A/HRC/38/42
but also their families. Yet, it has been imagined as something that no longer exists,
something of the past, something remote, something that is still and always apart.
28.
It is in this context that persons affected by leprosy and their family members
continue to face endless stigmatization and discrimination in their households, communities
and societies and in legislative and juridical institutions.
29.
The idea that the elimination of leprosy would solve the problem of stigmatization
and discrimination is a narrow approach and is indicative of limited understanding, not only
of stigmatization and discrimination, but also of the dynamics of history. Eliminated
diseases may re-emerge and with them stigmatization and discrimination. This is seen in
countries where leprosy re-emerges with foreign-born cases, and where loss of expertise
results in a delay in diagnosis. Such delays strengthen the chain of transmission and the
accompanying stigmatizing and discriminatory practices.
B.
A very modern disease
30.
It is true that leprosy is an ancient disease. Not only is its causative agent,
Mycobacterium leprae, old, but it has not changed significantly. 22 However, this does not
mean that leprosy is a disease of the past or a residue from the past.
31.
Leprosy is a contemporary disease closely linked with socioeconomic, civil and
political vulnerability. Despite the dramatic decline of its prevalence in the last three
decades, there are still: (a) considerable and concerning rates of incidence and transmission;
(b) a high proportion of late diagnosis; (c) underreporting; and (d) emerging new challenges,
such as an increase in foreign-born cases in countries that no longer have the expertise to
diagnose and treat leprosy, resulting in increasing transmission.
32.
Moreover, much of the legislation that deals with leprosy was produced in modern
times. The contemporary social representation of leprosy results from a complex
intersection between traditional myths, religious beliefs and modern ideas on contagion.
33.
Until the late nineteenth century, the cause of leprosy remained unknown. It was in
1873, that the Norwegian Gerard A. Hansen identified the acid-fast, rod-shaped
Mycobacterium leprae as its etiological agent. This breakthrough allowed for the
medicalization of leprosy, that is, its transformation from a moral condition into a medical
one. It also marked the modern history of leprosy, which is made up of turning points that
gave rise to different State and public health policies, as well as social experiences and
discriminatory practices.
First period of the modern history of leprosy (1873–1948)
34.
The first period of the modern history of leprosy started with Hansen’s discovery,
which led to a unified response to leprosy by European experts and Governments in 1879.
Such a response was based on a consensus on contagion (understood as the spread of a
disease through physical contact, particularly through touch) as leprosy’s transmission
mechanism.23 However, there was no evidence to support such a claim, since it was not
possible to grow Mycobacterium leprae in vivo or in vitro. Such a consensus, alongside the
description of leprosy as an “imperial danger”, 24 which demanded establishing sanitary
borders25 to prevent a massive invasion of leprosy26 among the central States, opened the
way for a general agreement on the need for prophylactic segregation of persons affected
22
23
24
25
26
See https://1drv.ms/b/s!ApNa7GHD7siggvE3a-EjQN5N83XWQg;
https://1drv.ms/b/s!ApNa7GHD7sighf4wL5kqb-xONmO2vg;
https://1drv.ms/b/s!ApNa7GHD7siggu1iUbSjy45Oq5CoRw.
Mittheilungen und Verhandlungen der internationalem wissenschaftlichen. Lepra-Conferenz zu
Berlin im October 1897 (Berlin, Verlag von August Hirschwald, 1898).
Tony Gould, A Disease Apart: Leprosy in the Modern World (New York, St. Martin’s Press, 2005).
S. Shubada Pandya, “The First International Leprosy Conference, Berlin, 1897: the politics of
segregation”, História, Ciências, Saúde – Manguinhos, vol. 10, No. 1 (2003), pp. 161–177.
Zeferino Falcão, A lepra em Portugal (Lisbon, Royal Academy of Science, 1900).
7
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