Indigenous Child Health in Brazil

Improving the health status of indigenous children is a long-standing challenge. Several United Nations committees have identified the health of indigenous peoples as a human rights concern. Addressing the health of indigenous children cannot be separated from their social, cultural, and historic contexts, and any related health program must offer culturally appropriate services and a community perspective broad enough to address the needs of children and the local worlds in which they live. Evaluations of programs must, therefore, address process as well as impacts. This paper assesses interventions addressing indigenous children’s health in Brazil, ranging from those explicitly targeting indigenous children’s health, such as the targeted immunization program for indigenous peoples, as well as more generalized programs, including a focus upon indigenous children, such as the Integrated Management of Childhood Illness. The paper discusses the tensions and complexities of ethnically targeted health interventions as well as the conceptual and methodological challenge of measuring the processes employed and their impact. The lessons learned, especially the need for countries to more systematically collect data and evaluate impacts using ethnicity as an analytical category, are drawn out with respect to ensuring human rights for all within health sector responses. Anna R. Coates is the Chief of the Gender and Cultural Diversity Unit at the Pan American Health Organization/World Health Organization, Washington DC, USA. Sandra del Pino Marchito is the Cultural Diversity Advisor at the Pan American Health Organization/World Health Organization, Washington DC, USA. Bernardino Vitoy is the Specialist on Family and Community Health at the Brazil Office of the Pan American Health Organization/ World Health Organization, Brasilia, Brazil. Please address correspondence to Anna R. Coates, Email: [email protected] All authors are staff members of the Pan American Health Organization. The authors alone are responsible for the views expressed in this publication, and they do not necessarily represent the decisions or policies of the Pan American Health Organization. Competing interests: None declared. Copyright © 2016 Pan American Health Organization; licensee Health and Human Rights Journal. This is an open access article distributed under the terms of the Creative Commons Attribution NonCommercial IGO License (http://creativecommons.org/licenses/ by/3.0/igo/legalcode), which permits distribution and reproduction in any medium, for non-commercial uses provided the original work is properly cited. In any reproduction of this article there should not be any suggestion that PAHO or this article endorse any specific organization or products. This notice should be preserved along with the article’s original URL. Health and Human Rights Journal HHr HHR_final_logo_alone.indd 1 10/19/15 10:53 AM A. R. Coates, S. del Pino Marchito, and B. Vitoy / papers, 221-234 222 J U N E 2 0 1 6 V O L U M E 1 8 N U M B E R 1 Health and Human Rights Journal Introduction Indigenous children throughout the world suffer one of the most severe burdens of ill health of any population group, clearly reflecting the results of the intersection of multiple forms of inequalities. Across the globe, there are significant health disparities between indigenous and non-indigenous populations, ranging from infectious diseases such as HIV/AIDS, malaria, and tuberculosis to cardiovascular disease, diabetes, cancer, and respiratory diseases. Many of the most widespread causes of mortality among indigenous children are preventable, such as malnutrition, diarrhea, parasitic infections, and TB. In Latin America, indigenous infant mortality rates are consistently higher than those of the general population, ranging from 1.11 times higher in Chile to 3.09 times higher than the general population in Panama.1 This situation is an evident violation of the right to health, as expressed in the constitution of the World Health Organization: The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition. Several human rights treaty bodies have addressed the situation of indigenous children and their right not to be discriminated against, revealing a global-level awareness of their specific situation of vulnerability and the requirement for special measures in order that such children fully enjoy their rights.2 However, such bodies contemplate the right to health only minimally with respect to indigenous children; indeed, the committee on the CRC only covers it in specific terms in its General Comment No. 11: Indigenous Children and Their Rights Under the Convention.3 Despite this mixed picture, some countries, among them notably Brazil, have taken up the issue as a political priority, not only acceding to most international conventions but also putting into place dedicated institutional structures, policies, and programs that aim to ensure their implementation, as well as monitor their impact in terms of achieving the right to health for indigenous children. The explicit targeting of health interventions towards indigenous children on the basis of their ethnic identity is, however, not without tensions from a rights perspective. Similarly, the measurement of the impact of these interventions implies a degree of complexity from the same rights lens, as well as in terms of the conceptual and methodological challenges this measurement implies, and in terms of the need to take into account the rights issues associated with the process of achieving results. This paper is based upon a comprehensive review of secondary grey literature regarding the international framework that addresses the right to health of indigenous peoples in general and, specifically, of indigenous children. Reports submitted by the Government of Brazil to those relevant international human rights treaties that address the right to indigenous child health have also been considered and reviewed. The research also included a revision of policy documentation and other reports, laws, policies, and programs related to the health of indigenous children in Brazil. Relevant reports from human rights committees with specific recommendations to the country have also been taken into account.4 Normative frameworks addressing indigenous child health Global normative frameworks Of clearest global significance in relation to indigenous people’s rights generally is the 2007 adoption of the United Nations General Assembly Declaration on the Rights of