Why Read Another Article About Ebola? So We Can Learn From Our Mistakes
This month marks two years since the first Ebola cases were confirmed in Guinea. The time has come for recollection and reflection, frank opinions and lessons learned. What did we do well? What should we have done differently? What has Ebola taught us? I spent 6 weeks in Liberia, 4 1/2 months in Sierra Leone, and 6 months in Guinea during the epidemic, working with Ebola patients and focusing on strategies to fight the disease. These thoughts come from the experiences that I had working in the field.
What did we do well?
When you look at the numbers, it can be challenging to be upbeat about anything in our response to the Ebola epidemic: over 28,600 cases and 11,300 deaths in the span of 24 months; over 800 health care workers infected and more than 500 who died. Even now, we are still not confidently at zero, with recent flare-ups in all three countries.
Yet through all the doom and gloom, good things did happen that are worth remembering for future epidemics. For example, the systematic implementation of effective infection and prevention control measures not only helped reduce transmission of the disease but also established sound and healthy hygiene practices that one hopes can continue over time. These include the provision of safe and dignified burials, better hand-washing practices in the community, or making sure health care workers used adequate protection such as gowns or gloves with every patient interaction.
Addressing the needs of Ebola survivors belatedly became recognized as an integral component of the response. Despite a sluggish start (there weren't that many survivors at the beginning and everyone was overwhelmed), it quickly became apparent that Ebola survivors had unique needs that couldn't be ignored. Non-governmental organizations (NGOs) provided social support in the form of jobs, education and training to help provide job opportunities and reintegrate them into communities that had ostracized them. These groups also addressed survivors' specific medical needs such as uveitis (a late complication of Ebola affecting the eye, which as many as 40 percent of survivors may develop and which, if untreated can lead to blindness), PTSD or chronic pain. In Sierra Leone, a consortium of NGOs was instrumental in championing the medical needs of Ebola survivors after their discharge from treatment centers. In response to an alarming number of untreated cases of uveitis, they started a survivor eye clinic in the Port Loko district which quickly became a model that the government sought to adopt and expand, averting a potential "epidemic" of blindness among survivors.
Social mobilization proved to be a game changer, although maybe more in Liberia than Sierra Leone or Guinea, where it felt as if the airwaves were constantly filled with catchy Ebola songs, talk shows and social messages that tackled Ebola. Sunday church gatherings found pastors feverishly preaching to demystify Ebola. Community volunteers went door to door to inform people about the illness. From civil society to governments to NGOs to the communities themselves, many Liberians were involved in outreach and education campaigns. As awareness increased, people's behaviors changed.
What might be the most significant lesson of all was that the entire scientific community was able to pull together in a massive, one-of-a-kind public health endeavor to develop, evaluate and bring to "market" in record time an effective vaccine that has the potential to end to this and future epidemics of the disease. The vaccine is still in Phase III trials but WHO has approved its use in the three countries most affected by the epidemic. It was a perfect demonstration that the gap between research and practice or policy can be significantly shortened to bring important public health discoveries to the public. In Guinea, which still has cases, people who've been in contact with Ebola victims are being vaccinated.
What could we have done better?
Much has already been written about how painfully slow the international community was to respond to the Ebola crisis. But for those of us on the front lines from the early days, face to face with Ebola and its deaths, 'slow' seemed too kind a word for the world's response. "Cowardly" and "non-existent" come closer. Despite the unrelenting and desperate pleas from Doctors Without Borders for organizations and governments to provide assistance — health care personnel especially but also supplies and temporary treatment infrastructures – many dismissed the calls for help and few sent in staff, often out of fear
And even when international partners responded, they often arrived too late. It took about three months from the time the United States announced in September 2014 it would send troops to Liberia to build Ebola treatment units (ETUs) to the time those were built. By then, the epidemic was already waning, and nine out of the eleven centers built never saw a patient. In Sierra Leone's Port Loko district, one of the worst affected districts in the country, the Maforki ETU, run by the Ministry of Health in partnership with Partners in Health, was the only treatment facility functioning at the peak of the epidemic. This ETU was often filled to the brim yet there were shortages of staff and supplies, so the care provided was sometimes unsafe and inadequate.
But I think we did most poorly when we let fear dictate the quality of the clinical care we provided to patients. "What if," Dr. Paul Farmer provokingly asked, "the fatality rate isn't the virulence of the disease but the mediocrity of the medical delivery?" Of course lack of staff, supplies and space, combined with an overwhelming patient load didn't help. But in hindsight, we conveniently rationalized being "clinically unambitious" — not trying hard enough to provide better care.
For example, for much of the duration of the epidemic we contented ourselves to provide our patients with oral rehydration solutions (ORS), when what they really needed was aggressive intravenous fluid therapy. But using ORS was less risky: We weren't using needles that posed a potential risk of transmitting Ebola.
As clinicians, we compromised our ethical duty to care for patients with what we construed as an unacceptable level of risk working with Ebola. For much of the epidemic, women in labor in the ETU were left to their own devices, even though they most certainly needed a lot of care. The medical profession has protocols about what to do for patients. In this case, health workers were conveniently exempted from doing much of anything – a clear case of non-assistance.
The panic caused by the worst ever outbreak of Ebola forced governments, agencies and other partners to pour an unprecedented amount of resources into the epidemic. In the frantic focus to stop its progression, other killers such as malaria, measles or tuberculosis were largely forgotten. Preventive care such as vaccinations or visits by women after giving birth was greatly disrupted. Surgeries, even life-saving ones, were considered too risky to perform. Women in labor were left unattended, those with complications left to die. So patients were reluctant to come. Hospitals became places of distrust, hauntingly deserted. Many people died simply because of lack of access to any care at all.
