By Alice Welbourn
Over the past quarter century since my HIV diagnosis, I have had the good fortune to meet hundreds of extraordinary women who also have this bug in their bodies. As one of the estimated17.8 million women living with HIV worldwide, I want to raise our voices this International Women’s Day and share the six simple things you should know about being a woman living with HIV. It is so important that global leadership take these points into account when developing relevant policy decisions.
1) We represent a rich global diversity of women. Some of us grew up with HIV and now have our own HIV-free children. Some acquired HIV through drug use, through sex work, through our vulnerability as bisexual or trans women, from a partner with hemophilia, through having sex with only our husbands, through rape or through several (or none) of these routes. Some of us are single; others are married, divorced or widowed. Some of us have biological or fostered children; others don’t. Some have degrees; others have no formal education. When it comes to women living with HIV, #nosizefitsall.
2) And we have much in common. We are all women who know what it is to face a positive diagnosis, and many of us have experienced the post-traumatic stress that can follow. We are stigmatized and judged for having sex, for having babies, for not taking medication, for avoiding health centres. As women with HIV, we know that simply receiving a positive diagnosis can make us vulnerable to violence and other forms of abuse. Gender-based violence can be both a cause and consequence of HIV, leading many of us to develop mental health issues post-diagnosis and hampering our capacity to cope.
3) We are strong, resilient and resourceful. We have got involved and are making our voices heard in the response to the epidemic – a widespread but under-recognized coping strategy in and of itself. To make others’ experiences less traumatic than our own is one tiny way of regaining control of our lives again, post-diagnosis. To some, however, our involvement is seen as interference. As women, we are conditioned to develop a vast array of community caring roles, yet our insights, efforts and experiences are often viewed—by women, as well as men—as anecdotal and thus inferior, rather than as a critical early warning system.
4) We lead multi-faceted and complex lives. Despite all the recent treatment advances, science alone is not enough to respond to the multi-faceted and intersectional complexities of our lives as women living with HIV. HIV has an immense effect on many areas of our lives—as mothers, breadwinners, caregivers—and an effective response to the epidemic must be one that is gendered and systems based, recognizing and responding to our rights and to our complexity.
5) And we must be seen for the change agents we are. Engaging us meaningfully on issues that affect our lives is essential. Despite the seemingly endless struggle, we have kept going. We find strength through strong peer support and determined voluntarism, and in those moments where we engage with clinicians, policymakers, academics and donors who “get it,” we see glimpses of hope. Our meaningful involvement in the response is not a fanciful frill—it is a vital necessity to effective and sustainable change
Values and preferences survey Global Reference Group members and Core Team, together with various UN staff and others, from a meeting at WHO in Jan 2015 to discuss its findings.
I am a long-term member of several networks of women living with HIV, global and local, and I have seen what can happen when women living with HIV mobilize together—and what can happen when decision makers in science, advocacy and policy begin to put themselves in our shoes. When the World Health Organization (WHO) began revising its guideline on the sexual and reproductive health and rights of women living with HIV, it invited women living with HIV to conduct our own global values and preferences study to inform and shape the process. We were also invited by the WHO to sit on the Guidelines Development Group or the External Review Group. This was taking a woman-centred approach – with human rights and gender equality as its guiding principles. Opening these processes to the women who will be most affected by the decisions made (as the WHO did) is essential and should be the standard for all global policy development processes moving forward.
Especially in this hyper-fragile time for our sexual and reproductive health and rights, our unique insights and experiences will contribute to a brighter, more inclusive and more effective outcome for us all. This can only happen when we are seen as women in all our rich diversities, not just a virus vector.