Leprosy patients and leprostigma: Present-day situation and impact of COVID-19
Compared to the past, the prevalence of leprosy has decreased prominently. Important research funding sources have stopped supporting leprosy research, perceiving it as eliminated (56). Because the disease now mainly affects only small populations in poor and developing countries, leprosy is categorized as a Neglected Tropical Disease, meaning it gains low interest in various medical industries (57). However, <1 case per 10,000 people, the threshold of elimination set by WHO, does not mean an absence of cases. Yet, the situations of those affected are often overlooked (56).
The prevalence of leprosy in India comes from the lack of health education and treatment delays (58). Patients are widely uninformed, and thus, prevented from reaching care at the appropriate times. Patients often ignore early symptoms of leprosy and visit healthcare facilities only when symptoms have lasted for months or years. The public health sector provides patients with free MDT and has been proven to give more accurate diagnoses than the private health sector (58). Nonetheless, most patients still visit the private health sector in their early stages of leprosy because government doctors are not easily accessible. This trend leads to more misdiagnoses and ineffective treatment, causing lasting complications for patients (58).
In India, the country with the most leprosy cases, patients still face leprostigma. According to the International Federation of Anti-Leprosy Associations (ILEP), as of June 2019, leprosy-affected people were denied their rights under 106 laws involving segregation, public transportation, marriage, and more (59). For example, under the Jammu and Kashmir Motor Vehicles Act, 1998, leprosy-affected people are “not eligible to obtain a driving license or drive a public service vehicle” (60). The unaltered discriminatory laws show that leprostigma remains to affect the lives of the patients.
Even in countries with a low prevalence of leprosy, leprosy patients are still neglected and stigmatized. According to research done in 2019, in South Korea, policies for leprosy patients fail to fully support those affected (39). The policies limit the subjects of protection to leprosy patients residing in facilities or settlements, even though the majority of the patients reside in open communities (Figure 1). Moreover, leprosy patients only receive 150,000 South Korean won (132.13 USD) per month from the government, which according to the patients, is not enough because the patients cannot support themselves due to age, discrimination, or disabilities (39). Furthermore, leprostigma is still evident in Korean society, just like in India. 37.05% of the interviewees answered that they experienced discrimination regarding their children’s marriage and a smaller percent answered that they recently experienced physical and verbal abuse (39). The comparison between countries with a high and low prevalence of leprosy suggests that the situation of leprosy patients and the extent of leprostigma is independent of the prevalence of the disease.
FIGURE 1 The residence of leprosy patients by percentage in South Korea in years 2000 and 2017 (39).
Recently, the COVID-19 pandemic has harmed the management of leprosy patients due to a decrease in diagnosis, treatment difficulties, increased susceptibility of leprosy patients to COVID-19 symptoms, and worsened leprostigma (8–23).
Numerous studies suggest a decreased diagnosis of leprosy after the emergence of COVID-19. Globally, WHO reports that the COVID-19 pandemic hindered the implementation of leprosy programs, causing a 37% reduction in new case detection between 2019 and 2020 (8). This reduction was especially significant in endemic countries. In a previous study by Da Paz et al. (9), the impact of the COVID-19 on the diagnosis of leprosy in Brazil was evaluated. They found a 41.4% reduction in the average number of leprosy cases from 2015 to 2019. Notably, this reduction was greater for patients below 15 years of age (-56.82%). Another study evaluating the impact of the COVID-19 on the diagnosis of leprosy in Brazil showed similar results (10). In this study, Matos et al. compared the new leprosy cases between January–September 2019 and January–September 2020. This comparison showed that leprosy diagnosis was reduced by 44.40% between these two durations. Especially when limiting the comparison period to April–September, the period after the emergence of COVID-19, the reduction was 51.10%, and a growing trend of COVID-19 cases and a downward trend of new leprosy cases were observed (10). In India, reports showed that there was a 13,730 decrease in newly reported cases of leprosy when comparing the periods between April-September of 2019 and 2022 (11). Compared to the previous year, this was a 63% drop in new diagnoses (11). Such a decrease in leprosy diagnosis may result in a hidden leprosy prevalence and continued transmission within the endemic community (10). Because late diagnosis causes severe and irreversible physical disabilities, the extent of leprostigma and psychosocial and physical hardships experienced by the leprosy-affected and their families are predicted to be worsened in the near future (10).
Along with the delay in diagnosis, COVID-19 has created difficulties in leprosy treatment. In countries with relatively weak health systems, hospital admissions and consultations are discouraged for most health conditions, including leprosy, due to their focus on responding to COVID-19 cases (12, 13). Such prioritization has prevented leprosy patients from easily accessing treatment, leaving them with severe physical disabilities (13). Moreover, due to the effectiveness of systemic corticosteroids in the treatment of COVID-19 complications, there has been a decreased availability of oral corticosteroids, which is used to treat those suffering from leprosy-associated reactions (14). Additionally, though related data is limited, COVID-19 and leprosy co-infection may increase the severity and frequency of leprosy-related complications (15).
Furthermore, leprosy patients may be more susceptible to COVID-19. Previous use of steroids and immunosuppressant therapy for leprosy-reaction management makes leprosy patients more susceptible to COVID-19 and vulnerable to its symptoms (14, 16). Moreover, physical disabilities and deformities like dry skin, as well as poverty resulting from social difficulties, prevents leprosy patients from maintaining the personal hygiene necessary to prevent COVID-19 infection and thus increase their chance of contracting COVID-19 (17). From a more organizational perspective, many parts of leprosy communities have been turned into field hospitals for COVID-19 patients and some of these communities do not have appropriate access to COVID-19 prevention information due to institutional neglect, thus increasing their susceptibility and vulnerability to COVID-19, especially due to their high population of elderly people who are more vulnerable to COVID-19 symptoms (17).
In a more societal context, COVID-19-related stigma and regulations may contribute to an increase in leprostigma and marginalizations. Numerous studies found that COVID-19 survivors, their families, and healthcare workers during the pandemic experienced heightened overall stigma and scrutiny due to public fear of possible infections due to encouragement of social isolation and improper understanding of the disease (18–20). Such COVID-19 stigmatizations, as proposed by Chopra and Arora (21), may further stigmatize and delay the diagnosis of other airborne diseases, suggesting a potential detriment to leprosy and the leprosy-affected. For patients co-infected with leprosy and COVID-19, the prevalent stigma for both diseases is thought to bring increased stigma (12). Moreover, studies suggest that public health interventions for COVID-19 like social distancing disproportionately marginalize already-stigmatized minorities like leprosy-affected communities and harm the psychological well-being of the leprosy-affected by further restricting their already-limited social lives, providing additional fear of infection (16), and increasing stigma (22, 23).
