candlelight memorial 1Good afternoon.

Thank you for the great and humbling honour of inviting me to give this address at this moving event.

I would like to begin by acknowledging the traditional custodians of the land on which we gather today, the Gadigal people of the Eora Nation. I pay my respects to Elders past, present and emerging, and I extend that respect to any Aboriginal and Torres Strait Islander people who are joining us this afternoon

I am extremely honoured to have the opportunity to give this address. The Candlelight Memorial has become a poignant tradition, central of all who have been touched by HIV/AIDS.

Today, we uphold that tradition, paying tribute to, commemorating, and remembering the many individuals we have lost to HIV/AIDS over the years. Friends, relatives, partners and lovers who were taken from us, far too soon: often in dark and uncomfortable circumstances.

We remember and give thanks for their lives,

their individual, invaluable contributions large and small,

and acknowledge the many others who have been affected by the infection, either directly or indirectly, who are still with us.

While this event has incredible local resonance, reminding us of both the strength and suffering of those who we have lost, we must also remember the millions of people, across the globe, who have been and still are affected by HIV. We remember our global brothers and sisters, often living in much less fortunate and well-resourced circumstances.

These reflections should guide us forward with steely determination, to progress the fight against this infection and just as importantly not to lose the advances we have already made. These reflections should underpin our collective quest for: equitable access to health care for all; respect of people living with or at risk of HIV infection and; ultimately both an accessible vaccine and a cure for HIV.

All of us here today can reflect on how remarkable it is that HIV/AIDS has been transformed from a death sentence to a chronic, manageable condition in just 30 years.

An extraordinary feat:  a modern medical miracle.

Most of us in the room can remember those dark early days, when, once the diagnosis of HIV infection was made, decline and suffering was relentlessly predictable.

We are fortunate: for the most part in this country, we have access to acceptable and effective interventions that are the embodiment of this modern miracle.

However, in many parts of the world, there still exist huge barriers to accessing lifesaving antiretroviral therapies, critical HIV testing, and essential prevention tools like PrEP – all underpinned by an environment where stigma and discrimination are rife. In these places, darkness and despair on hearing the diagnosis of HIV infection still exists.

Further, even when advances are made, it is incredible how rapidly they can be lost.

In Papua New Guinea, the rate of mother to child transmission of HIV was driven down to low levels last decade, then the implementation process was deprioritised and downgraded and now the rate of infection it is no different from the natural history, running at 30% of births to infected mothers.

Making the advances is only part of the story. Maintaining them requires at least the same level of determined, sustained and focused effort.

The events of the last 17 months have exacerbated these barriers.

Clearly, the changes in global focus to another pandemic and its effects on:

  • the capacity and costs to health care systems, and
  • on our ability to travel in order have a hands-on approach, in order to work with our colleagues and peers to gain to first-hand understanding of the situation on the ground and to work in tangible partnerships.

These have made addressing the ongoing challenges of HIV infection an even greater challenge than it was previous to 2020. In our region, the disastrous political disruptions and human right abuses in places like Myanmar only serve to make the challenge even greater:  rapidly destroying any advances we have made.

Even here in this country there will be a battle to remind policy makers and budget holders of the importance of maintaining our successful systems and interventions, so we maintain and improve the gains we have made. We owe this effort to those that have lost their lives to this insidious infection.

We can take many lessons from our experiences with HIV/AIDS, not least of which is the importance of centering responses around at-risk communities.

We all have a role to play in ensuring the health and well being of each other. The sick and afflicted have the greatest benefits when health care workers, researchers, the community and governments act together.

We have seen, through the COVID-19 pandemic, the incredible progress that can be achieved through concerted, collective action. To develop lifesaving treatments and prevention for HIV in three decades was remarkable, but it has been amazing to see the speed at which the scientific community, alongside governments and the wider global population, have banded together, throwing all the necessary resources at the COVID-19 health crisis.

