Where Public Health Meets Human Rights

In 2014, the World Health Organization (WHO) initiated a process for validation of the elimination of mother-to-child transmission (EMTCT) of HIV and syphilis by countries. For the first time in such a process for the validation of disease elimination, WHO introduced norms and approaches that are grounded in human rights, gender equality, and community engagement. This human rights-based validation process can serve as a key opportunity to enhance accountability for human rights protection by evaluating EMTCT programs against human rights norms and standards, including in relation to gender equality and by ensuring the provision of discrimination-free quality services. The rights-based validation process also involves the assessment of participation of affected communities in EMTCT program development, implementation, and monitoring and evaluation. It brings awareness to the types of human rights abuses and inequalities faced by women living with, at risk of, or affected by HIV and syphilis, and commits governments to eliminate those barriers. This process demonstrates the importance and feasibility of integrating human rights, gender, and community into key public health interventions in a manner that improves health outcomes, legitimizes the participation of affected communities, and advances the human rights of women living with HIV. Eszter Kismödi, JD, LLM, is an international human rights lawyer in Geneva, Switzerland, and a visiting scholar at Yale Law School and School of Public Health, New Haven, CT, USA. Karusa Kiragu, MPH, PhD, is UNAIDS Country Director, Uganda. Olga Sawicki, MD, MPH, is Carlo Schmid Fellow at UNAIDS, Geneva, Switzerland. Sally Smith, MSc, is senior adviser, Community and Faith Engagement, UNAIDS, Geneva, Switzerland. Sophie Brion, JD, MPP, is a human rights attorney for the International Community of Women Living with HIV Global Office, Washington, DC, USA. Aditi Sharma is consultant for the Global Network of People Living with HIV, Brighton, UK. Lilian Mworeko is executive director of International Community of Women Living with HIV Eastern Africa, Kampala, Uganda. Alexandrina Iovita, MPH, PhD, is human rights and law adviser at UNAIDS, Geneva, Switzerland. Please address correspondence to Eszter Kismödi. Email: [email protected]. Competing interests: None declared. Copyright © 2017 Kismodi, Kiragu, Sawicki, Smith, Brion, Sharma, Mworeko, and Iovita. 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 e. kismödi, k. kiragu, o. sawicki, s. smith, s. brion, a. sharma, l. mworeko, and a. iovita / HIV and Human Rights, 237-247 238 D E C E M B E R 2 0 1 7 V O L U M E 1 9 N U M B E R 2 Health and Human Rights Journal Introduction In 2015, Cuba became the first country to be officially validated by the World Health Organization (WHO) for the successful elimination of mother-tochild transmission (EMTCT) of HIV and syphilis.1 Since then, several other countries and territories have been successfully validated, including Thailand, Belarus, Anguilla, Montserrat, Cayman Islands, Bermuda, St. Kitts and Nevis, and Antigua and Barbuda for dual elimination, Armenia for EMTCT of HIV, and Moldova for elimination of syphilis. Over 80 countries are considering applying for, or are in the advanced stages of validation.1 The WHO-led process of EMTCT validation is a unique disease elimination certification process that proves the feasibility and value of the integration of human rights standards and community participation into public health interventions. From both public health and human rights perspectives, this WHO EMTCT validation process is remarkable for several reasons. First, validation involves the fulfillment of epidemiological and public health criteria that illustrate the successes of global and national efforts to address vertical transmission of HIV and syphilis. This biomedical criterion relates to the reduction in the number of new babies born with HIV below a threshold low enough that it no longer constitutes a public health problem.2 This criterion is also being applied to EMTCT of syphilis, which can be prevented through simple, low-cost screening and treatment of pregnant women. Since the antenatal services to prevent mother-to-child transmission of HIV and syphilis are similar, dual elimination is being pursued to harmonize improvements in maternal and child health.3 Second, EMTCT certification also includes— for the first time in history—human rights, gender equality, and meaningful community engagement as key factors in evaluating whether a country should receive certification for a health achievement. The inclusion of these factors among the validation criteria is a reflection of the increased understanding that the realization of human rights can foster the achievement of public health goals. It also signals that the respect and fulfillment of these principles