TB in Vulnerable Populations

This article analyzes the factors associated with vulnerability of the Ashaninka, the most populous indigenous Peruvian Amazonian people, to tuberculosis (TB). By applying a human rights-based analytical framework that assesses public policy against human rights standards and principles, and by offering a step-by-step framework for a full assessment of compliance, it provides evidence of the relationship between the incidence of TB among the Ashaninka and Peru’s poor level of compliance with its human rights obligations. The article argues that one of the main reasons for the historical vulnerability of the Ashaninka to diseases such as TB is a lack of political will on the part of the national government to increase public health spending, ensure that resources reach the most vulnerable population, and adopt and invest in a culturally appropriate health system. Camila Gianella, PhD, is researcher at Chr. Michelsen Institute in Bergen, Norway, and post-doc researcher at the Department of Comparative Politics, University of Bergen, Norway. César Ugarte-Gil is Consultant at Salud Sin Limites Peru, and Research Associate at Instituto de Medicina Tropical Alexander von Humboldt, Universidad Peruana Cayetano Heredia, Lima, Peru; and PhD student at Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA. Godofredo Caro, is TB consultant medical doctor at Mantaro Health Network, Junin Health Directorate, Junín, Perú. Rula Aylas, is member of the technical team at Indigenous Health Directorade at the Ministry of Health, Lima, Perú César Castro, is lecturer at School of Nursing Universidad Peruana Los Andes, Huancayo, Perú. Claudia Lema, is Executive Director at Salud Sin Limites Peru, Lima, Peru. Corresponding author: Camila Gianella. [email protected] Competing interests: None declared. Copyright © 2016 Gianella, Ugarte-Gil, Caro, Aylas, Castro, and Lema. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited. Health and Human Rights Journal HHr HHR_final_logo_alone.indd 1 10/19/15 10:53 AM C. Gianella, C. Ugarte-Gil, G. Caro, R. Aylas, C. Castro, and C. Lema / TB and the Right to Health, 55-68 56 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 There is growing acceptance of the close relationship between tuberculosis (TB) and structural factors such as global and national socioeconomic inequalities, discrimination, poverty, malnutrition, and weaknesses in health systems.1 Recognition of this relationship has led to increasing agreement on the need to include social determinants of TB among the targets of TB programs. This recognition of the part played by social determinants of health with regard to TB involves identifying states’ responsibilities and the role of other actors in the distribution of the social determinants of TB, as well as the availability of, and access to, care (diagnosis and treatment): that is, making the assertion that TB is a human rights issue. This is a critical feature of the fight against TB, in which emerging approaches to reducing the catastrophic cost of the disease are prioritizing top-down interventions. These, in line with a biomedical tradition, are centered on producing variations such as behavioral changes in individuals with TB by means of conditional cash transfers, leaving aside the implementation of measures for addressing structural forces such as inequity, which not only make certain groups more vulnerable to the disease, but also create barriers to access to health care.2 The adoption of a human rights framework for TB requires a shift in the paradigm, a move away from an approach in which health is defined by experts scientifically and objectively, in isolation from the broader contexts in which people actually live. This is no easy task in the field of infectious diseases such as TB, which has traditionally been understood with reference to a biomedical paradigm, and addressed from the point of view of biological individualism.3 The more communitarian interventions have generally sought to increase TB patients’ autonomy, and to empower them. Many of these interventions have adopted a “rights discourse” at a formal level, and are portrayed as interventions aimed at providing social protection for TB patients (that is, reducing poverty and vulnerability), but they have neither challenged the paradigm of biological individualism nor challenged the structural conditions that make certain groups more vulnerable to TB. The aim of this article is to provide evidence of the relationship between TB within vulnerable groups and the level of compliance of states with their human rights obligations. By so doing, it seeks to make a contribution to efforts to expand the use of human rights-based analysis in the TB field, and to demonstrate its usefulness and strengths. In order to assess the current state of compliance, this paper has adopted the methodological framework known as OPERA, developed by the Center for Economic and Social Rights.4 OPERA assesses public policy compared with human rights standards and principles, and offers a step-by-step framework for making a full assessment of compliance: Outcomes, Policy Efforts, Resources, and Assessment. OPERA is based on a multidisciplinary approach that includes input from legal, social sciences, statistics, public policy, and economic fields. OPERA’s analytical approach is in line with the increasing recognition of the fact that health is crucially determined by factors beyond the health sector itself, including the distribution of economic resources, information, and power dynamics at global, national, and local levels.5 The OPERA framework allows these structural factors to be connected with states’ human rights commitments, and demonstrates the relationship between poor health outcomes and shortfalls on the part of states in the fulfilment of their human rights obligations. The article focuses its analysis on a specific vulnerable group: the Ashaninka, the largest