Leprosy/Hanseníase: An Interdisciplinary and Epidemiological Analysis Amazônia Paraense -Vila Santo Antônio do Prata-PA.

Leprosy/Hanseníase: An Interdisciplinary and Epidemiological Analysis Amazônia Paraense -Vila Santo Antônio do Prata-PA.

Maria de Lourdes Beldi de Alcantara, Carlos E. Corbett, Marilia Brasil

Medical Faculty at University of Sao Paulo, Brazil

DOI: https://doi.org/10.51244/IJRSI.2024.11150025P

Received: 17 September 2024; Accepted: 23 September 2024; Published: 18 October 2024

ABSTRACT

This interdisciplinary and epidemiological study delves into leprosy through the lens of Medical Anthropology, emphasizing the significance of cultural and social dimensions in the treatment and understanding of the disease. Recognizing health as a phenomenon that extends beyond the biological, the importance of interdisciplinarity and a holistic health perspective is underscored. By analyzing stigmas and cultural representations associated with leprosy, the paper highlights how stigma and concealment of the disease are significant barriers to treatment adherence. Despite medical advances, a negative cultural imaginary persists, reinforcing the need for approaches that incorporate psychosocial and cultural aspects into patients’ therapeutic journeys. Thus, this study offers a critical reflection on health practices, suggesting that including cultural and social dimensions is crucial for effective and humane leprosy treatment.

Keywords in Portuguese: Leprosy; Medical Anthropology; Treatment Adherence

Keywords in English: Leprosy; Medical Anthropology; Treatment Adherence

INTRODUCTION

This study is based on the theoretical and methodological foundations of Medical Anthropology, emphasizing the importance of interdisciplinarity in the treatment and understanding of health. The contribution of this discipline emphasizes that health transcends the biological sphere, also encompassing cultural dimensions intrinsic to the processes of illness. This aspect becomes particularly important when approaching epidemiological studies focused on pathologies such as leprosy.

Since the 1970s, Medical Anthropology has provided valuable insights into the experiences of individuals affected by chronic and stigmatizing diseases, including leprosy, lupus and tuberculosis. A milestone in this trajectory was the research “On leprosy and mental health at the KEM Hospital in Mumbai in collaboration with DR Doongaji” (2017), which highlighted the effectiveness of an ethnographic anthropological approach, based on Kleinmanm’s studies (2017). This approach criticized the ontology of Western medicine, which focuses on the disease to the detriment of the subject/patient, promoting a fragmented paradigm that neglects the complexity of the human being by reducing it to its biological condition.

In this context, patients are not merely passive recipients of medical care; they make choices and engage in alternative therapeutic practices, reflecting their cultural experiences. The perception of the body, as highlighted by Le Breton (2003), assumes a central position in this process, functioning as a mirror of the cultural and symbolic representations of each society. Stigma, consequently, emerges as the antithesis of this idealized body image, where deviation from cultural standards leads to rejection and even social expulsion.

According to Good et al. (2007), stigma is understood as a social, interpretative and cultural process, in which stigmatized conditions threaten what is most valuable to the individuals affected. Social stigma, therefore, goes beyond a biological condition, being laden with moral judgments resulting in deep traumas arising from social, economic and cultural exclusion.

In this sense, leprosy is defined in this analysis as an ‘illness’ that encapsulates not only the physical aspect of the disease, but also a socio-cultural context of exclusion and cultural trauma, the result of processes of self-rejection and social rejection. Despite the medical advances that have made it possible to cure leprosy, a cultural imaginary persists, in the belief of an eternal, incurable disease, which has the consequence of making it difficult to adhere to treatment.

This paper sets out to explore the psych sociocultural impact of leprosy, highlighting how denial and concealment of the disease are significant barriers to adherence to treatment. Through an interdisciplinary approach, it seeks a deeper understanding of how stigma and cultural representations influence the experience of illness and the therapeutic trajectory of patients, reiterating the need for a holistic approach to health that considers the biological, social and cultural dimensions involved.

Leprosy: An Interdisciplinary and Epidemiological Analysis

• Global and national epidemiological context

Leprosy remains a persistent public health challenge, characterized by its infectious nature, transmissibility and chronicity. According to the 2020 Epidemiological Bulletin, the disease is caused by Mycobacterium leprae, primarily affecting the peripheral nerves, eyes and skin. Although it affects individuals of all sexes and ages, the slow progression and often the lack of early treatment can result in irreversible physical deformities (BRASIL, 2016, 2017, 2019).

Brazil is the second country in the world in terms of the number of leprosy cases, with 28,660 cases, behind only India (120,334 cases), according to 2019 data from the World Health Organization (WHO). Every year, around 200,000 new cases of leprosy are detected worldwide. According to the epidemiological bulletin sent to the WHO, Brazil diagnosed 15,155 new cases of leprosy in 2021 alone. This scenario raises critical questions about the barriers to eradicating the disease, even in the face of effective treatments such as multidrug therapy (MDT).

• Challenges in Leprosy Control

Early detection and adherence to MDT are essential to reduce the transmission of M. leprae. However, significant gaps in the biomedical care chain-from limited access to health services to a lack of medical knowledge about the disease-compromise these efforts. Add to this the stigmatization of sufferers, the lack of awareness about leprosy and the fear of diagnosis, factors that contribute to non-adherence to treatment, especially among socioeconomically vulnerable populations.

• Leprosy as an Illness

This study suggests an expanded understanding of leprosy, arguing that it goes beyond its biological nature to also constitute a “disease/illness” in the broad sense, encompassing individual, social, economic and cultural aspects. This interdisciplinary approach reveals the stigma associated with leprosy as a phenomenon that crosses cultural boundaries, manifesting itself both globally and locally, and is reinforced by moral stigmas that hinder affected individuals from effectively claiming their rights. This is due to marginalization and failure to fully exercise citizenship, highlighting the need for a more holistic understanding that considers both the biological and social dimensions of the disease.

• Neglected Diseases and the Neoliberal System

Leprosy is categorized as one of the neglected diseases, prevalent in low-income populations and characterized by insufficient investment in research, drug production and control (Fiocruz: 2023). This group of diseases, which includes malaria, Chagas disease, among others, is responsible for a high rate of morbidity and mortality globally, highlighting a complex interplay of interests between governments, pharmaceutical industries and biomedical research under the aegis of neoliberalism.

STUDY OBJECTIVE AND METHODOLOGY

Focusing on the biosociocultural narratives of patients, this study aims to identify categories of the collective imagination surrounding leprosy and their healing trajectories. To this end, semi-open questionnaires were administered, based on ethnography in the field of cultural epidemiology, to residents of the village of Santo Antônio do Prata, an emblematic place due to its history with the disease.

Theory/Methodology

During the 1970s, the debate around Medical Anthropology and the emphasis on interdisciplinarity, especially in the field of health, gained prominence. Ethnography emerged as the preferred method for understanding illness processes, underlining the importance of individuals’ biosocial and cultural ties, which are fundamental for uncovering the deepest layers of suffering, be it of an individual or collective nature.

