Fear, Denial and Stigmatization in the Time of Ebola – The Case of Two Patients Zero

While we are more familiar with Thomas Eric Duncan as this country’s Ebola patient zero, he is  is not the first patient zero to evoke such visceral conflicting reactions, particularly with respect to his foreknowledge about his infection.  Patrick Sawyer, an American-Liberian consultant had sparked as ferocious a debate in Nigeria after his Ebola diagnosis.  Taking a closer look at the cases of these patients zero, there are remarkable similarities of circumstances that unfolded around their diagnoses and deaths.  What stands out is that both patients zero denied having the virus and denied even the possibility of having been in contact with anyone who might have had the virus.  As we continue to debate the validity of these denials, perhaps we should be asking instead: Can their denials be on account of the stigmatization that has attached to the virus? By extension, are those denials related to the fact that once acknowledged, life drastically changes especially in intimate and communal relationships as quarantine and isolation are mandatory to containing the virus?

Contested Truths – Did Sawyer and Duncan Know They Had Ebola?

Two months before Duncan arrived in Dallas, Patrick Sawyer disembarked at the Murtala Mohammed International Airport in Nigeria’s capital Lagos.  He had traveled to Lagos via Togo to attend a professional conference.  He collapsed in the arrival terminal (a fact initially concealed from medical personnel) and was taken by a protocol officer to First Consultant Medical Centre.  On July 25, he died of the Ebola virus becoming Nigeria’s patient zero.  Nineteen people with primary or secondary with Sawyer subsequently tested positive for Ebola; seven died. Five were medical personnel including Dr Stella Ameyo Adadevoh the physician who first suspected that Sawyer’s symptoms were indicative of Ebola.  Other medics who recovered from the virus have recounted their experiences.  Nigerians were left furious by the events that unfolded during Sawyer’s five days of hospitalization.  In fact, since his death many have been incensed by what they have concluded was Sawyer’s deliberate deceit “as the importer of the dreaded infectious Ebola virus”.  His deceit, they argued, put the lives of many medical personnel at risk and could have triggered an onslaught of Ebola infections and death (in evidence in neighboring Guinea, Sierra Leone and Liberia) except for the aggressive, labor intensive containment campaign launched by the Goodluck Jonathan administration.  What was Sawyer’s deceit?

According to media reports in the Nigeria, (see here, here) when admitted to the Lagos hospital, Sawyer self diagnosed his collapse as being the result of feeling weak.  He denied that he could possibly have the deadly Ebola virus or that he had been in contact with any person infected with the disease.  After conducting a battery of tests, including for malaria which remains a rampant and often deadly disease in West Africa, all returned negative. Sawyer did not respond to malaria treatement.

As they battled to save Sawyer, medics were drawn into a messy diplomatic spat with the Liberian ambassador who threatened legal action against the hospital if they continued to ignore Sawyer’s requests to be released for travel back to Liberia.  Caught in the cross hairs, Dr Adadevoh stood her ground and resisted these requests.  She paid with her life as did other medical and hospital personnel whose guard had been lowered after taking Sawyer at his word that he could not be infected with the virus. Adadevoh has been hailed a heroine in Nigeria since she became the first buffer against the virus accruing many more casualties in the most populous West African countries.

Medics involved in Sawyer’s treatment also recounted perplexing episodes that included him ripping out intravenous tubes and slashing nurses with blood as they attempted to detain him.  After his death, Nigerians would learn that Sawyer had indeed visited his sister at a Liberian hospital the day before she died of the Ebola virus on July 7.  He had also participated in her traditional burial ceremonies.

Nigerians remain perplexed by Sawyer’s deceit and continue to question his motives; others have doubts about whether he actually knew he had been infected or at the very least question at what point in time did he have confirmation about his sister’s diagnosis.  Some also speculate that he traveled to Nigeria seeking a miracle cure from a pentecostal pastor. Interestingly, Sawyer’s Minnesota based wife has asserted that her husband was seeking a second opinion in Nigeria about his diagnosis.

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 Thomas Eric Duncan’s grieving family has lamented that he could have been saved as were the other five Americans who have received experimental Ebola medications and recovered (or are in recovery).  For his nephew Josephus Weeks and other supporters (see here and here) this can be attributed to Duncan’s unequal treatment because he was “a poor black man with no health insurance”.  This was compounded by what he further described as the Texas Health Presbyterian Dallas hospital’s “ignorance, incompetence and indecency”.  Few would argue that the hospital was unprepared to treat its first walk-in patient suffering Ebola symptoms.  However, it is much more difficult to make the case that their near shambolic response was determined by factors such as Duncan’s race, poverty (and nationality) as asserted by Weeks. 

As Earl Ofari Hutchinson has cogently argued, it was not in anybody’s interest to purposely ignore or leave untreated a patient suffering from Ebola.

Leaving that aside, many details about what transpired during Duncan’s initial visit and subsequent hospitalization at Dallas Presbyterian remain murky perhaps because of possible impending litigation.  (Family members are now raising questions about the effects of the experimental drug had as part of Duncan’s treatment.  They have requested further medical records from Dallas Presbyterian).  However, there are clear discrepancies between the hospital’s recollection of events and the details shared by Weeks and other family members in interviews and an op-ed published in the Dallas News.  Medical records reveal that on his initial visit, while Duncan shared that he had arrived from “Africa” with admission personnel, when interviewed by the attending physician he identified himself as a “local resident”.

