Stigma and Hansen's disease

The origin of the stigma of Hansen's disease is probably based on the fear of spreading a "disfiguring and incurable disease" present in the imaginary of some societies, especially before antimicrobial treatments have been instituted. For a long time, people affected by Hansen's disease have been rejected by society, family and friends and condemned to live in total deprivation by losing contact with the outside world to avoid contamination. However, today Hansen's disease is a curable disease which, if diagnosed early, prevents the development of physical disabilities.(1)

Stigma produces negative consequences that result in uncomfortable social interactions, limit social networks, perpetuating the cycle of social and economic exclusion, consequently leading to loss of individual status and discrimination, increasing the vulnerability of people and groups.(2) In other words, stigma can cause limitations in social activities, shame, problems of family relationships and difficulties in employment. Stigma negatively impacts on the quality of life of people affected by Hansen's disease and their families.(3)

In Brazil, in the second half of the 20th century, stigma and prejudice against people affected by Hansen's disease, who were segregated in hospice colonies, were probably the main culprits of the difficulties of resocialization and of returning to life with their families and in society.(1) Even so, stigma is probably the most neglected issue of all about Hansen's disease.

In Brazil, actions led by dermatologist Abrão Rotberg (1969) and MORHAN (Movement for Reintegration of People Affected by Hansen's disease) resulted in Law 9010/1995, which prohibited the use of the term Hansen's disease and its derivatives in the language used in official documents and clinical practice,(4) since the word Hansen's disease carried a strong stigma in the imaginary of society. The Brazilian experience of renaming the disease Hansen's disease over the past four decades has clearly had a beneficial effect as a measure in combating stigma and discrimination.(5)

In the same vein, actions to change the name of the disease in other countries and to ban the term Hansen's disease (in several languages) worldwide have recently been invoked against discrimination.(5)

In 2010, one of the important measures to address Hansen's disease-related stigma was recommended during the UN General Assembly which adopted resolution 65/215 on the elimination of discrimination against persons affected by Hansen's disease and their families, who should be treated as individuals with dignity and secured all human rights and fundamental freedoms under international law, the applicable conventions, constitutions and laws.(6)

In 2017, the UN Human Rights Council adopted Resolution 35/9 establishing the mandate of a Special Rapporteur on the Elimination of Discrimination against Persons Affected by Hansen's disease and their Relatives.

With the same concern, WHO has included measures and targets aimed at reducing stigma and social inclusion with the aim of abolishing discriminatory laws in the "Global Strategy for Hansen's disease 2016-2020 - Accelerating towards a world without Hansen's disease".(7)

Considering the challenges in coping with the disease and based on the Global Strategy, the Brazilian Ministry of Health prepared the "National Strategy for Tackling Hansen's disease: 2019-2022", which has the overall goal of reducing the disease burden and addressing stigma and promoting social inclusion.(8)

Stigma can be defined as a negative, derogatory attribute, which makes the subject different, diminished, or possessing a disadvantage,(9) and is closely linked to the cultural norms, values, and structures of each society. (10,11)

Stigmatisation is a condition resulting from when labels are drawn from distinctions between people and cultural beliefs, i.e. the taxation of negative stereotypes, which results in the separation between "us" and "them" generating loss of status, discrimination and inequality.(11)

Discrimination refers to the unfair or negative treatment of a person or group because they have a certain characteristic (ethnicity, age, gender) or because they have a health condition (or disease). (12)

Prejudice is the hostile or aversive attitude towards a person or group that has qualities considered socially objectionable.(13)

Hansen's disease is a disease, in most cases, related to poverty, poor sanitary and housing conditions, and resulting from difficult access to health systems. Its heterogeneous distribution should be analysed from the perspective of social determinants (Savassi et al, 2009). (14)

In order to confront stigma and discrimination it is necessary to understand these phenomena as social processes and how inequalities that result in social exclusion are established.

Laws, rules and administrative procedures can have important consequences for stigmatization and discrimination related to Hansen's disease.