Indigenous Peoples, which includes specific reference to the rights of indigenous children in a number of areas. However, despite its significance at a global level and as a policy reference at the country level, it is not a binding normative framework, and so does not serve as a mandate for UN Member States’ action and accountability. The most relevant binding normative frameworks that directly or indirectly address the rights of indigenous children include the Convention on the Elimination of All Forms A. R. Coates, S. del Pino Marchito, and B. Vitoy / papers, 221-234 J U N E 2 0 1 6 V O L U M E 1 8 N U M B E R 1 Health and Human Rights Journal 223 of Racial Discrimination (1965) (CERD), and especially the Committee’s General Recommendation No. 23, Indigenous Peoples (1997); the Convention on the Elimination of All Forms of Discrimination against Women (1979) (CEDAW); the International Covenant on Civil and Political Rights (1966); the International Covenant on Economic, Social and Cultural Rights (1966); and, importantly, the International Labour Organization Convention (ILO) No. 169 concerning Indigenous and Tribal Peoples in Independent Countries (1989). The latter convention regulates the rights of indigenous peoples, including health, and contains provisions that specifically highlight the rights of indigenous children regarding education.5 Of special importance is the Convention on the Rights of the Child (1990) (CRC), which offers a guide to States parties on their obligations towards children and their health, including indigenous children. Among other relevant articles, Article 24 of the CRC addresses the specific right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. It includes the obligations of States parties to take appropriate measures to: (a) diminish infant and child mortality; (b) ensure the provision of necessary medical assistance and health care to all children with emphasis on primary health care; (c) combat disease and malnutrition. The CRC’s provisions should be interpreted in line with other recommendations, which request States parties to work closely with indigenous peoples and organizations to seek consensus on development strategies, policies, and projects aimed at implementing children’s rights, and to especially address their health indicators, to ensure equal access for indigenous children to culturally appropriate health services.6 Regional normative frameworks Of specific relevance to health, member states of the Pan American Health Organization (PAHO) have paid specific attention to indigenous peoples’ rights to health. In 1993, PAHO’s 37th Directing Council passed Resolution CD37.R5: Health of the Indigenous Peoples of the Americas, which urged the formulation of policies and strategies geared towards specific indigenous populations and was aimed at ensuring their greater access to high-quality health services and care. This commitment was reiterated in 1997, with the approval of Resolution CD40.R6.7 In 2006, Resolution CD47.R18: Health of the Indigenous Peoples in the Americas, recognized the progress made by the Health of the Indigenous Peoples Initiative of the Americas (SAPIA) while acknowledging the persisting inequities in access to health services affecting indigenous peoples.8 In addition, PAHO member states’ approval in 2010 of a specific resolution on health and human rights confirmed a commitment to take into account international and regional human rights norms and standards, including those protecting indigenous children’s rights, as the guiding principles for all health initiatives in the region.9 PAHO member states have also recently approved Resolution CD53.R14: Strategy on Universal Access to Health and Universal Health Coverage, which refers to ethnicity as essential to the core principles and aims of universal care and access, and considers gender, ethnicity, age, and economic and social status as specific social determinants that have a potential positive or negative impact on health inequities.10 Other mechanisms have also been set in place to advance towards ensuring the right of indigenous children to health.11 In 2001, the United Nations Commission on Human Rights appointed a special rapporteur on the situation of human rights and fundamental freedoms of indigenous peoples, subsequently confirmed by the Human Rights Council in 2007. However, although the Council has requested the special rapporteur to pay particular attention to the situation of indigenous children and relevant reports including the situation of indigenous children have been elaborated, these have not to date included or generated specific studies addressing the health of indigenous children.12 Nevertheless, when the United Nations Permanent Forum on Indigenous Issues held its second session in 2003 on indigenous children and youth, states were urged to undertake and promote the expansion of national health systems in order to provide holistic health programs for indigenous A. R. Coates, S. del Pino Marchito, and B. Vitoy / papers, 221-234 224 J U N E 2 0 1 6 V O L U M E 1 8 N U M B E R 1 Health and Human Rights Journal children incorporating preventive medical practices and family and community participation. A rights-based approach to health programs for indigenous children Although only the CRC’s General Comment No. 11 specifically refers to the right to health of indigenous children, the references to indigenous peoples and to indigenous children within these varied mandates have proven essential tools for promoting country-level actions and for advocacy to accelerate such efforts. The existence of relevant normative frameworks is of crucial significance in mandating countries to act. Implementing these mandates can, however, be a challenge for many countries, particularly in responding to the specific objectives and principles of rights-based programs aimed at closing health inequities at the heart of these various normative frameworks in the contexts of the complex realities of social, cultural, and economic exclusion faced by indigenous populations in the region; the profundity of the health inequities faced by indigenous children; and the relative weakness of health systems. Rights-based health policies, strategies, and programs are generally understood to be those that aim to progressively eliminate all barriers to the enjoyment of the right to health for all members of a population. Standards and principles to ensure this goal include non-discrimination, availability, accessibility, affordability, and participation. The