LESSONS FROM EBOLA AFFECTED COMMUNITIES: Royal African Society
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LESSONS FROM EBOLA AFFECTED COMMUNITIES: Being prepared for future health crises FEBRUARY 2016 This report is written by Polygeia and commissioned by the Africa APPG with fieldwork funding from the Royal African Society. This is not an official publication of the House of Commons or House of Lords. It has not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues
CONTENTS ACKNOWLEDGEMENTS 4 FOREWORD 9 ACRONYMS AND ABBREVIATIONS 10 EXECUTIVE SUMMARY 11 INTRODUCTION 13 1 WHAT WEAKNESSES HAS THE EBOLA OUTBREAK EXPOSED? 14 1.1 The West African Ebola Outbreak 15 1.1.1 Lasting Impact on Communities 18 1.2 The Response 20 1.2.1 National Response 21 1.2.2 International Response 23 1.2.3 The UK’s Role in the Ebola Response 24 1.3 Underlying Challenges: Health Systems and Infrastructure 27 1.3.1 Health Systems in Guinea, Liberia and Sierra Leone 28 1.3.2 Rural, Peri-Urban and Urban Challenges 32 1.3.3 Legacies of War and Reconstruction 33 1.4 Summary 34 2 HOW IMPORTANT ARE COMMUNITY-LED APPROACHES TO HEALTH? 35 2.1 What is a ‘Community-Led’ Approach? 35 2.2 The Role of Communities in the Response: Building Trust and Legitimacy 38 2.2.1 Initial Public Mobilisation Campaigns: Resistance and Fear 38 2.2.2 Community Groups: Rising to the Challenge 39 2.3 Localised Approaches: Community, Engagement and Consultation 48 2.4 Avoiding Parallel Systems: Utilising Existing Structures 51 2.5 Summary 54 3 HOW CAN THE UK AND INTERNATIONAL DONORS BEST SUPPORT COMMUNITY-LED APPROACHES TO HEALTH SYSTEMS STRENGTHENING? 55 3.1 Putting Community at the Centre of Future Health Programmes 55 3.2 Earlier Community Consultation: Fostering Ownership 57 3.3 Recognising Communities as Experts in Themselves 58 3.4 Harnessing Local Resources: Building a Sustainable and Local Health Workforce 60 3.5 Coordination: The Need to Strengthen Multi-Stakeholder Partnerships 61 3.5.1 Coordinating National Stakeholders 61 3.5.2 Coordinating International Stakeholders 62 3.6 Supporting National Governments to Achieve Universal Health Care 64 3.7 Conclusion 65 4 RECOMMENDATIONS 66 4.1 Recommendations for UK Government 66 4.2 Recommendations for UK Actors 67 REFERENCES 68 3
ACKNOWLEDGEMENTS This report was written by Polygeia with We are especially grateful to Restless direction and oversight from the Africa Development in Sierra Leone and Public APPG. Health and Development Initiative (PHDI) for their support in co-developing and Co-editors from Polygeia: Thomas Hird & conducting the key informant interviews Samara Linton with community leaders in their Researchers: Maisy Grovestock, Shreya respective countries on behalf of Polygeia Nanda, Rhys Wenlock, Waqas Haque & and the Africa APPG:- Ben Walker. Restless Development in Sierra Leone: Jamie Bedson,Saiku Bah, Prince Kenneh, George Tamba Sellu, Susan Manie, Juliana Sama Fornah, Mohamed A Jalloh and Alfred T M Nav Special thanks to Lord Chidgey (Co- Chair) for heading up the inquiry and sessions and to Hetty Bailey the APPG Coordinator. Public Health and Development Initiative (PHDI) Liberia: Dr Alaric Topka Thank you to RAS for their support of the Africa APPG and funding of the report and associated field research. Special thanks to Richard Dowden, Director at RAS and Susana Edjang, a RAS council member for their input and guidance. Thank you to Gemma Haxby for proof reading. 4
Parliamentarians who contributed to report drafts or attended thematic sessions - • Baroness Armstrong • Paul Burstow MP • Lord Cameron • Lord Chidgey • Lord Crisp • Lord Collins • Mark Durkan MP • Lord Giddens • Baroness Hayman • Meg Hillier MP • Pauline Latham MP • Lord Lea • Jeremy Lefroy MP • Baroness Kinnock • Baroness Masham • Duke of Montrose • Lord Patel • Lord Ribeiro • Earl of Sandwich • Lord Watson 5
• ReBUILD, COUNTDOWN and REACHOUT Consortium The Africa APPG expresses their sincere • Restless Development thanks to all those who contributed to • Save the Children this review, without whom this report • SciDev.Net would not have been possible. • Professor Joanne Sharp, University of Glasgow Thank you to all of those that submitted • WHO Country Office Liberia & WHO written evidence to the inquiry- African Programme for Onchocerciasis • African Diaspora Healthcare Control - Oyene U.E, Prof Amazigo U.V, Professionals for Better Health in Africa Cole I, Zoure H.G.M, Bette A.K, initiative & Dr Titi Banjoko Dr Afework H.T & Dr Fobi G • Amref Health Africa • World Vision International UK & Sierra • Action Contre la Faim (ACF) Leone • ActionAid • Dan Cohen, Maccabee Seed Company, Thanks also to Dr Fred Martineau Davis CA Coordinator of Ebola Response • Doctors of the World (DotW) in Anthropology Platform and to the partnership with Medicos del Mundo APPG on Global Health who helped (MdM) • Fambul Tok • Prof Mariane Ferme, University of California, Berkeley • Derek Gatherer PhD CertEd, Lancaster University • Health Partners International • Health Poverty Action • Institute of Development Studies in particular Professor Melissa Leach & Dr Pauline Oosterhoff for their support • International Rescue Committee • Dr Nathaniel King, The World Bank Group • Dr. Jill Lewis, Living for Tomorrow • Malaria Consortium • Marie Stopes International • Dr David Nabarro, UN Special Envoy on Ebola • Njala University, Sierra Leone in particular Prof. Paul Richards, Roland Suluku & Thomas Songu • Dr Melissa Parker, Reader LSHTM & PI of the Ebola Response Anthropology Platform • Pandemic and Epidemic Disease department (PED) WHO • Peter Penfold, CMG, OBE- former British High Commissioner to Sierra Leone 6
in circulating the Africa APPG’s call for the World Health Organisation African evidence. region; Thank you to those that contributed to • Dr. Adrian Thomas - Vice President of the five thematic panels on the subject or Global Market Access & Head of Global gave oral evidence - Public Health, Janssen Pharmaceutical • Dr Uche Amazig - former head of the Companies of Johnson & Johnson African Partnership for Onchoceriasis • H.E. Edward Mohamed Turay - High Control Commissioner for Sierra Leone • Dr Egeruan Babatunde Imoukhuede • Peter West - British High Commissioner - Clinical Project Manager and to Sierra Vaccinologist, The Jenner Institute • Dr Titilola Banjoko – Royal Africa Society • Dr Michael Edelstein - Centre on Global Health Security, Chatham House • Nic Hailey, Former Director Africa at the FCO • Prof Catherine Hoppers - University of South Africa • Dr. Arif Husain - Chief Economist, World Food Programme • Dr. Adesina Iluyemi PhD - Executive Board Member, NEPAD Council • Dr. Monty Jones - Special Advisor to the President of Sierra Leone • Tulip Mazumdar - Global Health Correspondent, BBC News • Solomon Mugera - Editor, BBC Africa • Dr David Nabarro - UN Special Envoy on Ebola • Baroness Northover - Former Parliamentary Under Secretary of State for DFID • Dr Francis Omaswa - Executive Director of the African Centre for Global Health and Social Transformation and former Director General of Health services in Uganda; • Dr. Robtel Neajai Pailey - Liberian academic, activist, and author based at SOAS, University of London • Larissa Pelham - Emergency Food Security & Vulnerable Livelihoods Adviser, Oxfam • Mr Jon Pender - Vice President, Government Affairs, GlaxoSmithKline • Dr. Paul Richards - Njala University, Sierra Leone • Dr Luis Sambo - Executive Director of 7
