Responding to the Ebola virus disease outbreak in DR Congo: when will we learn from Sierra Leone?

Abstract

Latest reports from WHO suggest that the Ebola virus disease outbreak in North Kivu and Ituri provinces, DR Congo, is serious and rapidly escalating. As of May 19, 2019, there were 1826 confirmed cases and 1218 deaths, making it the second largest outbreak of Ebola virus disease in history, with a case fatality rate of 66%—much higher than previous outbreaks.1WHO Regional Office for AfricaEbola virus disease. Democratic Republic of the Congo external situation report 42.https://apps.who.int/iris/bitstream/handle/10665/324843/SITREP_EVD_DRC_20190521-eng.pdf?ua=1Date: May 21, 2019Date accessed: May 24, 2019Google Scholar Jeremy Farrar, director of the Wellcome Trust, has called the situation “terrifying”.2Bosely S “Terrifying” Ebola epidemic out of control in DRC, say experts.https://www.theguardian.com/world/2019/may/15/terrifying-ebola-epidemic-out-of-control-in-drc-say-expertsDate: May 15, 2019Date accessed: May 15, 2019Google Scholar Although ring vaccination is helping to contain transmission, it requires sufficient coverage of contact individuals and efficacy has been shown only beyond 10 days after vaccination.3Henao-Restrepo AM Longini IM Egger M et al.Efficacy and effectiveness of an rVSV-vectored vaccine expressing Ebola surface glycoprotein: interim results from the Guinea ring vaccination cluster-randomised trial.Lancet. 2015; 386: 857-866Summary Full Text Full Text PDF PubMed Scopus (595) Google Scholar All critical response interventions (case and contact detection, community education, treatment, and vaccines) are being severely impeded by armed violence in the region: there are numerous active militia groups in North Kivu and Ituri provinces,4Médecins Sans FrontièresNorth Kivu, DRC: MSF Ebola centre not functional after violent attack.https://reliefweb.int/report/democratic-republic-congo/north-kivu-drc-msf-ebola-centre-not-functional-after-violent-attackDate accessed: March 14, 2019Google Scholar and the political instability and violence make it difficult to establish secure bases. The problem is complicated by high degrees of local distrust in the work of Ebola virus disease responders. The recent armed attacks on Ebola treatment centres in Butembo and Katwa areas and killing of a WHO epidemiologist highlight the gravity of the situation.5Médecins Sans FrontièresMedical activities suspended after Ebola treatment centre attack.https://www.msf.org/medical-activities-suspended-after-ebola-treatment-centre-attackDate: Feb 28, 2019Date accessed: March 14, 2019Google Scholar, 6WHOWHO Ebola responder killed in attack on the Butembo hospital.https://www.who.int/news-room/detail/19-04-2019-who-ebola-responder-killed-in-attack-on-the-butembo-hospitalDate: April 19, 2019Date accessed: May 24, 2019Google Scholar Farrar has called for a 6–9-month ceasefire to allow treatment teams into communities, and Tedros Adhanom Ghebreyesus, director-general of WHO, has called for international donors to urgently commit to filling the funding gap to support these efforts.2Bosely S “Terrifying” Ebola epidemic out of control in DRC, say experts.https://www.theguardian.com/world/2019/may/15/terrifying-ebola-epidemic-out-of-control-in-drc-say-expertsDate: May 15, 2019Date accessed: May 15, 2019Google Scholar These steps are important, but they address only part of the problem. It is unclear how much support the armed militia groups in the region have, or how they relate to other kinds of authority within the region. To work in these sites is exceptionally difficult, and few people have the local knowledge, language skills, experience, and networks to do so effectively. The situation is complicated by widespread distrust of people viewed as outsiders and of western-led emergency-response systems, as well as by manipulation of these fears by those seeking to consolidate political or military power. Violence against local and international health workers is an expression of this distrust. But what can be done about it? Distrust and misunderstanding were also features of the Ebola virus disease epidemic in Sierra Leone (2014–15), and research (unpublished) by the Ebola Gbalo Research Group after the outbreak showed the need to work closely with front-line health responders and other authorities perceived locally to be legitimate. Yet these lessons appear not to have been put into practice in DR Congo. Responders from the field, including Alima and Médecins Sans Frontières (MSF), recognise the importance of local engagement more than most. On May 10, 2019, Karin Huster, a field coordinator for MSF, called for a rethink on the Ebola virus disease response in DR Congo, suggesting lowering of its emergency profile to reduce suspicion and distrust in the isolation procedures that are emblematic of Ebola virus