For over four decades, the fight against HIV stigma in Australia has been an ongoing challenge for those in the HIV sector. Since the early days of the epidemic, there has been a concerted effort to comprehend and respond to stigma – not only to understand what it is, but to uncover why it persists and why it remains one of the most formidable barriers to the elimination of HIV transmission. Tragically, despite years of efforts, stigma continues to plague individuals living with HIV, and the progress we have made in combating it has been limited.
The persistent stigma
Positive people still face a pervasive, predictable stigma in nearly every aspect of their lives. From healthcare to the workplace, the media, and even personal relationships, the act of disclosing one’s HIV status can lead to exclusion, discrimination, and shame. This stigma is not confined to certain corners of society. It can be seen in mainstream conversations, where misconceptions such as the need for mandatory HIV disclosure before sex, the criminalisation of HIV transmission, and even the notion that certain people ‘deserve’ HIV persist.
Look at any online discussion surrounding HIV, and you’ll likely encounter a wave of hate, misinformation, and misguided opinions. And yet, the efforts to tackle this stigma have not had the desired impact. Despite years of awareness campaigns, stigma remains deeply embedded, and those living with HIV often resort to keeping their status hidden to protect themselves from prejudice.
The shadows of the HIV response
Unfortunately, Australia’s HIV response has largely succeeded by forcing the issue into the shadows. HIV-positive individuals are often advised to seek care in specialist services where the likelihood of facing discrimination is lower. While this offers a degree of privacy and protection, it also means that HIV remains hidden from the broader public and not fully integrated into mainstream society.
This siloed approach has also led to underfunded services, which struggle to provide comprehensive anti-stigma training to healthcare workers who are often overworked and underpaid. Without national coordination and sustained, long-term investment in anti-stigma initiatives, stigma continues to thrive, unchecked and unchallenged.
Campaigns aimed at raising awareness of HIV and combating stigma have been far too small, temporary, and isolated. More troubling is the fact that many of these efforts have been based on assumptions about stigma that simply don’t hold up. For example, it’s a common belief that stigma arises from ignorance or fear – but the reality is far more complex.
The flaws in current campaigns
Public awareness campaigns, while well-intentioned and visually appealing, have largely failed to reduce stigma in any meaningful way. This is not just the case for HIV. A review of mental health anti-stigma campaigns over 20 years shows that these have had weak- to no significant long-term effects (Walsh & Foster, 2020).
Further, anti-stigma campaigns can deliver adverse effects in the general public such as unfavourable changes in beliefs, model the behaviour they are trying to discourage, and create resistance through compassion fatigue and desensitisation. Among people living with a stigmatised condition, anti-stigma campaigns can exacerbate fears of stigma, prompt stigma flashbacks and increase guilt, shame and self-blame among other negative effects (Siegel & Yzer, 2025).
In HIV, campaigns receive widespread acclaim and positive feedback from HIV-positive individuals, despite bringing little to change the attitudes of those who harbour stigmatising views. In fact, the very comment sections beneath these campaigns often reveal the extent of anti-HIV sentiment still present in society.
If these campaigns were truly effective, we would expect to see people retracting their stigmatising comments upon learning about U=U (Undetectable = Untransmittable) or other scientific advancements. Yet this rarely happens. Instead, the hate continues to flow—sometimes even in response to the campaigns themselves.
This persistent negativity hints at something crucial about stigma that we have yet to fully grasp. Our understanding of stigma is limited, and our responses thus far have been inadequate.
A shifting focus: Stigma and its social uses
The question we need to ask is: Why does stigma persist, and why is it so resistant to change? Our efforts to understand stigma in depth have been hampered by a lack of robust data and research. For years, we’ve accepted the prevailing notion that stigma is rooted in ignorance, fear, or hate. But recent research suggests that the reality may be more nuanced—and that stigma may serve a social purpose for those who engage in it.
A recent marketing study commissioned by NAPWHA (National Association of People With HIV Australia) revealed an interesting insight: when presented with the U=U campaign, some stigmatisers became frustrated because the message contradicted their ability to stigmatise others. For these individuals, stigma appeared to offer a form of validation—perhaps stemming from a desire to distance themselves from behaviours or lifestyles they considered immoral or shameful.
This insight challenges our traditional understanding of stigma as a response to fear or ignorance. Instead, it suggests that stigma is not just a social ill but something that can serve the interests of those who perpetuate it. It provides them with a sense of control, a way to bolster their own sense of worth by denigrating others.
The role of the HIV sector: A misguided focus?
In response to the pressure from communities to tackle stigma, some HIV organisations have shifted their focus to building resilience in HIV-positive individuals or promoting interventions aimed at reducing internalised stigma. However, this approach places the burden on those who are already suffering the consequences of societal discrimination. Asking people with HIV to overcome stigma on their own—without addressing the societal forces that perpetuate it—is unfair and unhelpful.
It also diverts attention away from the real issue: the people and systems that perpetuate stigma in the first place. Too often, interventions are aimed at the wrong target, and the root causes of stigma remain unchallenged.
The way forward: A call for a comprehensive response
As we continue to grapple with this issue, it is clear that our current approach is insufficient. The National HIV Taskforce has outlined several key recommendations for addressing stigma, including engaging with policymakers, healthcare professionals, and community organisations to better understand and combat stigma at every level.
To make real progress, we must move beyond surface-level campaigns and take a deeper, more strategic approach to understanding the drivers of stigma. This means investing in long-term research, building cultural competency in healthcare settings, and advocating for legal reforms that reflect the latest scientific evidence on HIV transmission.
A global responsibility
Australia is in a unique position to lead the world in the fight against HIV stigma. If we can develop scalable, measurable interventions that are proven to reduce stigma, we will not only improve the lives of people living with HIV but also set a global standard for how to effectively address stigma in the context of public health.
The challenge is great, but the opportunity is greater still. With the right approach, Australia has the potential to create an HIV response that leads the way in stigma reduction and ultimately helps us move closer to virtual elimination.
This is the task ahead, and it is a challenge we must rise to meet.
Conclusion: The path to progress
We have a responsibility to act, to invest in research, and to create effective, long-lasting solutions. If we fail to confront stigma head-on, we may find that the goal of eliminating HIV transmission remains out of reach. But if we succeed, we will not only change the trajectory of the epidemic in Australia but also set a precedent that can guide global efforts to eliminate HIV stigma once and for all.
The time to act is now.