When Heather Ellis travelled the world by motorcycle in 1993, the Grim Reaper Aids ads were fresh in the then-28-year-old’s mind.

Knowing she was travelling to Africa where there was a high prevalence of HIV, Ellis had no intention of having sex and did not pack any condoms. But during an “unguarded moment” in Mali, she met someone and spent the night with him.

One year later and about to enrol in a conversational Russian course at a university in Moscow, she’d forgotten about the encounter. So when the HIV test she needed for her visa came back positive, it was a shock.

Women make up more than one in 10 people living with HIV in Australia, but because they are not considered a high-risk group, they’re more often diagnosed late.

Ellis now works for Positive Women Victoria, and says the predominant association of HIV with gay men – including 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 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.”