disease case management.7Goats and SodaThreats by text, a mob outside the door: what health workers face in the Ebola zone.https://www.npr.org/sections/goatsandsoda/2019/05/10/721020887/threats-by-text-a-mob-outside-the-door-what-health-workers-face-in-the-ebola-zoneDate: May 10, 2019Date accessed: May 15, 2019Google Scholar Kate White, an emergency manager for MSF, called for closer work with communities where most of the deaths are happening.1WHO Regional Office for AfricaEbola virus disease. Democratic Republic of the Congo external situation report 42.https://apps.who.int/iris/bitstream/handle/10665/324843/SITREP_EVD_DRC_20190521-eng.pdf?ua=1Date: May 21, 2019Date accessed: May 24, 2019Google Scholar David Miliband, president and chief executive officer of the International Rescue Committee, has also called for a rethink on the response in DR Congo.2Bosely S “Terrifying” Ebola epidemic out of control in DRC, say experts.https://www.theguardian.com/world/2019/may/15/terrifying-ebola-epidemic-out-of-control-in-drc-say-expertsDate: May 15, 2019Date accessed: May 15, 2019Google Scholar Augustin Augier, chief executive officer of Alima, has said “the best way to overcome this distrust is to trust the community […] if we trust them and give them the means, we can do it”.8AlimaInterview D'Augustin Augier sur RFI avec Christophe Boisbouvier sur la situation d'Ebola en RDC.https://www.alima-ngo.org/fr/interview-d-augustin-augier-sur-rfi-avec-christophe-boisbouvier-sur-la-situation-d-ebola-en-rdcDate: May 10, 2019Date accessed: May 18, 2019Google Scholar Yet this rethink is too slow among many international response agencies. A policy panel discussion in Geneva on May 13, 2019, which we were involved in, continued to focus on international responders and WHO's coordination efforts.9The Graduate Institute GenevaWhat can we learn? Ebola then and now.https://graduateinstitute.ch/communications/events/what-can-we-learn-ebola-then-and-nowDate: May 13, 2019Date accessed: May 15, 2019Google Scholar Many of these efforts regard communities as recipients and supporters rather than as owners of the response. The effort appears to be to do more of the same rather than to commit to finding completely new ways to work with communities, involving them directly in decision making. As part of the Geneva panel, we discussed the findings of the multidisciplinary Ebola Gbalo (Ebola Troubles) study, in which we reconstructed the history of the epidemic in Sierra Leone and the work of responders in Bo and Moyamba districts in the country who worked successfully to control the outbreak before the arrival of national and international responders. We underlined the importance of learning from local front-line responders and working closely with and through communities (involving chiefs, herbalists, youth leaders, traditional health attendants, community health workers, teachers, and others) to promote locally acceptable treatment and burial practices, including offering as-safe-as-possible options for home care where access to care centres is impossible. Much can be learned from the experience in Sierra Leone for the response in DR Congo, where it seems likely that it will be local responders, not the international community, who have the critical part in turning the epidemic around. Here we summarise lessons learnt from the Ebola Gbalo study in Sierra Leone and from DR Congo for successful response efforts. In Sierra Leone, we found that community-level distrust was related to the nature of the response and the distance to the locus of operational decision making. Large and distant Ebola treatment centres were distrusted because families could not follow sick relatives and monitor their progress; rather, patients were seen to be taken away by hazmat-suited strangers to die in unknown locations (many bodies were never returned, their graves unknown). Village-based community care centres were preferred as triage facilities because community members knew the staff and could see into the centres.10Oosterhoff P Mokuwa E Wilkinson A Community-based Ebola care centres: a formative evaluation.http://www.ebola-anthropology.net/case_studies/community-based-ebola-care-centres-a-formative-evaluationDate: 2015Date accessed: March 24, 2019Google Scholar Burial teams and contact tracing worked best when the recruits were local. Panic and confusion were alleviated when home carers were given clear instructions about how to care for their loved ones safely while waiting for help to arrive.11US CDCSteps to protect form Ebola while you wait for help.https://www.cdc.gov/vhf/ebola/pdf/2018/english/Protect-from-Ebola-While-You-Wait-Flipbook_English_P.pdfDate accessed: May 15, 2019Google Scholar Where local agents, including health personnel, government workers, and families, were strongly involved in planning and implementing the response it was more