1.1. Background
There were an estimated 17.8 million women aged 15 and older living with HIV in 2015, constituting 51% of all adults living with HIV (1). Adolescent girls and young women are particularly affected; in 2015 they constituted 60% of young people aged 15–24 years who were living with HIV, and they also accounted for 58% of newly acquired HIV infections among young persons in that age group (1). In many countries, women living with HIV do not have equitable access to good-quality health services and are also faced with multiple and intersecting forms of stigma and discrimination. Furthermore, women living with HIV are disproportionately vulnerable to violence (2), including violations of their sexual and reproductive rights (3).
In 2016, the United Nations (UN) Committee on Economic, Social and Cultural Rights (CESCR) defined the right to sexual and reproductive health (SRH) as an “integral part of the right to health” (4). To ensure the sexual and reproductive health and rights (SRHR) of women and girls living with HIV, attention must be paid to the following critical dimensions (5):
Human rights and gender equality must be placed at the centre of a comprehensive approach to health programming, in particular in relation to sexuality and sexual health.
Health systems must be responsive to the inequalities in access to health care and quality of care, which negatively affect women living with HIV.
Women living with HIV should be empowered and engaged in the development of policies and programmes that affect them.
Monitoring, evaluation and accountability procedures must be strengthened to provide good-quality data, and to ensure remedies for violations of the rights of women living with HIV.
This new consolidated guideline has been developed by the World Health Organization (WHO) Department of Reproductive Health and Research (RHR) in response to requests from a wide range of organizations and individuals for an updated version of the 2006 WHO guidance, Sexual and reproductive health of women living with HIV/AIDS: guidelines on care, treatment and support for women living with HIV/AIDS and their children in resource-constrained settings (6).
Many significant changes in HIV-related policies, research and practice have occurred in the 10 years since the publication of the 2006 guidelines. These changes include the rapid expansion of antiretroviral therapy (ART), and the release in 2015 of WHO recommendations to offer immediate ART to all individuals living with HIV and to offer pre-exposure prophylaxis (PrEP) to individuals at substantial risk of HIV infection as an additional prevention choice (7). These changes in turn have contributed to advancing the SRHR of women living with HIV (8). Consequently, this guideline was considered by the Guidelines Review Committee (GRC) as a new guideline.
This guideline aims to provide:
Evidence-based recommendations for the SRHR of women living with HIV in all of their diversity, with a particular focus on settings where the health system has limited capacity and resources; and
Good practice statements on key operational and service delivery issues that need to be addressed to (i) increase access to, uptake of, and the quality of outcomes of SRH services, (ii) improve human rights and (iii) promote gender equality for women living with HIV.
WHO guidance exists on several specific aspects of SRHR and of HIV, but not all include considerations specific to the SRHR of women living with HIV. This consolidated guideline seeks to bring together both new and existing recommendations and good practice statements related to the SRHR of women living with HIV into one document. Where current WHO guidance applies to all women, including women living with HIV, this document refers readers to these other publications for further information, as well as to other relevant WHO tools and documents on programme activities.
The recommendations and good practice statements presented in this guideline relate to either creating and maintaining an enabling environment for SRHR of women living with HIV (Chapter 3), or to specific health-related interventions relevant to the SRHR of women living with HIV (Chapter 4). All of the new and existing WHO recommendations presented in this guideline (and summarized in Table 1 in the Executive summary) have been developed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach (9).
This guideline is meant to help countries to more effectively and efficiently plan, develop and monitor programmes and services that promote gender equality and human rights and hence are more acceptable and appropriate for women living with HIV. This guideline also includes discussion of implementation issues that managers of health interventions and service delivery must address to achieve gender equality and uphold human rights.
Box 1.1Definitions as used in this guideline
An adolescent*: a person 10–19 years of age, inclusive.
An adult*: a person older than 19 years of age.
