World AIDS Day 2014
To mark World AIDS Day 2014, ATODA invited two drug user advocates to reflect on their experiences at the International AIDS Conference 2014
, held earlier this year in Melbourne.
"Hidden," "at risk," "target" and "key" populations: from the shadows to the margins at the AIDS conference 2014
By Sione Crawford, Canberra Alliance for Harm Minimisation and Advocacy (CAHMA)
Those who were around at the time recall the early, frightening days of HIV and the near-hysteria that accompanied it. Communities of people were nearly entirely defined by the disease. Indeed it was known for a while as GRID – Gay-Related-Immuno-deficiency Disease. The gay community could not be any more closely linked to it and naturally the stigma, fear and ignorance of the illness reflected onto this community.
As HIV/AIDS came to be better understood other groups were understood to be “at risk.” Sex workers and people who inject drugs soon came to be known as “at risk populations.” Generally the big fear was that AIDS would leak out into the “general” community. So very early on, and largely because we had no medication whatsoever, the focus was clearly on prevention of transmission (especially to heterosexual people).
The language quite clearly talked about operating upon
a population and not working with
a community. So phrases such as “target groups,” “at risk populations” and “hidden populations” came into being.
What is the problem with this? In some contexts there is no problem. However, when an epidemic is raging through three communities that are variously illegal, stigmatised and closeted already the world has found, to its cost and to the cost of these communities, that alienating and separating groups out from each other and the wider (or “normal”) community can do more harm than good. It increases stigma and it locates us clearly as other
or not normal – a short step to abnormal and deviant and another short step to “bringing it on yourselves.”
The term “key populations” has generally overtaken the term “at risk populations” or “vulnerable populations” in public health parlance. This is a step forward from the language of “at risk populations” and far better than the once popular “hidden” or “hard to reach” populations.
Thankfully, over time, the importance of involving the affected community as “part of the solution” has become clear, to the extent that the AIDS 2014 conference paid a lot of attention to it. While the tagline for this conference was “Stepping up the Pace” (on wider treatment, more research into vaccines and so on) the “Melbourne Declaration” was entitled “Nobody left behind” and it strongly condemned stigma, discrimination and criminalisation of people living with HIV and of sex workers and illicit drug user and injectors and demanded that all communities were to be included in the push for complete coverage of treatment.
To what extent then did the conference itself live up to this declaration? To what extent did those most affected by HIV participate in the conference and how were barriers to participation overcome?
Even the choice of conference location can erect barriers for certain communities. Many countries discriminate directly against people with HIV and often indirectly. Most countries do not want to let sex workers or people who inject drugs in at all!
The last conference in 2012 was held in the USA. This decision left a large number of people unable to attend due to the rigid visa and immigration regulations. This shows just how deep the structural barriers faced by many affected communities go.
There were a number of sessions at AIDS 2014 that focused on key populations. For the first in the history of the conference there was a session devoted entirely to women who use drugs. It was convened and chaired by the International Network of Women who Use Drugs (INWUD). Speakers from around the world presented on a range of issues. It was made clear that the power discrepancy faced by women in general is exacerbated when combined with the stigma of drug use. An interesting aspect of the session as a whole was that drugs were seldom the primary issue of concern for presenters. Violence from men who see women as chattels; violence from police who seek to compound marginalisation with rape; structural violence from a system that requires a woman to have parental or a husband’s permission to access opioid substitution treatment; the social violence that even further stigmatises transgender people. These structural barriers to prevention and to treatment of HIV are what are stopping individuals from being able to make safe choices for themselves.
The “Community Dialogue on Key Populations: Who’s in…Who’s out…and why?” sought to work through the key issues for “key populations” and while the various presenters made excellent representations for their communities, the underlying theme was one of alienation from the prevailing messages about HIV treatment for all. Doris Peltier spoke eloquently about the (unintentional) stigmatising language of hidden and hard to reach populations being transferred across to the term “key population.” She spoke of her anger at being characterised as “vulnerable” by a health bureaucracy. An audience member, who has been involved in this work at the UN level for many years stated that the way key populations have been characterised as “hidden” or “hard to reach” has always been from the perspective of the researchers, bureaucrats and so on – from the “top down”. This idea that some communities “hide” from services has almost given the sector an excuse for not having succeeded in these “hard to reach” communities despite knowing the importance for over twenty-five years. His point is that if those charged with implementing HIV strategies do not partner effectively with communities of “hard to reach” people – or “key populations” this time around there may be another two decades go by where these communities are ineffectively engaged and people die.
