Bridging the Gap in HIV Awareness for Women

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Bridging the Gap in HIV Awareness for Women

Del Batton, a self-proclaimed “country girl,” never thought she would get to the point of being at risk for HIV. 39-year-old woman from Sydney thought, as many people did at the time, that the virus only affected people in specific demographics. She believed it uniquely targeted men who have sex with men. It wasn’t until she went looking for treatment for in vitro fertilization (IVF) that she was tested for HIV. That one fateful moment shifted the entire course of her life. It inspired her to start and build her career around HIV advocacy and awareness.

Del Batton’s path to recognizing her diagnosis began when she battled a month-long sickness. Retrospectively, that struggle occurred almost a year before she ever got her positive test result. Even given her myriad health problems, her doctor still did not think to test for HIV. It wasn’t until the needle-in-a-haystack, billion-dollar blood tests that are part of IVF that she found out.

“They came back and said ‘you have tested positive for HIV.’ I went sort of, ‘wow,’” – Del Batton

Batton is an impassioned advocate for those who live with HIV. He is chief executive of Positive Living NSW, one of Australia’s biggest support networks. Her experience is a symptom of an ongoing national crisis facing women and working families.

Late Diagnosis Among Women

Evidence has shown that women suffer the consequences of late diagnosis of HIV disproportionately. Skye McGregor, an epidemiologist at the Kirby Institute, points to a particularly troubling stat — 38 percent of women living with HIV are diagnosed late. This added delay can lead to worse health results for them.

“At a 10-year timeframe we can see that among men, there’s been a 36 percent decrease in HIV diagnosis in this time versus only a 6 percent decrease among women,” – Dr. McGregor

Dr. McGregor highlighted the urgency for better, more inclusive health information specifically designed for women. She highlighted that women have long been misrepresented or marginalized within HIV research. Such lack of representation includes gaps in data necessary to understand their unique health needs.

“There’s been very little change in the number of women diagnosed with HIV compared to men,” – Dr. McGregor

Besides the barriers that all testing faces, the stigma around HIV adds another layer to testing and diagnosis. Even women like Batton, women with social support and access to education, have internalized societal messaging that describes HIV as a “gay disease.”

“We have a lot of work to do around stigma and discrimination,” – Dr. McGregor

Advocacy and Support Initiatives

Advocates such as Del Batton and Jane Costello are already rising to the occasion to meet those challenges. They are demanding far more funding and specifically targeted awareness campaigns that reach women. For more than 20 years, Costello has driven one of Australia’s largest peer support networks for people living with HIV. He ardently reiterated Batton’s plea for additional targeted assistance.

“If we normalize testing, it will make this just seem like a routine part of healthcare,” – Jane Costello

The Northern Territory has taken significant recent steps toward creating a women-focused alternative. Yet, funding continues to be a major barrier for these efforts.

Indigenous women in rural and remote areas women in Australia are keen to set up support networks. Yet they face growing fiscal challenges as cash flow to HIV care and support organizations has dropped in recent years.

The ninth national HIV strategy further muddies the water. It takes women out of the priority population for elimination strategies and replaces this with the broader category of “All people living with HIV.” Both Batton and Costello argue that this approach diminishes the specific needs and experiences of women living with the virus.

The Need for Change

The call for action is clear. Advocates urge health policymakers and stakeholders to heed their call. They want them to make women’s health a priority in HIV prevention and care services.

On a national level, we have to do more to increase these awareness campaigns targeted to women. It is essential that they are aware of their risks and the need for consistent testing.

“Most women are simply amazed to discover there’s other women living with HIV in all of Australia,” – Jane Costello

Del Batton is on the leading edge of advocating for women’s health. She advocates based not only on her experience but for the millions of women still misdiagnosed or diagnosed too late due to systemic sexism in healthcare.

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