Ebola: How a People's Science Helped End an Epidemic - Paul Richards (2016)
INTRODUCTION
Ebola1 is a disease of social intimacy. Infection spreads among those who care for the sick, including those who prepare the dead for burial. There is no cure, or treatment beyond palliative care. Death rates can be as high as nine in ten cases. Discovered in central Africa in the 1970s, the Ebola virus has caused around twenty known outbreaks to date, all in Africa. An outbreak in Upper West Africa in 2013 quickly turned into an epidemic, the world’s first, mainly affecting Guinea, Liberia and Sierra Leone. This book tells the story of that epidemic, and draws lessons. Specifically, it argues that a need to understand Ebola poses a challenge for every citizen and every community at risk, and not just for medical science.
The disease
The reservoir for the Ebola virus is maintained in animal populations in the African forests, perhaps species of bats. From time to time, humans living on the margins of these forests become infected, possibly as a result of hunting animals carrying the virus. This initial crossover is known as a spillover event. Further transmission occurs when carers or sympathizers come into contact with the body fluids of someone sick with Ebola. To halt human-to-human spread patients need to be isolated and communities quarantined.
The virus is not airborne, and thus Ebola is not very contagious. It can be conveyed only by contact with the body fluids of an Ebola victim. Peter Piot, one of the discoverers of the virus, stated that he would not fear to sit next to an Ebola case on the London Tube, provided the person was not actually vomiting.2 Unfortunately, however, Ebola is highly infectious. One droplet of body fluid absorbed through mouth, nose or eyes, or a cut in the skin, is enough to transfer the disease.
The Ebola virus was acquired by germ-warfare laboratories during the Cold War, and feature films have been made about what an escape might entail. A global panic was sparked by the arrival from West Africa of airline passengers with the disease in Europe and the United States in mid-2014. Predictions were made of millions of deaths within months. Several governments, including those of Britain and France, suspended flights from the region, and helped mount an international effort to contain the disease, undermined, of course, by the flight bans they had imposed. But whoever said government was a coherent art?
The doom-laden predictions did not come true. Liberia, the worst-affected country a year earlier, was declared free of the disease in mid-2015, though there have been three case clusters in that country since, probably related to the longer-than-anticipated survival of the virus in certain body fluids such as breast milk and semen. Guinea and Sierra Leone were declared Ebola free by the World Health Organization on 7 November and 29 December 2015 respectively, but like Liberia have seen some localized and quickly contained outbreaks linked to survivors.3
Effectively, the epidemic has now ended, and international attention has turned to other things. But a short memory with regard to Ebola is foolhardy. The lessons of Ebola need to be thoroughly understood, including lessons about the need for broadly based factual understanding within populations, and not just among experts, as a framework for control.
This is because Ebola attacks the very basis of family life - the daily care we provide for each other. In particular, it punishes those who care for the sick. In the complex and ceaseless web of global interactions this is a perverse sanction on those who are most assiduous in exercising their social duty. This perversity matters for us all, for mutual care fosters stable communities, and thus stable interaction between communities.
Ebola might have, but did not, destroy social cohesion in the three countries subject to the epidemic. Entire communities might have been scared into mass flight, but were not. Affected groups stood together and addressed a common threat. Local agents and international responders, working together, discovered something not known hitherto - how to end an Ebola epidemic.
The rest of the world ought to ponder the courage and commitment to community values displayed by these actors in reducing the Ebola threat. What would have happened if Ebola had coursed through neighbourhoods in London or New York? Would the local population have stood so firm? Or would social dereliction and disorder have been widespread?
More specifically - and this is key - would urban populations in the ‘developed’ world have formed such an effective combination with medical responders as emerged in the villages and slums of Upper West Africa? It thus seems important to ask how, precisely, that combination emerged.
A people’s science
Epidemiology is a people’s science. Everybody has to get involved. Below a certain threshold of participation mass vaccination campaigns cease to work. Fear that a control programme has hidden motivations or unacknowledged consequences - that polio is secret sterilization, or that the childhood ‘triple’ vaccination causes autism - can wreak havoc with the statistical effect necessary to halt spread of a disease.
And statistical effects are at times among the hardest concepts for humans to grasp. They often clash with what we think we know, personally and individually. It is this presumed personal knowledge that powers rumours. The consequences of Ebola are seen as evil. So it cannot be a kindly touch that spreads the disease. There must be demonic forces at work. And so we cast around and rather easily find the evidence, chosen from a large repertoire of ideas we maintain to link risk and blame.4 Immigrants, other countries, bad leadership, germ warfare or the feckless poor spring all too readily to mind.
