A/HRC/44/46/Add.2
perpetuated in the lives of these persons and their children who suffer endless trauma and
restrictions on their enjoyment of social, economic and cultural rights.
68.
The Special Rapporteur had four meetings with representatives of persons who had
been subjected to forced segregation and their descendants. One was at the State Institute of
Sanitary Dermatology in Rio de Janeiro, known as the former colony of Curupaiti and
currently one of the reference centres for Hansen’s disease, where multidrug therapy was
first tested in Brazil. Another was at the Marcello Candia specialized reference unit, and the
other two were at civil society organization meetings, one in Rio de Janeiro and one in
Belém. This provided for very different spaces, the differences seeming to relate to the
proximity or lack thereof to the administrative centres. Particularly in former Hansen’s
disease colonies on the periphery of these centres, an alarming level of institutional neglect
was reported, with high levels of poverty, limited or no access to health care, assistive
devices or materials, or to basic services and resources, but also cases of relapses and
ongoing transmission. The threat of eviction was reported in some regions which, according
to the Committee on Economic, Social and Cultural Rights in its general comment No. 4
(1991) on the right to adequate housing, is a prima facie violation of the International
Covenant on Economic, Social and Cultural Rights.
69.
Nevertheless, good and best practices in the fields of research, care, assistance, land
regulation and preservation of history were observed. The Special Rapporteur highlights the
quality of international research and rehabilitation provided at the Lauro de Souza Lima
Institute in São Paulo; the regulation of land and property, resulting in the transfer of the
usufruct and ownership of property to persons affected by Hansen’s disease and their
family members in the States of Acre, Rio de Janeiro and Minas Gerais; the health-care
programme of persons affected by Hansen’s disease, but also of their family members,
provided at Santa Izabel (Minas Gerais); and interventions on history preservation also at
Santa Izabel. Many such practices are the result of participatory administration that
included MORHAN as a partner. In some of the former colonies, Brazil is undoubtedly
leading the implementation of guideline No. 5.4 of the principles and guidelines for the
elimination of discrimination against persons affected by leprosy and their family members.
Such efforts should be extended to all former colonies in the country, benefiting from the
already good and best practices in place.
B.
Separated children of persons affected by Hansen’s disease
70.
It is reported that approximately 16,000 children were separated from their parents,
who were affected by Hansen’s disease, as a result of the segregation policy; they were sent
to institutions known as preventoriums between the 1920s and the 1980s. There are also
reports of illegal adoptions and even executions. Accurate data about those children is not
yet available and the whereabouts of many of them remains unknown. In addition, these
people do not have access to their medical files and records for the period during which
they were at the preventoriums. These children grew up without any contact with their
biological parents and many of them experienced imprisonment, inhumane treatment and
torture in the preventoriums, such as forced labour, sexual abuse and other forms of
physical and psychological violence. As a result of these violations, many of these people
do not have access today to an adequate standard of living and economic autonomy, and
many suffer from psychosocial disorders and disabilities that impair their rehabilitation and
inclusion in society.
71.
Public interest litigation cases have been filed in the States of São Paulo, Maranhão
and Amazonas demanding reparation measures, but they are still pending. The delay in
some cases has been excessive and unjustifiable. They are: collective action filed at the
State of São Paulo Federal Court in 2017, MORHAN vs. Federal Government,32 collective
action filed at the State of Maranhão Federal Court in 2011, Federal Public Defenders’
Office vs. Federal Government, 33 and collective action filed at the State of Amazonas
32
33
See www.justificando.com/wp-content/uploads/2017/12/Petic%CC%A7a%CC%83o-Inicial-ACPMORHAN-1.pdf.
See www.dpu.def.br/images/stories/acao-civil-coletiva/ACP_DPU-MA_filhos_separados_
hanseniase_politicas_compensatorias.pdf.
15
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