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FOREWARD The Ebola crisis in West Africa demonstrated clearly how vulnerable the region was to rampant disease. Robust health systems, available at the point of need, were simply not there. There was little ability among the populations to pay. In the circumstances the responses from community health workers, local health systems and the people themselves were, in many cases, remarkable and totally selfless. The Republic of Guinea, Sierra Leone and Liberia share not only common borders, but deep cultural, language and ethnic affinities. The borders themselves barely exist for the local populations that straddle them. In the mountainous rainforest regions of the interior, there are minimal transport networks and non-existent utilities such as mains water, sanitation and electricity. Communities in remote villages are virtually inaccessible. Congratulations are due to Polygeia in drawing together written and verbal evidence on the responses to the Ebola health crisis from well over 200 sources. Their extensive analysis of the community engagement in the response to Ebola alongside national, international, and health aid agencies intervention in this report provides important guidance for the future. Lord Chidgey, Co-Chair Africa All-Party Parliamentary Group 9
ACRONYMS AND ABBREVIATIONS APPG All-Party Parliamentary Group ACAPS Assessment Capacities Project AFRO (World Health Organization) African Region Office ASEOWA African Union Support to Ebola Outbreak in West Africa AMREF African Medical and Research Foundation AU African Union CDC Centers for Disease Control and Prevention CEBS Community Evidence-Based Surveillance CHW Community Health Worker CLEA Community-Led Ebola Action CWC Community Watch Committee DERC District Emergency Response Centre (Sierra Leone) DFID Department for International Development DHMT District Health Management Team (Sierra Leone) EBOLA/EVD Ebola Virus Disease ETU Ebola Treatment Unit FGM Female Genital Mutilation FHCI Free Healthcare Initiative HIV/AIDS Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome HSS Health Systems Strengthening IDC International Development Committee IDS Institute of Development Studies IFRC International Federation of Red Cross IHR International Health Recommendations IOM Institutional Organisation for Migration IRC International Rescue Committee LSHTM London School of Hygiene and Tropical Medicine MNCH Maternal Neonatal and Child Health MOH Ministry of Health MoHS-HED MOH Health Education Department (Sierra Leone) MSF Médecines Sans Frontières NGO Non-Governmental Organisation NHS National Health Service OECD Organisation for Economic Co-Operation and Development PHU Public Health Unit PPE Personal Protective Equipment PRA Participatory Rural Appraisal SAGE Scientific Advisory Group in Emergencies SMAC Social Mobilisation Action Consortium UK United Kingdom UN United Nations UNFP United Nations Population Fund UNICEF United Nations Children’s Fund UNMEER UN Mission for Ebola Emergency Response US United States of America USAID United States Agency for International Development WHO World Health Organization 10
EXECUTIVE SUMMARY By January 20th 2016, an Ebola epidemic groups in the community including in West Africa had killed 11,316 people. women, young people and community It had begun over two years before in leaders and highlights the crucial role Guinea and exposed under-resourced they played in creating successful and over-burdened health systems in strategies to control Ebola. To ensure the affected countries. The international the voices of affected communities response was weak. However the UK were represented in the report, 23 key played a key role by providing Sierra informants were interviewed. In Sierra Leone with £427m worth of medical, Leone these were conducted by Restless technical and logistical support Development, and in Liberia by Public largely through the Department for Health & Development Initiative (PHDI). International Development. These funds were given to the Sierra Leone This report finds that response efforts government, front-line NGOs and other were most effective when communities vital actors and used to support a range demanded assistance at the local level. of research. It therefore advocates that although a top down approach (nationally and At Westminster between October 2014 internationally) may always be necessary and May 2015 the Africa All Party in a health crisis such as an Ebola Parliamentary Group organised a series outbreak, it is only effective when the of panel discussions on the international affected communities trust that response. response to Ebola. Panellists who The report acknowledges that the had worked in the Ebola-affected need to react rapidly in a health crisis communities stressed repeatedly that makes it almost impossible to consult the response was being hindered communities immediately. However the by fear and a lack of trust between key lesson in ensuring preparedness for national actors, international actors and future health crises is that health systems affected communities. Consequently should be developed horizontally, local the APPG, together with Polygeia, ownership should be prioritised and launched an enquiry into attempts to investment made at community level. engage the affected communities in Such approaches foster trust and create the response (1). This report reviews the demand for health services. Communities evidence submitted by key informants should be consulted about their needs through interviews and a literature and local facilities and systems developed review. It reflects the lessons learned to provide permanent services which from the Ebola outbreak and explores local people trust and access and which the importance of trust between can respond effectively during a crisis. governments, health workers and communities and the importance of local The chief finding of the report is that ownership of health systems. efforts to curb the outbreak of Ebola in West Africa were most effective when A diverse range of actors were involved local leaders of affected communities in the response in West Africa. They often led the demand for assistance from had different priorities and strategies their governments and the international and not every strategy was successful. In actors, and played an essential leadership the early stages mistrust of and resistance role in the management of that to responders was indicative of a lack assistance. of community engagement. This report analyses the engagement by different 11