According to Weiss (2017), anthropology and epidemiology constitute the basic sciences of cultural psychiatry, whose synergistic relationship fosters the growth of cultural epidemiology. Initially conceived for research in cultural psychiatry, this approach has also proved to be widely useful in other medical and public health areas. Anchored in Arthur Kleinmanm’s explanatory model of disease, this methodology is described as an epidemiology of explanatory models. Cultural epidemiology investigates locally recognized representations of disease, including key characteristics of explanatory models and their distribution. These representations are detailed through variables, descriptions and narratives that explain the experience of falling ill, its meaning and illness-related behavior. Qualitative and quantitative research methods are employed to facilitate comparisons and elucidate the cultural basis of disease risk, progression and outcomes, with direct implications for clinical practice and public health (WEISS: 2017).

From this perspective, illnesses are reinterpreted, highlighting the need to understand cultural subjectivity in each individual’s experience of illness. This sick subject is seen as the result of conjunctural and structural circumstances, openly or covertly questioning the dominant biomedical paradigm. Good (2022) criticizes the limitation of biocultural approaches when studying the process of becoming ill, highlighting the need to overcome the dichotomy between biological reductionist and cultural relativist perspectives, a common division in anthropological and transcultural studies around health.

In this context, the interaction between cultural aspects and conceptions of illness plays a crucial role in explaining suffering, giving culture a weight equivalent to that of biology. Cultural factors that influence epidemiological measurement, the validity of data, as well as the risk, progression and outcomes of health problems are central elements of cultural epidemiology.

The interviews, conducted in a semi-structured way, seek to promote a dialogical symmetry between the researcher and his interlocutor. Participatory research, based on ethnography, is vital for building this explanatory model. For this, immersion and shared experience with the interlocutors are essential for establishing bonds of empathy, which are crucial for understanding individual and collective suffering and its representations.

As highlighted by Pinheiro and Simpson (2017), the proposed cultural epidemiology approach aims to be understood as both an epidemiological discipline and a methodology for developing explanatory models of diseases. It is defined by the study of locally accepted representations of diseases and their distribution, with the aim of broadening cultural sensitivity and improving the quality of clinical care, health services and meeting the demands of mental health and global health (Pinheiro&Simpson: 2017).

Thus, the adoption of semi-structured strategies in the methodological process of this research makes it possible to explore socio-economic and cultural dynamics, as well as issues of self-esteem and their impact on the healing process, offering valuable insights for understanding and intervening in the experiences of illness.

In this study, this methodology is being applied in Vila Santo Antônio do Prata, Pará, a hyperendemic area in which the most infections are among adolescents over 15 years of age.

In this work, stigma is considered a total social fact in which trauma is structuring and structured, making it difficult for leprosy sufferers to overcome and reintegrate individually and socially.

In the context of the qualitative/quantitative research carried out in Vila Santo Antônio do Prata, the participants interviewed were categorized as follows:

• Consumers of Alcohol and Other Illicit Drugs: Includes a total of seven adults, including a woman and a gay man with HIV. All had been diagnosed with leprosy, but were not adhering to the proposed treatment.
• School representatives: The principal and a teacher from a local educational institution were interviewed.
• Families living in Vila do Prata: The sample included ten families, all with one or more members affected by leprosy. The visits were carried out in the company of the nurses responsible for monitoring the disease, generally focusing on the head of the family, the oldest woman in the house and the members affected by leprosy, totaling three people per family on average.

The survey involved a total of 52 individuals, including health professionals and people diagnosed with leprosy. It was observed that the perception of and approach to leprosy varied significantly according to the interviewees’ work context. Interestingly, several health workers reported having family members or even having the disease themselves, showing an intersection between personal and professional experiences.

The categorization of interlocutors extended to differentiating between the families visited, the professionals who work at the former reformatory and those employed at the health center. In addition, a specific group was identified called “tree-goers”, mostly made up of individuals with drug and alcohol addictions, who spend much of their time under a specific tree in the Vila.

Comparative data included interviews conducted at the outpatient clinic of the Tropical Medicine Center in Belém, involving 13 interlocutors – three women, one teenager and nine men. Notably, all were accompanied by family members during the interviews, with the companions often dominating the discourse to the detriment of the leprosy patients.

This research shows that leprosy transcends the individual condition, significantly impacting the family and social context of those affected. The testimonies collected reinforce the importance of cultural epidemiology for a comprehensive understanding of adherence to treatment, especially when contrasting the reality of a hyperendemic village with the scenario observed in an urban care center in Belém.

Landscape of Vila Santo Antônio do Prata

Vila Santo Antônio do Prata is located in the interior of the municipality of Igarapé-Açu, 110 km from Belém. The site has had different occupations: it was an indigenous territory of the Tembé/Tenetehara ethnic group; an area shared by a large mocambo; an Indigenous Colonial Nucleus; a Correctional Colony; an Agricultural Colony for Leprosy patients; and, since the 1970s, it has been a village of residents, the vast majority of whom have leprosy.

This village carries the history of leprosy and is paradigmatic of the policy adopted in Brazil until the mid-1980s. The threat these people posed to society was marked by exclusion and physical distancing. Called agricultural villages, they represented the solution adopted throughout Brazil for the isolation policy. These people lived in a separate society, with its social norms essentially dictated by the biocultural system and surveillance[1] .

Its residents have been exposed to leprosy for almost 100 years and it is one of the oldest leprosariums in Pará, serving more than 13,000 people. Compulsory isolation ended in 1972, but many continued to live there because of the stigma associated with the disease. “As well as being relatively isolated, over the years the residents of that region have been subjected to almost every leprosy treatment protocol,” says Mira. “Even so, they continue to reinfect themselves with the bacillus and transmit it.” [1]

What remains of the old leprosarium is inscribed in the abandonment of the old buildings and in the people who never returned to their families. The hospital still houses seven patients. The other buildings have been destroyed and the old Colônia has become, according to one interlocutor: “a place where anyone can live”[2] .  Another important factor is the fact that it is located in one of the largest pockets of poverty in Brazil. Data on the social and economic conditions of this region presented by the 2010 Pará State Social Indicators Information System indicate that 63.52% of the population of the municipality of Igarapé-Guaçu, where Vila Santo Antônio do Prata is located, is below the poverty line. These are ideal conditions for the perpetuation of disease.

Silencing seems to be the form of resistance/survival in Vila do Prata, which constantly lives and reproduces the violence registered by the stigma of leprosy and the “illegal” possibilities of alternatives for economic and social survival. This structuring and structured framework of living conditions is what feeds the imaginary of the perpetuation of the eternal condition of leprosy. These vulnerable populations are subjected to public policies that are treated as a form of “benevolence” by the Brazilian state, instead of being recognized as rights guaranteed by the Constitution. This distortion contributes to the continued deprivation of citizenship rights among the Brazilian population. As a reflection of these state shortcomings, one of the serious consequences is Brazil’s position as the country with the second highest leprosy prevalence rate in the world, second only to India.

