In 1993, Heather Ellis embarked on a global journey by motorcycle, haunted by the haunting Grim Reaper AIDS advertisements that were still vivid in her mind. At 28, she intended to steer clear of sexual encounters during her travels across Africa, an area known for its high HIV rates, and thus didn’t pack condoms. However, in the spontaneity of an unexpected encounter in Mali, she found herself spending the night with someone.

A year passed, and as she prepared to start a Russian language course at a university in Moscow, the brief liaison had slipped from her memory. The shock came when the mandatory HIV test for her visa revealed a positive result.

In Australia, women account for over 10% of those living with HIV. Yet, because they aren’t typically seen as a high-risk group, many receive their diagnosis later than they should.

Currently, Ellis is an advocate with Positive Women Victoria. She emphasizes how the strong link between HIV and gay men, even among medical professionals, often leaves women vulnerable and undiagnosed until the later stages.

“We have members facing similar circumstances,” Ellis notes. “Take, for example, middle-aged women who, after divorcing, travel to Bali with friends, meet a charming young man, engage in a brief romance, and unknowingly return home with HIV.”

“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 says.

But Ellis says GPs don’t always offer their female patients an HIV test – or balk when women ask for one.

When HIV is detected it can be treated early with antiretrovirals, which stop the virus replicating in the body and allows the immune system to repair itself. If a person who was unknowingly infected with HIV does not take a test for more than four years, it is considered a late diagnosis.

Those who are not diagnosed and medicated can become “very, very ill”, at times developing infection-related cancer as a result of their depleted immune system.

“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.

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The reality of a late HIV diagnosis

There are an estimated 4,400 women living with HIV in Australia, according to the Kirby Institute’s 2024 surveillance report.

Dr Skye McGregor, an epidemiologist at the Kirby Institute, says while the 100 women diagnosed each year is “not a huge number”, it has remained relatively stable while other groups have seen new cases drop.

“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.

In the period of 2015-2024, Australian-born men who have sex with men had a 54% reduction in new cases, compared with only a 5% drop in women, McGregor said. In other words, “a very negligible change”.

McGregor said late diagnosis is concerning because 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.

This is because taking HIV treatment reduces the risk of transmitting it to others to effectively zero.

Overall, 38% of Australians with HIV are diagnosed late. For women the figure rises to 44%, and even higher for heterosexual women (46%) and women born overseas (56%), McGregor said.

Frontline sexual health workers have warned of increasing numbers of young Australian women travelling overseas during their gap year or for working holidays contracting HIV.

Ellis is among many experts concerned because of cuts to USAID programs working to prevent HIV infections. She believes there could be a higher amount of HIV circulating in low- to middle-income countries, increasing the risk of Australians contracting the virus when travelling.

Removing the stigma of HIV

The National Association of People with HIV Australia, in partnership with Positive Women Victoria, hope the creation of a new education tool for healthcare sector will improve awareness of Australian women living with HIV.

The audiovisual education tool called Women & HIV Today aims to educate everyone from medical students through to dentists, nurses and doctors about women who are living with HIV, to improve awareness and practice so women are not diagnosed late with HIV, alongside the clinical evidence of the treatments.

Ellis is the project lead. She say it was important that it was co-designed and delivered by women living with HIV as “when people talk about their lived experience, it has far greater impact, it’s far more memorable for [healthcare workers]”.

The group will be able to share the tool nationally from mid-year because of a Positive Action Community Grant from ViiV Healthcare, a pharmaceutical company specialising in the research and development of medicines to treat and prevent HIV/Aids.

Living in regional Victoria, Ellis says she has frequently experienced stigma from doctors, such as being advised to have an abortion because she was 40 and living with HIV.

“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.

McGregor says working with communities and people with lived experience is central to designing education services and support.

“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,” McGregor 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.”