Key populations**: People in the following groups: men who have sex with men, people in prisons and other closed settings, people who inject drugs, sex workers and transgender people, including adolescents and young people from key populations and people with overlapping vulnerabilities and differing risks. Key populations may also include other groups of women living with HIV in contexts of marginalization or vulnerability, as defined by the local context.
- *
It is acknowledged that countries may have other definitions under their respective national laws.
- **
The definition of key populations is taken from the WHO Consolidated guidelines on HIV prevention, diagnosis, treatment and care for key populations –2016 update (10).
1.2. Target audience
This new guideline is expected to support front-line health-care providers, programme managers and public health policy-makers around the world to better address the SRHR of women living with HIV. It is primarily designed for national-level programme managers, policy-makers and other decision-makers within the ministry of health. Acknowledging that the woman-centred approach of this guideline (see section 1.4.1) may require multisectoral engagement, the guideline will also be useful for national-level programme managers from other ministries, such as the ministries of education, gender, family and social welfare, who can be partners in delivering interventions that support a holistic approach to SRHR.
Health services and programmes in low-resource settings will benefit most from the guidance presented here, as they face the greatest challenges in providing services tailored to women living with HIV in all their diversity. However, this guideline is relevant for all settings regardless of the situation of the HIV epidemic or the economic context, and should, therefore, be considered as global guidance. In implementing these global recommendations, WHO regions and countries can adapt them to the local context, taking into account the HIV epidemic, economic conditions, and existing health services and facilities.
The users of this guideline, including health-care providers, programme managers and public health policy-makers, are urged to: (i) implement a woman-centred, gender-sensitive approach to addressing the SRH needs, aspirations and rights of women living with HIV, and to (ii) meet the health needs and support the aspirations of all women living with HIV throughout all stages of the life course, including the post-menopausal years.
1.3. Scope
1.3.1. Population of interest
With reference to the 2015 WHO Consolidated guidelines on HIV testing services (11), this guideline will not include HIV testing, but is relevant for women from the point when they already know they are living with HIV. Women living with HIV who are not aware that they have HIV must first be reached by safe, voluntary, non-coercive HIV testing and counselling, and follow-on services, which need to be expanded and strengthened. In addition, although this guideline focuses on women who have been tested and know their positive HIV serostatus, it is acknowledged that the SRHR issues highlighted are, in many cases, similar for all women.
This guideline focuses on the SRHR of women living with HIV; while the SRHR of men living with HIV must also be addressed, this is not within the scope of this guideline. HIV is not only driven by gender inequality, but it also entrenches gender inequality, leaving women more vulnerable to its impact. The focus on women living with HIV is justified because many face unique and particular challenges and rights violations in relation to their gender, sexuality and reproductive roles within their families and communities, as well as from the health-care institutions where they seek services.
1.3.2. Creating and maintaining an enabling environment
The SRHR of women living with HIV is strongly influenced by a range of social, cultural, political and economic factors. Factors that can impede SRHR include, but are not limited to: inequitable gender norms; gender-based and intimate partner violence (GBV and IPV); stigma and discrimination; lack of empowerment among women and girls; violations of human rights; and restrictive and often punitive laws and policies that increase the vulnerability of women living with HIV and limit their health, well-being, and realization of their rights. These factors also pose significant barriers to accessing and utilizing high-quality SRH and HIV services. Policies, programmes and interventions to improve the SRHR of women living with HIV exist in some places, but these alone will not bring about improved health outcomes in the absence of a safe and supportive enabling environment. For this reason, issues related to creating and maintaining an enabling environment, and specific relevant recommendations and good practice statements, including five new good practice statements (GPSs A.1–A.5), are included in the scope of this new consolidated guideline. These are presented in Chapter 3 under the following eight topic areas: psychosocial support; healthy sexuality across the life course; economic empowerment and resource access; integration of SRHR and HIV services; protection from violence and creating safety; social inclusion and acceptance; community empowerment; and supportive laws and policies as well as access to justice (see also section A of Tables 1 and 2 in the Executive summary, and at the end of Chapter 2).