In order to better visualize the reality of the vulnerability of the people who live in Vila Santo Antônio do Prata, we will start with the quantitative data. In this sense, we have chosen Vila Santo do Prata as a total social fact (Mauss, 1999), in which situations of high vulnerability – understood as conditions in which individuals or groups are unable to protect themselves and deal adequately with adverse circumstances, due to a variety of economic, social, health, environmental or political factors – converge, forming a kind of “epiphany”. Here, economic, social, cultural and even environmental phenomena intertwine, outlining a complex reality in which responses to situations initially perceived as temporary acquire a character of permanence.

QUANTITATIVE DATA ON LEPROSY

New cases of leprosy (under 15):

Brazil: Decrease from 2,723 cases in 2009 to 761 in 2021.

Pará: Reduction from 453 cases in 2009 to 97 in 2021.

Igarapé-Guaçu: Annual variation, with a total of 24 cases over the years.

Data analysis:

1. For children under 15 throughout Brazil, there has been a general decrease in the number of new leprosy cases over the years, from 2,723 cases in 2009 to 761 cases in 2021, indicating a downward trend over 13 years.
2. In Pará, for the same age group (under 15), there is also a downward trend, with a decrease in cases from 453 in 2009 to 97 in 2021.
3. In Igarapé-Guaçu, the number of cases in children under 15 is much lower compared to the whole of Brazil and Pará, with some fluctuations from year to year and generally low numbers, given the smaller scale of the population, it is assumed.
4. For the over-15s, across Brazil, we also saw a general reduction, but with a slight increase in 2017 and 2018. From 2020 onwards, there was a significant drop, from 17,101 cases in 2020 to 17,557 in 2021.
5. In Pará, for those over 15, the downward trend is less marked, with a fluctuation in the numbers over the years, but still ending with a reduction from 3,739 cases in 2009 to 1,537 in 2021.

In Igarapé-Guaçu, for those over 15, the total number of cases is very low compared to Brazil and Pará, but shows significant fluctuations in percentage terms, probably due to the small absolute number of cases.

Cases by Sex (2014-2021):

Brazil: More cases in men (113,664) than in women (91,061).

Pará: Follows a similar trend with 12,217 cases in men and 7,627 in women.

Igarapé-Guaçu: 39 cases in men and 23 in women.

The analysis detailing the number of new leprosy cases by gender reveals notable trends and differences between the national data, the state of Pará, and the city of Igarapé-Guaçu, over the period from 2014 to 2021.

At national level, Brazil has a cumulative total of 113,664 cases in men and 91,061 in women, showing that men are more affected by the disease. The combined total for Brazil comes to 204,725 new cases in this period. There is a general downward trend in the number of new cases from 2019 onwards, which may indicate success in leprosy prevention and treatment strategies, or changes in recording and diagnosis methodology.

In the state of Pará, the distribution follows a similar pattern to the national one, with 12,217 cases in men and 7,627 in women, totaling 19,844 cases. As with the national picture, there has been a visible reduction in the number of new cases since 2019, suggesting a positive trend in the management of the disease in the state.

In Igarapé-Guaçu, the numbers are lower, reflecting the area’s smaller population. Here, 39 cases were registered in men and 23 in women, for a total of 62 cases. Unlike the national and state pattern, there is no clear downward trend in new cases, and the annual variation in numbers suggests fluctuations that can be attributed to several factors, including variability in local transmission, the effectiveness of public health interventions and changes in surveillance or access to health services.

The graph for Pará reflects the predominance of cases in men compared to women, as well as a downward trend in new cases from 2019 onwards. In contrast, the graph for Igarapé-Guaçu shows fluctuations from year to year, with no clear trend of more cases among men or women. This underlines the importance of considering local specificities when formulating and implementing leprosy control strategies.

Cases by Age (2014-2021):

Adults (20-49 years) are most affected, reflecting the impact on the workforce.

Brazil: Over the period analyzed, there was a wide distribution of new leprosy cases in all age groups, with a significantly higher number of cases in the 20-29, 30-39, 40-49, and 50-59 age groups, reflecting a cumulative total of 21,764, 33,745, 38,206, and 38,874 cases, respectively. These data suggest that leprosy predominantly affects adults of working age, which can have considerable socio-economic implications, as well as health implications. In addition, the presence of cases in younger age groups, such as 0 to 4 years and 5 to 9 years, albeit in smaller numbers, highlights the importance of preventive interventions and early diagnosis in these vulnerable groups.

Pará: The state follows a pattern similar to the national one, with the highest number of cases also concentrated in the adult age groups, especially between 30 and 39 years and 40 and 49 years, totaling 3,803 and 3,355 cases, respectively. This pattern reinforces the need for public health strategies focused on the prevention and treatment of leprosy in adults, also considering transmission to younger age groups.

Igarapé-Guaçu: The numbers are significantly lower due to the city’s population scale. The distribution of new cases shows annual variability, with a cumulative total of 64 cases over the years analyzed. Although the absolute numbers are small, the presence of cases in various age groups, including young people and adults, points to the relevance of ongoing leprosy surveillance, prevention and treatment efforts, even in smaller communities.

Finally, it is important to note that any analysis should be cautious when interpreting data from recent years due to possible underreporting or delays in updating information systems during the pandemic. Collaboration between leprosy control programs and other health services is crucial to maintain attention to the disease, even in times of global health crisis.

Cases by Race/Color:

Brazil: Predominance of cases in brown individuals (119,731 cases), followed by whites (50,073) and blacks (26,936).

Pará: Most cases in brown people (14,627), with fewer cases in whites (2,387) and blacks (2,320).

Brazil: The highest proportion of new leprosy cases is identified among brown individuals, totaling 119,731 cases over the period analyzed, which represents the majority of cases in the country. This is followed by the white category, with a total of 50,073 cases. Cases among blacks total 26,936, while the yellow and indigenous categories register considerably lower numbers, with 2,032 and 951 cases respectively. This highlights a significant disparity in the distribution of leprosy between different racial groups, suggesting that socio-economic factors and access to health services may influence these differences.

Pará: The state follows a similar trend to the national one, with the majority of cases identified among brown people, totaling 14,627 cases. The number of cases among white and black people is significantly lower, with 2,387 and 2,320 cases respectively. The proportion of cases among yellow and indigenous people is even lower, indicating that, as at national level, leprosy affects racial groups unequally in Pará.

Igarapé-Guaçu: The numbers are smaller, given the scale of the population. The majority of cases recorded are among brown people, with a total of 54 cases. Cases among white and black individuals are equal, with a total of 4 cases for each category. There are no registered cases among yellow and indigenous people, and the “Ignored/White” category has no cases. This may reflect racial identification patterns specific to the region or limitations in data collection.

