Australia is on track to meet its goal of eliminating local HIV transmission, but a concerning trend persists: women are increasingly likely to be diagnosed late with the virus. While overall new HIV diagnoses in the country reached a record low of 552 in 2021, the number of women diagnosed each year remains relatively stable, and lags behind the significant declines seen in other populations.
This delay in diagnosis can have serious consequences for a woman’s health and well-being. Early detection and treatment with antiretroviral therapy are crucial, not only to preserve the immune system and prevent illness, but also to prevent onward transmission. As Dr. Skye McGregor, an epidemiologist at the Kirby Institute, explains, “Access to treatment is important for a person’s quality of life and longevity, and at the population level, it reduces the risk of onward transmission.” Antiretroviral treatment can reduce the risk of transmission to effectively zero.
The reasons for this disparity are complex, but a key factor is the persistent misconception that HIV primarily affects gay and bisexual men. This bias can lead healthcare providers to overlook HIV risk in women, failing to offer routine testing or adequately address their concerns. Heather Ellis, who works for Positive Women Victoria and contracted HIV during a trip to Africa in 1993, has experienced this firsthand. She notes that doctors sometimes don’t offer HIV tests to female patients, or even express skepticism when women request them.
Ellis’s experience highlights a critical issue: the stigma surrounding HIV continues to impact women’s healthcare. She recounts instances of being advised to have an abortion simply because she was 40 and living with HIV, a recommendation that reflects outdated and inaccurate information about the virus and its transmission. “That just shows the lack of knowledge, but also how far the treatments have come now,” she says, emphasizing that women living with HIV can safely have children without risk of transmission to the baby.
According to the Kirby Institute’s 2024 surveillance report, there are an estimated 4,400 women living with HIV in Australia. Approximately 38% of all Australians are diagnosed late, but that figure rises to 44% for women, and even higher – 46% – for heterosexual women and women born overseas. This suggests that women who are not part of traditionally recognized high-risk groups are particularly vulnerable to delayed diagnosis.
The issue isn’t limited to a lack of testing. Late diagnosis can also be attributed to a lack of awareness among women themselves about their risk. Many women may not perceive themselves as being at risk for HIV, especially if they are in monogamous relationships or have not engaged in behaviors traditionally associated with the virus. This can lead to a delay in seeking testing, even when symptoms begin to appear.
The consequences of a late diagnosis can be significant. Without treatment, HIV can weaken the immune system, leading to serious infections, opportunistic cancers, and a decline in cognitive function. As Ellis notes, some members of Positive Women Victoria have had to give up work due to the cognitive effects of a late diagnosis. “We’ve had other members who have had to give up work because of a late diagnosis that has affected their cognitive abilities … they don’t think as quickly as before,” she says.
Recognizing the need for improved awareness and education, the National Association of People with HIV Australia, in partnership with Positive Women Victoria, is developing a new educational tool for healthcare professionals. The tool, called Women & HIV Today, will utilize audiovisual materials to educate doctors, nurses, dentists, and medical students about the unique needs and experiences of women living with HIV. The project is co-designed and led by women living with HIV, ensuring that their voices and perspectives are central to the educational process.
The development of this tool is supported by a Positive Action Community Grant from ViiV Healthcare. Ellis emphasizes the importance of incorporating lived experience into healthcare education, stating that “when people talk about their lived experience, it has far greater impact, it’s far more memorable for [healthcare workers].”
Beyond education, addressing the stigma surrounding HIV is crucial. Dr. McGregor stresses the importance of normalizing discussions about HIV and sexual health more broadly. “There’s only a benefit to everyone if we normalise discussions around HIV and sexual health more broadly and that will be of benefit to all groups that need it.” Removing the stigma will encourage more women to seek testing and access the care they need, ultimately contributing to the goal of eliminating HIV transmission in Australia.
The situation also highlights the potential impact of global health funding cuts. Ellis is concerned that reductions in USAID programs aimed at preventing HIV infections could lead to increased transmission rates in low- and middle-income countries, potentially increasing the risk for Australians traveling abroad.
