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Written by Colin Batrouney, Director of Health Promotion, Policy and Communications at Thorne Harbour Health

Fear, stigma and shame. These were the defining characteristics of the emergence of HIV and AIDS in the early 1980’s. As we grapple with the current COVID-19 epidemic, it is worth reflecting on the impact HIV and AIDS had on Australia.

In 1985, as we and the rest of the world attempted to come to grips with this new global pandemic, the then Federal Government mounted a public awareness campaign that compounded the terror.

It characterised HIV as the medieval symbol of death, the Grim Reaper, literally bowling over every man woman and child that stood in its path. Every country had their own version of the scare campaign. The United Kingdom had a Styrofoam tombstone in a graveyard lit like a horror film, with the caption ‘Don’t Die of Ignorance’ that terrified Britons as much as our Grim Reaper.

1985 - Fear and Death

It is difficult to underestimate the palpable level of stigma that was associated with HIV at the time and although stigma at that level has lessened in recent years, it has not gone away. It it is fair to say that stigma acted as a disincentive to testing for HIV in the past which, in turn resulted in catastrophic health outcomes for both individuals and the community in general.

It was not uncommon for people to lose partners, friendship networks, relationships with their families and employment due to a positive diagnosis. Stigma would cause people not to seek treatment in a timely manner, resulting in disease progression and death. And even in death, stigma was the driver for families and some friends to deny that AIDS was the cause of their loved ones demise.

Many people merely died ‘after a long illness’ or ‘suddenly’ or ‘from cancer’. At times, even mourning was driven underground due to the stigma and shame associated with an AIDS-related death. All of this was made more complex, augmented by a media that divided people living with HIV as innocent ‘victims’ (children, hemophiliacs, recipients of ‘tainted’ blood etc.), and the tacitly ‘guilty’ who were responsible for their own infection due to ‘complacency’ or their ‘lifestyle’, being gay, an intravenous drug user or those who were merely ‘promiscuous’.

I can remember people at the time deciding they would not be tested because they, ‘didn’t want to know’ and they feared the ways in which they would be treated if they were found to be positive.

2020 - Stigma and fear

Fear, shame, discrimination and prejudice are corollaries to stigma and they have no place in a public health response. But of course, a public health response does not exist inside a cultural bubble. Now we have another global pandemic to contend with, and stigma with all its associated emotional negativities could again hold us back significantly in our efforts to control it.  

The recent restrictions put on the Melbourne public housing complexes are one example of how public narratives can stigmatise affected populations. From the beginning of this action, the towers were described as going into ‘hard lockdown’ and the buildings having “genuinely explosive potential” for the spread of the virus, according to Victorian Chief Health Officer Professor Brett Sutton.

The media reports included dramatic images of the looming concrete towers and the flashing lights of police vehicles on the ground. The lockdown was enforced by a significant police presence who were described as ‘guarding’ the residents and was put in place with immediate effect.

The public perception was not helped by the fact that ‘total lockdown’ and ‘lockdown’ are phrases regularly employed when describing prisons and maintaining control over those who have done the wrong thing.

Emma King, the Victorian Council of Social Services CEO was concerned by the police presence, describing the lockdown as looking “like a crime scene.” Residents were depicted as confused and lost, without any details of what was happening to them.

This was a population of marginalised people living in a public housing environment that has been stigmatised by the community and the media for decades. Media images showed residents standing at the windows of their apartments looking out helplessly. Many of these people, as Professor Sharon Lewin pointed out, “are in work that’s essential, so they are more likely to be exposed to infection.”

Many of those who were not in essential work were in other low income jobs or living with a disability. In short, those people who are considered to be at the margins of society. People who have been habituated to stigma for generations.

All this makes for a splashy story. Since the lockdown occurred in the towers, the Victorian Ombudsman has launched an investigation into the ways the residents were treated. The spectre of this action is hardly an incentive for people to be tested, or come forward if they have symptoms.

The punitive ways in which this was handled and reported resulted in people being publicly shamed and stigmatised when they were at their most vulnerable. Having lived through the early days of the HIV epidemic, this scenario seems very familiar.

COVID-19 and the future

But unlike the early days of the HIV pandemic, the action in the towers aside, there are several elements of the current situation that are positive. Generally speaking there is a sense that we are all in this together, because we are, literally.

Now we are all subject to the same restrictions, the same curfew. We have all been mandated to protect ourselves and others – and it seems that we are doing so, willingly.

In 1985 we had to demonstrate in the streets to fight for HIV treatment and prevention. Now in 2020 the population is living in a world that has been transformed by a blanket awareness of COVID-19, how it is transmitted, how we can avoid it and how we must protect and care for others who are affected by it.

In this country, in 1985 one of the things that was directly linked to our success in the response to the HIV pandemic was the early involvement of the community. We were active participants in care, support, government policy, prevention and research. I am mindful of that legacy when I see the remarkable participation of the community amidst the current pandemic. Out on the streets there is a tangible sense that we are all playing a part, that we all have a role to play in stemming new infections.

If we can learn from the past and build on the sense of a collective community effort and responsibility that is informed by care, sensitivity, sound public policy and personal agency – without stigma, fear or shame – then we will emerge from this crisis as a stronger society.