precise meanings and applications of these principles with respect to indigenous populations, and particularly indigenous children, can be fraught with complexity but are arguably essential to ensure the success of any particular program targeted towards these communities. In particular, participation cannot be overemphasized, as addressing the health of indigenous children cannot be separated from the social, cultural, and historic contexts in which it takes place. Therefore, any specific health program for indigenous children must offer a community perspective broad enough to address both the needs of children and the local worlds in which they live. Nevertheless, engaging communities in an intercultural dialogue requires a special combination of political will and local capacity that can be difficult to construct, and the engagement of children and their families adds another layer of complexity. Without this engagement, however, even targeted approaches are likely to have limited impact. Similarly, since cultural barriers can often present the most complicated challenge to overcoming barriers to health for indigenous peoples, intercultural approaches are vitally important. However, there is often little understanding of the social and cultural factors deriving from the knowledge, attitudes, and practices in health of indigenous peoples, thus specific expertise is required to employ participatory methodologies in each context to identify relevant beliefs, practices, and traditions, and ensure that interventions are designed that incorporate these into biomedical approaches to health, to the greatest degree possible.13 Successful examples of such ‘intercultural approaches’ include the incorporation of safe traditional birthing practices in maternal health services in Ecuador and Peru, where the Institute of Social Security offers alternatives in addition to Western medicine, such as traditional medicine. In Colombia, the intercultural approach has been taken a step further in the indigenous hospital of Pueblo Bello, in Valledupar, with 80% of the hospital’s professional staff of indigenous identity/origin. This incorporation is likely to increase the acceptability—and hence the accessibility—of health services. Indeed, without such intercultural approaches as a fundamental building block of approaches to eliminate health disparities, the cultural rights of specific ethnic groups are arguably not guaranteed and thus health service provisions are discriminatory. The principle of acceptability implies that services must be culturally and socially acceptable. Non-discrimination and equality imply the recognition by the state of different and specific needs of groups facing particular health challenges. The obligation to ensure non-discrimination requires specific health standards to be applied to particular population groups. A. R. Coates, S. del Pino Marchito, and B. Vitoy / papers, 221-234 J U N E 2 0 1 6 V O L U M E 1 8 N U M B E R 1 Health and Human Rights Journal 225 Accountability for the right to health: Measuring impact on indigenous population Accountability for such rights-based programming, in this respect, clearly includes the need to measure the process of interventions aimed at improving the health of indigenous children as well as equitable outcomes, or at least paying specific attention to the impact of interventions on particularly marginalized target populations (here, indigenous children) in order to ensure that states meet the commitments of the various normative mandates. Data are therefore crucial to the generation of evidence not only on the generalities of the health of particular groups, such as indigenous children, and to reveal the different scenarios that may leave specific groups of indigenous children unprotected or invisible (such as, for example, migrant indigenous children, or children living in prisons with incarcerated parents) but also to track this process and its results. However, data disaggregated by ethnicity are notoriously scarce, in part because of the methodological and political complexities of making concrete a concept such as ethnicity in a rigorously comparable variable and thus as a stratifier of health equity. This complexity arises from the nature of the concept itself which, unlike the supposedly biological stratifier of race, has been used to denote groupings of human society “that entertain a subjective belief in their common descent because of similarities of physical type or of customs or of both, or because of memories of colonization or migration.”14 It is then, as Anderson termed it, “an imagined community.”15 Furthermore, the use of the term as a means of identification of a person, or a group, has yet more complex rights dimensions, since this subjective belief, or perception, of belonging to a particular ethnicity can be “claimed by the people themselves [or] attributed to them by others.”16 Great care needs to be taken with, on the one hand, the avoidance of assigning people to an ethnic group (itself a potentially prejudicial act) and, on the other, identifying the ethnic identity of a given person in order to ensure that person does not suffer from discriminatory treatment. Only by including ethnicity as a stratifier in data analysis, and hence in information systems, is it possible to track impact and for the human rights mandates embodied in the various conventions and instruments noted in this article to have true meaning. Without data, it is impossible to hold countries totally accountable for these commitments, and indeed for countries themselves to formulate evidence-informed policies and programs and monitor their effectiveness. Many countries, therefore, are making substantial strides towards the identification of ethnicity as a stratifier and the measurement of ethnic inequities in health, many on the basis of self-identification in attempts to circumvent these issues. This identification of impact on specific ethnic groups via the inclusion of ethnic identity as a stratifier is of crucial importance to impact measurement and, hence, the success—or otherwise—of health programs in meeting the human rights commitments outlined in the normative agreements. However, above and beyond impact upon ethnic disparities in health, measuring the process (in terms of the ways in which a particular program has incorporated human rights principles of specific relevance to indigenous populations) and any causal relationship between the impacts and the process employed is more complex but equally important.