Reflections on institutional stigma and Hansen’s disease

by Thauyra Oliveira, Lucas Delboni and Patrícia Deps

Hansen's disease is a contagious disease that can be cured and, if diagnosed and treated early, prevents the development of physical disabilities (1). It is a known fact the damage that stigma, in its various nuances, brings to the lives of people, especially the most vulnerable, added to the neglect by public power and society. It is therefore fair to involve various sectors to solve stigma and its consequences, moving from the plan of academic theory to concrete facts and practical attitudes in society - such as behavior change.

The prejudice against Brazilians affected by Hansen's disease, segregated in colonial hospitals in the 20th century, has perpetuated the difficulty of re-socializing these people and the stigma of the disease (1). Thus, a high degree of limitation in social activities, shame, relationship problems and difficulties in employment among the people affected and their families was combined (2). Stigma, by producing uncomfortable interactions, continues the cycle of social and economic exclusion, leading to loss of individual status and increasing vulnerability of people and groups (3). Stigmatization, however, is not homogeneously experienced when more than one factor contributes to the situation of vulnerability, and may vary among individuals according to gender, ethnicity, social and cultural condition, resulting in the "intersectionality of stigma"(4).

Over the years, there has been a need to objectively quantify the stigma experienced by people with Hansen's disease. Inspired by other conditions that also carry prejudice and stigma (HIV, chemical dependence and mental disorders), various scales have been developed to measure not only the extent of stigma, but also social participation, characterize functional limitations and risk awareness. The institutionalization of stigma, in turn, is an aspect of actions, often imperceptible, perpetrated by health professionals in their work routine. Medical behaviour, reproducing discriminatory and stereotyped acts against persons affected by Hansen's disease, contributes to the perpetuation of social exclusion and vulnerability of this group. The physician-patient relationship provides an opportunity for inclusion actions, and good medical practice should be a valued tool in Hansen's disease control programmes. Thus, developing a scale to assess and measure stigma related to medical practice in Brazil is a challenge for medical schools and Hansen's disease control programmes. It is an important additional step to overcome neglect and taboo in medical practice.

The fear of being recognized as a person affected by Hansen's disease may be related to institutional stigma, as the perception of discriminatory actions may be subtle, but certainly felt by the user. This obstacle impacts on early diagnosis, boosting the increase in cases with disabilities. Discrimination against persons affected by Hansen's disease in health facilities may occur at various levels and at various times. Difficulties in access to the health service for diagnosis, treatment, follow-up after completion of treatment, management of Hansen's disease reactions and side effects caused by MDT, suspension of active search and failure of reception are examples of discriminatory actions at the institutional level. There is still a lack of attention to rehabilitation, which leads to the evolution of disabilities, and to psychological treatment.

Training courses are important for addressing this type of stigma, preparing staff to recognize the problem, and eliminating discriminatory actions and language. Fundamentals of humanized medicine should be encouraged, in line with the requirement of good medical practice.

Nevertheless, the "Global Strategy for Leprosy 2016-2020 - Acceleration towards a world without leprosy"(5), proposed by the World Health Organization, and the national strategy by the Brazilian Ministry of Health (6), as well as actions led by Abrão Rotberg (1969) (7) and MORHAN resulting in Law 9010/1995 (8), which deals with the change of terminology from "Leprosy" to " Hanseníase", are successful initiatives to guarantee human rights and fundamental freedoms to persons affected by Hansen's disease and their families. The Brazilian experience of renaming the disease has had an impact on the fight against discrimination (9). However, the individual experience of stigmatization reflects the influence of rooted cultural beliefs in society, not just a name change.

And finally, stigma as a dynamic social process allows discriminatory actions around a group to be eradicated once the context that generates differentiation among individuals has changed. Such change finds encouragement in the extension of information access and community education, as well as through concrete actions of multidisciplinary reception and support from different social actors, family members and friends, including professionals, who open the doors for the diagnosis of those affected.