IntroductionIn 2011, the Global Plan towards the Elimination of New HIV Infections among Children by 2015 and Keeping Their Mothers Alive was launched to scale up efforts to comprehensively end vertical HIV transmission and support mothers living with HIV in remaining healthy. Amidst excitement around using treatment as prevention, Malawi's Ministry of Health conceived Option B+, a strategy used to prevent vertical transmission by initiating all pregnant and breastfeeding women living with HIV on lifelong antiretroviral therapy, irrespective of CD4 count. In 2013, for programmatic and operational reasons, the WHO officially recommended Option B+ to countries with generalized epidemics, limited access to CD4 testing, limited partner testing, long breastfeeding duration or high fertility rates.DiscussionWhile acknowledging the opportunity to increase treatment access globally and its potential, this commentary reviews the concerns of women living with HIV about human rights, community-based support and other barriers to service uptake and retention in the Option B+ context. Option B+ intensifies many of the pre-existing challenges of HIV prevention and treatment programmes. As women seek comprehensive services to prevent vertical transmission, they can experience various human rights violations, including lack of informed consent, involuntary or coercive HIV testing, limited treatment options, termination of pregnancy or coerced sterilization and pressure to start treatment. Yet, peer and community support strategies can promote treatment readiness, uptake, adherence and lifelong retention in care; reduce stigma and discrimination; and mitigate potential violence stemming from HIV disclosure. Ensuring available and accessible quality care, offering food support and improving linkages to care could increase service uptake and retention. With the heightened focus on interventions to reach pregnant and breastfeeding women living with HIV, a parallel increase in vigilance to secure their health and rights is critical.ConclusionThe authors conclude that real progress towards reducing vertical transmission and achieving viral load suppression can only be made by upholding the human rights of women living with HIV, investing in community-based responses, and ensuring universal access to quality healthcare. Only then will the opportunity of accessing lifelong treatment result in improving the health, dignity and lives of women living with HIV, their children and families.

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This article outlines progress in realizing the sexual and reproductive health and rights of women and girls living with HIV over the last 30 years from the perspective of women living with HIV. It argues that the HIV response needs to go beyond the bio-medical aspects of HIV to achieve our sexual and reproductive health and rights, and considers relevant Joint United Nations Programme on HIV/AIDS (UNAIDS), World Health Organization, United States President’s Emergency Plan for AIDS Relief (PEPFAR), Global Fund and other guidelines, what engagement there has been with women living with HIV and whether guidelines/strategies have been adopted. It has been written by women living with HIV from around the world and a few key supporters. Co-authors have sought to collate and cite materials produced by women living with HIV from around the world, in the first known effort to date to do this, as a convergence of evidence to substantiate the points made in the article. However, as the article also argues, research led by women living with HIV is seldom funded and rarely accepted as evidence. Combined with a lack of meaningful involvement of women living with HIV in others’ research on us, this means that formally recognized evidence from women’s own perspectives is patchy at best. The article argues that this research gap, combined with the ongoing primacy of conventional research methods and topics that exclude those most affected by issues, and the lack of political will (and sometimes outright opposition) in relation to gender equality and human rights, adversely affect policies and programmes in relation to women’s rights. Thus, efforts to achieve an ethical, effective and sustainable response to the pandemic are hindered. The article concludes with a call to action to all key stakeholders.

The Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive highlighted the need to put the health and well-being of women and mothers at the center of efforts to prevent vertical transmission. This article will examine a selection of community engagement practices in 3 key areas: (1) as an accountability tool, (2) in service delivery, and (3) as a facilitator of human rights. The lived experiences of women living with HIV as recipients of and participants in services for the prevention of vertical transmission provide both the framework for an exploration of best community engagement practices and suggestions for the way forward.