The chief recommendation of this report is that the UK government and non- governmental organisations should give higher priority to community ownership of health. This would strengthen local health systems and enable them to respond more effectively to a crisis. The conclusions of this report will help guide a UK response to future epidemics and, in the long term, help reconstruct and strengthen health systems in poor countries. A summary of this report and its recommendations was included as written evidence to the House of Commons International Development Committee; Ebola: Responses to a public health emergency (2). 12
INTRODUCTION The Africa All-Party Parliamentary with community leaders in rural and Group commissioned researchers from urban areas to gain insights into the Polygeia, a student-run global health response of their communities in the think tank, to explore the experiences of Ebola response. communities affected by the 2014 - 2015 Ebola crisis in Sierra Leone, Liberia and The role of communities in the response Guinea. The researchers also examined to a health crisis such as Ebola is complex the role of affected communities in the and multifaceted. This report uses a response to the outbreak and learned broad definition of community to include lessons for community engagement any group of people who are linked by in health crises and more broadly the social ties and common perspectives, and implications for strengthening health engage in joint actions. Communities systems in West Africa. vary hugely within and between these countries so it is difficult to generalise Chapter One explores the response and their response to the crisis. However, this the effectiveness of national health report aims to draw out central themes systems of countries affected by the and lessons from the Ebola outbreak, Ebola outbreak in the context of their which could improve community socio-political and historical factors. engagement and effectiveness in response to a health crisis in the short Chapter Two examines evidence of term and in the longer term contribute community mobilisation and community- to a stronger health system. led interventions in the Ebola crisis and evaluates their importance. Chapter Three focuses on how the UK can influence, strengthen and improve the response of communities and national health systems to health crises. The report includes evidence from 31 written submissions in response to a call for evidence; the findings of 5 meetings held by the Africa APPG to discuss the Ebola response including the role of the media, pharmaceutical companies and community actors, the impacts on economies, food security, women and community resilience; and a review of the literature on Ebola outbreaks. 19 parliamentarians were involved in the process. To ensure the voices of affected communities were represented, the Africa APPG and Polygeia worked with Restless Development, a youth-led development agency, in Sierra Leone and Public Health & Development Initiative Liberia (PHDI) in Liberia. Researchers conducted 23 key informant interviews 13
1 WHAT WEAKNESSES HAS THE EBOLA OUTBREAK EXPOSED The Ebola Virus Disease (Ebola) was first “Clinicians in equatorial Africa have identified in the Democratic Republic good reasons to suspect Ebola when a of Congo (then Zaire) and South Sudan “mysterious” disease occurs, and this (then Sudan) in 1976 and named after favours early detection. Laboratory the Ebola River in northern Congo. It is capacity is in place. Staff know where believed to be zoonotic which means to send patient samples for rapid and reliable diagnosis. Health systems are it normally exists in animals but can familiar with Ebola and much better be transmitted to people. Once in the prepared. For example, hospitals in body, rapid viral replication affecting Kinshasa, the capital of the Democratic immune cells and blood vessels triggers Republic of Congo, have isolation wards, systemic inflammation and a drop in and staff are trained in procedures blood pressure. This can lead to death for infection prevention and control. from shock and multiple organ failure Governments know the importance of (3). Ebola is also passed between people treating a confirmed Ebola case as a through direct contact with the blood or national emergency.” other bodily fluids or the secretions of an infected person. On average, it takes 8 West African countries, having never to 10 days for symptoms to appear and is experienced an Ebola outbreak, were often confused with cholera and malaria, poorly prepared for this disease at making early diagnosis difficult (4,5). every level, leading to the initial rapid Treatment consists of intensive care, oral and undetected spread in what was to rehydration salts and intravenous fluids. become the largest and deadliest Ebola At present, candidate vaccines are in outbreak in history. clinical trials with planned submission for licensure by the end of 2017 (6). In the 40 years since its discovery there have been 26 Ebola outbreaks in 12 countries. The case fatality rate for each outbreak ranges between 25% and 90% with approximately 2361 cases and 1548 deaths prior to the 2014 - 2015 West African Ebola outbreak (5). Countries in equatorial Africa have experienced the most Ebola outbreaks: seven in the Democratic Republic of Congo and five in Uganda. In contrast to the recent West Africa Ebola outbreak, all previous outbreaks were controlled in periods ranging from three weeks to three months. This is partly attributable to the preparedness of health systems. According to the World Health Organisation (7): 14
1.1 THE WEST AFRICAN EBOLA OUTBREAK In December 2013, an 18-month-old boy the UK, Spain and US were diagnosed as in Melindou, a village in Guinea, became infected (11–13). The US-based Center the first case in the West Africa Ebola for Disease Control warned of up to 1.4 outbreak. There is evidence that he may million cases in West Africa by January have been infected by contact with bats 2015 (13). Local and international press (8). Family members quickly developed began to speculate on the potential similar symptoms, as did funeral catastrophic consequences. This spurred attendees and several traditional healers the international response to further and hospital staff who had treated them action, but it also created an image of in nearby Gueckedou. Over the following Africa that created panic and fear. three months transmission chains carried the virus cycle of exposure, cases, deaths Transmission peaked during October and funerals to several cities, including 2014 with approximately 900 new the capital, Conakry, and many more infections per week (see figure 1 and box villages and rural districts (9). 