The international community's shocking lack of leadership and coordination will have weighed heavily on the response to Ebola. Three of the poorest, most dysfunctional governments in the world were left much too long to manage on their own the biggest outbreak of a dangerous infectious disease, one that spread across borders like wildfire. Doctors Without Borders stood virtually alone responding several months into the epidemic. Desperately needed "staff, stuff and systems" — nurses, doctors, medical supplies, ETUs — did not reach the field for many months, if ever WHO and other agencies, lacking any sense of urgency, were much too slow to step in and provide logistical, programmatic and implementation support. At the height of the epidemic in Liberia, I asked the U.N. to shuttle by helicopter or plane blood samples from remote parts of the country to the national lab in Monrovia and was told that was not possible. [KH5] The few functional ambulances were monopolized for days to ferry the samples, often over nearly impassable roads. Well over a year into the epidemic in Sierra Leone, and despite only a few cases to manage, some of the quarantined families — who were confined to their homes for 21 days or more — still were not regularly receiving the food or water they were promised. How can we then possibly expect the members of those communities to comply with the government's orders and stay home?
Time and time again, coordination stands out as the Achilles' heel of humanitarian emergencies, from the tsunami in Banda Aceh to the earthquake in Haiti to Ebola in West Africa. We invent new agencies and acronyms to pretend we are more organized. We must do better. The approach of setting up a universal "command center" could help coordinate more efficiently.
Possibly the most far-reaching take-away point from my work in the Ebola epidemic was that paying too little attention to the local culture more than likely contributed to a protracted outbreak in all three countries. Contrary to popular belief, the people of West Africa didn't have strange customs. We (the expatriates, the international respondents) did. Until late into the epidemic, ambulances and police showed up unannounced in villages where sick people had been reported, dressed in scary moon suits, masks and goggles. Unrecognizable as human beings, they whisked sick loved ones away, often never to be seen or heard from again. We doused infected houses with acrid-smelling chlorine and burned precious belongings. We sprayed the dead with chlorine and disposed of them in white plastic bags. For a long time more people came out of ETUs in plastic bags than alive. Yet when communities hid their sick and their dead, when they threw stones at the ambulances, when they ran away, we labeled them resistant, distrustful, non-compliant. We forcibly quarantined them for days on end — the longest I witnessed in Sierra Leone was 84 days. We fined villages for not reporting possible cases of Ebola; we even jailed a few individuals.
This clearly wasn't the first time disease, public health approaches, medical treatments and cultures have clashed. Remember HIV? But it was the speed and intensity at which the outbreak was allowed to spread that exposed the gaping hole in our cultural competency. While WHO and CDC may have had medical anthropologists on the ground, they came too late, were far too few and often too academic. We never really engaged with communities to gain their trust. To this day, we have done too little work to constructively engage with traditional healers, who play crucial roles in Liberia, Sierra Leone and Guinea. From the very beginning, reaching out to religious leaders — who are incredibly influential members of the community — would have most probably provided the necessary cultural bridge to promote a better understanding of the disease and the interventions needed to stop it: the necessity for early reporting of illness, the imperative to resist the urge around touching the sick or dead, the need for safe burials of all deaths. International responders didn't fully understand the mindset of the national health care workers. It was assumed that because they were health care workers, they were "like us," following the same stringent rules of never touching one another while this epidemic lasted — both at work and outside of work. Yet an unprecedented 800 of them across all three countries contracted Ebola, many of them infected at home, taking care of folks in their communities rather than directing them to the ETU. Some health care workers didn't report their illness until late, choosing instead to be treated by colleagues in their homes, increasing their likelihood of dying and exposing their loved ones and their community to the disease. What did we miss? Where did we all go so wrong?
But I would be remiss if I didn't at least mention the repeated missteps that also occurred back in my own home country, in the United States. Unlike most of the rest of the world, we put aside the science and succumbed to unfounded paranoia by needlessly imposing quarantine on those returning from Ebola-affected countries — this, under the false pretense of protecting the public. Huge sums were spent on "active monitoring" — physically checking in on each and every person, monitoring them to make sure people weren't "hiding" their illnesses. It didn't help. It yielded zero persons hiding with Ebola, and paradoxically made it more difficult (leave became too long; volunteers did not want to be stuck at home for 21 days) for people to volunteer to work in West Africa — one of the pieces needed to stop the epidemic. Volunteers didn't want to be stuck at home for 21 days after returning from a stint.
Today, 24 months into the epidemic, the latest recurrence of the virus in Guinea is, ironically, the perfect simulation exercise everyone was calling for to measure progress achieved. The response has overall improved — in no small part due to the fact that many of the international actors are still in the country. But the illnesses in the community were initially not communicated to authorities. Disappointingly, the crucial issues of community mistrust, resistance and lack of any semblance of surveillance system — the very issues that allowed the epidemic to take hold and spread in the first place — seem to have remained, as if Ebola had never come here before.
Sadly, the Ebola epidemic is the recurrent saga of dysfunctional healthcare systems disintegrating in the face of acute disease. Poor countries that lack roads and other essential infrastructure are most susceptible but least able to withstand the assaults of diseases or wars on their populations.
We will have learned nothing, and history will ineluctably repeat itself, if we do not take a hard, honest look at our failures and at the same time capitalize on the current momentum of interest and goodwill displayed by nations and harness this opportunity to implement truly sustainable solutions that will improve the lives of millions of West Africans.