Meeting the needs of women living with HIV

By Fungai Murau, Luisa Orza

Fungai Murau is Support Officer: Knowledge & Influence, and Luisa Orza is Lead: SRHR, both at the Alliance.

A new consolidated guideline on sexual and reproductive health and rights of women living with HIV recently published by WHO represents a groundbreaking shift towards focusing on rights and the meaningful involvement of women living with HIV.

Uniquely, the new guideline was developed with the meaningful involvement of women living with HIV from the very beginning and throughout the entire process to the launch and dissemination. As a result, the guideline offers a genuinely woman-centred, whole-person perspective, with gender equality and human rights at its heart, and recommendations that go well beyond the clinical.

<p>Mariam, 20, a peer educator with Link Up in Uganda. Mariam had her daughter at age 13 and moved in with her grandmother who supported her. Initially reluctant to join a young mother's club she is now using her exepriences to suport others. As well as support, the club has taught her how to sew and knit, skills she uses to make and sell fashion items.</p>Mariam, 20, a peer educator with Link Up in Uganda. Mariam had her daughter at age 13 and moved in with her grandmother who supported her. Initially reluctant to join a young mother's club she is now using her exepriences to support others. © International HIV/AIDS Alliance

Global survey of women living with HIV

To inform the development of the guideline, Salamander Trust was commissioned by WHO to conduct a global values and preferences survey on the sexual and reproductive health and rights (SRHR) of women living with HIV. The survey was designed with input from a global reference group of women living with HIV from all over the world who brought knowledge and perspectives from a wide range of situations. The group included trans women, women who have sex with women, and women with experience of sex work, drug use, incarceration, economic and political migration, disability, and being born, growing up and aging with HIV.

The reference group helped ensure that the survey spoke to the realities of women living with HIV and reached nearly 1,000 women in 94 countries. Survey questions were framed using an ‘appreciative enquiry’ approach so that they focused on women’s positive and supportive experiences around for example their sex lives, fertility choices and treatment access, rather than negative experiences and barriers associated with HIV.

Reference group members also supported women to complete the survey through facilitated meetings, and conducted focus group interviews to supplement the findings. The Alliance’s SRHR lead, Luisa Orza, was part of the team pulling together what resulted in the biggest global survey to date of women living with HIV. 

Safety is fundamental

The report from this survey is called Building a safe house on firm ground to emphasise that safety – at home, in the community and within health services – is fundamental to ensuring that women living with HIV realise their SRHR. The image of the house used in the report illustrates how all the components of a holistic approach need to be brought together into a single architecture, and how this also enables women to contribute to the health and wellbeing of their partners, children and communities as well as their own.

The meaningful involvement of women living with HIV in the development of the guideline has meant that it addresses issues that are beyond the health providers’ control, such as housing and gender-based violence. It takes what happens within health facilities out of isolation and sets it within the complex contexts and lived realities of women’s lives.

Implementing the guidelines

The next crucial step will be the guideline’s implementation. WHO is working in consultation with a range of regional and country stakeholders, including women living with HIV in all their diversity, to develop an implementation toolkit and strategy. Countries are encouraged to adapt and adopt the guideline, in collaboration with UN agencies and WHO, women living with HIV and other civil society partners to ensure that the recommendations are implemented appropriately, responding to country-specific needs and priorities. 

This is a great opportunity for the Alliance and its Linking Organisations to take a leadership role in ensuring that the guideline is integrated into programmes, supporting its rollout in country and monitoring its use, and continue building momentum around using a holistic, context-specific person-centred approach. As WHO’s Manjulaa Narasimhan, who led the guideline development process, has shown, that is a non-negotiable if we are to empower communities to reach our goal of ending AIDS by 2030.