Education component

Analysis of the distribution of new leprosy cases by level of education between 2014 and 2021 reveals important social patterns that can contribute to understanding the epidemiology of the disease in Brazil, in the state of Pará and in the city of Igarapé-Guaçu. Let’s break down this data:

Brazil

• Illiterate: Over the years, there has been a downward trend in the number of cases among illiterate individuals, totaling 18,010 cases. This suggests that, despite the decrease, the lack of formal education is still a relevant factor in vulnerability to leprosy.
• Low schooling: Most cases are concentrated among people with 1 to 4 incomplete grades of elementary school (40,335 cases) and 5 to 8 incomplete grades of elementary school (30,190 cases), highlighting the correlation between lower levels of schooling and a higher incidence of the disease.
• Secondary and Higher Education: Although fewer in number, there are a significant number of cases among people with completed secondary education (26,615 cases) and even completed higher education (7,214 cases), which indicates that leprosy affects individuals at all levels of education, albeit in different proportions.

Pará

• Similar to the national picture, Pará shows a distribution of cases that is also skewed towards groups with lower levels of education. For example, people with 1 to 4 incomplete grades of elementary school account for 4,929 cases.
• The number of cases among people with completed higher education is 483, significantly lower when compared to lower levels of education, but still relevant.

Igarapé-Guaçu

• The numbers are smaller, reflecting the scale of the city’s population. The highest concentration of cases is among people with 1 to 4 incomplete grades of elementary school (18 cases) and 5 to 8 incomplete grades of elementary school (10 cases).
• Notably, the city registers cases in practically all education categories, although in very small numbers, which suggests a heterogeneous distribution of the disease.

New Multibacillary Cases (2009-2021):

Brazil: Variation, with a peak in 2018 (22,127 cases) and a reduction to 14,752 in 2021.

Pará: Reduction from 1,983 cases in 2019 to 1,311 in 2021.

Data Analysis:

The analysis of new cases of multibacillary leprosy in Brazil, in the state of Pará, and specifically in the city of Igarapé-Guaçu from 2009 to 2021 reveals important trends in the control and prevalence of this form of the disease, which is characterized by a higher bacillary load and, consequently, greater potential for transmission.

Brazil

• General trend: Brazil has seen a variation in multibacillary leprosy cases over the years, with a peak in 2018 (22,127 cases), indicating an increase in that specific year. After 2019, there is a sharp decrease in cases, reaching 14,752 in 2021, which may indicate progress in disease control strategies or changes in diagnosis and notification methodology.
• Analysis: The increase in cases in 2018 requires further analysis to understand the factors that contributed to this rise. The subsequent decrease can be attributed to more effective control efforts, greater awareness and better access to treatment.

Pará

• General trend: Pará is following a trend similar to that observed in Brazil, with a general decrease in multibacillary leprosy cases, particularly marked from 2019 onwards. The number of cases decreased from 1,983 in 2019 to 1,311 in 2021.
• Analysis: This trend may reflect the effectiveness of public health interventions in the state, including efforts to improve early diagnosis, treatment and education of the population about leprosy.

Igarapé-Guaçu

• General trend: Igarapé-Guaçu shows much lower numbers, which is to be expected given the area’s smaller population. Cases fluctuate over the years, with a peak in 2013 (17 cases). From 2019 onwards, there is a significant decrease in cases, with a reduction to just 1 case in 2020 and a slight recovery to 3 cases in 2021.
• Analysis: The variation in cases in Igarapé-Guaçu may be influenced by several factors, including the effectiveness of local public health campaigns, variations in access to diagnosis and treatment, and possibly the small population scale, which may lead to more noticeable fluctuations in the data.

Cases with Grade 2 Physical Disability:

Brazil: Variation, with an increase until 2019 (2,351 cases) and a drop to 1,737 in 2021.

Pará: Similar pattern with a reduction to 150 cases in 2021.

Brazil

At a national level, the figures show a fluctuation in new cases of GIF 2 over the years analyzed. After a period of slight decrease or initial stability, there is a notable increase until 2019, followed by a significant drop in 2020, and a small recovery in 2021. This pattern may indicate several factors, including variations in the effectiveness of early diagnosis and treatment strategies, as well as in the coverage and quality of health services. The peak in 2019 suggests a delay or gaps in case detection and management, which resulted in an increase in cases with a higher degree of disability. The subsequent drop may be the result of intensified efforts to improve access to treatment and awareness of the disease.

Pará

In Pará, a pattern similar to the national one is observed, with fluctuations over time and a peak followed by a fall in recent years. This may reflect both national trends and state-specific factors affecting leprosy management. The persistence of cases with GIF 2 points to the need for robust public health strategies in the state, focused on prevention, early diagnosis, and facilitated access to treatment to prevent disability. The reduction in recent years is encouraging, but requires continuity in public health actions to ensure a sustained decline in cases.

Igarapé-Guaçu

In Igarapé-Guaçu, the numbers are very low, reflecting the smaller population scale. However, even the occurrence of a small number of cases with GIF 2 is significant, indicating that there are cases of advanced leprosy that have led to disabilities. The presence of these cases, even if sporadic, highlights the importance of effective local health systems for the early detection and treatment of leprosy, as well as health education programs for the population. The absence of new cases in 2020 and 2021 may indicate success in health initiatives or variations in notification and diagnosis.

Detection Mode (Total until 2021):

Referral: Brazil (92,723 cases), Pará (7,709), Igarapé-Guaçu (38).

Spontaneous Demand: Brazil (80,227), Pará (9,584), Igarapé-Guaçu (16).

Collective Examination: Brazil (8,163), Pará (777), Igarapé-Guaçu (6).

Contact Examination: Brazil (17,409), Pará (1,367), Igarapé-Guaçu (1).

Brazil

• Referral: The largest source of detection in Brazil is by referral, totaling 92,723 cases. This indicates that many cases are identified in health services and referred for specialized treatment, reflecting the importance of the health network in detecting the disease.
• Spontaneous demand: The second largest category is spontaneous demand, with 80,227 cases, showing that a significant proportion of patients seek health services on their own. This underlines the population’s awareness of the disease and the importance of access to health services.
• Collective Examination: With 8,163 cases, this category indicates the detection of cases through examinations in groups or communities, which may be a reflection of public health programs and screening campaigns.
• Contact testing: With 17,409 cases, contact testing of patients who have already been diagnosed is a crucial tool for identifying new cases and preventing transmission of the disease.
• Other Modes: Less common, with 3,772 cases, it includes other forms of detection that do not fall into the previous categories.

Pará

• Referral: Following the national trend, the majority of cases in Pará are detected by referral (7,709 cases), highlighting the importance of health services in detection.
• Spontaneous demand: Spontaneous demand is also significant (9,584 cases), indicating that many patients in Pará seek health services on their own initiative.
• Collective Screening and Contact Screening: These categories have a lower incidence (777 and 1,367 cases, respectively) but are essential for active screening for the disease, especially in areas with a high prevalence.
• Other Methods: Represents the lowest number of cases detected (277 cases), indicating that other detection methods are less prevalent in the state.

Igarapé-Guaçu

• Referral: With 38 cases, this is the main form of detection, although it is far fewer in number, reflecting the scale of the city.
• Spontaneous Demand: This represents the second largest route of detection (16 cases), which shows the importance of access and demand for health services by the local population.
• Collective Examination and Contact Examination: Few cases are detected by these methods (6 and 1 case, respectively), suggesting the need to strengthen screening strategies in the community and among close contacts of patients.