The hard-won lessons learnt through our responses to HIV must be reflected upon and acted upon. Collaboration and information sharing is critical to this effort. For those who were able to attend the David Cooper Lecture a few weeks ago, you’ll remember the comments by Dr Anthony Fauci as he reflected on the importance of the global clinical networks that he and David Cooper and others like them helped to set up. These were central to establishing crucial, high quality evidence for the treatment of HIV/AIDS across a variety of socio-economic settings and populations. These same collaborative networks have been rapidly repurposed to establish clinical research networks in COVID-19: importantly, these global networks actively involve both clinicians and affected populations in low- and middle-income countries, ensuring that advances will be accessible and applicable in those communities and health care systems.

It’s incredible what can be achieved when we strive for a common cause. Many contributed to the evolving science of HIV/AIDS treatment and to the care of those infected. The implementation of the scientific and clinical advances that have transformed the treatment of HIV have been dependent on effective partnerships and advocacy.

The same people who suffered so much from HIV were often the same people who volunteered for pivotal research studies. The ultimate act of altruism: because although sometimes there was a direct benefit from those trials to those that were involved, more often the benefits went to those that followed. The nobility in volunteering to receive suboptimal therapies eventually culminated in the excellent interventions we have for HIV/AIDS today. We must remember that progress against infectious diseases is stepwise and not always linear.

In Australia today we are in a privileged position. We have access to world-class treatments for HIV and for the time being have dodged the COVID-19 bullet. We must be careful that we do not abuse this privileged position and contribute to the stigma and discrimination of those who are suffering from the current pandemic.

We must use our privileged position to minimise the harm to others.

We must not reject the good, while we wait for the perfect.

We must advocate for those in harm’s way.

As a guide as to how we should act, it is absolutely imperative that we reflect on our response to HIV: to reflect on those we lost, and those who are still with us, as we are this afternoon.

It is up to us to keep these memories alive, to continue to tell the stories of those heroes to today’s generations, and of the terrible impact of stigma on people living with HIV and other infectious disease, so that we can work towards a world where who you are, or where you are from, does not impact on the access to or quality of care you receive.

Of course, access to lifesaving health tools remains an enormous global challenge. We are currently seeing a profound humanitarian crisis unfold in India; the images of makeshift funeral pyres burning around the clock, surrounded by a revolving crowd of grievers, in varying levels of PPE, are disturbing.

A series of Tweets by an Indian doctor by the name of Dr Jagadish Hiremath last year put in no uncertain terms the innate inequality when it comes to access to health-saving measures. He said:

Social distancing is a privilege. It means you live in a house large enough to practise it.

Hand washing is a privilege too. It means you have access to running water.

Hand sanitisers are a privilege. It means you have money to buy them.

Lockdowns are a privilege. It means you can afford to be at home.

Most of the ways to ward off Corona are accessible only to the affluent.

Dr Hiremath hit the nail on the head for the global imperative to ensure equitable access to medical interventions, whether it be to vaccines, to testing and hospital treatment, or just clean water and soap. We continue to fail on this front when it comes to so many health problems. HIV/AIDS is no exception when it comes to accessing preventative tools like free testing, PrEP, and lifesaving treatment medication. For effective control of infectious diseases: Equity is imperative.

Finally, what we have learned all too well from our shared experiences, both throughout the HIV/AIDS epidemic, and from the current COVID-19 pandemic, is that compassion and human contact are central to sustaining the human spirit. Infectious diseases do not discriminate: we are all vulnerable. However, they overwhelmingly impact on the vulnerable and marginalised, heightening stigma and discrimination.

There are few other diseases where those affected as are seen as unclean and a danger to others: whether they are or not.

In both this pandemic and in the early days of the HIV epidemic, infected people become isolated and often, as their disease progresses, they die alone with minimal human contact: separated from their loved ones. Peoples suffering is exacerbated and made more extreme when by isolation and loss of human contact and touch

We owe to all those who suffered in isolation to strive for effective use of vaccines and therapies to reduce this appalling suffering.

The road ahead may be long and uncertain, but there is great cause for optimism – when we come together, extraordinary things can be achieved. In doing so, we must never forget those who we have lost to HIV and the lessons their incredible lives taught us.

Professor Anthony Kelleher, Director, Kirby Institute

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