indigenous Peruvian Amazonian people. Owing to the aggressiveness of TB among this population, the Ashaninka are considered to be highly vulnerable to the disease, and consequently are a prioritized group for the purposes of the Peruvian National Tuberculosis Control Program (NTCP).6 However, this high level of vulnerability has mainly been portrayed as a medical phenomenon that excludes an analysis of the disease and its relationship with exclusion structures, or with the level of state compliance with human rights obligations. Our analysis is based on two principal sources of information. The first is a study commissioned C. Gianella, C. Ugarte-Gil, G. Caro, R. Aylas, C. Castro, and C. Lema / TB and the Right to Health, 55-68 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 57 by the Peruvian National Tuberculosis Program, the objective of which was to design a care model for TB prevention and control aimed at the Ashaninka communities. This study was prepared between September 2014 and January 2015 with the participation of two of the authors of this article, Lema and Ugarte-Gil.7 The study collected information from 18 indigenous communities within the catchment area of nine public health clinics in the Pangoa and Río Negro districts of Junín, and included interviews and focus groups with community members and current and former TB patients, and interviews with health care workers. The second source of information was a desk study that included a review of documents and articles produced by the Peruvian Government (including the Ministry of Health, the Peruvian National Tuberculosis Program and the National Multisectoral Coordinator in Health for Global Fund Projects), multilateral agencies such as the World Health Organization (WHO), non-governmental organizations (NGOs), and researchers working on TB and/or with the Ashaninka population in Peru. Peru: Country background The distinctive features of Peru include gaps in development and inequities among regions, geographic locations, ethnic groups, and gender. These gaps have persisted despite the country’s economic development. Although Peru is an upper-middle-income country with a gross national income per capita (GNI PPP) of US$11,279.88, a quarter of the population lives in poverty. The notable disparities in the distribution of wealth— income inequality is 48.1—are closely related to gender and ethnic background. It is difficult to establish a single marker of ethnicity in Peru; however, if mother tongue (primary language) is used, it is possible to detect significant differences among ethnic groups. For example, 78% of all indigenous children and adolescents live in poverty, compared with 40% of Spanish-speaking children. Poverty is also more prevalent among rural populations (53%, compared with 16.6% in urban areas), and affects indigenous populations disproportionately (66% of indigenous Peruvian people live in rural areas). Among the indigenous Peruvian population, the Amazonian peoples face a higher incidence of total or extreme poverty (81% and 41%). As regards the organization of its health system, Peru established its Comprehensive Health Insurance System (Seguro Integral de Salud or SIS) in 2002, in order to “expand health coverage by reducing economic barriers through the elimination of user fees for a package of services.”8 The SIS increased enrolment in health insurance (from 41.7% in 2003 to 54.1% in 2008) and played a significant role in the improvement of certain indicators such as maternal and child mortality, but failed to ensure the provision of integrated health care. In practice, the SIS mostly provided health services for women and children under 18 years old, but did not provide comprehensive care to the adult population as a whole.9 Consequently, a new policy, known as Universal Health Insurance (Aseguramiento Universal de Salud or AUS) was approved in 2009 with the aim of “providing universal health coverage to the entire Peruvian population.”10 The AUS contemplates the provision of a basket of services (Plan Esencial de Aseguramiento en Salud or PEAS) to the entire Peruvian population. There are three mechanisms for enrollment in the AUS: through insurance contributions (payroll deductions and private payments), semi-contributions (a combination of private and public contributions to cover informal and small business workers), and subsidized insurance for the poor (covered by public funds, and intended to replace the SIS). There has been little progress in the implementation of the AUS to date, however: according to some scholars, the SIS’s resources are not sufficient to cover the PEAS.11 As resources allocated to health sector remain low, it is not clear how the costs of the PEAS for the worst-off will be covered. Information on health insurance coverage among indigenous peoples is not available. The reports on health insurance coverage prepared by the authorities only identify the percentage of the population covered by regions and provinces (totals) and type of insurance, and do not offer data disaggregated by ethnicity. C. Gianella, C. Ugarte-Gil, G. Caro, R. Aylas, C. Castro, and C. Lema / TB and the Right to Health, 55-68 58 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 The Ministry of Health (MoH) is in charge of TB prevention and treatment through the National Tuberculosis Program (NTP). In principle, the NTP has been available to the entire population through the public health service network for many years at no direct cost. It provides a wide range of services, including diagnostic tests, HIV testing, and TB treatment (under the Directly Observed Treatment, Short Courses (DOTS) scheme, which was implemented nationwide in 1991). The indigenous Amazonian people of Peru were selected for this research because of a high incidence of TB and the aggressiveness of the disease in this population group. Oil exploration and logging in indigenous Amazon territories have led to an influx of