1.3.3. Priority questions and outcomes of interest for health interventions
Four priority questions in PICO format (population, intervention, comparator, outcome) were drafted for the development of this guideline, including details of the priority outcomes of interest for each, that could lead to improved SRHR for women living with HIV (see Chapter 2, section 2.5.1). The six new evidence-based recommendations that emerged from the guideline development process (RECs B.1, B.4, B.5, B.22, B.30, B.31), and all the other consolidated existing recommendations and good practice statements that relate to health-care interventions are presented in Chapter 4 of this guideline under the following six types of services: sexual health counselling and support services; violence against women services; family planning and infertility services; antenatal care and maternal health services; safe abortion services; and sexually transmitted infection (STI) and cervical cancer services (see also section B of Tables 1 and 2 in the Executive summary, and at the end of Chapter 2).
1.4. Approach and guiding principles
This guideline is grounded in and advocates for a strengthened, comprehensive, woman-centred approach to SRHR, with the assumption that if access to quality services is improved for all women, this will also benefit women living with HIV, and vice versa. This approach is underpinned by the guiding principles of gender equality and human rights.
1.4.1. Woman-centred approach
Woman-centred health services involve an approach to health care that consciously adopts the perspectives of women, their families and communities (12).
A woman-centred approach:
sees women as active participants in, as well as beneficiaries of, trusted health systems that respond to their needs, rights and preferences in humane and holistic ways;
emphasizes the promotion of gender equality as central to the achievement of SRHR of all women, including women living with HIV, and promotes gender-transformative health services which examine critical gender norms and support gender equality;
requires that women are empowered – through education and support – to make and enact decisions in all aspects of their lives, including in relation to sexuality and reproduction;
calls for strategies that promote women's participation in their own health care;
recognizes the strengths of women living with HIV as active agents in relation to SRHR, and not merely passive recipients of health services; and
is organized around the health needs and priorities of the women themselves rather than disease management and control.
This guideline is intended to address women living with HIV in all their diversity, including, but not limited to: women who are heterosexual, lesbian, bisexual, transgender or intersex; women who use or have used drugs; women who are or have been involved in sex work; women who are single, married or in stable relationships, separated, divorced or widowed; women who are and are not sexually active; women and girls who have undergone female genital mutilation (FGM); women who have tuberculosis (TB), malaria, hepatitis B or C and/or other co-morbidities; women who are currently or have previously been incarcerated, detained or homeless; women who are economic or political migrants; women who are indigenous; women living with disabilities; as well as adolescent girls who have acquired HIV perinatally, in childhood or during adolescence. This guideline recognizes that in all countries, but especially in areas with high HIV prevalence, some health workers are, themselves, women living with HIV who have their own priorities, needs and aspirations that require special consideration. The guideline captures diversity across age groups, emphasizing that health services that promote SRHR are important for women throughout all stages of the life course, including the post-menopausal years.
Many women living with HIV face multiple and intersecting forms of inequality and discrimination, depending on the local context. Each country should therefore understand and identify specific populations of women living with HIV that are particularly vulnerable and also those groups that are most relevant to the local epidemic, and should develop their response based on this local epidemiological and social context.
This guideline makes every effort to use language that is respectful of women living with HIV. It also promotes positive messages around health, instead of focusing exclusively on health problems. This woman-centred, rather than disease-centred, orientation can reduce stigma and support a life-enhancing, positive approach to SRHR (13).
1.4.2. Guiding principles: human rights and gender equality
An integrated approach to health and human rights lies at the heart of ensuring the dignity and well-being of women living with HIV. The protection of human rights for all women living with HIV is therefore fundamental to this guideline. This includes a variety of human rights, namely: the right to the highest attainable standard of physical and mental health (14); the right to life and physical integrity, including freedom from violence (15); the right to equality and non-discrimination on the basis of sex (15); and the right to freedom from torture or cruel, inhuman or degrading treatment or punishment (16). Furthermore, article 27 of the Universal Declaration of Human Rights states that everyone has the right freely to share in scientific advancement and its benefits (16). Recently, in its General Comment No. 22 (2016) on the right to sexual and reproductive health, the UN Committee on Economic, Social and Cultural Rights (CESCR) defined the right to SRH as an “integral part of the right to health enshrined in article 12 of the International Covenant on Economic, Social and Cultural Rights” (4).
