Making history: the community heart of AIDS 2014

Making history: the community heart of AIDS 2014

HIV Australia | Vol. 12 No. 2 | July 2014

By Brent Allan

For those who have attended an international AIDS conference in the past, understand that this is a conference unlike many others.

Sure, it is large and it is diverse, but what truly sets this conference apart is the role of community – both inside and outside the conference.

From planning, through to the delivery and evaluation of the conference, the community is involved in all levels of decision-making, working alongside government and the scientific community as equal partners.

Included in our numbers are advocates, activists and agitators – both people living with and people affected by HIV. We are patients, clients, consumers, test subjects, service users and service providers.

For the first time in the conference’s history, the vision for the Community Programme at AIDS 2014 explicitly endorses the greater and meaningful engagement of people living with HIV.

We have also explicitly named those key populations disproportionally affected by HIV in the global response to this pandemic in our vision.

Not only will we highlight examples of evidenced-based best practice in community responses to HIV, we will explore the innovation, creativity and entrepreneurial enterprise of promising practices.

In 1996, I stood outside a packed conference session room at the 11th International AIDS Conference in Vancouver where an impromptu television monitor had been set up to listen to David Ho present about something called ‘combination therapy’, using what was a new class of drugs called ‘protease inhibitors’.

I will never forget when a slide came up describing the results and the spontaneous cheers and applause that engulfed the conference centre.

These international gatherings provide a unique opportunity for the global community of scientists, politicians, and people living with and affected by HIV to share their voices across a single conference program.

Although amazing achievements have been made during the last 30 years in the fight against HIV, now is the time to step up the pace.

As part of the community response, we must build the skills we need to assess and develop the right ‘combination prevention mix’ for different populations.

How do we match the social and epidemiological aspects of different infection patterns with the growing choices in biomedical, behavioural and structural interventions?

We need to turn our growing understanding of the science into policy, and in turn into highly efficacious community and clinical-based test and treat systems to ensure that people living with HIV are supported on long-term treatment success.

At the Barcelona conference in 2002 I was on a panel to hypothesise about the treatment and prevention nexus.

The question, as it logically followed, was that if people with HIV were remaining undetectable then could there be a population benefit?

The person sitting next to me was an amazing woman from Uganda who challenged my rather glib and elitist analysis.

She spoke with passion about treatment access inequities in the developing world for people living with HIV, saying that its prevention effect was not hypothetical but a fantasy.

We quickly became friends and she opened my eyes to issues in her country; we remain close friends today.

AIDS 2014 will provide an opportunity for people from key affected communities to network and consider how to take control of their localised epidemics – how to dismantle the barriers to putting in place what we know to be effective prevention, testing and treatment programs.

This conference will call upon a global response to the human rights barriers, which are systemically disabling effective responses including legislative, regulatory and policy barriers as well as societal and cultural ideologies that often breed HIV stigma and discrimination.

We are at a tipping point in Australia and I believe we have the opportunity to achieve the 2011 United Nations Political Declaration targets.

Achieving those targets would make the virtual eradication of new infections by 2020 a real possibility.

However I have no illusions. We may not be able to radically transform societal mores but we can reform institutional barriers, we can work towards the goal of equal participation of people living with HIV in all aspects of civil society, and we can challenge ourselves and the roles we play as actors in research, government and civil society to ensure that our partnerships are healthy, robust and effective to enable a shared response which ensures that no one truly gets left behind.

At the last International AIDS Conference in Washington, I was convinced that we must do better to reduce HIV stigma and to develop resilience building programs for people living with HIV.

I met two colleagues, one from Malaysia and another from Canada, and we hatched a plan in a hallway outside the session rooms to adapt a people living with HIV leadership development course for use in Australia.

In two short years, this program had trained two dozen future leaders living with HIV across the country, all of whom are showing sustained resilience levels on standardised testing.

I challenge you to take advantage of what AIDS 2014 offers, both in terms of content and connections. Currently there are over 150 events being planned within the Australian Cultural Program, ranging from public forums and events, to performances, photo exhibitions, and large public gatherings.

The aim of these activities is to ensure participants travelling to AIDS 2014 experience all that our city and country has to offer, in particular our vibrant arts, sports, music and cultural scene, our excellent public amenities and our educational and scientific facilities.

The Australian Cultural Program will be featured on the AIDS 2014 official website – – on a dedicated page entitled Welcome to Melbourne.

Details will be accessed directly by delegates, sponsors, media and other interested parties as they start to build their conference schedule. Where appropriate, activity will also be listed on the City of Melbourne ‘What’s On’ website.

I leave you with one final reflection about being a witness to history. Within a week after the 1996 Vancouver conference, over 75,000 people living with HIV were moved from antibiotics and chemotherapy as treatment to an effective antiviral regimen, which increased their immune system strength and spurred what is now referred to as the ‘Lazarus Effect’.

This was when we first witnessed the truly transformative impact of antiretroviral medications on the lives of people with HIV.

Brent Allan is Executive Officer at Living Positive Victoria and Local Co-Chair of the Community Programme Committee, International AIDS Society.