DRC: "Since we left, at least 1,000 have died of sleeping sickness "

Before being forced to leave in March 2009, Doctors Without Borders/Medecins Sans Frontieres (MSF) operated several sleeping sickness projects in the northern Democratic Republic of Congo (DRC). The last site to be evacuated was in the small town of Bili in Bas Uélé Province. Bili is a small town with approximately 7,000 residents, thinly spread across a forested region. The town has no electricity and no running water. There is an old cotton factory that has been closed for more than 15 years. Neither the police nor the military are present. In this interview, Sophie Signoret, the last MSF doctor to leave the project six months ago, shares her frustration about a seemingly impossible situation, as well as her determination to bring treatment to those who will die without it.

“What really surprised me when I arrived in Bili was the population’s complete lack of knowledge about sleeping sickness. Yet, it turned out that many people had been affected by it. They did not understand why we wanted to treat them for a disease they did not know about, even if, in talking with them, some people could already identify the symptoms in themselves. Their attitude changed completely the day the local chief himself tested positive for sleeping sickness and was successfully cared for at our treatment center. The incident resulted in a radical change in the people’s attitudes and led to everyone accepting MSF.

Having been made aware of the disease, people slowly began to agree to be tested. We still had to quell a rumor that accused us of infecting people with HIV. That is to say, the mistrust ran deep and the disease was unknown.

Unfortunately, the results of testing quickly showed that MSF’s experts on sleeping sickness had it right. In just a few weeks, between early February and late March 2009, we identified and treated no less than 176 people with sleeping sickness. It is tragic to find so many people infected with the disease so far from its epicenter near Doruma, a city located more than 200 miles east of Bili. It confirms that the disease is spreading inexorably, a logical progression since nothing is checking its movement.

It must be noted that even if we are able to identify and treat hundreds, maybe even thousands of people as we did during the six months we were there, we cannot say they have really been cured. To be certain of the results, we have to be able to monitor patients following treatment once every three months for two years, which was not possible anywhere since the beginning of our intervention.

Moreover, by being present for such short periods of time, it would be an illusion to think that we can affect transmission. We are still finding infected patients - therefore the tsetse fly continues to transmit the disease. A project of only a few months turns out to feel futile when it comes to containing the disease.

Of course, MSF is not gone forever from the region. Yet time passes, and infected people die while nothing can be done. In six months, since we left, at least 1,000 people have died of sleeping sickness in the region. It is unacceptable. We cannot stand here with our arms crossed and let people die that way. As soon as the situation allows, MSF will go back. That is for sure.

Sleeping sickness is still a highly neglected disease, and we cannot forget that it is 100 percent deadly when left untreated. You can understand the impatience we feel as health care workers and our refusal to allow armed groups to take an entire population hostage this way.”