Since the beginning of the epidemic in the early 1980s, community leadership has been at the heart of Australia’s response to HIV. Our story spans more than 35 years of community led action to counter an epidemic that at times has seemed unstoppable.
Very soon after the first cases of AIDS were diagnosed in Australia, activists from the gay community began talking to each other. They formed networks to share what little information there was about the causes of a frightening new illness affecting gay men. Public meetings were held. Early community leaders spoke out against media fuelled AIDS hysteria and called for urgent awareness raising and accelerated research to understand the dimensions of the problem.
As the caseload of people with AIDS began to grow, we learned that AIDS was caused by a virus (HIV). What was first termed GRID (gay related immune deficiency), was soon renamed AIDS (acquired immune deficiency syndrome), reflecting the reality that AIDS impacts on people from all walks of life, not only gay men. This emphasised the need for a broad community coalition to fight HIV, which included people living with HIV and the communities most vulnerable to the epidemic.
Most Australian governments supported early efforts to inform the public about HIV and to provide care for increasing numbers of sick and dying people. However, some governments appeared ambivalent and even hostile to those living with HIV and affected communities. It became clear that strong community voices were needed across Australia to advocate for quality prevention and care services and to counter HIV related stigma and discrimination.
By the mid-1980’s, the early work of gay community activists had seen community based AIDS Councils formed in the States and Territories to provide peer led prevention and support and to galvanise hundreds of volunteers around the country to help with this work. Sex workers, injecting drug users and people living with HIV also formed organisations to maximise their efforts in Australia’s HIV response.
These community based efforts complemented the building of a strong partnership approach to HIV across Australia, bringing together political leaders, all governments, affected communities, people living with HIV, researchers and the health profession. This vision of partnership gained wide support and soon became the cornerstone of Australia’s HIV response – one which caught global attention as an exemplar of partnership in action.
Discussions among the various AIDS Councils around the country decided that there should be a strong national voice in Australia’s HIV response to complement local efforts, especially in areas where the Commonwealth has clear responsibilities, such as in scientific research, access to new HIV related tests and treatments, monitoring and surveillance and setting clinical and support standards.
It was clearly unworkable to have all the AIDS Councils and other HIV focused organisations trying to do advocacy at the national level, as well as at their local level, so the idea of having a national HIV organisation to provide that national voice was floated by the AIDS Councils. The Commonwealth government supported the proposal and encouraged inclusion of representatives of sex workers, injecting drug users, Aboriginal and Torres Strait Islanders and people living with HIV.
In 1985, leaders from the AIDS Councils met and agreed to create a new national community based HIV organisation, to be known as the Australian Federation of AIDS Organisations (AFAO). An office was set up in Canberra with an Executive Director and a small secretariat.
Soon after AFAO’s establishment, the Commonwealth government decided to begin work on Australia’s first National HIV/AIDS Strategy. AFAO was authorised by its members to coordinate community input into the process. AFAO made a substantial contribution to the development of the first Strategy and argued successfully for the Commonwealth government to play a leading role in encouraging nationally consistent policies and programs and to provide targeted funding to help “kick start” prevention and care programs at State and Territory level.
AFAO representatives were appointed to the Commonwealth Health Minister’s national HIV advisory committee, which oversaw implementation of the first National HIV Strategy. AFAO successfully proposed the setting up of a Commonwealth HIV clinical trials and treatments advisory committee to encourage early access to experimental HIV treatments, set clinical standards and to foster HIV research across basic, clinical and social sciences.
The first Strategy also saw funding for the first ever community based HIV treatment information project in Australia, which was to play a significant role in treatment policy and advocacy and in providing advice to the community on research, particularly involving access to new experimental treatments. Another first supported by AFAO was the establishment of a legal project, which played a pivotal role in advocating for effective laws and policies to counter HIV related discrimination and stigma.
AFAO has been a leading contributor to the six successive National HIV/AIDS Strategies that followed the first Strategy in 1989. This work continues today, as work on an 8th National HIV/AIDS Strategy gets underway.
AFAO and members are also active contributors in the fight against HIV at global and regional levels. In 1991, AFAO participated in the formation of the International Council of AIDS Service Organisations (ICASO), which was set up to provide a vehicle for global community based advocacy.
Since the early 1990s, the AFAO International Program has worked to support stronger civil society responses to HIV, health and human rights, and contribute to effective policy engagement in Asia and the Pacific. Our office in Bangkok provides an important base for our regional work and supports the work of a number of regional community partners, including the Asia Pacific Council of AIDS Service Organisations (APCASO) and the Asia Pacific Coalition on Male Sexual Health (APCOM). The International Program now includes the SHIFT Program (Sustainable HIV Financing in Transition) which is funded by the Global Fund for AIDS, Tuberculosis and Malaria. This program supports civil society to engage in policy dialogue around sustainable HIV financing for key populations in Indonesia, Malaysia, Philippines and Thailand as they transition towards greater domestic financing.
AFAO has also been significantly involved in the United Nations’ response to HIV, particularly input into the development of the United Nations General Assembly’s Declarations on HIV/AIDS in 2001, 2006, 2011 and 2016. All countries have endorsed these Declarations and promised to adopt evidence based responses to HIV, supported by targets, timelines and funding with agreement on a global target of ending the epidemic by 2030.
AFAO has consistently urged Australia to help lead global efforts to end HIV by example at home. There is probably no country better placed than us to do this, given the many societal and health system advantages we have. We therefore applaud the leadership of Australia’s Health Ministers in agreeing to set bold targets for Australia’s HIV response, which not only align with those of the United Nations, but go further and seek to virtually eliminate HIV transmission in Australia by 2020.
This means that Australia is due to meet these ambitious HIV targets in just three years – so there is much still to do. AFAO has reorganised and refocused our efforts so we can lead the national conversation on HIV prevention, treatment, care and research as we work towards the 2020 elimination goal. We will strongly focus on working with our partners to help roll out HIV testing; promote immediate HIV treatment for people newly diagnosed; promote combination prevention, including post-exposure prophylaxis (PrEP); advocate for harm reduction policies; and do all we can to fight HIV related stigma and discrimination.
The history of AFAO and our members is a proud one. However, we know there is still a lot of work to be done to meet the bold HIV prevention and treatment targets Australia has committed to. But as challenging as the next years will be, we know we have 35 years of community based inspiration to draw on and we are therefore well placed to turn the vision of ending HIV into a reality.
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