Not long after being diagnosed with HIV, Jane Costello recalls entering a sexual health clinic in London in the early 90s.
“I was an anomaly. I walked into the clinic and there was this sea of men looking up at me, as if to say, ‘poor dear, she’s in the wrong place,’” she says.
Much has changed in the HIV epidemic since then – especially when it comes to treatment and prognosis. Antiretroviral medications mean people living with HIV can live long, healthy lives. People living with HIV on effective treatment can achieve an undetectable viral load, meaning they cannot pass the virus onto sexual partners – an essential component of Australia’s efforts to eliminate HIV transmission by 2030. But for all the progress we have made medically, many of the false perceptions and stigma associated with HIV linger, particularly around how the virus impacts women.
“I have met women living with HIV who have flung their arms around me and said they thought they were the only woman living with HIV in Australia,” says Costello, who is now CEO of Positive Life NSW, the largest peer support service in the state for people living with HIV.
There can be a real sense of isolation for women living with HIV. For women who are recently diagnosed, that sense of community that is quite well defined for gay and bisexual men isn’t there.” Costello says.
This year, the National Day of Women Living with HIV on 9 March is aimed at building that sense of community, while breaking down false narratives about who can be impacted by HIV. The day reminds the public that HIV can affect anyone, and that women living with HIV are not alone and support is available to them.
Peer support services like those offered by Positive Life NSW are essential for people living with HIV to build their understanding of what their diagnosis means and to find community. Costello says clinicians have a responsibility to understand the value these services provide and to ensure patients living with HIV – particularly women – know where to go to access peer support services that are relevant and culturally appropriate to them.
“Peer navigators are so critical. Clinical care is critical too, of course, but there is a whole suite of allied healthcare that clinicians can’t offer. People need to know where to go and how to access targeted peer navigation services when they need them,” says Costello.
“Peer support is not just about having a coffee and a chat – it’s connecting people living with HIV to someone who has all the evidence-based information about HIV, treatment and can answer their questions. It’s about connection and removing that sense of isolation, but it’s also connecting them to someone who is extremely knowledgeable and can support them,” she says.
The lack of targeted information for women living with HIV
Despite the leaps and bounds in HIV treatment and care over the past few decades, significant gaps remain in our understanding of the virus. Women living with HIV, for example, remain underrepresented in research, meaning we still do not fully understand how HIV affects the female body in an Australian context.
“We have so much research on how HIV impacts men, but so little on how it impacts women,” says Costello.
“It impacts how we manage women’s health longer term. I’m ageing with HIV and I look at my body and think ‘is this ageing? Is this HIV? Is this ageing exacerbated by HIV?” she says.
Costello says this lack of research, coupled with an underrepresentation of women in HIV messaging and health campaigns, means many women living with HIV do not have a strong understanding of the virus or sexual health more broadly.
Positive Life NSW runs multiple support groups for women living with HIV to explore things like conception, pregnancy, and menopause. While these groups have been very well received, they have also highlighted some of these gaps in knowledge.
“There is a lack of nuanced information around HIV or sexual health more broadly for women living with HIV or women from multicultural backgrounds, for example. In one of our conversations about STIs, we had a number of women living with HIV who thought their antiretrovirals protected them from all STIs, for example,” says Costello.
While organisations like Positive Life NSW are making strides in increasing knowledge and awareness of HIV among their networks, they’re reliant on clinicians to connect newly diagnosed people living with HIV to their services.
What needs to change to support women living with HIV in Australia?
For Costello, aside from increasing the knowledge and research base around how HIV affects women, one of the most important changes is about perception. In line with the National Day of Women Living with HIV, it is time to acknowledge that anyone can acquire HIV – and to ensure how we act and what we say reflects this.
“I know so many women who have asked for a HIV test and were told they didn’t need one. There are so many missed opportunities for testing I hear about, and many women living with HIV are diagnosed late as a result,” says Costello.
Current guidelines recommend starting HIV treatment as soon as possible after diagnosis, which means late diagnosis as a result of missed testing opportunities could be adversely impacting health outcomes for women living with HIV.
“As women, there are so many myths and misconceptions about HIV. It’s time to normalise HIV testing for women, and to increase awareness of what HIV is and what it means to live with HIV, for everyone,” says Costello.
Clinicians looking to increase their knowledge on how HIV affects women should undertake ASHM’s Women and HIV online learning module. This self-paced module provides an overarching look at the unique considerations when treating women living with HIV, and awards CPD hours for completion.