effective. Families were recognised as essential to the survival of their relatives, and local health personnel felt fully valued. Our findings suggest that in Bo and Moyamba districts the response succeeded when community and district leaders were fully engaged. The actors differed in each district; international responders need to work with district and traditional authorities, as well as health workers embedded in communities, to discover other local leaders and figures of influence, including women's groups, secret societies and religious groups, traditional healers, citizen welfare groups, and youth organisations. From the outset, international and national responders in North Kivu and Ituri provinces, DR Congo, have recognised the importance of working with people who are perceived to be legitimate figures of authority, even if they do not have legislative or official authority. Considerable effort has also been given to working with researchers (social scientists, including anthropologists and health systems researchers) with extensive knowledge of the region to identify different kinds of public authority.12Social Science in Humanitarian ActionKey considerations: Ebola preparedness and readiness in Goma, DRC.https://reliefweb.int/report/democratic-republic-congo/social-science-humanitarian-action-key-considerations-ebolaDate: March 25, 2019Date accessed: May 27, 2019Google Scholar Recording how these different authorities relate to each other enabled responders to identify and establish effective working relationships with, for example, particular youth groups and militia groups in parts of North Kivu and Ituri provinces. However, crucial gaps in the response remain. There still appears to be a lack of ownership of the response in some communities. Understanding reasons for this lack of ownership is crucial. In Sierra Leone, the earliest affected communities had no option but to engage with the disease. Our data illustrate how active local involvement promoted understanding. By whatever means, the sick had to be quarantined and the dead buried, even though the risks associated with these activities were known. Steps were then taken to improvise protective clothing and implement measures to prevent transmission. Carers and burial teams began to use plastic bags and coats worn backwards. Chiefs formulated Ebola bylaws to restrict movement and fine those not reporting cases of sickness. Volunteer youth groups mobilised to block roads, trace contacts, and safely bury the dead. In North Kivu, DR Congo, by contrast, the prompt arrival of international help may have served to close down the available space for local agency. It is perhaps telling that much of the response (and training of locals) is done in French—a language not understood by many villagers.13Tsonga E “Health workers just fill their pockets”: mistrust mars Congo's Ebola response.https://www.theguardian.com/global-development/2019/may/15/health-workers-just-fill-their-pockets-mistrust-mars-congo-ebola-response?CMP=Share_iOSApp_OtherDate: May 15, 2019Date accessed: May 15, 2019Google Scholar Instead, a counter-discourse of Ebola denial has taken root in homes and villages, feeding attacks on Ebola facilities and staff. Meinie Nicolai, a general director for MSF, noted “what we know is that organisations involved in the Ebola response—MSF included—have failed to gain the trust of a significant part of the population”.14Médecins Sans FrontièresNorth Kivu: Ebola centre inoperative after violent attack.https://msf.lu/en/news/all-news/north-kivu-ebola-centre-inoperative-after-violent-attackDate: Feb 26, 2019Date accessed: March 14, 2019Google Scholar Perhaps what is now needed is for the international response to step back and debate with communities and local responders about what they could do for themselves. In Sierra Leone, where jobs for young people are scarce, paying so-called volunteers a modest stipend proved an effective way of gaining community engagement. Local learning during the Ebola virus disease outbreak in Sierra Leone was rapid among health workers and villagers alike.15Richards P Ebola: how a people's science helped end an epidemic. Zed Books, London2016Crossref Google Scholar In the absence of a functioning, well-resourced health system, people drew on their own empirical observations about how Ebola virus was transmitted, as well as any previous experiences of responding to cholera and smallpox. In interviews for the Ebola Gbalo study, we learnt how infected health workers in Kenema (the site of an isolation facility to which many early Ebola virus disease cases were sent) phoned their colleagues in neighbouring Bo district (and elsewhere) to tell them they were seeing different symptoms from those being cited nationally, enabling staff to be prepared. This information was acted on by Bo district authorities, and there