History of Hansen's Disease
by Henrique Antônio Valadares Costa,
Luiz Arthur Barros
and Patricia D. Deps
Origin and spread of Hansen's disease.
Hansen's disease is a relatively recent term for a very old disease. The identification of strains of M. leprae and their subtypes indicate that Hansen's disease originated in Central Asia or East Africa between 100 000 and 10 000 BC.1,2 Carbon 14 (14C) dating of ancient skeletons confirm the presence of Hansen's disease in the region of present-day Hungary around 3 600 BC, in India around 2 000 BC, and in Celtic remains between 400 and 300 B.C.3,4 The term in Greek meaning ‘a disease that makes the skin scaly’ translates to ‘lepra’ in Latin and has an ambiguous medical meaning. In Hippocratic texts circa 500 B.C. it referred to a number of skin diseases such as psoriasis and pyoderma,5 not just the disease we know today as Hansen's disease. In the Old Testament the term tsara’ath signified moral and spiritual impurity of the body whilst also encompassing several skin diseases.6
The first hypothesised origin of Hansen's disease pointed to the Indian subcontinent and its dispersion throughout Europe with the return of Alexander's troops from Macedonia after the end of his military campaign in India. However, major demographic changes, the agricultural revolution, movement of people and merchants, and the process of urbanization enabled the disease to have larger foci of spread from 6 000 years ago as the demographic space became larger, although occurrences could have been sporadic in rural areas.7 Written records describe Hansen's disease dating back to 1 555 B.C among Egyptians and then among Chinese and Indians in the year 600 B.C. It spread with greater intensity throughout the European continent along with other infectious diseases, mainly as a consequence of the crusades and the displacement of pilgrims to Asia during the Middle Ages.
There are no reliable records for Hansen's disease in the Americas before the arrival of Europeans in the 15th century, who brought many diseases to the New World.8 Hansen's disease in the Americas is therefore a likely consequence of the beginning of exploratory, commercial and colonizing expeditions and trading by the Portuguese, Spanish, French and Dutch during the 15th and 16th centuries. During this period, Hansen's disease spread throughout the American continent, and is probably the origin of the disease in Brazil.
In Portugal, the oldest written record of Hansen's disease is from the 1st century A.D., but the oldest sanatorium was built in 1107 A.D, consistent with the Middle Ages being the most striking period for the disease.9,10 Within a few centuries of the European invasion, Hansen's disease spread to Latin America. In the case of Brazil, besides the Portuguese immigrants, Africans brought as slaves from West Africa may have served as a secondary source.11 The first cases notified in Brazil date back to 1600 in Rio de Janeiro. Between the 17th century and the beginning of the 20th century 14 sanatoriums were built throughout the country.12
Whilst Hansen's disease was spreading throughout the Americas, it was declining as an endemic disease in most parts of Europe. With the exception of Norway, Hansen's disease declined in the rest of Europe from the 15th century onwards. Possible causes of the decline include improvements in living conditions,13,14 the acquisition of resistance to the disease through natural selection,15 and environmental repercussions of the "Little Ice Age" (1275 to 1300). The cooling of Europe at the end of the Middle Ages probably had an impact on diseases.16 M. leprae in particular prefers regions of the planet within a narrow range of temperature. Norway had enough people affected by Hansen's disease until the 20th century to conduct the research which identified the bacillus.17,18
Hansen's disease in the history of medicine and hygiene
M. leprae was identified in Bergen in 1868 by the Norwegian doctor G. H. Amauer Hansen. Until Hansen's disease disappeared from Europe in the late 19th century, the most widespread form of control was the isolation of patients.19
By contrast, although there were sanatoriums in the 5th century, people affected by Hansen's disease were not segregated and instead participated actively in their communities. This picture changed from the 10th century onwards, when persons affected were isolated to avoid contagion, initially in huts or small houses.20 In 460 A.D. France, the first sanatorium in Europe was built in St. Oyen (now St. Claude). The Catholic Church intensified its assistance as the number of people affected by Hansen's dissease increased rapidly, reaching 20,000 by the middle of the 13th century.
