In 1983, the Denver Principles were written by activists living with HIV. Concepts we take for granted such as doctors consulting patients about changes in ongoing care, the right to access healthcare services without discrimination, and the privacy of medical records all were introduced in the Denver Principles.
This year is the fortieth anniversary of the Denver Principles.
In part they state: “We condemn attempts to label us as ‘victims’, a term that implies defeat, and we are only occasionally ‘patients’, a term that implies passivity, helplessness, and dependence upon the care of others. We are ‘People with AIDS’” – this at a time when people were not living with HIV, but instead dying of AIDS-related illnesses.
This demand for a place at the table, for the right to be part of community, the right to make decisions and speak for themselves, and the fundamental right to dignity and respect was in hindsight, ahead of its time.
It also radically changed the way people living with HIV/AIDS were viewed, and helped revolutionise healthcare advocacy.
It is difficult to convey to those who were not present, the devastating impact of HIV on an entire generation in the early 1980s and 90s. It is equally difficult to convey the resilience, strength and humour of those who died and/or lived through the early days of the epidemic.
For the past four decades, those of us living with and affected by HIV have continually advocated to be meaningfully involved in the medical decisions concerning us as well as the research that informs the understanding of, and responses to, our health, wellbeing and quality of life.
The HIV response in Australia has benefited from a bipartisan approach to the epidemic and a wide range of organisations that are led by and for communities affected by HIV.
Forty years ago, the notion of a community of people being empowered and The Denver Principles’ use of person-first language has since become standard practice not just in HIV care, but across a broad spectrum of healthcare fields and disciplines.
The Denver Principles have been a foundational document in the history of the AIDS epidemic, and declaration of empowerment for people living with HIV which has acted as a model for other historically marginalised groups who have fought for rights and dignity.
A decade later at the 1994 Paris AIDS Summit, heads and representatives of 42 governments agreed to “support a greater involvement of people living with HIV at all […] levels […] and to […] stimulate the creation of supportive political, legal and social environments.”
This set of principles is commonly referred to as the “Greater Involvement of People living with HIV/AIDS’ or GIPA and was endorsed by 189 UN member states in 2001. This evolved over time to the ‘Meaningful Involvement of People Living with HIV’ or MIPA, which ensures the communities most affected by HIV are involved in decision-making, at every level of the response..
Both sets of principles have highlighted two important things:
- To recognise the important contribution people living with HIV can make in the response to the epidemic, AND
- To create space within society for our involvement and active participation in all aspects of that response.
The participation of all people living with HIV benefits everyone, even when the burden of competing agendas seems overwhelming.
This year’s International World AIDS Day theme is Let Communities Lead. Communities begin to transform when organisations seek out the expertise of those impacted, and people living with HIV begin to view ourselves as subject matter experts. It is by the persistent guidance of people living with HIV that we continue to innovate and improve our methods of managing the HIV epidemic; and influence the public health messaging here in Australia.
Today, considerable inequities remain in the HIV care continuum particularly in more marginalised populations of overseas-born men who have sex with men, people from culturally and linguistically diverse backgrounds, heterosexual men and women and Aboriginal and Torres Strait Islander people.
Health equity-focused approaches are necessary in this next decade to close these gaps in our HIV epidemic.
History informs our present. Without it, we risk repeating harms. Without it we lose valuable lessons and the richness of lives intertwined in the HIV epidemic. Without accountability mechanisms around diversity, inclusion, and equity, meaningful community engagement remains an aspirational mantra rather than embedded reality.
Which brings me to the Australian 2023 World AIDS Day theme – Inclusion, Respect and Equity.
Inclusion means more than mere acknowledgment; it means actively dismantling the barriers that perpetuate stigma and discrimination. It requires us to champion policies and programs that not only prioritise the physical well-being of all people living with HIV but also recognise the importance of mental and emotional health.
Inclusion means being seen for the whole person we are, not just as patients or carriers of a virus. It means a seat at the table where decisions are made about our health and well-being.
Respect becomes a fundamental pillar. Respecting the dignity and autonomy of every person living with HIV is not just a slogan; it is a call to action. It compels us to challenge the lingering stereotypes and prejudices that have hindered progress for far too long.
Respect is about empowering people living with HIV to be agents of change, acknowledging our expertise in our own lived experience. Respect means our voices will be heard AND valued — that our stories will be listened to with empathy and without judgment.
Equity is both an aspiration and our demand. Equity means recognising that the burden of HIV is not distributed evenly across communities and populations. It demands a commitment to addressing the social determinants of health that perpetuate health disparities. It urges us to ensure that access to prevention, treatment, and support services is not a privilege, but a right for every person, irrespective of their background or circumstances.
Equity, for each one of us living with HIV provides accessibility to opportunities and resources. Equity dismantles the systemic barriers that impede our progress and perpetuate the disparities that persist within our communities.
While public health messaging about the HIV epidemic has evolved substantially over the past 40 years, future HIV messaging must be driven by co-designed health equity principles that include an increased representation of other populations in nuanced and targeted ways.
Future HIV messaging must not leave diverse populations behind in our quest for the virtual elimination of HIV transmission.
In closing, HIV-related disparities and health inequities are both a public health and moral imperative.
As we commemorate World AIDS Day, let’s continue to be guided by the Denver Principles.
Let’s create a world where our HIV status does not define us, where societal attitudes reflect compassion rather than judgment, and where healthcare systems are designed to meet our needs without discrimination.
Delivered as a speech at a 2023 World AIDS Day event in Sydney, NSW