In Women's Eyes: Key Barriers to Women's Access to HIV Treatment and a Rights-Based Approach to their Sustained Well-Being

"[T]here is an unspoken - and often unrecognized - dissonance between what most of the formal HIV literature is assuming, with global promotion of '90-90-90' and 'fast-track,' and what barriers women actually face."

This peer-led global study looks at HIV care and treatment access for women living with HIV. The World Health Organization (WHO) has recommended lifelong anti-retroviral therapy (ART) for all people with HIV, yet women living with HIV face widespread violence, both at home and in health care settings after their diagnosis, which may act as a barrier to treatment access and adherence. To date, however, there has been scant formal evidence, from women's own perspectives, about this and other treatment barriers - in addition to facilitators. Thus, a Global Reference Group (GRG) of 14 women living with HIV - representing 11 countries and a range of diverse identities and experiences - guided this global study throughout all phases. It uses the normative framework of the human right to health, as established by relevant United Nations treaties and commitments relating to women, the Committee on the Elimination of Discrimination Against Women (CEDAW Committee), the Global Commission on HIV and the Law, and the WHO woman-centred guideline on the sexual and reproductive health and human rights (SRHR) of women living with HIV. The results presented are predominantly based on women's own experiences. Recommendations are proposed regarding laws, policies, and programmes that are rights-based, gendered, and embracing of diversity in order to maximise women's access and adherence to medication and for their long-term sexual and reproductive health.

ATHENA, AVAC, and Salamander Trust - 3 civil society organisations (CSOs) - undertook this review, which was commissioned and funded by UN Women, in 3 phases. Phase 1, a literature review, explores qualitative evidence regarding facilitators and barriers in relation to ART access and adherence. A quantitative review then addressed women's access to HIV treatment, with an analysis of sex-disaggregated data. In phase 2, community dialogues via focus group discussions (FGDs) were conducted with 175 women in Bolivia, Cameroon, Nepal, and Tunisia. There were also consultations with all 14 GRG members; 9 one-on-one interviews; and an online listserv discussion. In total, 197 individual women were consulted in this phase. In phase 3, country case studies were undertaken in Kenya, Uganda, and Zimbabwe. They included in-depth focus groups, one-on-one interviews, country-level policy analyses, and an additional literature review. Younger and older women were purposively sampled.

This paper focuses on analysis of the phase 2 findings, employing Gender at Work's change matrix (above and Figure 1 in the document). This change matrix amplifies the normative framework offered by the socio-ecologic model. Quadrant 1 is related to the individual and informal spheres; quadrant 2 refers to the individual and formal spheres; quadrant 3 addresses social-cultural norms, beliefs, and practices; and quadrant 4 relates to the formal, societal spheres.

In brief, the qualitative and quantitative literature review shows that HIV treatment is being scaled up as a global policy; that women's treatment access worldwide is higher than that of men, partially due to antiretroviral (ARV) provisions for pregnant women; and that women increasingly access treatment over much longer timeframes. However, formal research has primarily focused on the number of people receiving treatment rather than on the quality of their care or retention, and on treatment initiation alone, rather than on adherence. The formal treatment literature lacks a focus on women living with HIV who are also members of key populations or at higher risk of acquiring HIV, and it has placed limited focus on human rights violations, gender inequality, and discrimination in care - issues that may be acting as access barriers.

Some formal qualitative research and much grey literature indicate that gender inequality, related to cultural, economic, and human rights issues, poses considerable barriers to women's choices regarding access and adherence to HIV care and treatment services. Women's decision-making on disclosure is shown to be significantly influenced by gender-based violence, including the fear of negative reactions, abandonment, and abuse. This can, in turn, limit their ability to access care and to both start and adhere to treatment.

Using the change matrix, the researchers examine the phase 2 findings on the basis of the change matrix's 4 quadrants. They do this both for barriers and for facilitators of treatment.

• Example barrier - Quadrant 2 relates to the individual and formal spheres. Here, among other things, women reported poor health care communications. This included limited time with, or effort by, health care providers to address women's concerns or to deliver full information. They cited lack of or insufficient information regarding benefits and complications of treatment, what to take and when, or any information about drug interactions. These were reported as frequently ignored or dismissed by health care staff. Women cited lack of counseling, being unable to ask questions, side effects not being discussed, and being pressured to make quick decisions without adequate information.
• Example facilitator - Quadrant 3 relates to the societal and informal spheres. Here, women cited the reported importance of contact with other women living with HIV through peer-led treatment literacy and support groups, networks, or other peer support services. They described how their involvement in these groups was directly linked to accessing and remaining on ART over time. Supportive friends and family were also cited as important facilitators.

In short, "the women's discussions presented here dispel the dominant premise in the biomedical HIV treatment literature that women's treatment access is a straightforward process....At best, there are calls for renewed efforts at community linkages to get women onto treatment, with no discussion about women's voluntary choices around if, why, or how women might be avoiding treatment....At worst, women are subject to veiled or more open criticism for 'failing' to take up or adhere to treatment, with no exploration of why this may be so....Harnessing the power and leadership of peer-led and -governed analyses of treatment access, such as this review, as part of a participatory research, implementation, and evaluation framework, can reveal invaluable new insights into what works for women."

This review maintains that the foundation of an enabling environment and the pursuit of solutions are found in women's insights and resilience. It has identified both gaps and sources of resilience, depth of knowledge, concrete, actionable recommendations, and a vision of what a rights-based, women-centred approach to the offer of ART provision must look like, moving forward. It closes with some key recommendations to donors, policymakers, and health care providers for a human-rights-based treatment paradigm for long-term access for women living with HIV to care and treatment. Human rights, gender equality, respect for diversity, multi-sectoral approaches, and relevant holistic research form the key concepts behind these recommendations, which are organised according to the matrix's 4 quadrants:

• Quadrant 4 example: Punitive laws that violate the rights of women living with HIV should be reformed and replaced with laws that are gender transformative and that recognise and respect the rights of women living with HIV in all their diversities.
• Quadrant 3 example: A rights-based gendered and diversity-based analysis should be incorporated into expansion of support for community-based service delivery, which is a core component of the Joint United Nations Programme on HIV/AIDS (UNAIDS)' Fast-Track goals. Community-level programmes that transform gender norms, including gendered power inequalities, are also needed.
• Quadrant 2 example: If health care providers do not treat women living with HIV with respect and violate women's rights to privacy, information about their HIV can quickly spread, with negative consequences for the women's overall health, safety, and psychosocial well-being. Generally, negative attitudes and practices toward other people are usually based on lack of information and fear of the unknown. It is therefore strategic to consider sector-wide HIV and gender-awareness training. A list of specific actions for health care providers to take is included in the paper.
• Quadrant 1 example: If women are surrounded by an enabling environment at home, in the community, the workplace, at health centres, and have their legal rights upheld, then they are likely to feel respected, cared for, safe and valued, able to deal with their HIV diagnosis, and supported to take their medication.

The researchers conclude: "It is our hope that this extensive review will catalyze change and dialogue at the international and national levels in board rooms, clinics, and communities in the context of expanded access to ART. Women's voices are clear, consistent, and urgent in their articulation of what must be done to create a women-centered, rights-based approach to maximize their holistic health and well-being, especially in the constrained funding climate. It is also our hope that the methodology described in this study will be adapted and expanded as a basis for continuing to monitor progress and map gaps in the global AIDS response."