Other Modes: No cases detected by other modes have been reported, indicating a concentration in the main detection routes

Partial completion of quantitative data

The analysis of quantitative data on leprosy reveals important trends in Brazil, with a specific focus on the state of Pará and the community of Igarapé-Guaçu, which provide valuable insights into the epidemiology of the disease, vulnerable groups, and the effectiveness of public health interventions.

Firstly, there has been a downward trend in the number of new leprosy cases over the years, both in Brazil and in Pará and Igarapé-Guaçu. This decline is consistent with national and local efforts to improve detection, treatment and education about leprosy, highlighting the importance of ongoing public health programs to combat the disease (WHO, 2020).

Analysis by age group indicates that leprosy predominantly affects adults of working age (20-49 years), which has significant implications for the workforce and the local economy, emphasizing the need for prevention strategies aimed at this demographic group (Eichelmann et al., 2013).

The study also reveals an unequal distribution of leprosy cases among different races, with a higher prevalence among brown individuals. This reflects social and health inequalities, suggesting that socioeconomic factors and access to health services play a crucial role in vulnerability to leprosy (Freitas et al., 2014).

In addition, the number of multibacillary cases and cases with grade 2 physical disability shows the late detection of the disease, reiterating the importance of early diagnosis and timely access to treatment to prevent transmission and the physical sequelae of leprosy (Lockwood et al., 2014).

The modes of detection, including referral, spontaneous demand, collective examination and contact examination, highlight the relevance of active screening strategies and community education in identifying new cases. This underlines the need to strengthen the capacity of health systems to improve surveillance and community engagement (Smith et al., 2015).

In conclusion, the data analyzed provide robust evidence to inform public health policies and intervention strategies focused on the prevention, early diagnosis, and treatment of leprosy. It is imperative that efforts continue to be directed towards addressing health and social disparities, improving education and awareness about leprosy, and strengthening health systems to eliminate the disease as a public health problem (Scollard et al., 2006; WHO, 2020).

DATA AND ANALYSIS OF NARRATIVES

The integration of the quantitative and qualitative data collected in Vila Santo Antônio do Prata offers a comprehensive and in-depth view of leprosy and its social, cultural and public health implications. The quantitative data reveals an alarming reality about the prevalence and distribution of leprosy, with a significant incidence of new cases, highlighting the hyperendemicity of the disease in the region. These figures are crucial to understanding the magnitude of the problem, but only with the addition of qualitative narratives is it possible to fully understand the lived experiences of affected individuals and the complex dynamics of stigma, exclusion and resilience that characterize this community.

In the village, there is a very distinct divide over the concept of leprosy. If, on the one hand, it is considered an incurable disease, for a large part of the residents, it becomes ‘naturalized’ by those who have it, in other words, it doesn’t kill, but it doesn’t cure, you live. And for people who are not carriers, even if they have a family history, it represents a ghost/shadow/hauntology, in Derrida’s terms[5] and Byron is present and at any moment can be transmitted and will even return; the pity of Transmission refers not only to the physical illness, but above all to the self-inflicted stigmatization/exclusion being inflicted by the community, reaffirming the eternalization of this illness.

The consequences of this social stigma result in a search for a strategy to cover up leprosy, usually self-exile, withdrawal from work, seeking alternative therapies, and medical help in other leprosy centers, Marituba, is common. The community’s accusation is traumatic.

It can be seen that the representations of leprosy, which seem antagonistic at the same time as being naturalized by leprosy patients, are viewed with great prejudice by those who don’t have it, even though they live in the same place.

The fact that leprosy is considered incurable, not only by leprosy sufferers, but by the entire local population, makes stigma a kind of haunting that eliminates a subjective/social identity. Reading goes beyond the biomedical explanation and becomes magic/punishment. Why me???? This question, repeated several times in our conversations, refers to the fact that she was chosen! Denying the reality of living with leprosy for a long time in a hyperendemic location.

This factor can be considered as one of the complex variants that are part of non-adherence or abandonment of treatment, or even covering up the disease by refusing it.

People with leprosy have their own conceptions and interpretations of leprosy. They make a hybrid reading between biomedical knowledge and the experience of the disease. Identified as leprosy patients, they incorporate the disease and begin to identify themselves as such, naturalizing it. Other diseases will be considered diseases, not leprosy. Because, a priori, they are leprosy patients.

“You can treat, but there is no cure.”[6]

“A cure? These doctors don’t know what leprosy is, they think that if they change the name, the disease changes.”[7].

“This disease is cursed, it can never be cured, ask anyone” [8]

“There are a lot of people who have it and don’t talk about it and don’t seek treatment, they’re afraid, but we know who has it[9] “

Fear and nonconformity manifest themselves in various ways among the community, including all kinds of social exclusion, moral condemnation from other people in the community, fear of contagion, fear of the health team, fear of telling, fear of being recognized, because of the fact of exposing oneself and being exposed, with rejection/reclusion/escape from leprosy being one of the most protective strategies. Thus, experiencing Vila is this polysemic and phonic complexity of suffering processes permeated by fear. What is said and what is forbidden creates a network of gossip that has as its backdrop, a network of protection, the avoidance of contagion, especially among the health teams who work and live there.

Various social places have been designated by its residents, some of which have been structured since the days of the Colony: the inmates, those who remain in the hospital and, according to Lopes&Beltrão (2019)[11] , the ‘former inmates’, a category that designates leprosy patients compulsorily hospitalized between 1920/70. It’s important to note that the category ex-internos is equivalent to those who are lepers, even if they are cured. Furthermore, among the interlocutors of this research, ‘leprosy’ continues to be the designation used to refer to the disease, given its depth in time and its weight as a social stigma“. And ‘normal’ people.

Presentation of the narratives between the researcher and his interlocutors.

This study classifies three paradigmatic places of experience in order to understand the belonging created in the town of Santo Antônio do Prata:

1. The old sanatorium: where 5 patients live, in this specific case, they are called patients because they no longer have control over their lives, they are completely dependent on their carers and the medical team. from what I have been able to ascertain, many come from other states, mainly Maranhão. They have passed through several shelters before arriving at Prata, which means that they have accumulated social security, making them a target for exploitation by the “caregivers”. Some have hired local caregivers to live together and receive individual treatment. This “new” social role, usually “caregivers”, creates a social category in the village, generated by the local population’s lack of income. As it is highly contested, individuals and/or families become “owners” of their patients and the latter are completely dependent on them, especially when they live outside the old shelter. We made a visit where the patient was completely abandoned, both in terms of health care and control of his money. According to the local community, this is very common.

They are over 75 years old and have no family to take them away. They have been abandoned and are waiting to die. They cannot be interviewed because of their physical and mental condition.

That said, the interviews were carried out with local staff employed by the state of Pará. They were not interviewed because they did not speak or whisper. This place is where the memory of what has been and continues to be the condition of leprosy patients is located and can be considered a place of oblivion both for the patients who are there and for the relatives who don’t want to hear from them, trying to erase the memory of relatives who have a cursed disease. The imaginary is based on contagion, the degradation of the body, in short, social exile and self-exile, the moral curse is condemnation.