workers who have exposed the indigenous people to new diseases. When TB arrives in a population that has not been previously exposed to it, such as the indigenous Amazonian people, it develops more aggressively, with a high percentage of extra-pulmonary TB accompanied by a rapid spread within the communities.12 This study focuses on the Ashaninka from the Junín region. The Ashaninka make up the largest Peruvian Amazonian indigenous group, and 54.74% of them live in Junín.13 In addition, according to data gathered from Peruvian indigenous peoples (not in the form of a regular MoH report), the Ashaninka who have settled in Junín have the highest prevalence of TB.14 Like other Peruvian indigenous Amazonian peoples, the Ashaninka are subject to social exclusion, and have lived through a history of mistreatment and disproportionate violence. They suffered during the internal armed conflict between 1980 and 2000 to an undue degree: 6,000 Ashaninka were murdered, 10,000 were forcibly displaced, 5,000 were kidnapped and held prisoner for years, and dozens of their communities disappeared.15 Because their territories are so rich in natural resources such as wood, oil, minerals, and water, the Peruvian Amazonian indigenous peoples, including the Ashaninka, are currently facing new struggles with the national government, many of which are related to a refusal on the part of the national authorities to recognize indigenous peoples’ right to be consulted prior to extractive activities being developed in their ancestral territory. Consequently, land property, and title to land, are critical and highly sensitive issues in Peru. The Peruvian Amazon comprises 60.9% of the national territory, and indigenous peoples have 27.1% of the Amazon under ownership or assignment or in their possession, but despite this many hundreds of indigenous communities lack any legal title which places them in a vulnerable situation.16 The vulnerability of indigenous communities has been aggravated by the pro-private investment policies adopted by Peru, of which one example is Law 30230, passed in July 2014, which weakens environmental safeguards to promote private investment. Law 30230 also increases the vulnerability of, and pressures on, indigenous territories by granting the central government powers to allocate land rights for large investment projects (including mining, forestry, and agribusiness), regardless of the land’s current or future use. Law 30230 represents a major setback for the country’s policies on climate change, and was approved without the technical approval of the Ministry of Environment. The Junín Ashaninka have not been isolated from these struggles: gas exploration in the Ashaninka territory in Junín without prior consultation has triggered major protests in recent years.17 They also have an ongoing legal struggle with the national government relating to construction of the Pakitzapango hydroelectric dam, which would flood much of the Ene River valley, thereby forcing the Ashaninka to migrate.18 Step 1 – Outcomes: Assessing the level of enjoyment of rights The outcomes step assesses the enjoyment of rights, applying the human rights standards of minimum core obligations, non-discrimination, and progressive realization. This analysis, mainly based on descriptive data, allows measuring the extent of the realization of the right(s) under review in the C. Gianella, C. Ugarte-Gil, G. Caro, R. Aylas, C. Castro, and C. Lema / TB and the Right to Health, 55-68 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 59 country. The application of these standards is not arbitrary; the “minimum core obligation standard” measures the aggregate levels of rights enjoyment, the standard of “non-discrimination” assesses disparities in rights enjoyment, while the standard of “progressive realization” measures changes and progress over time on the rights enjoyment.19 Peru is home to 3.1% of the population of the Americas, and yet it reports 13.6% of TB cases (new and relapses) and 41% of confirmed cases of multidrug-resistant TB (MDR-TB) in Latin America.20 Its incidence and prevalence exceed both regional (121 per 100,000 inhabitants and 95 per 100,000 inhabitants respectively, compared to the regional incidence of 29 per 100,000 inhabitants and prevalence of 40 per 100,000 inhabitants) and world levels.21 If Peru is compared with other Latin American countries with similar or lower GDPs, its poor performance becomes evident: all Latin American countries with similar or lower GDPs have lower rates of incidence of TB (see Figure 1). Peru’s high incidence contradicts what has been suggested by some scholars, such as Janssens and Rieder who have found a relationship between TB incidence rates and national income.22 This result suggests that in the case of Peru, national income is not the principal reason behind the high rates of TB. As regards the principle of non-discrimination, there are no reliable data on the prevalence of the disease by ethnicity; these data are not collected, because the form designed and used by the Peruvian National Tuberculosis Program (NTP) has no fields relating to ethnicity. In relation to the progressive realization of rights, it should be noted that Peru was a pioneer on implementing the Directly Observed Treatment, Short Courses (DOTS) program at a national level.23 Implementation of the DOTS, which is free of charge nationally, has produced a number of positive results: there has been a sustained decrease in the number of cases of sensitive TB (which form the majority of cases) at a national level, and the NTP has maintained the percentage of cured patients over 80% for many years.24 The numbers of cases of MDR-TB have continued to grow, however, and the emergence of extensively drug-resistant tuberculosis (XDR-TB) in Peru constitutes a threat to the country.25 Besides, although Peru has declared that MDG 6C on TB control has been achieved, reporting a national incidence rate of 90.3 per