When Heather Ellis embarked on a global motorcycle journey in 1993, the haunting imagery of Australia’s Grim Reaper AIDS campaign lingered in her mind. She was 28 and acutely aware of the high prevalence of HIV in Africa, a continent she planned to traverse. Despite her cautious intentions, an unplanned encounter in Mali led to a life-altering moment. A year later, while preparing to enroll in a Russian course in Moscow, a required HIV test for her visa delivered shocking news: she was HIV positive.
In Australia, women represent over 10% of those living with HIV. Yet, due to the prevailing perception that they are not a high-risk group, many women receive their diagnosis late. Ellis, now an advocate with Positive Women Victoria, highlights a critical issue: the association of HIV predominantly with gay men, even among healthcare professionals, increases the risk for women by delaying their testing and diagnosis.
Challenges in Diagnosis and Treatment
Ellis shares stories from her organization, recounting how women, often middle-aged and recently divorced, might contract HIV during overseas trips. Despite these risks, general practitioners (GPs) frequently overlook offering HIV tests to female patients. Early detection is crucial, as antiretroviral treatments can effectively manage the virus, allowing the immune system to recover. However, a late diagnosis can lead to severe health consequences, including infection-related cancers and cognitive impairments.
According to the Kirby Institute’s 2024 surveillance report, approximately 4,400 women live with HIV in Australia. Dr. Skye McGregor, an epidemiologist at the institute, notes that while the number of women diagnosed annually is stable, it contrasts with significant reductions in other demographics. For instance, Australian-born men who have sex with men saw a 54% drop in new cases from 2015 to 2024, compared to a mere 5% decline among women.
“If we look at that in the context that Australia is looking to eliminate local transmission of HIV, we want to see that number start to come down. And so it suggests there’s still progress to be made with women diagnosed with HIV in Australia,” McGregor said.
Addressing Late Diagnosis and Stigma
Alarmingly, 38% of Australians with HIV receive a late diagnosis. This figure rises to 44% among women, with even higher rates among heterosexual women (46%) and those born overseas (56%). The implications of late diagnosis are profound, not only affecting individual health and longevity but also increasing the risk of further transmission.
Frontline sexual health workers have raised concerns about young Australian women contracting HIV during overseas travels, often during gap years or working holidays. Ellis warns that cuts to USAID programs aimed at preventing HIV could exacerbate the issue, particularly in low- to middle-income countries where the virus is more prevalent.
Educational Initiatives and Future Steps
To combat these challenges, the National Association of People with HIV Australia, in collaboration with Positive Women Victoria, has developed an educational tool named “Women & HIV Today.” This audiovisual resource aims to enhance awareness among healthcare professionals, from students to seasoned practitioners, about the realities faced by women living with HIV. Ellis, leading the project, emphasizes the importance of incorporating the lived experiences of women with HIV into educational efforts.
The initiative, supported by a Positive Action Community Grant from ViiV Healthcare, seeks to distribute the tool nationally by mid-year. Ellis, residing in regional Victoria, recounts personal experiences of stigma, such as being advised against childbirth due to her HIV status—advice that reflects outdated understandings of the virus and its treatments.
“That just shows the lack of knowledge, but also how far the treatments have come now, that women who are living with HIV can easily and do have children. And there is absolutely no risk to the baby contracting HIV,” Ellis says.
Dr. McGregor underscores the necessity of engaging communities and individuals with firsthand experience in designing effective educational and support services. She advocates for normalizing discussions around HIV and sexual health, which could benefit all demographics at risk.
“There’s only a benefit to everyone if we normalize discussions around HIV and sexual health more broadly and that will be of benefit to all groups that need it,” McGregor concludes.
As Australia strives to eliminate local HIV transmission, addressing the unique challenges faced by women is crucial. Through education, awareness, and the dismantling of stigma, significant progress can be made in ensuring timely diagnosis and treatment for all affected individuals.
