In 2011 UNAIDS and PEPFAR launched the ‘Global Plan towards the elimination of new HIV infections among children by 2015 and keeping their mothers alive’ (UNAIDS, 2011). A global initiative to stimulate leadership, investment, new approaches and technology, involvement of communities to prevent, diagnose and treat HIV in young women. The plan led to the development of standardized criteria, technical guidelines and indicators to prevent new HIV infections among women and unintended pregnancies; to prevent transmission of HIV from mothers living with HIV to their infants and to provide HIV care, treatment and support for women, children living with HIV and their families (UNAIDS, 2011). In the context of this initiative indicators to measure community engagement were developed and the technical agencies invited the International Community of Women living with HIV (ICW) and Global Network of People Living with HIV/AIDS (GNP+) to work alongside UNAIDS to develop a clear framework and criteria to evaluate how national efforts to end vertical transmission met with human rights, gender equality and community engagement standards.

Aim: To develop, pilot and implement a tool to assess the extent to which the elimination of vertical transmission of HIV in a country has been achieved in a manner that respects human rights, gender equality and the meaningful engagement of people living with HIV.

Objectives: The validation process assesses the extent to which the implementation of EMTCT has respected:

Human rights: international, regional and national human rights standards (UNAIDS, 2016);

Gender equality: attempted to address gender norms and practices, the sexual and reproductive health and reproductive rights of women and gender-based violence and its consequences with regard to HIV and STI (WHO, 2014)

Community engagement: recognized the importance of meaningful engagement of communities in line with the ‘Greater involvement of people living with HIV (GIPA) principle’ (UNAIDS, 2007)

Both UNAIDS and WHO adopt a broad definition of public health in their technical strategies on HIV/AIDS, which includes not only biomedical approaches to disease control, but also encompasses human rights, gender equality and community engagement (UNAIDS, 2015; WHO, 2011). This is a broader definition of public health than generally used in other disease areas and is of critical importance because; in theory countries could achieve the numerical targets for elimination of vertical transmission of HIV in ways that ride roughshod over the rights of individuals living with HIV (ICW, 2009). The process of validation of the elimination of HIV transmission (the first step of which is elimination of vertical transmission during pregnancy) must therefore asses not only the biomedical elements of elimination such as the accuracy of data collection and laboratory testing, but also the extent to which the process has respected human rights, addressed gender equality and meaningfully engaged communities of women living with HIV.

The approach to validation developed by the UNAIDS, WHO and ICW team includes:

• Inclusion of human rights and community engagement in the criteria for validation
• Inclusion of human rights expertise and civil society representation in the global and regional validation committees that will assess the country validation reports
• Inclusion of human rights, gender equality and community engagement into the country assessment process
• Mechanisms to provide feedback to countries on the evaluation, recommendations and ongoing maintenance of the status of elimination of vertical transmission.

Human rights issues investigated and evaluated through the validation process include:

• Criminalization of vertical transmission
• Mandatory or coerced testing and treatment
• Lack of informed consent
• Forced and coerced abortion, contraception and/or sterilization
• Lack of confidentiality and privacy
• Lack of equality and non-discrimination
• Lack of availability, accessibility, acceptability and quality of services
• Lack of accountability and absence of participation and community engagement
• Gender-based violence
• Lack of access to justice, remedies and redress

The methodology underpinning the assessment for country validation includes three complementary processes that have strong human rights and community engagement components: 1) a desk review of applicable international and regional human rights and gender equality standards and national legal frameworks; 2) semi-structured interviews with women living with HIV, key officials with human rights, gender equality and community engagement functions, civil society and community-based organizations representatives, and HIV and EMTCT programme managers and service providers; and 3) invitation of shadow reports by civil society organizations, in particular direct input of networks or groups of women living with HIV who utilize PMTCT services. Countries applying for validation are expected to submit a national validation report that systematically incorporates human rights, gender equality and community engagement elements.

This case study is a practical application of principles, central to health promotion, as it attempts to ground the assessment and validation of the process by which the elimination of vertical transmission of HIV has been achieved, in the principles of human rights, gender equality and meaningful participation as well as to assess national efforts to address some of the social determinants of health (Dixey, 2013).

The state is primarily responsible for promoting health and providing health services that are accessible to affected populations (WHO, 2005). The Sustainable Development Goals (SDGs) provide the most current framework in which national health programmes are situated (WHO, 2016). Recognizing the fundamental right to health, nations should invest in Universal Health Coverage (UHC) which should be equitable, and provided in ways that reduce health inequalities. Affected populations can provide critical feedback on the accessibility, affordability and appropriateness of health interventions, thus holding governments to account for the extent to which they have respected the principle of the right to health. This has been an important feature of the AIDS response from the earliest days of the epidemic (UNAIDS, 2007).

This case study is based on an article submitted for publication to the Health and Human Rights Journal (Kismodi, E., et al 2017).

• www.ncbi.nlm.nih.gov/pmc/articles/PMC5739373

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