The history of Hansen's disease is also the history of one of the oldest and strongest stigmas attached to a disease. With the development of medicine as a modern science, the sanitising role of religious orders declined. However, the 'mystical' notion of sin as a cause of Hansen’s disease was reformulated as behaviour, especially sexual misconduct, or considered hereditary, partly because the disease could affect children.21 The experience of the sanatorium on the island of Molokai in Hawaii in 1880s reinforced among the scientific community of that time the need for isolation, because it was considered successful in preventing cases of the disease.22
In Brazil, between 1640 and 1883, the few private initiatives to assist people affected by Hansen's disease occurred through the founding of asylums or hospitals in twelve Brazilian cities. There were no health policies organized by governments for this purpose. Even though Hansen's disease was not at the centre of attention at the beginning of the 20th century, as a result of successive lethal disease outbreaks in Brazil, it was eventually considered a compulsorily notifiable disease.
During the 1920's, Hansen's disease continued to be widely discussed at important health events in Brazil and abroad. With the creation of the Ministry of Education and Public Health in 1930, significant centrally-planned actions began to be carried out to combat Hansen's disease. Following the orientation of compulsory isolation, in 1935, the "Building Plan" was presented with the objective of building colonies to house more than 30,000 people affected by the disease. To extend the fight against Hansen's disease, a model known as ‘tripod’ was established, comprising colonies, dispensaries and prevention centres.23 The colonies were intended for compulsory isolation of the sick, away from contact with the healthy population; the dispensaries were intended for communicants - family members and people living with the sick and who would undergo periodic examinations; the prevention centres were for the shelter and education of the healthy children, forcibly removed from Hansen's disease-affected mothers.24
In the State of Espírito Santo, the Colony of Itanhenga (Pedro Fontes Colony Hospital) was inaugurated in 1937, and in 1940 the Alzira Bley Preventório (prevention centre), near the state capital, Vitória.25
In the 1940s, sulfone was introduced into medical practice to treat the disease. Monotherapy with sulfone, also known as dapsone, was a milestone in the history of Hansen's disease, as it allowed belief in the possibility of cure and eradication, and control of the disease through outpatient clinics. However, in 1964, Pettit & Rees proved that the bacilli could become resistant to sulfone if used as monotherapy. In 1977, the World Health Organization recommended the use of a combination of three drugs, rifampicin, dapsone and clofazimine, known as the multidrug therapy (MDT), for the treatment and clinical cure of Hansen’s disease.26
Discriminatory laws and the change of terminology in Brazil
Before the 1960's, the process of progressive deactivation of segregation and re-socialization of people who were segregated in colonies throughout Brazil began. In 1962, compulsory confinement for Hansen's disease in Brazil was abolished.
Some provinces such as São Paulo (with compulsory admission) and Minas Gerais (with activity restrictions) had discriminatory laws directed at people affected by the bacillus.14 In Brazil there are no longer any discriminatory laws against persons affected by Hansen's disease, but 185 such laws still exist in 23 countries,27 despite the 1948 Declaration of Human Rights which states that no person may be discriminated against because of illness. India has 114 segregationist laws, including, until 2019, Hansen's disease as grounds for divorce.
In Brazil in 1976, the name of the disease was changed from leprosy to Hansen's disease by presidential decree. This was the result of the struggle of the Brazilian dermatologist Abrahão Rotberg, against what he called ‘leprastigma’. In 1995, prompted by the Movement for the Reintegration of People Affected by Hansen’s disease (MORHAN), the presidential decree became Federal Law 9.010, banning the term 'leprosy' and its derivatives, such as 'leper', 'leprosarium' and 'lepromatous', from clinical practice and institutional documents.28
In the past, policies were formulated in consideration only of public health, neglecting individual rights. In Brazil, as in other countries, the mobilization of social movements such as MORHAN is needed to eliminate Hansen's disease and ensure the formulation of policies to assist persons affected by Hansen's disease and their families.29
Beatriz Nicoli Ferreira e
Daniel Drago Rosário dos Santos
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Movimento de Reintegração das Pessoas Atingidas pela Hanseníase (MORHAN) http://www.morhan.org.br/