This is particularly critical in developing countries where widespread prevention programs have never been implemented and there is already a level of HIV that means they are starting with one arm tied behind their back.
While there were a number of other sessions around key populations these two sessions highlight for me two important lessons. Firstly, disempowered groups have less capacity to tackle HIV and it is everyone’s responsibility to dismantle barriers such as personal and structural violence, and secondly, key populations must be partnered with early and genuinely if we are to avoid the mistakes made earlier on in the fight against HIV/AIDS, where a small group of experts identified the issues but were unable to implement the solutions fully. We need to remember how effective community action can be and we need to enable this through both funding and opportunity.
AIDS 2014: A Personal Perspective
By Geoff Ward, Canberra Alliance for Harm Minimisation and Advocacy
The recent biennial global HIV/AIDS Conference, “Stepping Up The Pace”, was held 21st
July with some 12,000 delegates coming to Melbourne. As a member of a small drug user organisation my attendance was up in the air until some late scholarships were made available by the Australasian Society for HIV Medicine (ASHM); for which I was grateful.
My main focus was the “Higher Learning at AIDS 2014” program run over four days in the International Drug Users Networking Zone in the Global Village. Partly this was due to the fact that I was presenting the first event of the program entitled, “Introduction on how to use Australian injecting equipment including the use of wheel filters: Interactive demonstration.” I wanted to demonstrate the effectiveness of wheel filters as a harm reduction tool. The demonstration (using Disprin) went really well and many people were mesmerised as to how effectively a cloudy liquid could be made perfectly clear. This proved to be a great advertisement for Australia’s needle and syringe program (NSP) in general and especially the range of equipment (four different size wheel filters) that is accessible through the primary NSPs in the ACT. Many overseas delegates were so interested in the use of wheel filters as a harm reduction tool that they provided contact details so I could send them more extensive information.
One of the best resources was launched by John Miller from Toronto, who is the Director of the Coalition for Children Affected by AIDS, www.ccaba.org
.The resource is titled “Difficult Decisions: A Tool for Care Workers: Managing Ethical Dilemmas When Caring for Children and Families of Key Populations: People Living with HIV, People who use Drugs, Sex Workers, Transgender People, Gay Men and other MSM’s.” It was launched on “Partners Day” and provides a four-step guidance to decision-making. Small to medium-sized community-based care, treatment, or support organisations that traditionally do not have an ethics program will find it particularly useful. Managers can use it as a tool to support their workers and to identify gaps in program policy, training, supervision or staff support. To download copies of this guide, an orientation slide presentation, and an editable MS Word version of the Four-Step Tool go to www.careworkerethics.org
The theme of AIDS 2014 “Nobody Left Behind” focussed on vulnerable populations that have suffered disproportionately in the global HIV/AIDS crisis. The Pulitzer Centre on Crisis Reporting Special Projects Coordinator Zach Child gave a demonstration of their Interactive Website along with a number of grantees who presented their work on marginalized groups. The map can be found at: http://pulitzercenter.org/map
“The codes are written so deeply into the fabric of society that it sometimes feels like there's no room to change. One way to break out of that cycle is to introduce the issue to a global audience, and hopefully this will be a chance to do that for them.” – said journalist grantee Michael E. Hayden.
Peter Sarosi from the Hungarian Civil Liberties Union (HCLU) presented “Film as a tool for activism” a session that gave insights into how to utilise film most effectively. The HCLU have produced a range of excellent videos. The website Drug Reporter is the drug policy website of the HCLU and can be found at: http://drogriporter.hu/en/
Taking a look at “the big picture” was the session about the UN General Assembly Special Session (UNGASS) on Drugs which will take place in 2016. Titled “How to get involved, and why?” it began with a presentation from Ann Fordham from the International Drug Policy Consortium. Three speakers spoke about ‘asks’ for UNGASS followed by a Q & A from participants. A good summary of UNGASS and why it matters can be found at: http://www.opensocietyfoundations.org/explainers/what-ungass-2016
The Global Village was an amazing gathering of NGOs, community organisations, sex worker groups and drug user groups. It focussed on celebrating the successes of the HIV response globally and within the Asia-Pacific region. It was a space for all affected communities to be highly visible and be able to network and promote participation and human rights. As with any complex issue co-operation, compassion, understanding and education are the keys to positive change.
In conclusion, it was an exhilarating experience and Melbourne did a wonderful job as host city. I was really proud of the contribution made by organisations from the ACT like AIVL and CAHMA. The support of our sister organisation Harm Reduction Victoria was also much appreciated.
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