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DRC: “Ebola is about human beings and trust”
Hilde De Clerck is one of MSF’s most experienced Ebola doctors and has been managing outbreaks of Ebola and similar viruses for more than 10 years. Hilde has just returned from North Kivu, in eastern Democratic Republic of Congo (DRC), where the latest outbreak of Ebola has proven hard to control. New drugs, which might help cure those who have contracted the virus, are available, but offering and administering these drugs, says Hilde, is not as easy as it may seem.
“When we offer one of the drugs to patients, we talk about the possible benefits but clarify that we cannot guarantee the drug will work; we explain the side-effects but also the risks linked to what we don’t know yet about the product. We always make sure the patient, or a family member representing him, has well understood and gives consent. Sometimes the strength and determination of patients surprises me. I had to explain this to a woman who was very sick and tired, but she opened her eyes, sat up proudly and signed the consent form. It was honest and I strongly believe she made a conscious decision.
It’s very nice to have five molecules that seem promising, but we also have to be realistic. There is no scientific evidence that any of these drugs work for people with Ebola. Still, it’s a good step forward. We can offer Ebola patients access to potentially life-saving drugs while preparing for a clinical trial implementation that will hopefully determine efficacy and safety. This is how we advance. But sometimes I have a feeling that the media and even some health staff think that we now have treatment that works. It’s really too early to say though.
It remains challenging to give these drugs to the patients. That’s one of my main worries. Technically speaking it’s not that difficult, but you need to have the capacity and the proper set-up. As it concerns still unregistered products, each drug must be administered and monitored following a strict protocol. This is not so straightforward inside an Ebola treatment centre. You have to move carefully and slowly because of the protective suits you have to wear. You can’t see that many patients during your time on the ward. You have to monitor the medical parameters, like temperature, of your patients, make sure they are fed, receive enough to drink, are given their symptomatic medication and then update their medical records. This challenge is enormous at the beginning of an epidemic, even without the administration of a new, unregistered drug. We need an army of nurses and hygiene staff – and we first have to train them all, because most of them will have no experience with Ebola. So I find it actually pretty impressive that the drugs are now systematically offered to all patients.
I can’t stress enough how crucial this honesty is. The whole Ebola response is based on mutual trust. It’s about building good relationships with families and communities. Otherwise, new patients won’t come forward and it becomes very hard to break the chains of transmission. So families of patients can call us at any time. We let them enter the Ebola Treatment Centre, show them how we take care of their loved ones and they often come to visit. If patients are too sick to walk, we bring them to the visiting zone on a stretcher. You need to be really humane and it’s the small details that can make a real difference.
Getting that trust is often difficult at the beginning of an epidemic, when a lot of people die in the Ebola treatment centre. People start to assume that patients are being killed inside or at least are being helped to die. And then there are always the rumours about Westerners or other groups stealing organs or blood, or bringing the disease into the community. Some people believe the infectious disease is caused by witchcraft. This is nothing new. The best response to this is good health promotion. You go to the people, explain to them what this disease is, how it is transmitted, how it can be managed and how it can be prevented, and be honest and humane.
If you have successful outbreak control and reduce the number of people the virus is transmitted to, then you have fewer patients to treat and can spend more time with the families, and trust in the community will increase. Of course, if we did have a better treatment, fewer patients would die and trust would also increase.
People in this part of DRC move around a lot. It’s important to understand these movements because that is how the virus moves too. We need to understand families and how they are connected; how people seek health care; how their social network functions. Understanding the people is the key to understanding Ebola. And as the Ebola outbreak moves, we have to move too. We have to be flexible. We need to be one step ahead of the outbreak.
Getting this right really depends on your personnel. You need good health promotors and a good epidemiologist who knows Ebola well. Because it’s not just about data, it’s about talking with people and being genuinely interested in them. No tool can replace that. We need to ask the right questions and be empathetic. When I fill out a case investigation form, I write all kinds of additional information around the edges. The whole sheet of paper will be covered. New tools can improve our analysis, but they have to work alongside human insight. It’s all about behaviour and human beings and trust.”