are examples of prepared staff being able to stop infection spread as a result. In some instances, villagers adapted past knowledge to deal with the virus, including in some remote areas local efforts to quarantine affected houses and villages, rehydrate sick relatives, and make impromptu personal protective equipment to safely bury their dead. A feature of the response in Sierra Leone, however, was the scarce attention given by national and international responders to the experience of these front-line and district-based responders. Had there been a different mindset in action then guidelines and information on local symptoms, dignified burials, home care, and acceptable siting of treatment centres would probably have been corrected and agreed much earlier. By all accounts, control of the Ebola virus disease epidemic in northeastern DR Congo poses even more daunting challenges than in Sierra Leone, where war and outbreaks were not conjoined. The region has been affected by protracted insecurity and conflict for decades, biomedical health-care facilities vary widely in terms of capacity and adequacy of care, and mortality and morbidity from other infectious diseases are rife, including ongoing outbreaks of polio, cholera, and yellow fever. Surviving in such circumstances requires skill and tenacity, as well as a capacity to learn from the past and draw on local knowledge. Communities (however defined) are learning rapidly, and so are responders, with safe burials, for example, being adapted to accommodate local practices.16Social Science in Humanitarian ActionSummary: social science lessons learned from Ebola epidemics.https://opendocs.ids.ac.uk/opendocs/ds2/stream/?#/documents/3688965/page/1Date: February, 2019Date accessed: May 24, 2019Google Scholar Placing greater trust in communities to identify effective solutions is likely to pay dividends.17Kasali N Community responses to the Ebola Response: Beni, North Kivu.https://opendocs.ids.ac.uk/opendocs/ds2/stream/?#/documents/3688954/page/1Date: 2019Date accessed: May 24, 2019Google Scholar, 18Trapido J Ebola: public trust, intermediaries, and rumour in the DR Congo.Lancet. 2019; 19: 457-458Summary Full Text Full Text PDF PubMed Scopus (18) Google Scholar The Ebola virus disease outbreak in Sierra Leone taught international responders never to underestimate the levels of skill, common sense, and adaptive ingenuity of local agents (from health workers and district managers to family members) to respond to an outbreak once they understand the nature of the challenge, provided there is a real attempt to build working alliances between local and international partners based on mutual respect. Far greater efforts are now needed in DR Congo to engage with community members, local governance structures, and district health authorities, and to see them not only as implementers of an international emergency response but also as decision makers in how to roll out vaccination and treatment. This will need to include home care and establishment of locally staffed and managed burial teams, as well as a complete change of mindset from international agencies. Home care for the management of a person with Ebola virus disease is controversial. For many, the risks of infection are too high, especially where supplies and support for families are inconsistent. However, in some circumstances, home care is unavoidable. The Ebola Gbalo study showed that families often had to wait long periods for help during the Sierra Leone epidemic, and beds in Ebola treatment centres were not always available. In these circumstances, families refused to abandon their loved ones but coped as best they could, often with only their own resources. Given the inadequate infrastructure and reach of the official response, there is always the issue of how care is to be given while waiting for help and in settings where no help is likely to arrive. In Sierra Leone, international non-governmental organisations and donors, as well as the government, persistently overruled the suggestion to provide information and resources to enable people to care for loved ones within their homes.19Martineau F Wilkinson A Parker M Epistemologies of Ebola: reflections on the experience of the Ebola Response Anthropology Platform.Anthropol Q. 2017; 90: 475-494Crossref Scopus (18) Google Scholar Yet, Ebola is fundamentally a family disease. In contexts of profound distrust, it is an illusion to expect mothers to willingly allow their children—or any family member—to be taken by health personnel in hazmat suits to barricaded emergency-response medical facilities regarded as places from which no-one returns alive. It is no surprise that most deaths in DR Congo have been in the community and not in Ebola treatment centres.20WHOEbola virus disease—Democratic Republic of the Congo.https://www.who.int/csr/don/16-may-2019-ebola-drc/enDate: May 16, 2019Date accessed: May 24, 2019Google Scholar In Sierra Leone it will never be known how many people might have been saved if boots, chlorine, and rubber gloves had been made freely and widely available in health centres, markets, and households to enable families to take basic precautions while caring for people with Ebola virus disease. Although improving local trust in health centres is essential—specialised care in local, trusted treatment centres improves survival chances—improving the safety of home care with good advice might be the only realistic option in the more inaccessible villages in North Kivu and Ituri provinces, particularly in places isolated by fighting or characterised by high levels of distrust in the formal health system. One possible way forward might be to pre-emptively mass-vaccinate people who are identified locally as likely carers, although identification of these potential carers could be challenging and needs to be driven locally. The use of guidelines11US CDCSteps to protect form Ebola while you wait for help.https://www.cdc.gov/vhf/ebola/pdf/2018/english/Protect-from-Ebola-While-You-Wait-Flipbook_English_P.pdfDate accessed: May 15, 2019Google Scholar on home care from the US Centers for Disease Control and Prevention (developed in Sierra Leone) could be very effective, as could dissemination of accurate information about responses via radio. If necessary, home-care leaflets could be dropped by drone, along with gloves, boots, and possibly even chlorine, as local need arises. The armed forces had a major part in enforcing quarantine in Sierra Leone. They provided 24-h armed guard for 21 days in houses where a person had become infected with Ebola virus. The reactions to military intervention were mixed across our fieldwork area, with some study participants saying it was necessary to enforce compliance, and others finding enforced quarantine counterproductive. There were multiple examples of bylaws and quarantine being broken, suggesting that it might be better to engage with populations in such a way that they take responsibility for their own quarantine, rather than relying on external military forces. External actors could support such an approach through provision of food and medical supplies for a range of ailments. In the uncertain and fragmented context of DR Congo it is highly unlikely that any general restriction of movement could be enforced while the military is a major actor in the response. Furthermore, stepping up military presence is likely to further exacerbate suspicions of political manipulation and could possibly increase violence. The priority for DR Congo should be to support endeavours to negotiate a peace deal and broker a ceasefire to encourage all armed groups to unite in the Ebola virus disease response. These endeavours are made harder by the corruption associated with local business interests that have arisen with the influx of money and goods for the response. This corruption must be tackled. Recognising differences between settings, we believe, nevertheless, that it is urgent that the lessons from Sierra Leone help international responders to rethink their response to the worsening outbreak in northeastern DR Congo. These lessons are: (1) to work closely with the different forms of local authority, including recognising heterogeneity and different capacities among those authorities, with a commitment to allowing local authorities to shape the response; (2) to allow local front-line health workers to advise international responders on the best means to reach, and encourage cooperation from, affected communities; (3) to disperse resources and basic life-saving equipment (including gloves, boots, and chlorine) to communities, particularly in remote locations beyond formal health systems (front-line health workers and distant community leaders should also be provided with communication tools to expand the surveillance area beyond those reached by formal health systems); and (4) to recognise that in the highly politicised context of the Ebola virus disease outbreak in DR Congo, securitisation of response is problematic and will require reflection. If international agencies are to provide effective support to local responders, then serious efforts need to be given to peace negotiations and brokering a ceasefire or securing safe corridors for aid delivery. But even if an improvement in security conditions does not happen, the situation could be transformed if international agencies, including WHO, let go of their control and trust community responders to take the lead. While acknowledging the enormous courage, commitment, and hard work shown by responders to date, we share these reflections in the hope that new ways can urgently be found to support communities to tackle the devastating outbreak in northeastern DR Congo.