are critical goals in themselves. Historically, public health approaches to disease control and elimination have focused on biomedical and technical approaches rather than addressing human rights and social determinants of health.4 However, in the context of HIV, networks of people living with HIV, and particularly, networks of women living with HIV have consistently identified gender inequality and human rights abuses, including discrimination, as obstacles to treatment, care, and support, and have called for greater focus on human rights, gender equality, and community engagement.5 These efforts recognize that human rights, gender equality, and community engagement are essential factors that influence: how health systems are shaped both at community and country level; the national and international legal and policy environment within which these systems operate; and the overall social and economic context of people’s access to and use of these services.6 Earlier in the HIV epidemic, access to medicines for EMTCT came to epitomize the struggle for human rights in the context of HIV in South Africa and globally.7 The refusal of the South African government to provide access to antiretroviral treatment for EMTCT was challenged before the court by civil society. In a landmark ruling, the Constitutional Court of South Africa held that the constitutional rights of pregnant women living with HIV were being violated by the failure to provide them with anti-retroviral medicines.8 While countries across the world have been implementing EMTCT programs since the late 1990s to early 2000s, global efforts to accelerate the elimination of vertical transmission of HIV gained momentum in middleand low-income countries around 2009, when UNAIDS published its Business Case as part of the Outcome Framework.9 This joint publication with WHO, UNICEF, and UNFPA laid the groundwork for the elimination of vertical transmission, including its definition and its indicators. The biggest impetus for the development of rights-based validation of EMTCT was the launch of the Global Plan Towards the Elimination e. kismödi, k. kiragu, o. sawicki, s. smith, s. brion, a. sharma, l. mworeko, and a. iovita / HIV and Human Rights, 237-247 D E C E M B E R 2 0 1 7 V O L U M E 1 9 N U M B E R 2 Health and Human Rights Journal 239 of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive (“Global Plan”), initiated by UNAIDS and PEPFAR. The Global Plan was launched in July 2011 at the United Nations General Assembly High-Level Meeting on AIDS in New York. It prioritizes 22 countries with the highest number of pregnant women living with HIV in need of services. These countries are Angola, Botswana, Burundi, Cameroon, Chad, Côte d’Ivoire, the Democratic Republic of the Congo, Ethiopia, Ghana, India, Kenya, Lesotho, Malawi, Mozambique, Namibia, Nigeria, South Africa, Swaziland, Uganda, the United Republic of Tanzania, Zambia, and Zimbabwe. Together, these countries accounted for 90% of the total number of pregnant women living with HIV that needed services to prevent mother-tochild transmission of HIV in 2009. The goals of the Global Plan were to reduce the number of new HIV infections among children by 90%, and to reduce the number of AIDS-related pediatric and maternal deaths by 50%. This plan was “global” in nature, and it galvanized leadership, engaged front-line communities, and stimulated innovative approaches and new technologies to prevent, diagnose, and treat HIV.10 It called for the respect and fulfillment of the rights of women living with HIV, and for community empowerment and engagement.10 It brought together a diverse set of stakeholders, including governments, funders, the private sector, networks of women living with HIV, civil society, and many more; seized political momentum for planning and action; and set bold targets enabling accountability.11 Countries which had reduced vertical transmission of HIV to negligible levels seized the momentum generated by the Global Plan to ask for avenues to officially recognize their achievements. WHO understood the potential of such process not only for recognizing achievements but also for maintaining and encouraging continuous efforts towards EMTCT. In response to these calls, WHO thus developed a process through which countries could be validated as having eliminated vertical transmission of either HIV, syphilis, or both. Tools to guide the validation process and to conduct country assessments were developed and a governance mechanism at global, regional, and country levels was formulated. In light of the serious human rights violations that have been reported in maternal and child health care settings, including rampant discrimination and involuntary sterilization, networks of women living with HIV and UNAIDS advocated the inclusion of rights-based elements to be integrated into EMTCT validation criteria and processes.12 