In retrospect, further questioning might have offered further clarification and perhaps allowed for the extrapolation that Ebola should have been included in the battery of tests initially administered.  Instead, after ruling out a stroke or appendicitis, Duncan was misdiagnosed as suffering from sinusitis and prescribed antibiotics and Tylenol before departing the hospital.

On his second visit, three days later, records show that although his Liberian origins and family members’ raised the prospect of him being infected with Ebola, Duncan himself again denied that he had had contact with anyone with the virus.  His diagnosis was confirmed after testing.  Weeks’ account of these visits recorded in his op-ed contests the hospital’s version as he asserted that Duncan “told them (hospital personnel) he had just returned (sic) from Liberia explicitly due to the Ebola threat”.

 At issue, particularly in the court of public opinion, is whether Duncan knew he was infected with the virus before embarking on his flight to the US.  Weeks also disputed Duncan’s Liberian neighbors’ explanation that he contracted the virus after being a good citizen who assisted his pregnant teenaged neighbor who was in the dying stages of the disease.  Although some reports provide varying information about this detail, what is clear is that the virus had reached within Duncan’s close quarters.

Weeks has attempted to debunk the possibility of his uncle’s foreknowledge by vouching for his careful nature and stating that “he would never knowingly expose anyone to this illness”.  But what if Duncan was himself in denial about his infection with the virus?  What if Sawyer too was in denial about having the virus? Is denial one of the unintended consequences of being diagnosed with this virus?  Denial that is spawned by fear and stigmatization?

 Ebola-Virus

Fear and Denial in the Time of Ebola

Panicked media reporting about Ebola has helped to fuel fears about a full fledged outbreak and almost compelled us to evaluate Duncan’s (perceived) actions within a moral and ethical framework.  The moral indignation regarding Sawyer in Nigeria is comparable.  Online commenters repeatedly asked: How could he put so many lives at risk by boarding three different planes to travel to Dallas?  How could he  have lied on the immigration questionnaire?  How could he have endangered the lives of his relatives and other tenants in the apartment complex and wider Dallas community?  These are valid questions for which there might never be satisfactory answers.  But what else might account for these adamant denials of even the slightest possibility of having the virus? Denials that obstinately withstand interrogation by medics who are attempting to deliver care and healing?

This is of critical significance as the global fight to stop Ebola intensifies.  To ignore that  victims might be prone to deny the possibility of infection can be detrimental to efforts to treat and contain the disease that is expected to explode before any appreciable decline in infections is registered.  

Medics have underscored the challenges of getting patients to be honest during consultations about (even general) ailments and about whether they have adhered to taking their medication as directed.  There are also other deeply held beliefs and cultural traditions that must be confronted.  The fear of doctors is one; the other is the mistrust of doctors especially among the African American community borne of the infamous Tuskegee experiment.  Abroad, the mistrust has bred a range of conspiracy theories to which the Ebola epidemic has been added.  Across the African continent (and other locations) some hold closely to the view that Ebola and HIV were viruses concocted in American medical laboratories for nefarious agendas.  That Sawyer was American-born only fed these theories.  In Nigeria, some including the former President Olugesun Obasanjo, suspected Sawyer of conspiring with the Liberian government to take the virus to Nigeria thereby acting as an agent of bioterrorism.   Medical volunteers and aid workers have also been attacked and killed (in some instances) because of the fear of the foreigners entering their villages and homes.  Volunteers with Doctors Without Borders have also discussed the difficulties that charities encounter in securing the trust of villagers as they arrive to remove infected family members who they may never again see.

The quarantine and isolation that is mandatory in stemming the spread of the disease curtails any physical contact that humans generally require even if only as reassurance of connectedness in life.   This is one of the many cultural incursions that the virus has bread. Another the curtailment of traditional burial customs.  Ruminating on Nigeria’s success in eliminating the Ebola threat, one letter writer observed: “This for me is the challenge.  If, God forbids, that ebola becomes epidemic in Nigeria, traditional and religious beliefs in the handling of dead bodies will be hard to discard. Especially in rural areas … The rural poor will want to dispose off (sic) their corpses by preparing, carrying and burying them according to established customs and traditions.  At the moment it seems unthinkable that village elders, chiefs and their traditional priests will readily deviate from the practices of their ancestors on account of ebola.

These observations have been supported by reports of families paying for fake death certificates so they can retain their relatives’ bodies for traditional burial.  Bearing in mind the virus is most contagious in death, continuing these practices has ensured the disease’s surge throughout villages and cities alike. 

In an ironic twist, this has also contributed to the stigmatization of those with the disease since Ebola deaths demand breaking with traditional belief systems and all the responsibilities that attend them.

How then does the global community shape health policies that reduce the fear and stigmatization (not only in West Africa where the disease is now rampant but also across the rest of the world) that breeds denial of disease infection?  Perhaps understanding and respecting the critical role of such cultural and religious traditions is key.  Removing the growing the stigmatization and fear however might only be achieved through culturally sensitive education about the disease; how it is contracted, when an infected person is at greatest risk of transferring the disease and the precautions that can be taken to avoid infection.  An expanded education and media program could also abate the stigmatization of those reentering communities after periods of quarantine and isolation.

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