Ebola: How a People's Science Helped End an Epidemic - Paul Richards (2016)
CONCLUSION: STRENGTHENING AN AFRICAN PEOPLE’S SCIENCE
The Upper West African Ebola epidemic of 2013/15 posed an important epistemological question - how does Africa fare when facing a knowledge challenge to which no party has comprehensive solutions in advance.1 The answer given in this book is that, on the whole, and despite some missed steps, Ebola responders on all levels including the local did surprisingly well in generating necessary new knowledge to beat a terrifying disease.
This book has been an attempt to capture some key aspects of that comprehensive and joint learning process, to ensure a platform can be retained or strengthened for continued readiness and future vigilance. It is striking how rapidly communities learnt to think like epidemiologists, and epidemiologists to think like communities. Local societal capacity to separate categories, and dissolve and reconfigure existing collective representations in response to empirical challenges played an important part.2
Thus knowledge has been expanded by the 2014/15 Ebola response, and organized science and West African communities can and ought to continue along a path of co-production of material and social solutions to the threats posed by emergent diseases. Clearly, however, it is a challenge to institutionalize such cooperation, especially given the extreme poverty of many Ebola-affected communities and the intense professionalization of much of medical science.3
It is thus worth itemizing some of the main gains of this co-evolved body of knowledge and experience. A first point is to note that the basic approach to control adopted in previous outbreaks in central Africa - isolation of the patient and safe palliative care - also worked at the larger scale of an epidemic involving several countries. The problems of scaling up are challenges of logistics. In particular, the scale and speed of response are crucial - the initial response in Upper West Africa was too slow, and too small in scale; Ebola outbreaks turn into epidemics in regions more densely populated and better provided with roads than the Congo forests.
Secondly, we now know that epidemic models for Ebola need to be recalibrated, to avoid inaccurate projections. This is because risk of infection is non-random in the population as a whole. Those who nurse and bury the sick are at very high risk of infection; those who pass the houses of the sick, even when they live on the same street, have a much lower risk. Abandonment of hand-shaking was probably less a risk reduction strategy than a simple gesture of abstinence signalling public recognition that other, more intimate techniques of the body required to be modified. But the distributed character of West African social intimacy - the network-like features of the extended family - is perhaps not yet fully reflected in epidemiological models.
Thirdly, evidence to suggest that specific sets of social or cultural features influenced the spread of the disease was limited. In the case of gender, infection rates were similar (50:50 for men and women) but the burdens of survival bore down more heavily on women than men. Poor urban neighbourhoods generated a greater-than-average number of high-risk contacts, though in the absence of comparable data for rural areas it is not clear whether this is because of higher levels of extended family networking among more recent migrants to the city. Older people had a greater risk of becoming infected because of their role in nursing and burial. But overall, the disease went as it came, with only limited regard for differences of gender, language, belief, wealth or country. This indicates the importance of general factors in epidemic advance and decline. These might include acquired immunity, but there seems little doubt that the Ebola response itself played a major part.
Fourthly, evidence exists to indicate that some significant part of that effectiveness was a community capacity to respond appropriately to Ebola risks. This was itself based on emergent local knowledge of the disease. The mechanism has been outlined in this book. Ebola-affected populations belonged to moral communities rich in social knowledge, and to those possessing this knowledge, patterns of infection soon became empirically clear. It was readily apparent that corpse-washing or sick-visiting spread the disease, because these were duties indicative of a proper degree of social concern, closely monitored for breaches. People took note if a duty was shirked. This flagged the perverse tendency of the disease to attack those most diligent in carrying out their duties to the sick and dead. Direct empirical inferences were soon drawn about the role of sick-visiting or corpse-washing in sparking further illnesses.
Fifthly, it was learnt (notably by responders such as Médecins sans frontières) that survival rates could be greatly improved by applying palliative treatment, focused on rehydration, to the highest standards possible. Higher survival rates in turn initiated a virtuous cycle of confidence in treatment centres and early reporting. Initial media attention paid to the very high death rates applicable to previous outbreaks of the Zaire species of the Ebola virus was counterproductive because it deterred patients from seeking help. Victims preferred to die at home, where the family would help a transition into the spirit world by guaranteeing a proper burial. Once Ebola came to be seen by responders as not dissimilar to cholera, also a disease which has no cure but which many patients survive through skilled nursing, fear began to dissipate.
Finally, modifications in techniques of the body were central factors in shaping an effective Ebola response, but knowledge had to be generated and applied across communities as well as among medical responders. Emphasis on changing techniques to reduce body contact was crucial in medical response - for example, in the correct design of safe treatment centres to ensure elimination of risks of accidental contact with infected patients. Nursing staff, ambulance crews and burial teams also underwent thorough training in safe donning and removal of protective clothing, and safe ways of treating patients or handling corpses. But less attention was paid to inescapable risks of handling sick and dead bodies at community level, even though these were predictable outcomes of local realities.