The Programme of Action of the International Conference on Population and Development (ICPD) in 1994 highlighted reproductive and sexual health issues within a human rights framework (17). Since then, international and regional human rights standards and jurisprudence related to the right to SRH have evolved considerably. Most recently, the 2030 Agenda for Sustainable Development includes Sustainable Development Goals (SDGs) and targets to be achieved in the area of SRH (18), as does the Global Strategy on Women's, Children's and Adolescents' Health 2016–2030 (19).
The ICPD Programme of Action defines reproductive health as: “a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity, in all matters relating to the reproductive system and to its functions and processes” (17, para 7.2). The Programme of Action also refers to sexual health, “the purpose of which is the enhancement of life and personal relations, and not merely counselling and care related to reproduction and sexually transmitted diseases”. It further defines reproductive rights as follows:
[R]eproductive rights embrace certain human rights that are already recognized in national laws, international human rights documents and other consensus documents. These rights rest on the recognition of the basic right of all couples and individuals to decide freely and responsibly the number, spacing and timing of their children and to have the information and means to do so, and the right to attain the highest standard of sexual and reproductive health. It also includes their right to make decisions concerning reproduction free of discrimination, coercion and violence, as expressed in human rights documents (17, para 7.3).
Importantly, the CESCR's recent General Comment No. 22 recognizes that “people living with HIV/AIDS are more likely to experience multiple discrimination” and that “States must reform laws that impede the exercise of the right to sexual and reproductive health, including in relation to HIV status and transmission”, and recommends adoption of “appropriate legislative, administrative, budgetary, judicial, promotional and other measures to ensure the full realization of the right to sexual and reproductive health” (4, para 45).
In the course of developing this guideline, two literature reviews were conducted to support the rights-based case for strengthened services that meet the needs and aspirations of women living with HIV. These reviews included a special focus on: (i) the challenges of ensuring that human rights considerations are highlighted by normative bodies (20); and (ii) analysis of human rights within policies and programmes affecting women living with HIV (21). The reviews highlighted key gaps in jurisprudence among international, regional and national bodies. The guidance from these bodies reflects only a few health and human rights considerations related to women living with HIV and SRH. The approach of these bodies has been largely ad hoc and lacks a systematic integration of the human rights concerns of women living with HIV in relation to their SRH. Of the articles and documents reviewed, not a single peer-reviewed article described the explicit implementation of human rights in SRH programming, and only two documents from the grey literature did so. With one possible exception, no articles or documents were found that addressed human rights comprehensively, or addressed the majority of relevant rights. As the two literature reviews were explicitly about the SRHR of women living with HIV, and they reviewed articles that implicitly dealt with these issues and built upon the nine agreed-upon human rights dimensions that are the foundation to good SRHR (see ), this highlights a significant gap.
Human rights dimensions that are foundational to good SRHR.
In addition, in the articles included in the reviews, the language of rights was used most often to describe the apparent neglect or violation of human rights, as opposed to describing efforts to protect, promote or fulfil rights. When rights-related language was used, it primarily addressed only a few rights (most commonly the rights to access and non-discrimination) in the context of a few areas within SRH, while the issues of STIs, violence and ageing, for instance, were largely neglected.
The two reviews also highlighted the need for Member States to establish and enforce antidiscrimination and protective laws, derived from international human rights standards, in order to eliminate stigma, discrimination and violence faced by women living with HIV (20, 21).
