Sana Sohail is a third-year undergraduate at the University of Chicago studying biological sciences and art.
Unpredictability is terrifying. There is something about uncertainty and a loss of control that never fails to instill fear. Ebola and Zika have both recently forced us to confront an anxiety around infectious diseases not found in outbreaks of strep throat or the seasonal flu. Infectious diseases like SARS and cholera appear to erupt without warning, rapidly spreading and decimating populations at seemingly uncontrollable rates. Most of the time, an outbreak’s causes or mechanisms of transmission are not well understood by the greater public. Furthermore, media hype more often than not becomes the epicenter of a second epidemic: one of fear and uncertainty.
The culture of fear around infectious diseases is understandable, but a social barrier can become become a physical barrier against diagnosis and treatment through stigmatization of a disease and its victims. Survivors of Ebola report being shunned and abandoned by their families and community; those suffering from leprosy in India are quarantined in so-called “leper colonies” and targeted for the visual deformities caused by the disease; Asian populations all over the world faced discrimination in the wake the SARS epidemic of 2003. Not coincidentally, much of this stigma falls disproportionately upon impoverished and minority populations who are blamed during pandemics and epidemics. The use of labels like the “Asian flu” or, in the case of H1N1, the “Mexican disease”, serve to isolate these populations and countries, “othering” them in ways that propagate stigma and fuel xenophobia. The stigma surrounding the AIDS epidemic since the 1980s has been unparalleled in recent history until very recently. This past winter, another disease has come to surpass HIV/AIDS as a leading cause of death worldwide: tuberculosis (TB).
There is a good and bad side to this change. According to the World Health Organization (WHO), the re-emergence of TB is due both to decreasing rates of mortality from HIV/AIDS and improved data collection for tuberculosis. Tuberculosis killed roughly 1.5 million people in 2014 and researchers believe that over one-third of people with active tuberculosis are “either undiagnosed or not reported”. What is more surprising is that despite being one of the top infectious diseases in the world, the majority of tuberculosis cases are curable though the use of 4 antimicrobial drug treatments over 6 months. If this is the case, how can we understand the persistence of hundreds of thousands of undiagnosed cases? How do we address the necessary months-long adherence to a lengthy treatment program? How can we understand the social stigma and public perceptions of the disease?
A Disease and its Symptoms
For many of us, tuberculosis seems like a disease of the past, associated with the Victorian Era and its romanticized depictions of “consumption”. Caused by a bacterial called Myobacterium tuberculosis, the disease’s symptoms are variable, which makes it more difficult to diagnose and separate from other infections. Tuberculosis can affect different parts of the body, such as the lymph nodes or the bones, but it is most commonly associated with the lungs. Pulmonary tuberculosis causes chest pains, fatigue, loss of appetite and weight, fevers, and the coughing up of blood.
There are two classes of tuberculosis: latent and active. A staggering one-third of the world’s entire population is estimated to have latent tuberculosis. In this case, they have been infected by the bacteria in small enough amounts such that their immune system can stave off symptoms. Those with latent tuberculosis cannot transmit the disease to others and a small percentage (usually around 10%) actually become sick. Latent tuberculosis can become active tuberculosis in cases where the immune system becomes suppressed, or active tuberculosis can develop shortly after becoming infected with the bacteria.
Several myths and misconceptions surround the transmission of tuberculosis (which is not uncommon for contagious diseases). Tuberculosis is spread through the air, by inhaling infected droplets that contain the bacteria. This can happen when someone who is infected coughs, sneezes, or talks. However, infection only takes place after a long time of close exposure with someone who is infected, which explains why it is often found in families and friends of those who are infected. According to tbfacts.org, tuberculosis is not spread through skin contact, shared food, water, or toothbrushes, or kissing.
Notably, there is a high rate of co-infection with tuberculosis and HIV, which makes sense considering that tuberculosis becomes active when the immune system is weakened. Data from WHO reveal that people who have HIV are 20-30 times more likely to develop active tuberculosis than those who do not have HIV, and one-third of HIV deaths in 2014 were due to tuberculosis infection. Roughly 9 million people a year get tuberculosis; countries in Africa, the Middle East, and parts of Asia bear most of the burden of cases. That is not to say, however, that other nations are TB-free. The United States, for instance, sees about 10,000 cases per year; infection trends through the years are currently leveling off into a concerning plateau instead of continuing on the steady decrease to be expected in a country with potent public health infrastructure.
Pulling Out Weeds by Their Roots:
The Basis of the Stigma Around TB
For countries with high rates of tuberculosis, its prevalence can be explained by three main factors: (1) poor public infrastructure; (2) limited integrated health education or awareness of TB and its transmission; and (3) the concentration of the disease in impoverished communities without access to medical care or adequate nutrition or sanitation. TB’s prevalence can also be explained by anthropological factors, as these systemic problems compound societal perceptions of illness. Tuberculosis spreads rapidly in poor, urban communities, where people are densely packed together and sanitation levels are low. These trends led to tuberculosis’s association with poverty (a characteristic that frequently overlaps with disadvantaged and disenfranchised minorities).
