When thinking about those affected by HIV in Australia, images of women are not likely the first that come to mind. And this is a significant problem.
Associate Professor Lisa Fitzgerald and Allyson Mutch from The University of Queensland have spent the last 10 years working with those living with HIV in Queensland to better understand their experiences. Their research focuses on the experience of women living with HIV, and recent findings make it clear that Australia has more work to do when it comes to support and healthcare.
Whilst the number of women in Australia living with HIV is relatively small–approximately 3,495 individuals–those affected face unique challenges.
Women living with HIV are less likely to live near HIV-specific services and finding social support is more challenging. And whilst the low numbers of women living with HIV is a good thing, this has resulted in those who are impacted being overlooked in relation to research, clinical and social care and in policy. This needs to change as it is well recognised that women’s lived experience of HIV is very different to that of men’s, and greater understanding is the first step in providing better support and healthcare.
Working to address this important gap in knowledge, Lisa and Allyson’s research is always conducted in collaboration with people living with HIV. The pair emphasise the importance of community participation within their work and make it clear that their research always involves the community. However, this is not the case for clinical care.
Due to the low HIV rates in Australia, few health workers are knowledgeable about the issues that impact WLHIV. This can lead to difficult and insensitive questions from healthcare workers, as well as affecting treatment. Currently, women are more likely to receive a late diagnosis, which has implications for health and wellbeing. There is also a lack of understanding of HIV within broader women’s health such as how HIV medications impact menopause and how highly active antiretroviral therapy (HAART) interacts with other medications. There is currently not enough data to answer these important questions.
The lack of understanding of healthcare workers of the broader issues experienced by WLHIV is impacting their social and emotional well being. Participants in the recent research described negative questioning by doctors. Women also described often incorrect assumptions people made about them including that they are people who inject drugs, are promiscuous or are sex workers.
There are also additional layers for women living with HIV, including discrimination against their children. And this doesn’t appear to be changing over time. Women who were diagnosed recently were just as likely to experience this type of stigmatisation as those diagnosed earlier in the HIV epidemic.
However, there is some good news. Whilst some aspects of clinical care are lacking, there have been significant advances in HIV treatment and understanding of the epidemiology which has led to improved prevention efforts. Improvements in HAART have resulted in improved life expectancy for those living with HIV, as well as rendering HIV non transmissible. There is now a large body of evidence which shows those with undetectable levels of HIV in their blood can’t transmit the virus to others sexually. However, these improvements have not led to equal improvements in quality of life or a decrease in stigmatisation for women living with HIV.
This experience is not unique to Australia. A recent literature review by the two University of Queensland researchers found similar issues in other countries, such as the US, Canada and New Zealand. The most commonly identified theme across all countries was gendered stigma. Women living with HIV in other high-income countries are faced with many assumptions when disclosing their diagnosis, making this a difficult process.
Where to from here?
Whilst prevention and treatment of HIV has come a long way, the stigma for women living with HIV has not seen similar improvements. The issues faced by women are gender specific, and as such gender specific services are needed. Peer support to address isolation and experiences of stigma has also been raised as an important need, as well as the importance of increasing HIV literacy for healthcare workers. Most importantly, for any new services or support, women living with HIV should be at the centre of research and development.