Such laws and policies should also address gender inequalities, including harmful gender norms and stereotypes, unequal power in intimate relationships, and women's relative lack of access to and control over resources. All of these inequalities exacerbate the vulnerability of women living with HIV, affect their access to and experience of health services, and create barriers that prevent them from fully exercising their rights to health, including SRH. The promotion of gender equality is central to the achievement of SRHR of all women, including women living with HIV in all their diversity.
1.4.3. Applying the woman-centred approach and guiding principles
In recognition of all the issues and gaps that have been identified and mentioned here, this guideline aims to propose a comprehensive package of SRH services for women living with HIV, emphasizing that attention must be paid to adopting a woman-centred approach and applying the principles of human rights and gender equality, with reference to the guidance presented in Box 1.2. Box 1.3 provides a list of key WHO resources on human rights and SRH in general and in relation to specific health interventions and stakeholders. While the focus in this guideline is on human rights as they pertain to SRH, it is acknowledged that all aspects of human rights are important.
Guidance on the application of a woman-centred approach based on principles of human rights and gender equality for SRHR of women living with HIV.
Key WHO human rights and sexual and reproductive health resources.
1.5. Values and preferences of women living with HIV
Unique to the development of this WHO guideline, a global survey was conducted to assess the SRHR priorities of women living with HIV so that their values and preferences could be placed at the heart of the guideline. This global survey, hereafter referred to as the Global Values and Preferences Survey (GVPS), is the largest survey to date on the SRHR of women living with HIV. It was conducted by and for women living with HIV in 2014 to capture their perspectives in their own voices. The report of findings, Building a safe house on firm ground: key findings from a global values and preferences survey regarding the sexual and reproductive health and human rights of women living with HIV (37), and a related article published in the Bulletin of the World Health Organization, include detailed descriptions of the methods and limitations of the survey (37, 38). The limitations included the fact that the survey was most likely to reach women living with HIV globally who were (i) actively involved in networks of people living with HIV; (ii) aware of and potentially more open about their HIV status; and (iii) able to access an online survey using the Internet or participate in the focus group discussions.
A total of 945 women living with HIV participated in the survey, including 832 (from 94 countries) who responded to the quantitative survey, and another 113 (from 7 countries) who participated in focus group discussions. Respondents ranged in age from 15 to 72 years and came from a diverse range of backgrounds and experiences, including: women identifying as heterosexual, lesbian, bisexual, transgender or intersex; women who reported that they use or have used drugs; women involved in sex work; women who reported being single, married or in stable relationships; women who had undergone FGM; women who had TB, malaria, hepatitis B or C and/or other co-morbidities; women who had been incarcerated, detained or homeless; women who reported being economic or political migrants; women identifying as indigenous; women living with disabilities; and women who work as health-care providers.
The GVPS results were presented at a stakeholder consultation on SRHR of women living with HIV at the WHO headquarters in Geneva, in January 2015. The WHO Department of RHR continues to work with the community of women living with HIV, including representatives from key constituencies and different regions of the world. A special supplement in the Journal of the International AIDS Society (JIAS), published in December 2015, highlighted a few of the key issues that have emerged from the discussions and collaboration, in particular related to violence against women living with HIV, and mental health issues (8). In addition, several activities have taken place as a result of the survey, including the development of further peer-reviewed publications and webinars, led by the community of women living with HIV.
The findings of the GVPS (summarized in Box 1.4) informed the development of this guideline as a whole. The Guideline Development Group (GDG) took the findings of the GVPS into account when drafting the PICO (population, intervention, comparison, outcome) questions for the development of new recommendations (see Chapter 2, section 2.5 and Table 2.2) and when drafting the questions that formed the starting point for the new good practice statements. The GVPS also informed the GDG in writing and finalizing the recommendations, the good practices statements and the full guideline document. In particular, relevant survey findings are included in each topic area addressed throughout Chapters 3 and 4.
Key findings of the Global Values and Preferences Survey (GVPS).
This symbol representing the values and preferences of women living with HIV is used to alert the reader wherever results from the GVPS are reported.