There was a great danger that the rumour mill would defeat all attempts to control Ebola in Upper West Africa. Social media and other gossip channels of a more traditional kind were alive with plots and conspiracies. Why did the disease affect areas known to vote for the opposition, if Ebola was not a plot to rig the next election? Why did a group of US army scientists arrive in the region to take blood samples, if it was not germ warfare? And so on, on and on.
And yet in the case study examined in Chapter 6 rumours evaporated as quickly as they came. Faced with the realities of the disease the common folk learnt to think like epidemiologists.5 As interestingly, epidemiologist began to think like the common folk. Merged understanding was crucial to epidemic control. This book explores how and why the usual small talk was often rather rapidly abandoned, and replaced by a people’s science of Ebola epidemiology.
Techniques of the body
When, in mid-2014, the threat of an Ebola epidemic in West Africa loomed, there was a clamour for advanced technological solutions, from vaccines and drugs to robot nurses. Yet the epidemic was reduced not through biomedical treatments, or machines substituting for human agency, but through better understanding of what was necessary to eliminate risks of contagious bodily interactions.
Some lessons were applied from earlier outbreaks. But by and large things began to change positively in Upper West Africa only when communities accepted, or improvised, changes to their own established repertoires of care.
Ebola control in Upper West Africa centred on the modification of what the great French anthropologist Marcel Mauss called ‘techniques of the body’. Mauss was one of the first anthropologists to develop an interest in technology, not from a love of devices and machines, but from the perspective of skill, performance and effective use of tools. He proposed to start technology studies with the analysis of the human body.6
This is an interesting but unusual perspective on technology, as I know from personal experience. For a number of years I taught and researched social aspects of technology from a Maussian perspective. My line caused much head-scratching, not least among my employers, who would have preferred it if I had focused on more ‘relevant’ topics such as the potential of nanotechnology or reducing public resistance to genetically modified foods.
My interest in technology had instead gravitated towards foundational aspects - those that Mauss’s mentor and colleague, Emile Durkheim, would have called elementary (in the sense of elemental) forms.7 The elementary forms of technology, I argued, are most readily apparent through the study of techniques of the body.
The West African Ebola epidemic is an example of why the elementary forms of technique matter. Vaccines take time to develop, and that time period is not easily shortened. International authorities lifted normal safeguarding procedures to speed Ebola vaccine development, but trials have been made more difficult by the downturn in infections. This rapid drop in numbers of people infected was a product of the rapidity with which changes in body contact and body technique were implemented.
Control of Ebola, therefore, fits well within the tradition in technology studies initiated by Mauss, of seeking to understand tools, machines and prostheses as extensions of, and not as replacements for, human agency.8 A central prescription of this approach is never to lose sight of the hand wielding the tool, the brain behind the hand, and the socialization behind the brain. In the case of Ebola, to understand the spread of disease we need to grasp how certain embodied skills and performances are deeply bound to social contexts. Specifically, this means paying attention to topics such as how the sick are nursed, and how the dead are buried.
The argument
This book traces the response to Ebola in 2013/15. I have been asked ‘why have I written a backward-looking account of the epidemic?’ Would it not be better, especially as a contribution to a series labelled African Arguments, to discuss what Ebola implies in terms of Africa’s pathetically weak health systems? Is it not the case that Ebola shows those systems need to be vastly strengthened? And is it not a scandal that elites escape for better medical treatment to the developed world, leaving their fellow citizens to suffer unaided? This approach is to ask for a study taking the facts of the epidemic as given and focusing on equity and justice. Ebola, I suggest, teaches us something different. It warns us against wilful ignorance. People’s science, I argue, is the antidote to that ignorance. It is important we understand the need for people’s science.
The argument will be controversial, so it is better that I state it up front. In the circumstances in which Ebola arrived in Upper West Africa better-functioning health systems might only have made the epidemic worse. Where there is no prior familiarity with Ebola, and where it takes a laboratory reference to diagnose the virus, and thus to differentiate between several competing diagnoses with symptoms similar to Ebola, such as malaria and Lassa fever, health facilities would still have spread Ebola to medical personnel and other patients (nosocomial infection), however well equipped and staffed they might have been. Imagine the rate of spread of the disease if every rural health post in Upper West Africa had possessed a functioning ambulance for referral of cases, in circumstances where there was no experience of Ebola or knowledge of the specialized nursing techniques needed to keep carers and patients safe from cross-infection.