1). The plateauing and eventual decline of the incidence of the virus coincided Initial investigations by the Meliandou with a surge in local and international health centre, and later by staff from responses. Although direct correlation Médecins Sans Frontières (MSF), between specific responses (medical, suspected cholera which is endemic social or political) and the reduction in in the region, but without conclusive cases is yet to be made. evidence. In March 2014, a larger investigation began which included At present – 2nd February 2016 – the Ministry of Health, World Health The West African Ebola outbreak Organisation (WHO), WHO Regional was declared to have ended on 14th Office for Africa (AFRO) and Médecins January, however there has already Sans Frontières (MSF) staff and the Ebola been re-emergence in Sierra Leone virus was identified as the causative (14). There have been, in total, 28,638 agent. In June, MSF warned that Ebola confirmed probable and suspected cases was “out of control” and called for the worldwide and 11,316 deaths. All but “massive deployment of resources” as 36 cases and 15 deaths have occurred in the disease continued to penetrate local Guinea, Liberia and Sierra Leone. The communities in south-eastern Guinea geographical distribution of these cases is and began to spread in neighbouring shown in Figure 2 (15). Sierra Leone and Liberia. On August 8th, as the disease was entering its deadliest phase, the WHO declared a Public Health Emergency of International Concern (PHEIC). During the following months, Ebola intensified in both rural and urban areas, with cases reported in Nigeria, a country of almost 200 million people, and Senegal. In autumn 2014, two leading doctors, Dr Samuel Brisbane of Liberia and Dr Sheikh Umar Khan of Sierra-Leone, succumbed to the disease (10), and several healthcare workers returning to 15
Figure 1 & Box 1: Stages of the West African Ebola crisis (1-4) by the number of confirmed new Ebola cases by week. (adapted from presentation by Dr Nabarro, UN Special Envoy for Ebola (16) & European Centre for Disease Prevention and Control report (17)) Stage 1 Stage 3 • An unidentified disease spreading • Number of infections per week through Guinea, Sierra Leone plateaus and falls and Liberia. Lassa fever, Ebola or • Continued support from the Cholera? international community, with the • MSF and national governments focus moving away from care of responded the earliest, with the infected to contact tracing little initial buy-in from the • Community engagement is international community instrumental in this stage • Growing fear in communities fuelled by misinformation and lack Stage 4 of understanding of preventative • Decrease in infections, outbreak measures declared over in Jan 2016, but re- emergence likely Stage 2 • Support needs to continue to • Most rapid increase in infections ensure that we get to zero cases during the outbreak • Communities play key role in • The threat of spread to Europe contact tracing and hidden cases and North America was realised • In September, the WHO announced that the Ebola outbreak was an “event of international concern” and began scaling up the response • Large degrees of resistance were displayed by the communities 16
Figure 2: Geographical distribution of total confirmed cases in Guinea, Liberia, and Sierra Leone as of 01 November 2015 (15). Confirmed Cases 1-5 6 - 20 21 - 100 101 - 500 501 - 4000 No cases reported 17
1.1.1 LASTING IMPACT ON COMMUNITIES The appalling suffering, enormous and hundreds have died from it. The death toll and the catastrophic impact International Rescue Committee (IRC) on affected communities cannot reports that as of January 2014, “65% of be overstated. All the community health care worker infections occurred leaders interviewed for this report among staff employed in non-Ebola cited the collective trauma felt by the care facilities”. The most common cause communities. was exposure because employees lacked personal protective equipment (PPE) (22). Beyond the immediate horror and loss Many people avoided health services of life, the Ebola crisis brought the usual altogether because they feared infection routines of daily life to a halt: restricted (15). This had adverse effects on all population movement, interrupted major health programmes including TB, harvests, lead to the closure of markets HIV, malaria and nutrition programmes and restricted regional and international and routine vaccinations. The knock- trade. Economic activity in the region on effects will be catastrophic (23). For was reduced, reversing recent economic example, in many areas routine measles gains in Sierra Leone, Guinea, and vaccination rates have fallen by at Liberia. The United Nations Development least 25%. This could result in tens of Group (UNDG) predicted a loss of GDP thousands of additional measles cases of up to 9.6% ($315m USD) in Guinea, leading to between 500 to 4,000 deaths 8.0% ($292m USD) in Sierra Leone and (24). 18.7% ($245m USD) in Liberia (18). This economic impact will continue to have a Ebola has disproportionately affected considerable effect on employment and women. In the outbreak’s early stages, household livelihoods in the region. The women were more likely to be exposed region is predominantly rural and those to the virus than men due to their communities which rely on subsistence care-giving role in families. This gender farming are particularly exposed to an disparity continues in the knock-on economic collapse (see case study below). effects of Ebola; a disproportionate number of women in Sierra Leone, This regional economic decline also Liberia and Guinea are employed in caused a widespread crisis of food sectors most affected by the outbreak security, affecting hundreds of thousands such as informal services and agriculture of people in each country (19). In some (18,25). areas there has been a slow economic recovery in recent months but household Education has also been badly affected. income remains low, food production Schools were closed in parts of Sierra has fallen and higher food prices have Leone, Liberia, and Guinea for up to hit already poor communities (20). The six or even eight months. Five million World Food Programme (WFP) found children were affected (26). Loss of that in many communities in Sierra household income may also mean more Leone, Liberia and Guinea, transport children will drop out of school in the issues are a key factor in reducing food longer term. Finally, some studies show security (21). an increase in teen pregnancy and child labour during this period (18,27). Routine healthcare services have also been disrupted in the region. The vast majority of healthcare workers were diverted to combat the Ebola outbreak 18
