Satisfaction with the name change from “leprosy” to “Hansen’s disease” in Brazil.
por Lucas Delboni,
and Patrícia Duarte Deps.
Hansen’s disease is recognized as one of the twenty neglected tropical diseases by the World Health Organization (WHO), making stigma one of the obstacles to eliminating it (1). In most countries where it is endemic, Hansen’s disease is known as "leprosy" (or another stigmatizing term) and the stigma of being affected by Hansen’s disease is sometimes worse than the actual disease.
The change of name from “leprosy” to “Hansen’s disease” was considered the most efficient measure to fight the stigma of Hansen’s disease in Brazil and, probably, in the world. This discussion is older than we would like, but fortunately it has gained momentum in recent years through recent debates and publications. Deps & Cruz listed a series of facts, events and reasons that reiterate that the replacement of the term leprosy should occur, especially in countries where the disease is endemic (2).
Brazil is one of the countries where Hansen’s disease is endemic, but it stands out as a pioneer in changing the terminology. Although the satisfaction of persons affected by Hansen’s disease regarding the name change seemed to be favorable and unanimous, it had never been quantified. Recently, as part of an epidemiological survey, such quantification was carried out, mainly to identify the degree of satisfaction of persons affected by Hansen’s disease with the change in terminology. This study was conducted from September 2020 to April 2021, through a questionnaire prepared on Google Forms, containing 23 questions related to stigma and the terminology used to define the disease in Brazil - Hansen’s disease. Regarding terminology, the question was: "do you agree with changing the name from leprosy to Hansen’s disease?", and the respondent was asked to choose between two options: (a) yes, I prefer Hansen’s disease; or (b) no, I prefer leprosy. The research was approved by the Research Ethics Committee of the Universidade Federal do Espírito Santo, under CAAE number 32776920.6.0000.5060.
The patients, of both sexes and over 18 years old, were recruited in several Hansen’s disease Outpatient clinics services in Brazil, and, after the patients' agreement, the form and the consent term for the research were sent to their cell phones. We contacted 525 patients, and from these, 112 answers to the form were obtained. Of the 112 people affected by Hansen's disease who answered the questionnaire, 111 (99.11%) preferred the term "Hansen’s disease" to "leprosy" (3).
The result of this study clearly points out a preference of affected people to have been diagnosed with Hansen’s disease rather than leprosy. There are many reasons for this preference, but the following stand out: (a) the persistent association of leprosy with images of a disfigured human body - which was not uncommon before WHO spread multidrug therapy; and (b) the discriminatory and pejorative use of the term leper as a sinful, criminal, cruel person, even being used in reference to immigrants in the European continent (4).
In Brazil, although compulsory segregation was abolished in 1962 as a public health policy, there are many reports that this form of fighting the disease was used in the 1980s in some states of Brazil. In any case, being diagnosed with a disease that, approximately 50 years ago, for the "good of his family and friends", the patient needed to be isolated from everything and everyone, worsens a condition of suffering already established by the disease itself.
The change of the name leprosy to Hansen’s disease in Brazil, in addition to its derivatives (such as leper, leprosarium and lepromatous), has wiped out, even if slowly, but definitely, the ludicrous and evil memory from the conscious and unconscious of the Brazilian population. However, we cannot be satisfied with punctual and local changes. The collective change needs to be encouraged in other countries, being imperative to include as a public agenda the renaming of Hansen’s disease as a measure to combat stigma in the world (5).
IH Editorial Board :
Álvaro Nunes Larangeira.
Amanda Lima Mutz and Patrícia D. Deps.
Asia RO for S-E, Organization WH. Global Leprosy Strategy 2016–2020. Accelerating towards a leprosy-free world. Monitoring and Evaluation Guide [Internet]. World Health Organization. Regional Office for South-East Asia; 2017 [citado 28 de maio de 2020]. Disponível em: https://apps.who.int/iris/handle/10665/254907
Deps P, Cruz A. Why we should stop using the word leprosy. Lancet Infect Dis. abril de 2020;20(4):e75–8.
Delboni L, Deps P. Consensus in Brazil on the renaming of leprosy to Hansen’s disease. Transactions of The Royal Society of Tropical Medicine and Hygiene [Internet]. 24 de julho de 2021 [citado 20 de agosto de 2021];(trab115). Disponível em: https://doi.org/10.1093/trstmh/trab115
OHCHR | France’s Macron and Italy’s deputy PM urged to stop misuse of “leprosy” in political exchanges [Internet]. [citado 7 de junho de 2021]. Disponível em: https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=23317&LangID=E
Deps P, Delboni, L, Oliveira TIA. 'Lepra' versus hanseníase versus nova terminologia. Em: Sousa ACM de, Brandão PS, Duarte NIG. Hanseníase: Direitos Humanos, Saúde e Cidadania [Internet]. Rede Unida; 2021. P. 38-50. [citado 20 de agosto de 2021]. Disponível em: https://editora.redeunida.org.br/project/hanseniase-direitos-humanos-saude-e-cidadania/