This article describes the human rights, gender equality, and community mobilization principles, norms, and approaches that are included in the EMTCT validation tools and process. It also provides insights into the implementation of these principles, norms, and approaches during the validation process. Finally, the article reflects on the benefit and impact of this first-ever rights-based process for the validation of disease elimination. Conceptual elements of the rights-based validation process The criteria to validate EMTCT of HIV and syphilis were developed to apply across a wide range of epidemiological and programmatic contexts, including the assessment and evaluation of appropriate health services infrastructure, staff capacity and training, laboratory preparedness, and high quality monitoring and surveillance systems.13 In addition to these, rights-based conceptual elements of the validation entail the inclusion of human rights, gender equality, and community engagement among the required validation criteria through such elements as informed consent, respect for privacy, confidentiality and autonomy, and decriminalization of HIV non-disclosure, exposure, and transmission. It also includes the manifestation of these principles in the validation process itself, such as inclusion of human rights experts in the validation committees, as well as participation of women living with HIV in each step of the process. These key elements of the validation are outlined in “Global Guidance on Criteria and Processes for Validation of Elimination of Mother-to-Child Transmission of HIV and Syphilis,” which describes the minimum global processes and criteria that countries should present to achieve validae. kismödi, k. kiragu, o. sawicki, s. smith, s. brion, a. sharma, l. mworeko, and a. iovita / HIV and Human Rights, 237-247 240 D E C E M B E R 2 0 1 7 V O L U M E 1 9 N U M B E R 2 Health and Human Rights Journal tion of EMTCT, and is intended for national and regional validation committees as they prepare or review national submissions requesting validation. While the human rights, community engagement, and gender equality validation process requires the engagement of specific actors and expertise, and collection of particular information, it is seen as an integral part of the overall validation process. The first edition of this global EMTCT guidance document was released in 2014 by WHO, while the second edition was developed by WHO and the Global Validation Advisory Committee (GVAC) in 2017.14 While both editions are inclusive of rightsbased principles, the second edition is much more comprehensive and explanatory in regard to the operationalization of human rights, gender equality, and community engagement principles.15 Consistency with international, regional, and national human rights standards Besides the various health system criteria, a key consideration for the validation of a country is that the interventions to reach the targets have been implemented in a manner consistent with international, regional, and national human rights standards.11 The rights-based elements and requirements of the validation process are captured in the tool and guidance on Elimination of Motherto-Child Transmission of HIV and Congenital Syphilis: Assessment of Human Rights, Gender Equality and Community Engagement Dimensions of National Programmes, which was developed in collaboration with the International Community of Women Living with HIV (ICW) and Global Network of People Living with HIV/AIDS (GNP+).16 They were invited into this process to develop a clear framework and criteria for human rights, gender equality, and community engagement standards by which to evaluate EMTCT programs for validation. The standards were developed in direct consultation with networks of women living with HIV and other experts on human rights, gender equality, and community engagement. This tool and guidance is one of four core assessment tools to be used by all EMTCT stakeholders throughout the validation process; the others include the evaluation of national programmatic elements, the laboratory services, and the quality of data. Human rights issues being investigated and evaluated through the validation process include: whether or not vertical transmission of HIV is criminalized; whether health care settings are free from mandatory or coerced testing and treatment, forced and coerced abortion, contraception and/or sterilization; and whether informed consent, confidentiality and privacy, and equality and non-discrimination are respected, protected, and fulfilled. The validation process also recognizes inclusion and meaningful participation as a human rights concept in programmatic efforts. As an illustration, the process investigates whether certain population groups, such as migrants or sex workers are systematically included in EMTCT programs and the provision of services.