Case Studies: The impact of the Ebola outbreak on communities “We are hungry” on health in the district. “Clinic Gelengasiasu Town lost eighteen attendance has been low … a lot of people to Ebola. “The whole other people died not from Ebola, but community was destroyed. Our houses from the fear to go to hospital when spoiled. Human beings warm houses – they are sick. Health service delivery with the deaths nobody was inside the has been seriously hampered, a lot of houses” Folokula Gayn, the general gains made in healthcare have been town chief, explains. “Our rice harvest lost as well.” did not happen” Gayn continues. “We are hungry; there is no way to even Interviews from Port Loko Town, Port harvest rice”. Jackson Miller, from a Loko District, Sierra Leone market town in neighbouring county Gounwolaila, shares a similar story. “Children are fending for themselves” “We have moved from town to our “Schools were closed, hospitals closed, farms, disturbed our businesses and pregnant women were not taken interrupted our farming. We are a care of, health practitioners were market town”. afraid and children died of simple ailments. Businesses were affected Interviews from Gelengasiasu as parents were not going to work” Town, Gbarpolu County, Liberia and Ruth Johnson from Lakpazee explains. Kpayeakwelle, Gou Gounwolaila High School teacher, Lawrence Flomo, County, Liberia. describes the impact on families in Fiama community. “Records show “A witch flight fell” over five family heads [have died “It started with a story that a witch from Ebola]. Some children have flight (plane) fell, so that is why been orphaned. Some children are people were dying”. Ibrahim Fonah, fending for themselves. There are a 32 year old from Port Loko Town, also orphans that were brought from describes one of the many rumours other communities to Fiama”. that spread through communities during the early stages of the Interviews from Lakpazee and Fiama outbreak. Dr Sesay, a medical officer Community, District 9, Liberia shares the impact of fear and denial 19
1.2 THE RESPONSE Box 2: Key Quarantine (73). However, this sometimes tools of the • Stopping an Ebola epidemic slowed down and inhibited Ebola response means prompt identification response workers. and their and isolation of infected people. challenges Ebola-infected patients must Safe burial be quarantined to prevent it • Ebola-infected dead bodies are spreading. extremely infectious; transmission • Many people have highlighted through ceremonial body washing the methods, extent and safety was common. Governments of of some quarantine policies all three Ebola-affected countries (189,190). The World Bank decided to provide safe burials for highlighted the insufficient supply everyone who died. Liberia also of food and other necessities to instituted cremation (195). some quarantined individuals • This required huge resources (191). In some cases, families broke (burial teams, vehicles and quarantine in order to buy food personal protective equipment), (192). coordination (with swab teams, laboratories, contact tracers) and Contact tracing planning (graves marked and • The identification and follow-up families informed). of persons who may have had • The deployment of burial contact with an infected person teams and the engagement (193). All potential contacts of communities to ensure safe of suspected, probable and burials lead to a reduction in confirmed Ebola cases need to unsafe burials and potential be systematically identified and transmission. put under observation for 21 days (the maximum incubation period Social mobilisation and community of the Ebola virus) (193). Efficient engagement tracing required a list of contacts • Supporting communities to and their location. In Sierra Leone identify and implement behaviour only 20-30% of the contacts in the change to keep them and their Ministry of Health’s database were communities safe was key. usable, others were too vague for • Encourage people to come outsiders to identify (194). forward if they were sick. • Many people do not have Patients and families needed the permanent addresses. There was confidence to know that they opposition to some of the tracers would be cared for. (194). Expansion of treatment infrastructure Travel restrictions • Care needed to be effective, • Governments of the most to create high survival rates, affected countries imposed and safe, so that Ebola was not travel restrictions with the aim of transmitted to health workers. preventing the spread of Ebola 20
1.2.1 NATIONAL RESPONSE Guinea, Liberia and Sierra Leone had “We believe a decentralised declared the Ebola virus disease epidemic response is going to be critical as a national health emergency by mid- to get us to zero in the shortest August 2014 and established National possible time.” Task Forces. The respective National Ebola Outbreak Response Plans were Liberia and Guinea set up similar subsequently developed; the aims of decentralised national structures but which were collectively agreed at the the information flows and local-level WHO Accra Ministerial meeting in July structures varied among the countries 2014 (28): (30). An example of this decentralised coordination can be seen in figure 3, 1. Ensure effective coordination of the which shows the social mobilisation outbreak response activities at all pillars and sub-committees developed in levels. Sierra Leone, Guinea and Liberia during 2. Strengthen early detection, the outbreak. investigation, reporting, active surveillance, and diagnostic capacity. The enormity of the required response to 3. Institute prompt and effective case Ebola meant the governments of Guinea, management and psychosocial Liberia and Sierra Leone quickly called support while protecting the health for an international response effort. of health-care workers involved. Foreign Minister Samaur W. Kamara of 4. Create public awareness about Ebola, Sierra Leone in September 2014 said (31): the risk factors for its transmission as well as the factors that do not “Based on the knowledge we had, entail any risk, and its prevention and control among the people. based on the advice we were given by our international partners, we A key component of the national mobilised to meet this unfamiliar response was to set up, with threat. But the staff, equipment, international support, coordinating medicines and systems we had mechanisms to contain the spread of the were inadequate and this slowed disease. our effective response.” In Sierra Leone, the Government created a National Ebola Response Centre (NERC) that, together with the United Nations Mission for Ebola Emergency Response (UNMEER), served as a command and control structure for many partners in the Ebola response. The NERC oversaw 15 District Ebola Response Centres (DERCs) with a feedback loop between the NERC and the DERCs. These DERCs also coordinated with the district health management teams for technical aspects of the response, and were joined by national and international partners. According to Stephen Gaojia (29), Sierra Leone Incident Manager for Ebola: 21
