Women Overlooked in HIV Diagnosis: Heather Ellis's Story and Australia's Healthcare Gap
Heather Ellis, an employee of Positive Women Victoria, contracted HIV in Africa in 1993 during what she describes as an 'unguarded moment' while travelling. Her experience highlights a critical issue in Australia, where women are more likely to be diagnosed late with HIV because they are not considered a high-risk group by doctors.
The Shock of Diagnosis and Travel Risks
In 1993, Heather Ellis embarked on a global motorcycle journey, with the Grim Reaper Aids advertisements still vivid in her memory. Aware of the high HIV prevalence in Africa, she had no plans for sexual encounters and did not pack condoms. However, in Mali, she met someone and spent the night with him. A year later, while preparing to study in Moscow, she had forgotten about the incident. The HIV test required for her visa returned positive, delivering a profound shock.
Ellis now works for Positive Women Victoria, advocating for awareness. She notes that the predominant association of HIV with gay men, even among healthcare professionals, leaves women at greater risk by the time they are tested. "We've got members in that very situation, like middle-aged, recently divorced, gone to Bali for a holiday with their girlfriends and ended up meeting some lovely young man and having sex and then coming home with HIV," she explains.
Late Diagnosis and Its Consequences
Early HIV diagnosis is crucial for longevity, but women in Australia are often diagnosed late. When detected, HIV can be treated early with antiretrovirals, which stop virus replication and allow the immune system to repair. A diagnosis delayed by more than four years is considered late, leading to severe health issues. "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," Ellis says.
According to the Kirby Institute's 2024 surveillance report, an estimated 4,400 women live with HIV in Australia. Dr. Skye McGregor, an epidemiologist at the Kirby Institute, states that while about 100 women are diagnosed annually, this number has remained stable as cases in other groups decline. "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.
Statistics and Stigma in Healthcare
From 2015 to 2024, Australian-born men who have sex with men saw a 54% reduction in new HIV cases, compared to only a 5% drop in women, described as "a very negligible change." Overall, 38% of Australians with HIV are diagnosed late, but this rises to 44% for women, 46% for heterosexual women, and 56% for women born overseas.
Frontline sexual health workers warn of increasing numbers of young Australian women contracting HIV during overseas gap years or working holidays. Ellis expresses concern over cuts to USAID programs aimed at preventing HIV infections, potentially increasing virus circulation in low- to middle-income countries and raising risks for travellers.
Addressing the Issue Through Education
The National Association of People with HIV Australia, in partnership with Positive Women Victoria, is developing an education tool called Women & HIV Today. This audiovisual resource aims to educate healthcare professionals, from medical students to dentists and doctors, about women living with HIV. Funded by a Positive Action Community Grant from ViiV Healthcare, it will be available nationally from mid-year.
Ellis, as project lead, emphasizes the importance of co-designing with women who have lived experience. "When people talk about their lived experience, it has far greater impact, it's far more memorable for [healthcare workers]," she says. She also shares personal experiences of stigma, such as being advised to have an abortion due to her HIV status at age 40, highlighting outdated knowledge. "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 notes.
Dr. McGregor underscores the need for community involvement. "It's really important, privileging those voices and understanding that it's a really heterogeneous group. The key is ensuring that services are accessible and we remove the stigma," she says. "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."