2. Basic Health Unit – UBS, with 15 employees, 4 Basic Health Agents and two nursing technicians. It was there that I got closer to the nurse and the technical health agents, joining them on visits to the houses that were being targeted at families with leprosy or who had already had it. I went there every morning and had the chance not only to get to know the families but also to get to know the health team, which gave me a different perspective on leprosy and how they treated and viewed the disease.
3. Under the tree, where the most marginal groups of Vila do Prata gathered, were mostly adult men and only one woman, all older people who had frequented the Vila before it was opened. They all had lives marked by loss and trauma. They were the children of leprosy patients who had been separated from their families and sent to a special shelter. The trauma of the separation, the social exclusion, was twofold, because as one of them said: “They wanted to separate us from our parents so we wouldn’t get leprosy and what good did it do? We lived without a father and with leprosy.

In Vila almost everything is generated by leprosy, economic, social and cultural relations. In this polyphonic and polysemic field, we will reconstruct the web of meanings of leprosy and its malaise.

It is within this complex that we can locate the categories that permeate the entire leprosy collective, those who live in the Vila and the workers who live in the surrounding area.

Categories taken from the narratives of leprosy patients, including those who have had and continue to have leprosy.

Divine illness: no cure

It is remarkable how the narratives of the professional staff of the former shelter and the population in general, including the local biomedical team, reaffirm that leprosy has no cure. Even with the medicines and the little health education they have, a large number of them share this assertion:

In the professional staff of the former shelter, of the 10 interviewees, 9 said that leprosy had no cure.

“It can be alleviated, but cured, it really can’t be cured; doctors can talk about it, but there’s no cure… I’ve lived here for so many years and it always comes back”[12]

“Doctor… you can research and study, but we’re the ones who live in these places, it’s never ended and it never will… it’s a divine disease… what I’m wondering is what punishment these people have committed?[13] “

“Here people know who has it and who doesn’t… those who don’t will get it one day… that’s the destiny of this place! There’s no cure, but we take care of each other… we’ve been in a lot of need, but we always get together here with some pinga… and then everything gets better. What’s the point of treatment… taking a lot of medication and then coming back? Let it go then…”[14]

“Doctor… there’s really no cure for this guy, he’s healed, momentarily, but he’ll be back soon. What kind of life is that? The other diseases they have are always the same… the doctors say it’s diabetes, heart and this and that, but deep down we know it’s leprosy”[15] .

Much of the work on leprosy touches on or analyzes in greater depth the relationship between leprosy and the religious perception described in the books of the Old Testament of Christianity. However, the eternalization of this illness in terms of narratives spans centuries and cultures. The curse of leprosy is seen as a taboo-breaking divine punishment. Moral judgment leaves no room for a technical explanation of the disease. The ontology of this illness is located in punishment, and guilt is the awareness of divine sin that is not related to any physical condition, but to a moral one. In this sense, only divine forgiveness through a miracle can cure. Thus, the miracle is the healing that results from divine forgiveness.

Stigma and social exclusion

“Do you know what it’s like to feel like a rag? That’s what we are… rags! No one accepts us, we carry a disease that has no cure and can pass. Nobody wants to have someone like that around[16] “.

“There’s no point in hiding the fact that you have leprosy, one of the medicines you take turns your skin black and you can’t go out in the sun. People say, you know… if I don’t believe this disease can be cured, why do I have to go through this? This shame! [17] “

“I’m very ashamed, you know, people judge you and then talk about your life… they break us up. In order to follow the treatment, you either have to move and get treatment elsewhere and live there… or else… stay here with all this talk[18] .”

“You know, doctor, I’m young and I like to date and dance a lot. After I went to the doctor and she said it was leprosy, I didn’t understand very well, then she said leprosy, so I understood. I was really scared… I didn’t want to get treatment or leave the house… I was, like… really bad… really bad… you have no idea. I asked myself: what did I do to deserve this? This is punishment… but for what? I studied, I had a nice life, I played soccer, I dated… I thought my girlfriend would understand, but nothing… she said she didn’t want to see me anymore… that this will pass and won’t heal… So you just saw, right! The whole gang found out and then… it was all over…

It’s a good thing COVID came along, so everyone was isolated…”[19]

“I’d turn red and black, but it didn’t hurt, my face, my body… Everyone would ask why I was black? Then I stopped going out and asked my daughter for everything… My daughter wouldn’t let me take my grandson. I’m clean, I have nothing…[20] “

Self-exclusion together with social exclusion generated by the stigma in which “social death” is felt and manifested. The shock of not knowing who caused the contamination causes divine/magical explanations to be voiced.

It is known that leprosy has a long incubation period. Generally, this period lasts an average of two to seven years; however, there are references to periods of less than two and more than ten years. This may be one of the factors attributed to leprosy sufferers not remembering the person they were infected by. When I ask them where they might have caught leprosy, during our conversations they never know, but in the course of the conversation they start to mention that someone very, very far away had it, that their mother told them, that he/she remembers, which leads us to the fact that they don’t reveal who they might have had contact with, referring to a distant and indeterminate time, as if it were a biblical time.

It is only by understanding how this stigma articulates social relations and their representations that we can understand the suffering of the subjects/patients. We will never be able to build a symmetrical discourse if we don’t understand the suffering of each person.

The fact that leprosy patients can’t work greatly affects their self-esteem, especially the men, the mainstay of the family. Working can hurt and that’s very risky.

Trajectory of the diagnosis: trauma of receiving the diagnosis

In the case of Vila do Prata, the diagnosis of leprosy is given, in other words, one day it will come. The naturalization of contagion is a reality; in contrast to this, at the Tropical Medicine clinic, the diagnosis is a shock. It breaks up the whole family, the fact that they can no longer recover their work functions due to the sequelae of the disease makes them physically and financially dependent on their families, which subjugates them and, at the same time, isolates them. The double exclusion leads to depression and a silencing that is close to death.

“Doctor… they won’t let me carry my grandson, I’m no good for anything else”

“I depend on my son, I can’t fish anymore and I don’t have any friends, my wife does everything, but… what am I good for?”

“I stay quietly in my corner and try not to disturb anything, I don’t go near them, they seem to be afraid of me… I stay in the corner…”

“What good am I? I can’t work, I can’t do anything because it hurts my feet, I don’t have any more children, I don’t have any more friends… I’m waiting to die.”

The loss of social function is notorious and, as much as they explain that leprosy doesn’t go away once you start treatment, it doesn’t cool the fear, the mistrust that hangs over this disease, as it goes beyond scientific logic and hangs like a shadow. Two questions are always asked: is there a cure? Why me? Questions that can never be answered if they are not within the same process of ontological conception of “leprosy”. The magical/religious permeates this disease and the fact that it leaves serious sequelae and the long time it takes to manifest itself after infection are elements that make up the mystery.

Healing Path?

Many leprosy patients or family members have the premise that if they haven’t had the disease, one day they will. This is true in Vila do Prata. Even though Vila Santo Antônio do Prata is considered a hyperendemic area, the stigma exists, even though the discourse reveals an ambiguity.