Figure 3: Social Mobilisation pillars and sub-committees developed in Guinea, Liberia, and Sierra Leone: a example of decentralised coordination in the Ebola response (30). Liberia’s Social Mobilization Pillar National-Level Coordination Structure for EVD Response (Current) Chair: Health Promotion Division MOHSW Co-Chair: UNICEF MOH + WHO + MOH + Liberia + MOH + CDC MOH + UNICEF Crusaders for Peace CSOs + RBHS MOH + JHU/CCP Media Support and Message and Materials Interpersonal Mobilization and Research, M&E Documentation Development Communication Field Support Training Sierra Leone’s Social Mobilization Pillar* National Emergency Management System (Ebola) Social Mobilization Chair: MOHS HED District SM Co-Chair: UNICEF EOC Liaison Working Groups Committees Western (Urban) National Pillar Committee (Coordination, Monitoring and Media Group Western (Rural) Evaluation): HED, UNICEF, Bo Sub-committee Chairs Faith Based Bombali Organization Group Bonthe National Sub-Committees Youth and Adolescent Kailahun Kambia Group Kenema C at Household-Level Sub-Committees 1: Koinadugu Capacity Building Group Kono Sub-Committees 2: Messaging IPC with Healthcare Monyamba and Dissemination Workers Group Port Loko Pujehun Special Needs Group Sub-Committees 3: Special Needs Tonkolili (same as subcommittee 5) Guinea’s Social Mobilization Pillar National Coordination Against Ebola Surveillance Communications Patient Care Sanitation Research Rumor Public Social Prevention Management Relations Mobilization Communications 22
1.2.1 INTERNATIONAL RESPONSE Figure 4: United States $ 1,955M By 14th October 2015, the international Pledged World Bank Group $ 1,618M community (over 50 nations and many contribution European Commission $ 955M donor organisations) had mobilised over United Kingdom $ 687M of funding $8.2bn USD to finance the Ebola response African Development Bank $ 525M to Ebola International Monetary Fund $ 394M (32). The top five highest contributing response Germany $ 281M donors included the US which gave $2.1bn by donor France $ 265M USD, the UK $687m USD, the World Bank (25 highest Japan $ 173M $1.6bn USD, the European Commission China $ 129M contributors) $955m USD and the African Development Paul Allen Foundation $ 100M (USD)(196) Canada $ 100M Bank $525m USD (33) (see figure 4). Netherlands $ 83M Sweden $ 81M It is difficult to estimate how many Norway $ 63M health workers were involved in the Russian Federation $ 55M response. The World Bank and the Bill & Melinda Gates Foundation $ 54M Belgium $ 51M African Development Bank estimate that Australia $ 38M more than 39,000 health workers took Saudia Arabia $ 35M part alongside equally large numbers of Denmark $ 32M surveillance and community mobilisation $ 29M Special Relief Fund staff (34). Thousands of response workers Mark Zuckerberg & Priscila Chan $ 25M $ 16M were trained, including 4,500 frontline Islamic Development Bank Finland $ 13M workers at the Institutional Organisation for Migration’s (IOM) National Ebola Training Academy in Sierra Leone. In April Table 1: Allocation of funds (%) 2015, the World Bank estimated that allocation more than 1300 foreign medical personnel of disbursed Country Guinea 13% were taking part including more than 850 funds by Sierra Leone 20% volunteers from other African countries country, (through the African Union Support to the Ebola-affected country recipient (not specified) 28% Ebola Outbreak in West Africa (ASEOWA). category, and Approximately 1,000 WHO and nearly Liberia 31% purpose (36) 200 UNMEER personnel supported these Other country 1% health workers mainly in logistic and Unspecified 7% coordination roles. Affected countries Recipient 33% This was a considerable mobilisation of (Multi-lateral) Affected countries resources but there has been widespread 14% (Bilateral) criticism of the time lag between the International NGOs 12% outbreak and the response. Six months International into the crisis, only 30 medical response 23% Organisations teams were on the ground. Most of the Research institutions, health workers and support teams and 31% Regional & local NGOs the financial and equipment/facility Other recipients 13% investment arrived mid-way through the Purpose Response 71% crisis (35). Table 1 shows the allocation of funding ($6.6bn USD) from 46 Recovery 9% contributing partners between September Research and 4% 2014 and May 2015 as reported by Development UNMEER, stratified by country, recipient Other 16% type and purpose. 23
1.2.3 THE UK’S ROLE IN THE EBOLA RESPONSE With its 450-year connection to Sierra Njala University and collaborations such Leone, the UK government took the lead, as the King’s College Hospital Sierra committing over £427m to support the Leone Partnership. Table 2 shows some battle against Ebola. Its links included of the key projects in the UK Ebola Sierra Leoneans working for DFID, links response. to NGOs, an existing partnership with 1.2.3.1 MEDICAL AND TECHNICAL SUPPORT DFID funded the construction of equip communities with the knowledge 6 treatment centres, around 200 and tools to tackle Ebola. Their review, community care units and supported ‘Reducing Transmission of Ebola in Sierra over 1,400 treatment and isolation beds Leone Through Changing Behaviours - more than half the beds available for and Practices’ reports an increase in Ebola patients in Sierra Leone (37). In community knowledge of Ebola from addition to this, DFID focused much of 39% to 69%, reduction in stigma from its resource allocation on improving 94% to 41% and an average of 97% safe burials, supporting a total of 140 of burials being classified as safe and burial teams, and expanding social dignified medical burials (38). mobilisation efforts to educate and Table 2: Project Title Budget Start Date Summary of projects in Emergency Support to Respond to the Ebola £79.41m Jul-14 the UK Ebola Virus Disease in 2014 (Urgent Needs) response Sierra Leone Kerry Town Ebola Treatment Facility £89.10m Sep-14 Ebola Treatment Centres in Sierra Leone £45.90m Oct-14 Reducing Transmission of Ebola in Sierra Leone £12.55m Oct-14 Through Changing Behaviours and Practices Ebola Care Units in Sierra Leone £43.40m Oct-14 UK Response to Ebola Crisis Through Support for £22.13m Oct-14 UNMEER and the Wider UN System UK Support to Ebola Crisis Through Support for £33.44m Oct-14 the Joint Inter Agency Task Force (JIATF) UK Response to Ebola Crisis Through Establishing £12.15m Nov-14 Laboratories Ebola Central Health Care Supply Chain Platform £7.20m Nov-14 Match Funding for Ebola Response £6.20m Dec-14 Regional Preparedness £19.20m Jan-15 Transition from Ebola Response to Early Recovery £54.0m Mar-15 Ebola Vaccines Insurance £1.10m Apr-15 24
