Strange deaths in a community from a disease that people had never heard of; this is immediately followed by a period of uncertainty and anxiety; and then a myriad of strange health workers appear, driving around in white jeeps with long antennas. They wear half jackets and brown boots and nervously wash their hands with incessant routine.
They all seem eager to help but bring bad news about a new disease called “Ebola.” The outbreak control efforts include a mixture of persuasion and days of community “lock-downs,” enforced by the military. The community is scared; they don’t know who to trust.
It has been more than a year since the start of the Ebola epidemic and the trend in incidence — the number of new infections in a given time period — is finally decreasing. We are beginning to see some light at the end of the tunnel. And even though the situation remains precarious, the most likely outcome — given what we know — is that the epidemic will eventually be controlled.
An issue of trust
Bill Gates’ recent TED talk and article in the New England Journal of Medicine has proposed many innovative ideas and approaches to prevent future outbreaks. However, the reality of the Ebola epidemic I witnessed working as an epidemiologist in Liberia showed me that the most important line of defense for the world might not be improved technology or quicker response times.
Instead, it actually may be the apparently simple task of addressing the issue of trust, which was unmoved at the center of the exponential spread of the Ebola outbreak in Liberia, Guinea and Sierra Leone, and at the heart of the challenges we faced during the response on the ground in Liberia.
With Ebola, in order to break the chains of transmission, family members must first trust responders enough to divulge the details of everyone they have been in proximity to since they became ill.
These people, now referred to as “contacts,” must trust the health authorities enough to inform them of any signs of illness and not try to suppress them with fever tablets — especially since the inevitable consequence is to be transported in an entourage of ambulances into the collection of white tents called “Ebola Treatment Units,” out of which very few come out alive.
Once admitted into an Ebola treatment center, those affected must trust the healthcare workers’ ability to treat them in the presence of overwhelming historical evidence to the contrary. Even at death, family members are expected to trust the folk in yellow suits, whose faces cannot be seen, for the burial of their loved ones.
Initially, very little account was taken of the cultural norms when emergency measures such as cremation were introduced. This inevitably led to further mistrust between local communities and those organizing response efforts, dangerously undermining these acts and fueling the epidemic.
There have been cases where a “contact” would decline to go into hospital for care of a suspected Ebola related illness — such behaviours would often be described as “irrigational” and “illogical.” Yet, in the past the same healthcare workers had failed to care for that person’s child who had malaria, or failed to prevent the death of a sister following child birth. How could these people be expected to suddenly trust the doctor that was never in their clinic all these years when they needed him or the government that never seemed to care about their health?
Need for a different approach
The period of introspection and retrospection is in full swing and Bill Gates is in a great position to reflect given that the Bill and Melinda Gates Foundation donated $50 million directly to the Ebola response. Similarly, polio eradication initiatives supported by the Foundation in Nigeria contributed indirectly to the control of the Ebola outbreak there. As with Gates’ talk, much of the international commentary has focused primarily on emergency preparedness and the need for more technological and biomedical advances to provide solutions.
The race for vaccine is well advanced. A few papers have been writing about the poor health infrastructure and human resources in Liberia, Sierra Leone and Guinea. However, this “outbreak narrative” fails to capture the complexity of the underlying factor — trust. I believe trust was largely responsible for the rapid and sustained spread and the failure of the initial control attempts of the deadliest Ebola outbreak in history.
The most important line of defense for us on the African continent is to rebuild our confidence in the capacity of our governments to prioritize the health of their citizens. This will require a complete turnaround in our health systems’ capacity to respond to the “routine” health needs of a population.
It’s only by responding to these issues in “peacetime” and building trust, that we will have the capacity to respond better to the next crisis. Trust in our health systems may not have prevented the outbreak, but it would most likely have prevented an outbreak of thousands of cases.
Earning confidence
To do this, we need governments in Africa to earn the confidence of their citizens in their ability to serve their interests and protect them. It is only by achieving this that we will rebuild trust in our leaders enough to gain value out of the more measurable and visible solutions highlighted by Gates.
As an infectious disease epidemiologist, my career has been built around measuring infectious disease burdens, determining trends, assessing risk factors and measuring the impact of control measures; this is my comfort zone. But I have learned that not everything that can be measured matters — and not everything that matters can be measured.
Trust exemplifies this. When a society loses confidence in those to whom they would normally turn to in times of need, they resort to actions that can generally be considered “irrational” and “illogical” and unwittingly spread the disease further.
Recognizing this limitation has changed the way I view the relevance of my profession in the context of outbreak control. Learning from and applying this knowledge will be the most critical challenge of the post outbreak period of the Ebola epidemic.