So Ebola is less a disease of poverty than a disease of ignorance. And that ignorance has to be addressed, since it extends to us all. In particular, there are as yet no effective ‘high-tech’ treatments available anywhere, irrespective of how well funded or accessible to users the health system might be.9 Patient care, even in hospitals capable of the highest levels of biosafety standards in the developed world, requires the same kind of palliative response offered by a tent in the bush - rehydration therapy and relief of symptoms.
A further important point to be grasped is that Ebola is one of a family of emergent diseases. These are ones where humans or domestic animals become exposed to pathogens through moving into a new environment, or where the pathogen has mutated. This means that in every such outbreak responders are, to a degree, groping in the dark. Response and knowledge must co-evolve.
In the initial outbreak of Ebola in Guinea in December 2013 even the experts in emergent viral diseases were wrong-footed. For a time they placed undue stress on the risks posed by forests and hunting, with the result that many people thought themselves safe from infection because they lived nowhere near a forest, or never ate the bushmeat supplied by forest hunters.
Perhaps the key area of ignorance concerned technologies of burial. It turned out that one of the drivers of the epidemic was participation in large funerals. These were (in the terms of the responders) ‘super-spreader events’. Large funerals were, in particular, a feature of the powerful male and female sodalities (so-called secret societies) widespread throughout much of the Upper West African forest belt. Yet the burial procedures for society elders were known only to society members, who were sworn to secrecy. Thus a priority for Ebola control was to enlist the support of the sodalities. Only members knew the practices and could thus properly assess and respond to the risks.
There was also a problem that external responders at times confused burial ritual with the processes of preparing the body for such rituals. In much of the region there are no professional undertakers. The family prepares a dead body for burial. It is this preparation, not the funeral itself, that poses the main infection risk when an Ebola death has occurred.
In the developed world do-it-yourself burial is confined to a long-forgotten history. Few, even among the anthropologists, ever sat down to make systematic accounts of body-handling techniques involved in burial practices. Funeral rites are covered in the field notes of anthropologists because ritual is a focal concern; but the practices of undertaking are often a blank page.
And yet it turned out that body-handling was one of the key infection pathways powering the Ebola epidemic. It also turned out that this was everyday knowledge among the communities. Responders had but to ask. Once anthropologists did ask - once popular knowledge was shared - it became much clearer what needed to be done to end transmission.
Attention will also be given in this book to what the anthropologist Mark Hobart has termed the ‘growth of ignorance’.10 By this, he means the wilful cultivation of this condition as an aspect of human development. We generate ignorance when we choose not to know.
A British politician once stated that the taxpayer could no longer afford to fund irrelevant anthropological studies of prenuptial practices in the Upper Volta.11 Ironically, it has now cost the British taxpayer dear to understand the perhaps equally esoteric-seeming topic of the post-mortem practices of communities in regions neighbouring that great West African river.
A specific instance of the cultivation of ignorance, relevant to the Ebola epidemic, concerned home nursing. To international responders this topic was taboo, since it would encourage people to care for their loved ones at home instead of having them transferred to a biosecure care facility.
Nevertheless, the likelihood of home nursing was clear. The disease has two phases - a ‘dry’ and a ‘wet’ phase, both of which last for about three days, until death or onset of recovery. Patients are relatively safe to be moved during the dry phase, but Ebola is not yet apparent because the symptoms are hardly different from those of malaria. Any movement in the ‘wet’ phase would be highly hazardous, unless undertaken by a specialized team with protective gear and an Ebola ambulance. Few patients would seek help from a treatment centre until the diagnosis was obvious. But the only patients who could be reached were those living in areas with cell phone coverage (to phone a special ambulance helpline) and roads for the ambulance to travel upon.
Yet requests for a home care protocol to reduce the risks to those forced into caring for their family members in situ at first fell on deaf ears. I was told by one medical charity that it would be ‘unethical’ to produce such a protocol. It was (literally) unthinkable. However, knowledge emerged from community improvisers. One Liberian nurse, unable to find any hospital to admit her family, made protective suits from plastic sheets and bin bags, and safely nursed her father and two other family members through the crisis (see pp. 122-3).
International responders learnt from these kinds of activities, and home safety protocols were later devised (see Chapter 5). So ignorance is a choice. We choose to ignore the topic of techniques of the body at our collective peril.