The narratives show that the pain in the soul often seems to take on such importance that the physical pain becomes meaningless. Social exclusion through the loss of boyfriends/girlfriends, friends, seclusion, the fear of being accused of having passed, the fear of being accused of being a carrier are vital.

One of the factors behind this work is that social stigma and self-stigma make seeking diagnosis and adhering to treatment a death sentence.

The delay in seeking a diagnosis means that death is delayed.

“… it’s???? to know that I have leprosy… and now??? I have nothing else…”

“… you know… here in Vila everyone lies. They say there’s no prejudice… but everyone talks a lot, so what? We started to lose our friends, no one invites us anymore, when we show up… they already separate the glasses… that’s why I don’t leave the house anymore…”

“All you have to do is stop the health car… and that’s it… the people start talking… everyone knows everything around here… do you think these health people don’t talk??? They’re the first… and then???? That’s it…”

The gossip network weaves a kind of social protection network, insofar as gossip lets people know who is or isn’t ill; it protects social interaction and excludes those who could threaten the social dynamic.

The stigma also delays the search for a diagnosis because in Vila Santo Antônio do Prata they know that, when diagnosed, they theoretically have to join the leprosy program and follow a protocol in which life revolves around them, suspending the social order, entering the world of the excluded.

When leprosy patients start drug treatment, it involves a combination of three antimicrobials: rifampicin, dapsone and clofazimine. This combination is called Single Polychemotherapy (MDT-U) and is available in adult and child presentations. It is available free of charge and exclusively through the Unified Health System (SUS).

One of the reactions to treatment is the darkening of the skin, denouncing those with leprosy.

“…you know the one that’s passing? I always said she had leprosy… but she said I was a mouthy person… nothing… she didn’t treat me here so we wouldn’t know…

But one day it’s no use… she showed up and her skin was dark… buchada, I… hammm, she really had leprosy” …

“… there’s no point in fooling us, we know, I’ve worked here all my life… I know who has it and who doesn’t. There’s no point disguising it… when it snows on your skin… that white spot… you know? That’s it… there’s no point taking care of it, there’s no point hiding it with foundation… we’ll see it… and if we don’t see it… one day the skin will darken…”

“… even those who work in the unit upstairs (health), we know they have it… it’s no use, there are people there who have it… and we know”.

Abandonment of treatment is very common, especially in Vila Santo Antônio do Prata. The need to follow the rigid medical protocol leads them, especially the men, to abandon treatment. We have no data on this, as there is no systematic survey of treatment abandonment. This raises the need for a survey.

DISCUSSION

Analysis of quantitative data reveals an encouraging downward trend in the number of new leprosy cases, suggesting the effectiveness of current disease control strategies (Silva et al., 2020). However, the persistence of new cases, especially among vulnerable populations, highlights significant challenges yet to be overcome (Gomes & Rocha, 2021). At the same time, qualitative insights add depth to our understanding, uncovering the devastating impact of stigma and social exclusion on the lives of those affected (Lima & Santos, 2019). Such accounts highlight a resignation to leprosy, which, despite being a coping mechanism, can inadvertently sustain the prevalence of the disease in the community.

Notably, the residents’ narratives point to a “naturalization” of leprosy, marked by a fatalistic acceptance resulting from the long-lasting stigma (Pereira, 2018). This resignation not only undermines prevention efforts, but also highlights the urgent need for strategies that go beyond biomedical treatment. Social exclusion and self-isolation, as reported, vividly illustrate the “stigma of discreditability”, which marginalizes those affected and underlines the importance of holistic approaches to leprosy control (Martins & Sousa, 2020).

To meet these challenges, it is imperative to implement multifaceted public health strategies. Health education programs, such as the initiatives promoted by the World Health Organization (WHO, 2022), must be adapted to the local context to demystify leprosy, promote awareness and combat stigma. The importance of early detection and accessible treatment cannot be underestimated, requiring the expansion of health services with a focus on high-risk communities (Costa & Almeida, 2021). In addition, support for community initiatives that foster the social inclusion of affected individuals is crucial (Ferreira & Menezes, 2019).

A significant gap in the study of leprosy lies in the insufficient critical analysis of how power structures and social inequalities perpetuate the prevalence of the disease and exacerbate the marginalization of affected individuals. Integrating a perspective that considers the intersections between poverty, gender, race/ethnicity, and the lived experience of leprosy is essential for a holistic understanding of the disease and the challenges faced by patients.

Social inequalities shape access to treatment, the experience of stigma, and opportunities for rehabilitation and social inclusion in complex ways. For example, poverty not only limits access to the health resources needed for effective treatment, but also increases vulnerability to the disease due to poor living conditions. In addition, gender issues can influence the experience of stigma and the search for treatment, where women affected by leprosy can face additional layers of discrimination. Similarly, racial and ethnic dynamics can accentuate social and economic exclusion, further complicating the treatment and recovery trajectories of affected individuals.

Addressing these inequalities requires a paradigm shift in leprosy control strategies, emphasizing the need for public policies and health practices that are socially inclusive and sensitive to the diverse realities experienced by patients. This implies not only the implementation of health programs that guarantee universal access to treatment, but also the creation of education and awareness initiatives that combat stigma and promote the social inclusion of those affected by the disease.

Promoting an interdisciplinary approach that involves collaborations between anthropologists, health professionals, affected communities and policymakers is crucial to developing and implementing effective strategies that address both the biomedical dimensions and the complex social dynamics associated with leprosy. Through a joint effort, it is possible to move towards a society where leprosy is understood and treated not just as a medical issue, but as a social challenge that requires a comprehensive and fair response.

In conclusion, the eradication of leprosy in Vila Santo Antônio do Prata requires an integrated approach that transcends public health to include education and social support (Silva et al., 2020). Combining efforts to address both the quantitative and qualitative aspects of the disease is vital for developing effective leprosy control strategies, reducing stigma and promoting a more inclusive and healthy community (Gomes & Rocha, 2021). This is a call to action for robust collaboration between sectors, aimed at a comprehensive and sustainable response to leprosy.

CONCLUSION

A comprehensive analysis of leprosy, considering both its epidemiology and the associated social challenges (Brazil, 2016), sheds light not only on the biomedical aspects of the disease, but also on the complex social and cultural dynamics that surround it. This study highlights the importance of an integrated approach comprising both clinical care and community support and education to combat leprosy effectively. Efforts to tackle the disease must transcend the provision of medical treatments, encompassing educational campaigns that inform the population about leprosy, aiming to dispel myths and reduce stigma, as highlighted by the World Health Organization (2019).

The results of a recent study in the state of Pará demonstrate the positive impact of community education campaigns on the early detection of leprosy, highlighting the effectiveness of approaches that combine medical treatment with efforts to raise public awareness (Lopes & Beltrão, 2019). Such initiatives not only promote early diagnosis and appropriate treatment, but also contribute to demystifying the disease and reducing the stigma associated with it, reflecting Castro and Watanabe’s (2009) observations about the compulsory isolation of leprosy sufferers in the past and the continued need for more humanized and inclusive approaches.

