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By Ann Mongoven, Ph.D.
The unfolding tragedy of Ebola in West Africa offers painful ethical lessons about international epidemic control. International public health organizations should re-frame infectious disease preparedness along lines of natural disaster response. Stricken regions may need not only expert advice, but also the infusion of mobile infrastructure. Unstricken (as of yet?) populations must remember that the greatest danger of epidemics may be the psychological tendency to ascribe “Otherness” to the sick or vulnerable.
Lesson 1: Basic health systems are basic to health care.
This should be, but regrettably is not, a case of stating the obvious. Insuring basic medical supplies are on hand, designing incentives to encourage distribution of health professionals according to needs, and equalizing access to care are economically and politically tall orders in wealthy countries, let alone resource-challenged ones. Developing basic health infrastructure does not give glory to aid organizations the way targeting a specific disease does—even though virtually all disease-fighting depends on that.
It is a basic problem that not all countries have basic health systems in place, while others have systems so basic that there is no reserve to confront a new threat. Ebola is exploding in countries that were already systems-stretched. This contributes not only to its spread, but also to what Medicine Sans Frontiers director Dr. Joanne Liu calls the “emergency unfolding within the emergency.” The demands of trying to contain Ebola have drained all regional health resources and staff, leaving people with “ordinary” acute crises—malaria, tuberculosis, AIDS, complicated childbirth—with no care.
International epidemic control vehicles such as the CDC’s famed Epidemiological Intelligence Service and similar units within the World Health Organizations are framed as consultants to health systems. They provide concerted expertise, surveillance systems, and sometimes highly specialized laboratory services not expected to be available locally. But advice to health systems, no matter how good, can’t be effective when there is no effective health system to take the advice, or when a minimal health system is inundated by an epidemic.
The campaign against Ebola needs an infusion on the ground of organized public health professionals who will not only roll up their sleeves and don gloves, but also bring the gloves. Ebola teaches that international epidemic control must be modeled after international aid for natural disasters. Mobile units that can deliver an infrastructure—in this case protective gear, IVs and tubing, clean needles, disinfectant, etc.—should be stockpiled for ready deployment. Disaster relief first responder organizations should include infectious disease professionals and volunteers. As Dr. Liu argues, international response to Ebola should have looked more like international response to the earthquake in Haiti.
Lesson 2: Disease stigma is as life-threatening as disease.
This Ebola outbreak began in March. It was a multi-town outbreak by the time it was recognized, the result of travel to the funeral of the first victims by out-of-town relatives. Initially the outbreak straddled the border of three countries: Guinea, Sierra Leone, and Liberia. (It has since spread to Nigeria, probably by air travel.) Epidemiologists and aid workers sounded an international alarm in response. The world yawned.
In her classic, Illness as Metaphor,¹ Susan Sontag dramatized the delusional tendency of the well to ascribe to the sick the character of a threatening “Other.” The sick Other is perceived as somehow morally inferior, somehow different, somehow vulnerable in ways that the well wish not to think so of themselves.
In this case, the view of the Other may have preceded the epidemic. The world’s initial yawn reflects the extent to which Africans are generally viewed as Other by many of the world’s non-African affluent. A terrible threat causing lost lives may have been dismissed as routine for those Others in West Africa, though it would be anything but for themselves. And despite the dispersed initial presentation, a wrong-headed conception of isolated rural villages lulled the international community into thinking the epidemic would be quickly contained. When SARS broke out in urban China and Singapore, everyone realized the danger of geographic mobility, from migrant workers to bankers. But somehow the geographic mobility of Africans, and the interconnection between urban and rural Africa, came as a surprise.
People already defined as Other become even more Other than other ill when they get sick. Yet the begged question of whether racism contributed to the too-little-too-late international response to the epidemic seems studiously avoided in public discussion. Hurrah for the courage of the satirical Onion, which headlined a recent edition “Ebola Vaccine At Least 50 White People Away.”