Biosafety care protocols for villagers ‘waiting for an ambulance’ were late additions to the tools of response. Protocols for hammock travel never arrived. ‘Safe burial’ was introduced not through local consent but through legal sanction. This failed to pay due regard to the social circumstance shaping body technique - that behind every movement, gesture or action lies a rich history of group support and mutually interwoven obligation.
Repeatedly, focus group members asked ‘why can’t burial teams be recruited and trained locally?’ The reason for this request was always the same - that only those socially known to the dead can show proper respect. Some communities demonstrated that they could indeed implement improvised safe nursing and safe burial on their own resources, but turning these demonstrations into an official part of a joined-up Ebola response remains unfinished business. One area where progress is especially needed is in the capacity to determine, quickly, whether burial poses a biosafety risk. Currently, all deaths have to be treated as Ebola deaths where the vast majority pose no threat, for want of rapid and safe field diagnostic kits, capable of being used at the local level.4
Something remains to be said about the general problem of how Africa responds to the challenge of science. Science has not always had a good press in Africa. It has often been oversold for reasons more to do with business or political interest. In the past, science was made a legitimation for colonial rule. Today, international corporate interests push science-based solutions to key problems such as African food security. Suspicions are bound to be aroused when science and salesmanship merge. But the fundamental idea of science - that prior judgements must be abandoned in the face of compelling empirical evidence - is of vital significance, if often ill served by development agencies, businesses and governments alike.
What Ebola adds to a more general debate about science in Africa is crucial. This is that, faced with an emergency, rapid empirical adjustments were made, both by communities and by organized science, resulting in the widespread adoption of changes to techniques of the body to reduce infection risk. It is a pattern of discovery to be preserved and developed. One community leader told me he now wanted every child to be taught about Ebola. Making Ebola a central plank for science teaching in schools and colleges might be a fitting and lasting living memorial to those who struggled, suffered and died in the great Upper West African Ebola epidemic of 2013/15.
Let me sum up the message of the book in a few final sentences.
Ebola is an emergent disease in Africa. No one knew how to deal with an epidemic, since this was the first epidemic (as opposed to earlier outbreaks). No technical fixes were available; no cures or viable vaccines had yet been developed. Everyone was a learner - responders and communities alike. The evidence suggests that this learning was broadly effective across all three of the worst-affected Upper West African countries - Guinea, Liberia, Sierra Leone - since downturn occurred across the map, and first in the areas where the epidemic first struck. Common elements were experience-based response, and the capacity of external responders to trigger or build on that local response. Where experience of the disease was limited, where the response was disorganized, or where people continued to take risks, perhaps to play politics with the Ebola threat, infection chains persisted.
It will be a long-term remedy if vaccines eventually prove successful, but what the Upper West African epidemic of 2013/15 revealed was an unexpected capacity for communities and responders rapidly to figure out jointly the nature of the infection threat, and then to respond practically in ways that accorded with the evidence. In short, Ebola infection was reduced because people were willing to suspend culture (pace Clifford Geertz) long enough to roll out some empirical common sense. The message for future Ebola control seems clear: consolidate ways of working effectively with local communities using basic methods of infection control, and recognize the existence and importance of people’s science.
POSTCRIPT
25 February 2016
The Upper West African Ebola epidemic has ended. And so has the international response. The tented Ebola treatment units have been packed. The foreign nurses and doctors have gone. On the outskirts of Bo the gate through which the sick were admitted to the Ebola field hospital swings creaking on the evening breeze, corroded by the chlorine with which it was so often doused. Two of the gatekeepers recreate for us a picture of the facility, and its workings, but only from the footprint left on the ground - a kind of concrete map of what was where. Here was the triage centre; there were the wards. That was where the protective suits were donned; this was where they were removed. The survivors left here; the dead left there. Already the site has become part of the local collective memory, barely eighteen months from when it was built.
So what of the future? No one knows whether the disease will return, or when. The virus lingers in body fluids of survivors and occasional isolated cases are expected from time to time. There may be further epidemics. For now, what remains is the local knowledge gained through coping with a crisis that shook social relations to their core. This knowledge is especially deeply entrenched in the first- and worst-affected communities, which coped largely alone. They are proud, even truculent, about their survival. Quick learning, quick thinking, improvised protection (with plastic bags and the like), and a dogged commitment to the idea of community, shines through their animated accounts. There is also anger that the world should have castigated them for sticking by the sick and dying. Few express a desire for the evident wealth spun off from the international response. Respect for what they did is what they ask.
There may yet be other Ebola epidemics in countries inexperienced in the disease. For sure, there will be other emergent diseases with strong social components to infection. Already the world is seized by a new instance - the spread of Zika virus in the Americas. The general lesson of the Upper West African Ebola epidemic needs to be widely understood, therefore. Common sense, improvisation, distributed practical knowledge and collective action are invaluable elements in a people’s science of infection control.