner social scientists and anthropologists work with local leaders to understand the context and tailor the approach to what works,” he said. As an example, he cited Beni, where the community had been hostile, but health workers were able to bring the outbreak under control within weeks.
“Other areas, like Katwa/Butembo continue to be a challenge,” Jasarevic said.
Liu said that about 35 percent of the new cases were in people who were not in known chains of transmission.
“That means we do not know how they got it,” she said.
Jasarevic differed, saying that many infected people were eventually traced back to previously identified chains.
The epidemic continues to smolder, and could still flare more dangerously, said Dr. Daniel G. Bausch, a professor at the London School of Hygiene and Tropical Medicine.
“I don’t think we should be complacent,” he said. “I don’t want to be alarmist, either, but one unlucky event can change everything.” As an example, he cited an infected person carrying the disease to a densely populated area not prepared to deal with it.
Another problem, Liu said, is that some patients do not seek treatment until it is too late to save them.
“Ebola still has the upper hand,” she said.