Therefore, we conclude that the fight against leprosy requires a collective effort that integrates health professionals, policy makers, communities and patients in a joint effort to eradicate the disease and its devastating effects. Through a holistic approach that considers the medical, social and psychological needs of patients (Le Breton, 2013), we can move towards a fairer and healthier society, where leprosy is no longer a sentence of exclusion, but a treatable and stigma-free condition.

Some conclusions and recommendations

This text provides a comprehensive and multifaceted overview of leprosy, focusing on both its epidemiological and social aspects, and highlights the complexity of combating the disease, which goes beyond biomedical interventions. The text underlines the importance of a holistic and interdisciplinary approach that integrates public health efforts with a deep understanding of social and cultural dynamics. Below, I present an in-depth analysis based on the data and themes presented:

Deepening the Epidemiological and Social Aspects

Temporal and Spatial Trends:

• The reduction in leprosy cases reflects the success of public health policies, but also highlights the need for continued surveillance to sustain these gains. The integration of leprosy control services into primary care suggests a model for other neglected diseases, where proximity to the community can facilitate early detection and effective treatment.

Influence of the COVID-19 pandemic:

• The impact of the pandemic on leprosy notification and treatment highlights the fragility of health systems in the face of global crises. This suggests the need for more resilient health systems that maintain the continuity of essential services, even during public health emergencies.

Multibacillary cases:

• The increase in multibacillary cases indicates gaps in early detection, underlining the importance of public health strategies that include rapid tests and contact examinations. This points to the need for constant innovation in diagnostic tools and screening approaches.

Demographic and Social Distribution:

• The disparities in the distribution of cases highlight how socio-economic factors influence exposure to the disease and access to treatment. This reinforces the importance of targeted social interventions, such as housing improvements and education programs, as an integral part of leprosy control strategies.

Expanded Recommendations Based on Analysis.

• Developing Culturally Sensitive Public Health Programs: In addition to existing recommendations, it is crucial to develop programs that are culturally adapted to the communities they serve, especially in areas with high leprosy rates. This involves not only translating educational materials into local languages, but also adapting health messages to respect and incorporate cultural beliefs and practices.
• Strengthening Local Capacities: Empower local communities to actively participate in the fight against leprosy, not only as beneficiaries of health programs, but as active agents in detection, prevention and education. This can include the formation of local support groups and the use of information technologies to facilitate communication and case tracking.
• Interdisciplinary Research: Encourage interdisciplinary research that explores the intersection between leprosy and social, economic and cultural aspects. This can provide deeper insights into barriers to treatment and prevention, as well as effective intervention strategies.
• Integrated Health and Development Policies: Recognize and address leprosy not only as a health issue, but as a development challenge that requires an integrated approach, including education, housing, and socio-economic support for affected populations.

REFERENCES

3. Adams, V. (2005). The Sacred in the Scientific: Ambiguous Practices of Science in Tibetan Medicine. Cultural Anthropology, 20(4), 545-570.
4. Brazil (2016). Ministry of Health. Disability Prevention Manual. Brasília: Ministry of Health. Available at: [link to the Ministry of Health website].
5. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101.
6. Byron, G. (2006). Hauntology: The Presence of the Past in Twenty-First Century English Literature. Palgrave Macmillan.
7. Castro, S. M. S. de, & Watanabe, H. A. W. (2009). Compulsory isolation of leprosy patients: memories of the elderly. História, Ciências, Saúde-Manguinhos, 16(2), 449-487. https://doi.org/10.1590/S0104-59702009000200010
8. Denzin, N. K., & Lincoln, Y. S. (Eds.) (2011). The Sage handbook of qualitative research (4th ed.). Sage.
9. Derrida, J. (1993). Specters of Marx: The State of the Debt, the Work of Mourning, and the New International. Routledge.
10. Derrida, J. (1994). Specters of Marx: The State of the Debt, the Work of Mourning, & the New International. Translated by Peggy Kamuf. Routledge.
11. Eichelmann, K., González González, S. E., Salas-Alanis, J. C., & Ocampo-Candiani, J. (2013). Leprosy. An update: definition, pathogenesis, classification, diagnosis, and treatment. Actas Dermosifiliogr, 104(7), 554-563.
12. Emerson, R. M., Fretz, R. I., & Shaw, L. L. (2011). Writing ethnographic fieldnotes. University of Chicago Press.
13. Freitas, L. R., Duarte, E. C., Garcia, L. P. (2014). Leprosy in Brazil and its association with characteristics of municipalities: ecological study, 2009-2011. Trop Med Int Health, 19(10), 1216-1225.
14. Gerson, S. (1976). The Social Death of the Chronically Ill: An Exploratory Study. Social Science & Medicine, 10(3), 123-128.
15. Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. Prentice-Hall.
16. Good, B. J. (1994). Medicine, rationality, and experience: An anthropological perspective. Cambridge University Press.
17. Kleinman, A. (1980). Patients and healers in the context of culture. University of California Press.
18. Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. Basic Books.
19. Le Breton, D. (2013). Anthropology of Pain. São Paulo: Editora UNIFESP.
20. Link, B. G., & Phelan, J. C. (2001). Conceptualizing Stigma. Annual Review of Sociology, 27, 363-385.
21. Lockwood, D. N., Shetty, V. P., Penna, G. O. (2014). Hazards of setting targets to eliminate disease: lessons from the leprosy elimination campaign. BMJ, 348, g1136.
22. Lopes, F., & Beltrão, L. (2019). Historical heritage and social memory: between indigenous people and former internees in Vila Santo Antônio do Prata, Brazilian Amazon. UEA Institutional Repository. Available at: [link to UEA repository].
23. World Health Organization (2019). Global leprosy update, 2018: moving towards a leprosy-free world. Weekly Epidemiological Record, 94(36), 389-412. Available at: [link to WHO document].
24. Parker, R., & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Science & Medicine, 57(1), 13-24.
25. Patton, M. Q. (2015). Qualitative research & evaluation methods: Integrating theory and practice (4th ed.). Sage.
26. Scambler, G. (2009). Health-related stigma. Sociology of Health & Illness, 31(3), 441-455.
27. Scollard, D. M., Adams, L. B., Gillis, T. P., Krahenbuhl, J. L., Truman, R. W., & Williams, D. L. (2006). The continuing challenges of leprosy. Clinical Microbiology Reviews, 19(2), 338-381.
28. Smith, W. C., van Brakel, W., Gillis, T., Saunderson, P., & Richardus, J. H. (2015). The missing millions: A threat to the elimination of leprosy. PLoS Neglected Tropical Diseases, 9(4), e0003658.
29. Weiss, M. G. (2008). Stigma and the social burden of neglected tropical diseases. PLoS Neglected Tropical Diseases, 2(5), e237.
30. World Health Organization (WHO) (2020). Global leprosy (Hansen disease) update, 2019: time to step-up prevention initiatives. Weekly Epidemiological Record, 95(36), 417-440.

FOOTNOTES

[1] Mira, M. testimony of the doctor who was applying a rapid test for leprosy.

[2] Testimony from one of the residents with leprosy.