Who am I writing for?
Who is the intended audience for this book? Top of my list I would place those who consider themselves citizens of the world, with an interest in the health of their global neighbours, and who, in a spirit of international solidarity, know that an epidemic disease in Upper West Africa potentially affects the health of all. Ebola is a fearsome disease, but learning how West Africans have coped with it is an antidote to fear and confusion.
Students of technology, public health and nursing are also, for obvious reasons, close to the top of my list. The book’s argument focuses on embodied skill, and how new techniques of the body can be developed, in even the most challenging of conditions. All three professions just mentioned require an understanding of the nature of skill, and in particular how to change skill sets that become counterproductive. Yet too often the topic of embodied technique, and how to foster it, is downgraded relative to theoretical knowledge.
The sociologist of technique Tim Dant carried out an innovative study of British car repair.12 He found the technical manuals remained pristine in the boss’s office. Bad roads, and bad drivers, knock vehicles out of shape. Much car repair concerns the knocking of car bodies back into shape. This is not an exact science. Apprentices have to learn how hard to hit. A guiding hand is of more use than a car-repair manual.
Learning how to cope with Ebola is not an exact science either. The science of Ebola is largely a matter of having insight into the embodied experience of care, and knowing how to guide that embodiment into new, safer pathways.
In addressing skill formation and the materiality of care considerable emphasis will be placed on the need to assess social context. Every day we are bombarded with news about innovations that will - it is alleged - revolutionize our lives. Human problems will not be solved with machines alone. Ebola is a stark illustration of this message. Hands, brains, task groups and social values continue to matter as much as tools and equipment, and no study of technical (or medical) innovation makes proper sense without consideration of body technique in its social context. If Ebola epidemiology is not an exact science, it is not exclusively a medical science either; it is a social science as well.
I hope also that what I write will hold some interest for the large number of volunteers who took part in the Ebola response. I admire without reservation those who dropped everything, and were willing to risk their lives, in responding to a desperate and perplexing social need. This includes national health professionals and community volunteers from the three most affected countries, as well as the large numbers of international responders, including military personnel. What they achieved in such a short time, and against such heavy odds, in helping to create a people’s science of Ebola control, is remarkable. Skilled inventiveness was an important aspect of their contribution, and this book endeavours to capture that point.
Possibly I will also retain some readers from my earlier academic work on techniques of agrarian food security, explored in the book Indigenous Agricultural Revolution.13 I had originally wanted to call that book People’s Science, until my publisher stepped in, arguing booksellers would never know where to shelve it. Fortunately, booksellers today are electronic, and have the power of modern search engines at their disposal. So now I have a second chance.
But the perspective has changed. Indigenous Agricultural Revolution argued that African farmers often knew more about their own environments than the scientists attempting to help them. Ebola offers a new challenge. In dealing with an emergent disease, and the world’s first epidemic, neither responders nor communities knew at the outset what would work. But by collaborating to beat back the infection they generated novel shared knowledge. It is the importance of this co-production of epidemiological knowledge to which the present book draws attention.
What this book does, and does not, argue
In the following pages some evidence is provided that a downturn in Ebola was under way in some parts of the Upper West African region before the international response was fully elaborated. One reader of an earlier draft of the manuscript wondered whether I was implying that the international response was unnecessary. There are two points I need to make to guard against any such interpretation.
The first is to caution that we do not yet properly understand why Ebola faded out in Upper West Africa. There is some (as yet unpublished) evidence that some groups of people (notably family carers) may have developed a degree of immunity to the virus, and this might have helped to end local outbreaks.14 Only with published confirmation that such immunities exist, and more detailed analysis of the local distribution and downturn in cases, will it be possible fully to assess how much of epidemic decline was driven by conscious human adaptation to Ebola infection risks. But the claim made here is that local learning played some significant part.
The second point concerns people’s science. I use this label to refer to emergent knowledge concerning adaptation to Ebola risks distributed across a population comprising affected communities and local and international medical responders. In other words, to the extent that the downturn in the epidemic depended, at least in part, on conscious human adaptation, I understand it to have been a joint effect.
Perhaps excusably, in a short book, I have given some prominence to the community aspect, but only because this is the least-documented aspect of this distributed response. Equally, I make clear that community learning was at its most rapid where there were open channels of communication between communities and medical responders. Future response to Ebola and other emergent zoonotic disease challenges should pay close attention to the need for effective multilateral learning.