The power of Liberian President Ellen Johnson Sirleaf’s personal call to President Obama—requesting that highly limited supplies of new experimental drugs be made available to some West African patients, not only to returned white expatriate aid workers—rested on the unacknowledged racism that it dramatically combatted. Here was the Harvard-educated African president of a nation created by ex-American slaves begging the half-African president of the United States to include Africans in potentially life-saving therapeutic drug trials for an African epidemic. (Ironically, due to pharmaceutical outsourcing, Africa may bear disproportionate ethical risk for the routine development of new drugs in clinical trials—without necessarily receiving corresponding benefit.)
The characterization of victims as Other intertwines with the rhetoric of a “war on disease” in dangerous ways. The prevalence of war metaphors for medicine and public health increased after the totalizing nature of the second world war. That family of metaphors has been newly accentuated by current world attention on international terrorism. But what are we “battling” when we “fight” that “terroristic” virus, Ebola? As Sontag notes, there is a fine line between characterizing disease as the enemy and concluding the diseased are the enemy. If “harborers of terrorists” can be treated as terrorists in the “war on terror,” then why not Ebola patients? Ebola sufferers become viewed not as victims of bad luck, but as morally suspect.
Ascribing ontological and moral Otherness to sick people fuels disease stigma that is as life-threatening as the disease itself. It encourages people to deny illness for the sake of self- and family-protection. This is especially true when local resources are strapped to the point where reporting or quarantining may bring down the full weight of disease stigma without offering significant medical treatment. The degree of stigma that has come to be associated with Ebola, as well as the resistance of sick or vulnerable people to being portrayed as the enemy, explains otherwise health-defeating phenomenon in the epidemic. In Monrovia, Liberia, healthy people overran an Ebola clinic, urging patients to leave, scattering bloody sheets, and claiming there is no such thing as Ebola. Also in war-recovering Liberia, the war-like image of barbed-wire fencing quarantining a 50,000-person suburb prompted the defensive (but not to Ebola) response of the inhabitants storming the barricades. Social re-framing to reduce disease stigma will be as important as any medical breakthrough to the containment of Ebola—and of future terrifying, but not terrorist, epidemics.
- Annas, GJ. Reframing the Debate on Health Care Reform by Replacing our Metaphors. New England Journal of Medicine. Mar 16 1995;332(11):744-47. http://www.ncbi.nlm.nih.gov/pubmed/7854386
- Clashes in Liberia After Ebola Quarantine Order. The New York Times. 2014. http://www.nytimes.com/slideshow/2014/08/21/world/21liberia-now.html?_r=1
- Experts: Ebola Vaccine At Least 50 White People Away. The Onion. July 30 2014. http://www.theonion.com/articles/experts-ebola-vaccine-at-least-50-white-people-awa,36580/
- Fink S. 3 Liberian Health Workers With Ebola Receive Scarce Drug After Appeals to U.S. The New York Times. Aug 16 2014. http://nyti.ms/1oQHRgO
- Liu J. ‘Meaningful action is needed’: MSF International President Dr. Joanne Liu on Ebola. Medicine Sans Frontiers Canada. Aug 22 2014. http://www.msf.ca/en/article/meaningful-action-needed-msf-international-president-dr-joanne-liu-ebola.
- McGregor J. Looking for leadership in the Ebola epidemic. The Washington Post. Aug 25 2014. http://www.washingtonpost.com/blogs/on-leadership/wp/2014/08/25/looking-for-leadership-in-the-ebola-epidemic/
- Mongoven A. The War on Disease and the War on Terror: A Dangerous Metaphorical Nexus? Cambridge Quarterly of Healthcare Ethics. Aug 2006;15(4):403-416. http://dx.doi.org/10.1017/S0963180106060518
- Nyhan B. Fighting Ebola, and the Conspiracy Theories. The New York Times. Aug 25, 2014. http://nyti.ms/1mKdCZl
- ¹Sontag, Susan. Illness as Metaphor. (NY: Farrar, Straus & Giroux, 1978)
Ann Mongoven, Ph.D., is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics at Michigan State University.
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