Infectious diseases have a long history of being inextricably linked to qualities like socioeconomic status, ethnicity, genetics, and morals. The internalization of societal norms results in sufferers of tuberculosis understanding their illness as a reflection of undesirable qualities like a low caste, poverty, and their heritage. HIV’s close relationship with tuberculosis carries its own widespread stigma of immoral behavior, further exacerbating the poor perception of tuberculosis in some societies. Low education levels and societal beliefs also propagate stigma: misconceptions that tuberculosis is caused by a curse or smoking, or transmitted by sharing food or utensils, make it difficult to determine and understand the actual cause and spread of the disease.
It is crucial to keep in mind that the basis of this stigma is fear of infection. To deal with this fear, infected individuals are isolated and ostracized from their communities and daily life in order to create a comforting sense of distance. In Ghana, those with active tuberculosis “cannot work in public spaces or attend community events”, while in some parts of India, a diagnosis of tuberculosis damages marriage prospects and can lead to the individual being abandoned by their family.
A long case-study conducted last year in Zambia supplied interview excerpts about experienced stigma:
“The nephew of my neighbour got the diagnosis TB at the clinic, this means they will do a household screening, but the family refused. The aunt said: “no one can have TB, because I believe in God”, even though the nephew is smear-positive. Instead of testing, they do nothing. The nephew now has to sleep alone, eat alone and no one talks to him. He is taking treatment on his own (TB patient during FGD).”
The Sequels to Stigma
In the excerpt above, the nephew was not only ostracized for his illness, but he also did not get the necessary testing and screening due to social stigma. For many people living in communities like these, the costs of revealing their diagnosis or going for treatment does not outweigh the costs of losing their jobs, their families, access to services, and their social standing. A damaging result of stigma is decreased adherence to preventive measures, low detection rates as people refuse testing, and reduced treatment compliance—all of this culminates in not only a threat to the life of the sick individual as the disease progresses and worsens, but an increased risk of of transmission to the rest of the community.
In order to avoid isolation and abandonment, community and family members may hide their diagnosis and attribute their symptoms to other causes. The effect of this stigma is so strong that some families do not disclose a member’s death to tuberculosis, fearing judgment and social repercussions despite the essentiality of such information for data collection, infection surveillance, and targeted tuberculosis screening. Patients may refuse treatment due to not wanting to be seen by the hospital or treatment facility, which they would have to visit for an extensive treatment regimen. Even for patients who do receive treatment and recover, they may return home to a community that views them with fear over their (albeit no longer existent) contagiousness, leaving a constant weight of stigma on the survivor.
Women and children were found to be particularly vulnerable to this stigma. WHO has acknowledged that childhood tuberculosis is under-researched and is only just beginning to be monitored more closely while women in many of these poor communities are in already-precarious economic positions with reduced access to medical care and education.
An Ethical Problem in Global Health
The stigma around tuberculosis could be a strong factor in its high mortality rates and prevalence in certain countries. Fear over being seen as someone with TB makes it difficult for people to disclose their condition or seek and continue treatment. This causes tuberculosis cases to go undetected and untreated, resulting in much higher chances that the microbe will spread throughout the community. The question remains, however: how can stigma be appropriately and compassionately dealt with?
The use of quarantine and isolation as a tactic for preventing the spread of infectious diseases is an age-old precaution, but it sometimes comes under fire socially for its negative effects on people and targeted populations. Even for those of us living in the States who think tuberculosis is behind us, the discussion of stigma and the ethics of isolation for this disease is still relevant. Over the past couple of decades, drug-resistant forms of tuberculosis have appeared, including strains that are proving to be incredibly difficult – if not impossible – to cure with even the most powerful anti-TB drugs. MDR-TB (multi-drug-resistant tuberculosis) prevalence has increased globally as a result of a lack of or incomplete adherence to normal tuberculosis treatment. The even more resistant form of tuberculosis, XDR-TB (Extremely Drug Resistant Tuberculosis), has also begun to emerge.
Clearly, tuberculosis is not a thing of the past. As different forms of the disease continue to evolve and spread, the myths and misconceptions surrounding its cause and transmission need to be dispelled in order to create a safer, encouraging environment for patients. We need to remain conscious of the way we socially approach and consider sickness, particularly when it does not seem to affect us. With concerns over the refugee crisis dominating the news, medical and political conversations over the risk of infectious diseases and their management are sure to take center stage, continuing this important discussion of disease, stigma, and treatment.
To learn more about a current campaign working to combat the stigma around Tb, visit http://www.unmaskstigma.org/