Leprosy and leprostigma: A review from the past through COVID-19

Leprostigma

One of the biggest obstacles in reaching the complete elimination of leprosy is universal leprostigma. The main sources of leprostigma are religious and linguistic stereotypes, misconceptions, and fear of people with deformities.

Religious and linguistic stereotypes come from many sources, one being the persistence of discriminatory language, as classified by the UN special rapporteur (30). Across diverse cultures, the word ‘leprosy’ was metaphorically associated with sins, curses or punishments, or evil spirits (26, 31). This association led to separate mass funerals for leprosy patients in Middle Age Europe and the mandatory attendance of exorcist performances for patients in South Korea (32, 33).

Other causes of the leprostigma are misconceptions that leprosy is hereditary and incurable and that deformities have infectivity. Research after the discovery of M. Leprae found that over 95% of the human population are naturally immune to leprosy, that over months of contact with an active leprosy patient is needed for a slim chance of infection, and that cured leprosy patients are no longer infectious (34). Yet, ignorance continued to associate deformity with infectivity, directly aiming leprostigma toward patients with irreversible deformities. Cured but deformed patients were found to often doubt their own infectivity, and some leprosy patients without deformities chose to dissociate themselves from those with deformities (35). Likewise, although leprosy was found to be nonhereditary and curable, children of leprosy patients were often denied admission to schools for being potential leprosy patients (7, 36).

Leprostigma led to the creation of thousands of leprosariums around the world. The treatment of patients in these leprosariums was extremely inhumane. Instead of treating the patients in a hospital-like setting, leprosariums considered the residents as criminals in prison (37).

In Japan, starting in the early 1900s, leprosarium doctors sterilized men and forced pregnant women to undergo abortions (38). Similarly, from the early 1900s, South Korean laws forced many leprosy patients to Sorok Island, the only leprosarium in South Korea. Surgeries and human experiments were performed on the patients without consent, and as Sorok Island was not a self-sufficient place, the increased inmates and lack of food led to a drastically increased death toll of the patients over the years (39).

Not all of the patients resided in these leprosariums, but the lives of those living among the uninfected were not much better (40). In Korea, patients committed suicide and killed their children to prevent them from experiencing leprostigma. Community members murdered patients, associating the disease with sins and evil and fearing the possibility of infection. In some extreme cases, patients practiced cannibalism, believing it was a cure (39). Although South Korea had comparatively detailed written records of leprostigma, many other countries with endemic history may have experienced the same severity.

As patients became isolated, the lack of interaction between people with and without leprosy caused even more fear and misconceptions. A study done by Asampong et al. (41) found that in the beginning, caregivers of cured leprosy patients in health facilities feared eating near patients because of the false belief that patients remain infective even after treatment. Moreover, some caregivers admitted that the “scary deformities’’ made them feel uncomfortable eating near or being around the patients (41 p. 5). The initial apprehension dissipated as the patients and caregivers interacted, and the caregivers came to eat near and even share food with the patients (41). This change shows that leprostigma will decrease if the leprosy-affected are given the opportunity to interact more freely with the unaffected.

Surprisingly, public health interventions to aid leprosy elimination may have also contributed to the formulation of leprostigma and fear of leprosy in the present day. According to a literature review performed in 2014 by Sermrittirong and Van Brakel (42), a historical fear of leprosy instilled in the public mind by Information, Education, and Communication (IEC) campaigns through the use of frightening symptom images and propaganda to increase self-reports and diagnosis may have further stigmatized the leprosy-affected. Moreover, by implying the prevalence of leprosy only in areas of low socioeconomic status, health education systems of the United States and western Europe may have further categorized the disease while raising public awareness (43).

With the aim to reduce these misconceptions and leprostigma, Brazil and South Korea changed the terminology of the disease on national levels. In 1995, the federal law of Brazil officially prohibited the use of the word ‘leprosy’ in all documents and every institutional practice, and in 1999, the National Assembly of Korea enforced the change from ‘leprosy’ and ‘lepers’ to ‘Hansen’s disease’ and ‘patients with Hansen’s disease,’ respectively (32, 44). Worth noting, this review uses the medical term ‘leprosy’ instead of ‘Hansen’s disease’ for better understanding as only some countries recommend the terminology change.

Leprostigma reduction programs implemented in some countries include integrating leprosy-related services to general health education and care to reduce the isolation and differentiation of patients from society. By providing leprosy-related care close to patients’ homes, such programs hope to slowly connect and integrate leprosy patients to other patients with diseases (45).

Despite these attempts, misconceptions and leprostigma are still present. In 2003, a study was conducted in Delhi to measure public awareness and attitudes regarding the disease (46). Out of the 104 people interviewed, only 44.20% knew the cause of the disease and only 63.10% were aware that the disease is curable. Moreover, 54.80% felt reluctant to employ leprosy-affected people, and 61.50% favored patients to live within bounds (Table 1). Sermrittirong and Van Brakel (42) found that one possible reason for this continuation of leprostigma and misconceptions may be that most programs to resolve leprostigma are generalized, even though stigma differs for every society depending on the social history, cultural meaning, individuals involved, and prevalent conditions. In another review, Semrittirong et al. (47) recommended that such campaigns and interventions should be implemented only after a thorough study of society.