Brazil stands out as the only country in the world that has developed legislation prohibiting discriminatory language against people with Hansen's disease, but the occurrences of discriminatory practices are often reported, and in order to know this universe and to be able to face these situations, we encourage the health services to adopt channels that make it possible to report human rights violations committed to people with Hansen's disease.

Individual experience of stigma and discrimination is strongly linked to the influence of cultural beliefs and forms of stigmatisation rooted in society. A negative representation of the person with Hansen's disease usually occurs, reinforced by metaphors and pejorative language that tend to reinforce fear and lead to social exclusion and isolation. It is not uncommon for this condition to extend to family and, in some cases, friends, so-called secondary stigmatization. (15) The health professional needs to be vigilant that this negative experience does not result in impairment of access to health services, treatment and care.

Stigma, stigmatization and discrimination related to Hansen's disease may arise in different contexts and come in different forms: families and community, schools, the workplace and in health service facilities. (16)

In some services, the existence of a specific office for assistance or the location of this one purposely at the end of a corridor, specific times for procedures such as dressings, or even the existence of physical barriers such as glass for "protection" of the professional who will do the assistance, the existence of physical barriers that hinder or prevent the physical presence in public spaces are examples of institutional violence.

Confronting stigma requires knowledge of the situation, good will, education and affirmative action.

Actions to make Hansen's disease a positive symbol on public policy agendas to combat structural disadvantage and empower people affected by Hansen's disease and their families are coping practices. Other actions include strengthening awareness and awareness, social and public participation of persons affected by Hansen's disease and their families, and training them to become the main protagonists in the elimination of stigma and discrimination related to Hansen's disease, ensuring sustainability of long-term actions.

Tackling stigma often requires comprehensive, intersectoral interventions. Knowledge of the care network is paramount for the health professional to refer the patient to complementary services such as psychological, social and even legal care.

A channel for recording discriminatory practices is also essential for guaranteeing human rights and health. An example of this is the National Observatory on Human Rights and Hansen's disease of the Public Defender's Office,(17) which is a place to receive registration and monitor news of violations of the rights of people with Hansen's disease through a form available at: www.dpu.def.br/observatorio-hanseniase

Stigmatization and discrimination go beyond individual or social psychology and result in inequality and exclusion. Therefore, to minimize their devastating effects, it is necessary to consider interventions directed at stigmatized communities and populations that motivate the power of resistance and create models and actions that promote advocacy for social transformation. (18)

Scales were developed to measure the size or severity of stigma, as well as social participation, to characterize functional limitation, risk awareness, and restriction on social participation, to monitor stigma levels in a timeline, and to evaluate results in order to adjust actions. Some serve to contextualize the public policies adopted and the role of Hansen's disease in quality of life, such as the WHO Disability Assessment Schedule (WHODAS 2.0), Word Health Organization Quality of Life Assessment (WHOQOL-Bref),(19) and WHOQOL-DIS. (20)

The Participation Scale (P-Scale) measures the social participation of people affected by Hansen's disease. (21)

If the goal is to measure perceived stigma and self-stigma, the Explanatory Model Interview Catalogue (EMIC) scale can be used. There are two versions, one for community members and one for the person affected by Hansen's disease within the Brazilian cultural context. (22) This scale investigates perceptions, beliefs and practices related to the disease, enabling a more comprehensive view of the disease experience and its possible psychosocial impacts.

The scale known as Internalized Stigma of Mental Illness (ISMI) has the ability to measure internalized stigma, encompassing five components: alienation, stereotyping endorsement, perceived discrimination, social withdrawal, and stigma resistance. The SARI stigma scale derived from the Berger stigma scale used for HIV-infected people proposes to quantify how stigma is felt and experienced by people in the community. (3,23)

Another scale that has been used in Hansen's disease is Screening Activity Limitation and Safety Awareness (SALSA), which aims to measure activity limitation. (24) Together with P-Scale, it is recommended by the Ministry of Health (Brazil) to identify difficulties in daily life activities and social insertion of persons affected by Hansen's disease.

However, as already mentioned, numerous positive actions to combat stigma can be implemented, regardless of the stigma measures carried out by the various existing scales.