A/HRC/41/47
disease; dependency of women’s access to health services on third-party authorization;
women’s limited mobility; illiteracy; and poor knowledge of leprosy. 16
31.
Women’s socioeconomic life conditions, such as quality of nutrition (suggested by
some studies to impact cell-mediated immunity and influence the progression of the
disease)17 or daily household activities (hindering self-care and exposing women to physical
trauma that can lead to impairments), influence public health strategy outcomes at the
micro social and individual levels.
32.
The global health system at the macro level should also be targeted towards
improving the well-being of women affected by leprosy. Knowledge gaps are a harsh
reality when it comes to the linkage between leprosy and sexual and reproductive health.
Such correlation is hypothesized by independent studies on the following topics: (a)
pregnancy and lactation may be contributing factors to leprosy reactions and subsequent
nerve damage (the main cause of leprosy-related impairments); (b) leprosy may affect
women’s fertility; (c) the health of newborns and children may be impacted by their
mother’s leprosy status.18
33.
There is sufficient knowledge on the side effects of available drugs for treating
leprosy on women’s sexual and reproductive rights: (a) thalidomide, a drug that treats
nerve-damaging reactions, if not properly managed with informed consent can lead to
malformation in babies; (b) clofazimine, one of the first-line drugs used in multidrug
therapy, 19 produces reversible skin pigmentation, which nonetheless may cause adverse
consequences on women’s social life; and (c) steroids, commonly used for treating nerve
damage, can cause dependence and its chronic use can lead to irreversible changes in bodily
appearance, decalcification and diabetes, negatively impacting women’s quality of life.
34.
Lack of gender-sensitive strategies and obsolete drugs reflect the negative synergies
between the patriarchal nature of biomedicine as an institution that still fails to take into full
consideration sexual and reproductive rights (A/HRC/32/44) and the increasing
mercantilization of health, which is responsible for the disinvestment in basic and
pharmacological research on diseases with greater incidence among marginalized
populations. Unmistakably, one of the cross-cutting effects of the mercantilization of health
is the prorogation of obsolete drugs that can be simultaneously inefficient and capable of
generating iatrogenic effects that, given general patterns of gender subordination,
marginalization and invisibility, have a greater impact on women.
35.
Clearly, leprosy in women is a typical instance of the intersection of the institutional
and extra-institutional mediating factors of health, well-being and enjoyment of rights at the
different macro, intermediary, micro and individual levels. 20 Leprosy in women is also
testimony to the need for a human rights approach, based upon the principles of
intersectionality/affirmative action, vulnerability/intersectorality and lay knowledge/
participation (A/HRC/38/42).
36.
Evidence suggests that women affected by leprosy are structurally more
discriminated against than men affected by leprosy. Studies point to gender disadvantage in
the social, health and/or psychological domain, with a higher percentage of women
experiencing stigmatization and lower quality of life.21 However, such studies seldom take
16
17
18
19
20
21
U.-B. Engelbrektsson, Challenged Lives: A Medical Anthropological Study of Leprosy in Nepal
(Göteborg, Sweden, University of Gothenburg, 2012); and I. Schuller and others, “The way women
experience disabilities and especially disabilities related to leprosy in rural areas in South Sulawesi,
Indonesia”, Asia Pacific Disability Rehabilitation Journal, vol. 21, No. 1 (2010), pp. 60–70.
Sarkar, “Leprosy and women”.
Ibid.
Leprosy is curable with a combination of drugs known as multidrug therapy.
A. Cruz, “Leprosy as a multilayered biosocial phenomenon: the comparison of institutional responses
and illness narratives of an endemic disease in Brazil and an imported disease in Portugal”, Clinics in
Dermatology, vol. 34, No. 1 (2016), pp. 16–23.
J. Dijkstra, W.V. Brakel and M.V. Elteren, “Gender and leprosy-related stigma in endemic areas: a
systematic review”, Leprosy Review, vol. 88 (2017), pp. 419–440; and R.M. Peters and others,
“Narratives around concealment and agency for stigma-reduction: a study of women affected by
7
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