The Long Road Forward

From the worst of times, it is sometimes the case that the very best of humanity is drawn out. With grit and determination our species finds a way to continue our long march forward. And out of grief and beyond loss, we find happiness and fulfilment once more.

Each year, World AIDS Day is an opportunity to reflect on one of those terrible periods in our history. It is a time for reflection. It takes us back to the loss, sadness and tragedy of AIDS. We recall our experience and the colleagues, friends, lovers, and family frozen in time, no longer with us.

But there is another side if we choose to go there. We can reflect on the ‘80s and ‘90s and the years since, with a sense of pride. We can look at what we’ve achieved, how we’ve conducted ourselves, and how we’ve funnelled our energies into building a better and more compassionate world. We’ve improved health care, revolutionising the ways care and services are planned and delivered. We’ve influenced and shaped research. Our understanding of blood borne viruses has advanced, as has our public health expertise and our capacity to respond to public health emergencies, and to control disease. And let’s not forget the part we’ve played in the rapid advance of testing and treatments which brought about effective combination therapy. We have treatment as prevention and the biomedical prevention PrEP, and we’re embarking on new frontiers, such as the development of long-acting injectables

NAPWHA and Gilead's 2023 Community Champions

NAPWHA and Gilead’s 2023 Community Champions at the World AIDS Day ‘Beyond Undetectable’ dinner in Sydney

The engagement of people with HIV has been a critical part of the Australian HIV response. So too have the clinicians, researchers, community advocates, policy-makers, friends, allies and families who have supported and partnered us to address the many challenges that HIV has dealt us. This partnership characterises the Australian approach to the epidemic that is the model for the global response.

Last November, a conference was held in Sydney, co-hosted by NAPWHA and Gilead Sciences, ‘Beyond Undetectable – Improving Outcomes for People With HIV’ brought together GPs, specialists, researchers, pharmacists, people with HIV, and our allies to consider priorities for the next phase. The event focused on outcomes which are not measured against baseline survival or one’s resilience, but on the joy and happiness founded on good health, well-being and quality of life. It was an example of mutual respect and an acknowledgement that we are equal partners, each playing our part to enhance understanding and to achieve shared and mutual benefit.

But it hasn’t always been so.

AIDS activism and the community-based response in Australia was born out of the bravery and radical actions of those in the 1980s.

The emergence of HIV treatments activism gave rise to the movement of people living with HIV/AIDS which led to the formation of the National Association of People With HIV Australia and organisations such as Positive Life NSW, Queensland Positive People, and Living Positive Victoria.

Recollecting the past takes us back to a time of ACT-UP style actions and protests, and to a time of people with HIV and of a community ‘running out of time’ waiting for access to lifesaving treatments.  In desperation, we resorted to powerful public and collective actions with fists, voices and banners raised to demand attention, out of a real and genuine fear of dying.

However, long lasting change required an additional parallel strategic response. So, again led by people with HIV, we stepped up and applied our knowhow to building consensus, confidence and collaboration, and to take our place at the table, sometimes with the very institutions, funders and individuals who were the targets of the radical activist response.

That strategic response went on to become a real strength of our movement and have a long-lasting foundational impact. The deliberate and diligent pathway paved then led us to the space we occupy today by building bridges between the different arms of the response, often between individuals and groups with vastly different ideas on how to get to where we needed to be.

NAPWHA President, Scott Harlum at Gilead's 'Beyond Undetectable' World AIDs Day Event

NAPWHA President, Scott Harlum at Gilead’s ‘Beyond Undetectable’ World AIDs Day Event

The ongoing development of effective combination treatments since 1996 mean HIV is no longer a death sentence, and people with HIV in Australia have a life-expectancy equivalent to that of the general population. HIV is now considered a manageable chronic condition, however, that downplays the complexity of the experience for many, and of the impacts and health issues sometimes associated with living long term with HIV.

Many challenges remain for our communities, and there is much work still to do. But on World AIDS Day we can take the time for a break, and think back to the long road we’ve travelled, and to marvel at and take credit for the change we’ve made happen.

Be in no doubt that the seemingly simple notion, ‘nothing about us without us’, which is central to our movement, is a revolutionary concept which has driven a shift in the direct engagement of health consumers in health care, systems and planning.

The idea of the greater and meaningful involvement of people with HIV, or MIPA/GIPA, is a revolutionary concept and enabled the emergence of person-centred care. Harm minimisation, borne out of the need to protect people who use drugs and prevent HIV, was also ground-breaking. As has the introduction of peer-based services and the development of the HIV peer workforce, now supported by workforce standards produced by the National Association of People with HIV Australia, and increasingly playing a role informing clinical conversations.

It can be argued that the messy disputes between blood relatives and the chosen families of people who died of AIDS led ultimately to marriage equality.

It could be argued that even our national capacity for contact tracing, deployed to great effect in response to COVID 19, can be attributed to HIV in Australia.

There are other revolutionary developments borne out of HIV which benefit every person who visits a doctor or a hospital or who receives health care in Australia, and that’s every single one of us.

NAPWHA President, Scott Harlum at Parliament House on World AIDs Day 2022

NAPWHA President, Scott Harlum at Parliament House on World AIDs Day 2022

From a time when people with HIV were largely invisible, to today when positive action, representation and participation of people with HIV is embedded in the Australian HIV response, there is no one story. There are many and the voices are diverse. Stories of those we have lost should not be forgotten as they teach us and continue to be relevant to the work we do today, and our ongoing representation of and work for our communities impacted by HIV.

On World AIDS Day we acknowledge all of the community elders upon whose shoulders we stand and whose community involvement and leadership remain central to our shared history as people living with HIV.

I speak of the shining lights of that time including those involved in the first major ‘coming out’ of people with HIV at the Third National Conference on AIDS held in Hobart in August 1988, where, for the first time, people wearing badges which identified them as HIV+ took to the stage in an act of visibility.

And those who, not long after at a Living Well Conference at Fairfield Hospital, first spoke of the idea of establishing a national movement of people with AIDS. And those who in late 1988 attended the first meeting of the National People Living with AIDS Coalition (or NPLWAC).

I speak of those who, running out of time waiting for access to lifesaving treatments, took part in powerful ACT-UP style public actions and who claimed a place at the table for people with HIV.

And I speak of all those who collaborated, and through consensus paved a deliberate and diligent pathway out of grief and beyond our loss, and who built the strategic response which went on to become the real strength of our movement and have a long-lasting foundational impact.

I speak also of those in government and parliament bold enough to comprehend that HIV transcended politics, party lines and division.

And I speak particularly of those who boldly declared, ‘nothing about us without us’, which is the cornerstone to our movement to this day.

I speak of ordinary people who, when called upon, did and achieved extraordinary things.

Regardless of who we are, what we do, or what our HIV status, the many and diverse stories and voices of HIV teach us that the very best of humanity, the very best of us, resides within each and every one of us.

And on World AIDS Day we thank them for that lesson.

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