These projects faced many challenges. deployed over 100 staff to run three new One such challenge was deciding where laboratories in Sierra Leone. This reduced to prioritise the resource allocation. the turnaround time for samples from 4-5 High risk groups included communities days to less than 24 hours (39). However, geographically related to others with problems with backfilling in the NHS known Ebola cases; communities with prevented more staff contributing. attitudes and practices known to increase There were reports that more than ten Ebola transmission risk; as well as times as many staff volunteered as were vulnerable or marginalised groups, such able to go to Sierra Leone (39,40). Some as women and young people (38). DFID have argued that the UK’s West African also faces the challenge of ensuring that diaspora healthcare professionals could the use of donor contributions and other have been utilised further, especially forms of received capital are verified, considering their unique position to especially as programmes draw to a close. shape culturally appropriate and socially Nonetheless, the primary challenge DFID legitimate response programmes (41) faces in terms of funding resources is (see box 3). a temporal one: whether to prioritise short-term or long-term interests. The IDC has recommended in its recent Unpredictable spikes in the demand for report on the Ebola response that DFID resources to tackle health emergencies, fund a formal structure to facilitate more make it more difficult for DFID to volunteering by NHS staff (40). However, adequately fund the more sustainable, as highlighted by Health Poverty Action, longer term goals necessary for health sending large Western teams of health systems strengthening (38). workers has questionable benefit when compared to the long-term The UK also provided human resources strengthening of local health systems through NHS volunteers. Over 150 (42,43). NHS Staff travelled to Sierra Leone, with salaries covered by the NHS and Public Health England and in addition 1.2.3.2 LOGISTICAL SUPPORT The UK provided emergency food, for children. DFID also funded health equipment, and logistical support promotion radio programmes in eight to the Sierra Leonean government’s local languages, in part through working Ebola response. It also financed Small with BBC Media Action (44). and Medium Enterprises (SMEs), and psychosocial and social protection 25
1.2.3.3 RESEARCH The UK has also been at the forefront of response and recovery programmes. academic research into Ebola including DFID co-funds vital research on Ebola, epidemiological, anthropological, including clinical trials which have led to social and economic research critical to the development of promising vaccine understanding the underlying causes candidates (6,45). of the Ebola outbreak and informing Box 3: Examples of UK’s African Diaspora The wider role of the African Diaspora The UK’s involvement in the Ebola Response: in African development: African • Sierra Leone UK Diaspora Ebola • Remittances to Africa outweigh diaspora in Taskforce (SLUKDET) has been Western Aid to the continent, the Ebola involved in negotiations with accounting for an average of 5 response Public Health England, the NHS per cent of GDP and 27 per cent of and health and DfID to recruit volunteers. exports (197,198). systems They also delivered cultural • Members of the African diaspora strengthening awareness training to NHS and have contributed significant international volunteers prior to financial capital to African their deployment (172). countries in investment capital • SLWT have worked with local and the purchase of goods and grassroots organisations to services from the continent (175). provide protective raincoats to • Many professionals from 750 commercial motorbike riders, the diaspora temporarily or as well as PPE and hand-washing permanently return to their facilities and protective raincoats country of origin. This brain (173). circulation and return migration • EngAyde has provided protection strengthens knowledge and care for Ebola children and production in African countries psycho-social support for Ebola (177). affected families and local health care workers (174). 26
1.2.3.4 RESTRICTIONS ON TRAVEL The UK government and 39 other nations and could consequently increase the restricted direct flights to the region and uncontrolled migration of people from quarantined all returning health workers. affected countries, raising the risk of These measures have been described as international spread of Ebola”(48). Fears disproportionate and without scientific of such an overreaction contributed to justification and may have deterred the WHO’s decision to delay putting out other international health workers an international alert. (46,47). The WHO raised concerns that they could “cause economic hardship, 1.3 UNDERLYING CHALLENGES: HEALTH SYSTEMS AND INFRASTRUCTURE The Ebola outbreak in West Africa reconstruction efforts. This legacy was centered on a region with a of conflict and shortcomings in the shared recent history of weak health reconstruction efforts are key to systems, transnational civil war and understanding many of the weaknesses internationally led post-conflict exposed by the outbreak. “The health system became seriously exposed by Ebola, because when it came it killed a lot of health workers and community people …the basic principles of prevention and hygiene were lacking.” Samuel Borbor Vandi, NGO worker (Kailahun District, Sierra Leone) 27
1.3.1 HEALTH SYSTEMS IN GUINEA, LIBERIA AND SIERRA LEONE Some health systems in West Africa, particularly by providing services for such as those in Nigeria and Senegal, child and maternal health and HIV/AIDS. have the capacity to control Ebola However, crucial problems in the health epidemics (49,50). Sierra Leone, Guinea systems of these three countries were re- and Liberia have all made some progress exposed by the Ebola epidemic (50–53). in strengthening their health systems, 1.3.1.1 GAPS IN HEALTH FINANCING AND GOVERNANCE The WHO’s estimate of minimum in Guinea and Liberia between 2006 spending to provide basic lifesaving and 2012. However, spending is still health services per person per year is well below what is needed to fund a $44 USD (54). The governments of all functioning health system. The resulting three Ebola-affected countries spend gap in funds for essential services is significantly less than this, as shown manifested in out-of-pocket expenditure. in table 3. All three countries receive Sierra Leone and Guinea have more aid for health from donor countries than triple the WHO recommended and agencies, however much of the proportion of spending on health by out- funds provided are for specific disease of-pocket expenditure (55). This makes programmes, such as HIV/AIDS, malaria it more likely that poorer people will be and TB (55,56). Spending on health pushed further into poverty as a result of per person per year has increased in paying for their health needs. the region and has more than doubled Table 3: Health GUINEA SIERRA LEONE LIBERIA financing figures (57) Expenditure per person $9 $16 $20 per year spent on health (USD) Estimated Proportion of 66% 76% 21% total health funding from out-of-pocket expenditure Amount of External $46m $93m $89m support for health per annum (USD) Strong governance is needed to enable highlighted the absence of accountability effective health systems strengthening. mechanisms and conflicting policies. The In all three Ebola-affected countries, trickle down effects of delayed decisions there have been attempts at health at national level are key barriers to the systems reform, such as the notable Free development of health systems in all Health Care Initiative in Sierra Leone. three countries (58–60). Governance experts, however, have 28
