With more than 450 deaths so far, the Ebola outbreak in West
Africa has recently been described as “out of control”. In addition to
controlling the spread of disease, governments have an uphill battle against
the “second disease” of stigmatisation many survivors face.
Disease stigma is nothing new. Even stories in the bible
recount the widespread stigma against leprosy. Stigmatization may have once had
an evolutionary purpose for early humans, but today it creates more harm than good by hindering positive health
behavior and perpetuating illness and reinforcing racist or unjust ideologies. Throughout
history, almost every major disease outbreak has been linked to a “low” or
“immoral” class of people who are threat to
society. Black women were often targeted as carriers of disease, especially by publicizing figures such as “Typhoid Mary.” The spread of polio was also
blamed on the poor urban immigrants in America. Although we know that disease
does not discriminate, it is easy to blame marginalized groups or immigrants
based on underlying racist and unjust stereotypes. This is demonstrated through
the HIV/AIDS epidemic and the 2003 SARS epidemic.
While fear and stigma breeds from unfamiliarity, it also partly
stems from our management techniques which tend to produce negative
connotations. Ebola calls for health workers to be covered head-to-toe in
biohazard suits, and infected people are kept quarantined for weeks without any
contact allowed to family or friends. Quarantine, in particular, tends to
produce an “us” versus “them” mentality. Often times, many of those quarantined
do not have complete understanding of the rationale for these measures. The
fact that there is no specific treatment or vaccine makes the disease even more
unnerving. The importance of a strong, central public health system is crucial
in these moments to provide clear, transparent information in a timely manner
to manage perception of public health risks. With many conflicting reports and
information, distrust breeds within healthcare providers and patients.
With this panic and fear, reintegration is difficult and many develop
psychological and social issues. After the SARS outbreak in 2003, 28.9% and
31.2% of 129 quarantined individuals surveyed from Toronto suffered from
posttraumatic stress disorder and depression, respectively. This onset of
mental illness and social isolation after quarantine can trigger a cycle of
poverty when patients lack support systems and lose their jobs.
Because of the challenges survivors face upon reintegration
into society, the stigma has probably fueled its spread as patients tried to
conceal their symptoms to avoid being
quarantined and labeled. Citizens often believe in
superstitions blaming the illness on a curse. Instead, they go into hiding,
discharge themselves early from health facilities and prevent some aid
organizations from even entering their communities.
Many methods have been practiced to address these problems.
WHO replaces some belongings that have been burned and buried
(mattress, clothes, pots, pans, etc) and provides a small stipend to
replace the rest. Psychologists provide counseling, and health workers
travel back home with the patient to ease neighbors’ fears. Despite these measures, it is not enough. In Liberia, one
survivor, Aissata Bangoura, has been cut off from her family since her husband
had died months earlier. The quality of her life has been greatly diminished due to her prior connection to this disease.
In an effort to convince the people of Ebola’s deadly effects,
Liberia’s health ministry has began posting images of Ebola-ravaged corpses in
newspapers and television. While this has been effective at educating citizens
that this was not an illness that can be cured with their traditional cultural
rituals, it has also bred fear. Public health messages about a disease influence
a person’s perception. People may be
more likely to spread rumors for a disease with visible symptoms rather than no
visible symptoms. A visible symptom may suggest that infected people are
different and instigate this gossip.
Along with outbreak management, we should ask ourselves the
long-term consequences of how we are presenting the disease. How should we modify this "horror-story" connotation to quarantine? Is there a better
way to present data or statements to the public that do not illicit fear? Is
“out of control” really the most effective to describe the situation? Is our
goal to create panic or an organized and calculated response? Can we provide
better support for cured patients? Should we consider all aspects (economic,
social, psychological, education) when creating a reintegration program?
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