In Australia, HIV is still often seen as a disease that only affects gay men. As a result, women diagnosed with the virus can struggle with a lack of awareness and understanding around their risks, management, and experience. Of course, any person living with HIV can be subject to stigma and anxiety. But for women these feelings are compounded by public perceptions of the disease, child-bearing responsibilities, and a lack of information about how treatment affects women's bodies over time.
Much of this is due to the lack of visibility around women with HIV in Australia. While the Australian Federation of Aids Organisations (AFAO) consider national infection rates to be stable, 27,150 people live with the condition—10 percent of whom are women. With a small population impacted, women are not identified as a priority population in the Department of Health's Seventh National HIV Strategy.
According to advocacy groups such as Positive Women, not having women on the government agenda fails to recognize that women's experiences of the disease are unique. It can also exacerbate the lack of awareness and understanding on the topic. "There's no perceived risk," Autumn Pierce from Positive Women explained to VICE. "Women often contract HIV from a trusted long-term partner. We're advocating for a more complete picture of the experience of women living with HIV in Australia so that organizations such as ours are able to provide really tailored, effective support."
Carol El-Hayek, an epidemiologist at the Burnet Institute, agrees. Speaking to VICE she said, "Everything is focussed on gay men because they make up the numbers. Even though the number of women is quite stable, the potential risk is still there." General Practitioners will test men who identify as gay or bisexual on an annual basis, but a woman is only tested if identified as high-risk or presenting the symptoms of late-stage HIV.
Women also face a complex set of double standards in relation to their sexual behavior. Autumn explains that this is reinforced by the misconception that HIV-positive women are "sleeping around." It can take only one sexual encounter or sexual partner for someone to become infected. The stigma worsens still when an HIV-positive woman decides to give birth. "Not only are they seen as harboring this disease but now as infectors of this disease and passing it onto children, which is really not the case in Australia," notes Pierce. The transmission rate from an HIV positive mother to her unborn child is actually very low, currently at 1.7 percent.
May*, 34, was diagnosed with HIV in 2007. She migrated from an African country with considerably higher incidences of HIV. Ironically, she tested positive in Australia, where she feels she let her guard down when it came to STDs. As is the case for many women with the disease, giving birth to her two children has been a huge and stressful challenge. "Nothing is ever 100 percent. With the 1.7 percent chance, it's always bearing down on you," she said. "After giving birth you want to celebrate the child, but you have this anxiety—you only get the all-clear when the child is six months old." Because of the stress involved with being pregnant as an HIV positive woman, May does not plan on having any more children.
Despite this tension, May has accepted that HIV is now a part of her life and is ready to disclose her condition to people other than close family members and medical professionals. But her husband is still coming to terms with living with an HIV-positive partner and struggles to talk about it. Additionally, he feels that by her speaking about her condition, he'll be implicated in it.
As May and other women like her get older, the issues they face also evolve. Menopause is an emerging issue in the experience of women living with HIV. "There's a lot of unknowns around how [antiretroviral] drugs over time have affected their bone density, their heart etc, which would bring a lot of anxiety," Carol adds.
The reality is not all women infected with HIV will have similar experiences of contracting, living with, or treating the disease. But any visibility or additional focus from government agencies around their lives will help deconstruct the stigma they face. But without attention and recognition, social policy and public attitudes are sadly slow to change.
*Name changed to protect privacy of the individual.
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