Ebola in DRC: Prof Pierre Akilimali on the human cost of the outbreak

The statistics, says the man responsible for overseeing the Ebola response in the Democratic Republic of the Congo (DRC), are meaningless. That it is now the largest outbreak, the most deadly strain, that 100 days have passed, that the death rates keep climbing, says Prof Pierre Akilimali, should never detract from the human tragedies at the centre of this virus.

“It is behind those numbers that matters; it is the father, the child, the loved relative. Behind every case is a person and behind every person is a family. For us Congolese, we hold on to that as we work.”

But Akilimali, of the DRC’s National Public Health Institute, and now the incident manager of the country’s multi-agency response, is certain that those numbers will keep on sharply rising. As of 24 August, the Bundibugyo variant of the virus had 5,656 confirmed cases and 2,715 deaths.

“Let’s say in two months we will reach the peak and start seeing a decrease, but this is guesswork,” he says. “The honest thing is that we do not yet know.

“What I can say is that as we are improving community engagement we expect to have more confirmed cases, so we need to be sure that treatment centres are able to cope with those increased numbers.”

Akilimali, like most Congolese health workers involved in the Ebola response since the outbreak was first officially declared in May, has been working flat out. He speaks to the Guardian on a rare day off, his first in months, but has to delay the interview several times to take urgent, work-related calls. “Rest is not an easy thing for the Ebola workers to find,” the doctor says.

“Many of my colleagues have been away from their own families for long periods; I do not dwell on it in the daily work, but I would not be honest if I said it was not heavy, to watch the human cost mount, case by case, and to know that behind each number is a family.

“What carries me and the team is the simple knowledge that every contact followed, every family supported, is a life where the worst was avoided.”

Concern has been high particularly over the risk of the virus crossing borders – Uganda has just been declared free of Ebola after several cases emerged there – but efforts seem to have contained the spread.

That brings little comfort, however, for the people of eastern DRC, a region exhausted by years of war, neglect, resource-stripping and underdevelopment, where this is the 17th outbreak since Ebola was first identified in 1976.

As the virus is transmitted from animals to people, Ebola usually begins in remote areas where people and wildlife live closer together and where health authorities have few outposts.

People here, where militias and bandits keep nerves frayed, are suspicious and distrustful. There have been attacks on clinics, and on healthcare and burial workers.

“I’d put it this way,” says Akilimali. “The DRC has lived through repeated outbreaks, and communities have lived through a great deal – periods when the response did not always arrive, of confusing information, and the fear that comes with a disease that is frightening and carries a high toll.

“It would be wrong of us to be surprised that some people hesitated at the start – that is not ignorance; in most cases it is the understandable fruit of hard experience, including experience of institutions letting them down.”

But things have been changing. “We have seen openness and cooperation grow. But mistrust does not disappear overnight, and we cannot count it out. Complacency about community mistrust is more dangerous than the mistrust itself.

“There is something profound in that the response that respects communities is the response which lasts,” he says.

“The response belongs first to our own institutions – the Ministry of Public Health and the Institut National de Recherche Biomédicale – and my work sits firmly inside that national framework, which is important to me.”

However, he adds: “We need solidarity. This outbreak will cost a lot of the DRC government. So we need support from the regional and international community.” Teams on the ground also face a struggle in convincing people that it is still safe to visit clinics and doctors for other conditions.

“An outbreak response that destroys the rest of the health system is a response that has failed, and we intend not to do that,” he says.

Even bringing in cash for workers’ wages has been problematic and led to people going unpaid for long periods.

“What is making us a little uncomfortable is when foreign organisations say ‘oh, we are bringing all this money but this money is not reaching the ground’ – it’s not true when people say this. Their money is not managed by local government or regional centres, it is managed by the NGOs.

“The community hears them saying they are collecting all this money, and think we are managing this huge amount, but it’s not true.

“This can influence the community reaction and our work in the field. It was one of the reasons they were destroying the health centres; they were saying you are earning money from each death, you are killing people to push up numbers.

“There’s a lot of speculation around mortality rates among children under five, but older people are also very vulnerable, and I’m not interested in discussing speculation.

“In regard to the demographic, the most affected groups depend on the activities of people because it is spread from person to person. In one province, where there is a lot of mining exploitation, we will see more men falling ill; in other areas, more women because they are taking care of households and family.

“This outbreak is serious … and we are not pretending otherwise. It is concentrated in a number of health zones in the east of the country, and we are seeing a case fatality rate that reminds us how dangerous this disease is.

“But I would also say, honestly, that the situation today is not the situation at the start,” he adds. “Confidence in the laboratory has improved, our teams have access to areas that were harder to reach and the national institutions have confirmed their stewardship of the response.

“We are in the middle of a serious outbreak, being fought by people who have done this before and learned from it – that is the most honest framing I can give.”

The things that matter most at this moment, he says, are finding every case and every contact of that case; keeping people safe and offering dignified burials; infection control in treatment centres; and building trust.

“Our community engagement is not a soft afterthought – it is as urgent as vaccine or any other technical pillar.

“Our approach is simple in principle, harder in practice: we do not lecture; we meet people where they are. We work through local health workers, community leaders, religious leaders and survivors themselves, because evidence shows that the voices people trust most are close to them.

“We explain what we are doing, we correct misinformation quickly and calmly when it appears, and we are prepared to change how we work when communities tell us what does not fit them. And we treat dignity and safety – including how families bury their loved ones – as frontline response, not an afterthought.

“The biggest challenge is the scale and speed of the outbreak against a geography and a cost of reaching everyone. Our teams work in rugged and remote areas, sometimes over difficult distances, and the coordination load – lots of partners, moving parts, cross-border aspects – is enormous. Every case that is found late tells us there is at least one chain we have not yet seen, and that is with us every day.

“One moment I come back to is a mother I met who brought her child to a treatment centre after others in the neighbourhood had been brought in too late to survive. She did it against a current of fear. It took real courage,” he says.

“That she could decide to step through that door and trust us with the life of her child says everything about what the work is: we are not only fighting a virus, we are building enough trust that people will cross their own fear to reach help.

“Another is the relief on a family’s face when the dignified burial of their loved one was possible,” he says. “After much anxiety, the knowledge that their child would be laid to rest with respect.

“What stays with me more than any figure is that these families have lived through repeated outbreaks and great loss and yet, every day, they choose to trust us. That resolve remains with me more than any statistic.”