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U=U and Women: An Advocacy Issue for Us All

International Women’s Day this Sunday March 8 encourages us to take action for equality. Kirsty Machon argues that it is time for us to bring the whole of Australia along with the simple and uncontroversial message of U=U and that stigma and fear are the two things that most stubbornly stand between ending HIV.

In 2017, the news broke that major health organisations and bodies had reached consensus on a crucial issue for all people living with HIV. They agreed that if HIV is successfully treated, and a person living with HIV retains an undetectable viral load for at least six months, the risk of that person transmitting HIV to sexual partners is negligible to non- existent. Over 450 organisations from more than 65 countries have endorsed this statement.

Communities breathed a collective sigh of relief and the U=U slogan and movement was born. But to an extent the enormity of that simple statement, its magnitude for individuals and communities emerging from three decades of huge trauma and massive turbulence, has yet to sink in. For women, I think this statement is particularly accurate.

For a monumental historical moment, the U=U message, with all its liberating potential, passed seemingly without a ripple in the mainstream media. This lesson tells us something important about the power of what have probably been the greatest enablers of HIV throughout the epidemic: stigma, fear, homophobia and sexism.

Rates of new diagnoses for women remain stable at around 10%, while rates of new diagnoses in heterosexual men are beginning to rise. Women, along with heterosexual men, continue to be at increased risk of being diagnosed late; of not getting access to testing when they need it (even when they request it) and therefore of not accessing testing when they need it.

For women who are living with HIV, stigma and a lack of understanding about HIV within the community, patchy knowledge about or understanding of HIV from health care workers not closely linked to HIV communities of care, and the persistence of stereotypes and myths about women living with HIV and what their lives are like, mean many women continue to live with HIV in secrecy, silence and fear.

Our work, then, is for the over 3,000 women living with HIV, and their families and friends, to be able to share in the moment of change, with all its possibilities.

While there continues to be widespread ignorance of the fact that undetectable HIV means that women living with HIV can have full sexual lives without the fear of transmission to partners and babies, our work is not done.

While couples in serodiscordant relationships can still appear in the media under headlines suggesting that the negative partner is literally taking their life in their hands by having sex with a person living with HIV, our work is not done.

While women continue to be diagnosed late, fear the consequences of that diagnosis for their future lives, or for their families, or for their sexual life, or for their reproductive future, or for their safety and wellbeing, our work is not done.

While women living with HIV continue to be wary of using their names due to the concerns about repercussions for those they love, our work is not done.

While there remains gaps in our knowledge about important questions for women about the possibilities of the U=U moment for important health decisions like breast-feeding, and we do not support that decision with consistent and evidence based messages from health practitioners, our work is not done.

The community needs to know that women with HIV have relationships, sex, children, careers and lives. They need to see people thriving, showing everyone that HIV has changed, is changing, and moreover, that we are all still focused on finding a cure.

“It’s time” for a national campaign that shines a light on life with HIV now, that presents risk of transmission realistically, but also shows that there is something you can do: test, treat, know, share that knowledge.

Such a campaign would banish once and for all that old enemy, the Grim Reaper, and show in its place the faces of real people living real lives, real women and men with real families. The message is: there is nothing to fear, pity, judge or blame, and there never in fact was. Everyone can play a part in putting an end to the last vestiges of a very old, very unwanted source of injustice, demystify HIV and put it into perspective.

Kirsty Machon is the Executive Officer of Positive Women Victoria. This blogpost has been adapted from an article originally published in March 2019 in issue 86 of Poslink, the newsletter of Living Positive Victoria.