1.3.1.2 CHRONIC SHORTAGE OF HEALTH WORKERS Strong governance is needed to enable highlighted the absence of accountability effective health systems strengthening. mechanisms and conflicting policies. The In all three Ebola-affected countries, trickle down effects of delayed decisions there have been attempts at health at national level are key barriers to the systems reform, such as the notable Free development of health systems in all Health Care Initiative in Sierra Leone. three countries (58–60). Governance experts, however, have Box 4: Guinea Liberia Health • 1 health worker per 1,597 people • 1 health worker per 3,472 people workforce • 1 public health institute with • “Emergency Human Resources prior to limited capacity Plan” (2007) designed to rebuild the Ebola • $25 USD health expenditure per its health workforce and double outbreak capita (4.7% of GDP) the number of nurses but had (64,65) limited overall success Sierra Leone • $44 USD health expenditure per • 1 health worker per 5,319 people capita (10% of GDP) • 10,917 nurses and midwifes in the country • $96 USD health expenditure per capita (11.8% of GDP) Health worker absenteeism is also a than 2% in 2014. A ReBUILD research significant problem, particularly in rural consortium attributes this to the or remote areas and with those who introduction of the Free Health Care work in lower-level health facilities (66). Initiative (FHCI) in April 2010 which However, national rates of absenteeism included fee exemptions for healthcare are quite low in Sierra Leone – at less workers (67). 29
1.3.1.3 RESOURCES FOR HEALTH SERVICE DELIVERY: LACK OF SUPPLY WILL KILL DEMAND Compounding the human resource delivery, as summarised in Box 5. The crisis is a lack of healthcare facilities. Ebola outbreak has revealed the inability Community mobilisation is often of many communities to mobilise fraught with geospatial complications in resources from both national and disconnected urban slums (68) and vast international sources, such as medical rural areas (69) hindering the efficient equipment, trained health workers, and distribution of goods. supplies for quarantined Ebola victims (40,42). Sierra Leone, Guinea and Liberia have all made some improvements to the delivery of services in recent years. For “[We need] training and posting example, the Free Health Care Initiative of qualified health staff, logistics in Sierra Leone, mentioned in the support, construction and previous section, removed user fees from rehabilitation of health facilities public maternal and child health services. (PHUs), and more drugs. It has to However, Sierra Leone still has some of the highest rates of maternal and child do a lot with resources.” deaths worldwide and the health system Dr Tom Sesay, Acting District Medical still fails to deliver most of the WHO’s Officer (Port Loko District, Sierra Leone). ‘building blocks’ of good health service Box 5: • Comprehensive: A comprehensive • Person-centred: Services are Characteristics range of health services is organised around the person, not of good provided, appropriate to the the disease or the financing. health service needs of the target population. • Coordinated: Across types of delivery, • Accessible: Services are directly provider, types of care, levels adapted from and permanently accessible of service delivery, and for WHO building with no undue barriers of cost, both routine and emergency blocks (70). language, culture, or geography. preparedness. • Continuous: Service delivery across • Efficient: To achieve the core the network of services, health elements described above with a conditions and levels of care. minimum wastage of resources. • High quality: Services are effective, safe, centred on patient’s needs. 30
Poor service delivery has been a services, the attempts to carry sick people significant challenge to community for miles on stretchers and the desperate mobilisation and community-led lack of medicinal drugs. The Ebola efforts in the Ebola response. It is well Response Anthropology Platform (ERAP) documented that in Sierra Leone the suggested that provision of a “solidarity inability of health institutions to keep kit” to quarantined patients – including up with the demand for Ebola treatment a charged phone, mobile credit, and led to patients seeking out understaffed food – could mitigate the isolating community health clinics not integrated consequences of quarantine (75). into to the broader health system. The sparse healthcare available Lack of resources is not a purely was underscored by fragile physical economic issue. When clinicians or infrastructure, according to evidence technology are missing because of submitted by The Malaria Consortium inadequate ancillary health services (76). An adequate level of general (71,72), trust in health services is eroded. infrastructure is essential for the effective In an extreme example, in Nimba county coordination of public health strategies. and Bomi county, Liberia, families in For example, an outreach campaign is some communities were boarded up unlikely to be successful when schools in their homes without food or water are closed, households have little access because there was no medical care or to the media, literacy levels are low and isolation facilities (73). This fostered there are not enough clinicians to convey fear, resentment and stigmatisation in a particular message (77,49,78,79). The the affected communities, presenting success of community mobilisation patients with what felt like a death efforts is crucially dependent on sentence. Similarly, the lack of consistent adequate resourcing and the continued food delivery to quarantined patients in development of infrastructure. Monrovia resulted in feeling of exclusion from their communities (74). Many of the rural responses in our interviews described the absence of medical “We talked to people in quarantined homes and counselled them, because most people in quarantined homes are heart broken.” Mrs Mariatu Songo Kanu, Religious Leader (Port Loko District, Sierra Leone). 31
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