A/HRC/44/46/Add.2
31.
At the Special Rapporteur’s meeting with the Minister of Health, he highlighted the
close linkage between Hansen’s disease and poverty as an issue of concern, reflected in the
delay in diagnosis in remote areas where the public health system has limited coverage. The
Minister of Health also expressed concern about the limited access residents of remote
areas had to rehabilitation and reconstructive surgery. He highlighted the need to broaden
the perspective of Hansen’s disease from an infectious disease to a disabling and chronic
condition which is not yet suitably addressed by the health system.
32.
During the Special Rapporteur’s meetings at the former colony of Marituba, now the
Marcello Candia specialized reference unit in sanitary dermatology in the State of Pará,
persons affected by Hansen’s disease shared their testimonies about the living conditions in
the Amazonian region and areas where people are more vulnerable to disease than
elsewhere. They referred to the lack of proper assistance available near places of residence,
owing to the limited reach and capacity of primary health-care services. That resulted in
many people going undiagnosed and not receiving treatment for years, and their
concomitant development of irreversible physical impairments that are highly detrimental
to them at the psychosocial and economic levels. They also spoke of needing to travel at
their own cost to the state capital, Belém, to receive medical care during and after
completing multidrug therapy21 at the Marcello Candia specialized reference unit (which is
proof of the failure of primary health-care services to diagnose and treat Hansen’s disease),
which is difficult for them owing to their limited finances and the lack of safety nets. Other
concerns they expressed were the barriers they faced in terms of access to assistive devices,
some as basic as adapted shoes. Such devices can simultaneously prevent the worsening of
physical impairments and promote independent living. They also mentioned the lack of
availability of reconstructive surgery and rehabilitation. All those factors are exacerbated
by an already extremely disadvantaged socioeconomic situation.
33.
On her visit to Rocinha, a vulnerable community in Rio de Janeiro and one of the
biggest informal settlements (favelas) in Latin America, the Special Rapporteur met with
persons affected by Hansen’s disease. They spoke of the barriers they faced in accessing
goods and services from the State in general, and early diagnosis, timely treatment and
comprehensive care of Hansen’s disease in particular. Health workers expressed concern
about the loss of medical expertise to diagnose and treat the disease in an epidemiological
scenario of post-elimination of Hansen’s disease. That could result in a worsening in the
state of health of many affected individuals and their development of severe physical
impairments, as well as an increase in transmission among the population.
34.
At the Special Rapporteur’s meeting with members of the Brazilian Society of
Hansenology, concerns were shared with regard to the limited capacity of the public health
system to diagnose Hansen’s disease and properly treat it at the primary, secondary and
tertiary levels of care, and coordination difficulties between those levels. She also heard
about the lack of equal treatment provided to different social classes. Indeed, despite the
fact that multidrug therapy is provided free of charge, at private consultations patients can
receive drugs with diminished iatrogenic effects (see A/HRC/38/42), which are not
available to the general public. Concern was also voiced about the high percentage of late
diagnosis, with the accompanying irreversible physical impairments that tend to worsen
over time; underdiagnosis rates, which may be related to syndemics22 and to the limited
capacity of health workers to recognize Hansen’s disease; the limited availability of
reconstructive surgery; and the significant decrease in public funds for research on
Hansen’s disease.
35.
At the Special Rapporteur’s meeting with scholars, researchers and health experts in
the field of Hansen’s disease at the Fundação Oswaldo Cruz in Rio de Janeiro, the view that
was consistently put forward was that the main obstacle to ensuring a country free of
Hansen’s disease and the well-being of persons affected by Hansen’s disease is the
21
22
8
social da hanseníase: um estudo do perfil de doentes com hanseníase no município de São Paulo”,
Cadernos de Saúde Pública, vol. 8, No. 1 (2002).
Medical treatment and care for persons affected by Hansen’s disease is not restricted to curing the
infection, as the Special Rapporteur indicated in a previous report (A/HRC/38/42). The disease can
turn into a chronic and disabling condition that requires lifelong health care.
See Merrill Singer, Introduction to syndemics: a critical approach to public and community health
(San Francisco, Jossey-Bass, 2009).
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