Issue July - August 12
If you’re living with HIV, start a treatment conversation with your doctor napwa.org.au
UP FRONT
GONE FISHING ANDREW BURRY
I attended the 2010 International Conference on AIDS in Asia Pacific or ICAAP with an interest in learning about community responses from countries where environments are more complex and less resourced than the one we enjoy in Australia. More than two years after my attendance there is one particular presentation that I continue to find remarkable. It was given by a young Indonesian lawyer (Budi) who talked of the plight of fishing communities in his country. Interestingly, it had nothing to do with HIV and everything to do with empowerment. According to Budi, traditional fishing communities are low-tech single industry centres of population. This means that the health and well-being of everyone is dependent on a single activity, fishing. The problem these communities have is that the locations of the best fishing spots are picturesque and thus attractive to tourist resort developers. These developers and without any right to do so, simply move their bulldozers in and raze the villages to the ground. Land ownership in Indonesia is not necessarily straightforward but traditional occupancy of untitled land is recognised; meaning the villagers actually have the opportunity to seek redress through the country’s legal system. These villagers have not received a formal education and have followed a traditional lifestyle for generations; they can’t be expected to have any kind of instinct for law or the legal process meaning many of the villagers were simply dispossessed. The organisation that Budi represents provides pro bono legal support to these communities and attempt to force the transgressing developers to pay compensation and this is where it got interesting for me! How does compensation help communities return to their traditional way of life; particularly when considering that the legal process can take many years? During this time the villagers are denied a livelihood and a tourist resort is built on their land. This process cannot deliver a status quo simply because infrastructure and opportunity is wrecked by the bulldozers. The only acceptable outcome is that the developers are stopped before they cause permanent damage; but how can a community unversed and unskilled in the corrupt world of the property developer be mobilised to defend their rights? The answer as Budi explained it was textbook community development and empowerment. Instead of providing legal support after the event, the strategy was to build community leaders and equip them with knowledge and access to resources before they were actually needed. Then, for the leaders to feed this knowledge through the whole community so that not only would they know their rights, they would be in a position to exercise them. It was this idea of community empowerment that gave me so much food for thought. It is far too easy to be supportive by accepting a task that a community member is unable to perform themselves. When it comes to matters of human rights, it is relatively easy to take matters on behalf of clients to the Human Rights Commissioner and seek redress. However, the reality is often that once a person’s rights have been abused, there may indeed be no return to the status quo. Budi’s presentation spoke to me of the absolute importance of not simply addressing transgressions of rights, but ensuring that community members are sufficiently versed in their own rights and that they can be exercised at the most important time … before damage occurs and not after. It also spoke to me of a fundamental difference in working for a community and working from within.
HIV/AIDS MEMORIAL PROJECT Scott Malcolm
As announced at this year’s Candlelight Memorial, a working group has been established to begin fundraising efforts for the development of a permanent memorial dedicated to those affected by HIV and AIDS throughout the Canberra region. Over the next 12 months the AIDS Action Council of the ACT and the broader community aims to raise $30,000 to build and install the Canberra Permanent AIDS Memorial with a view to unveiling it in 2013, which will be the 25th Candlelight memorial held in the ACT 30 years since HIV was first diagnosed in Australia. Today there are more than 33 million people living with HIV worldwide and
more than 30 million people have died from an AIDS-related illness. More than 21,000 people in Australia are living with diagnosed HIV, and 6819 Australians have died from AIDS-related illnesses. The Canberra Permanent AIDS Memorial will become a permanent place of inspiration and an illustration of the impact of HIV/AIDS. It will be a fitting legacy, and a reminder – particularly for younger Canberrans – of the need to be ever vigilant in the battle against HIV and AIDS. If you would like to make a donation to the memorial project please contact the AIDS Action Council on 02 6257 2855, we will also be sending out a fundraising invitation to our members over the coming weeks.
‘PREVENTION THROUGH EDUCATION’ HIV AND HEP C INFORMATION SESSIONS AT THE ALEXANDER MACONOCHIE CENTRE (AMC) MARCUS BOGIE
Educational programs offered to detainees are generally provided and managed by correctional administrators within the confines of a closed system. However, the ACT Hepatitis Resource (HRC), the AIDS Action Council (AAC) and the Canberra Alliance for Harm Minimisation and Advocacy (CAHMA) have been engaging with the AMC to provide regular opportunities for detainees to learn about HIV and Hepatitis. ‘Prevention through Education’ is designed as a 1 hour interactive session that gives detainees the opportunity to engage with the educators in an informal setting and to ask questions around a short presentation. The presentation itself is intended to be informative and engaging without the need for previous knowledge of the topic.
The aim is to work with all of the approximately 300 current prisoners within a 12 month timeframe and to have in place a sustainable program that can be used well into the future. Providing education within the AMC has its own unique challenges but we continue to liaise with corrections management to ensure the needs of detainees are met and within the centres operating guidelines. The AAC and HRC also utilise an integrated approach through the provision of training for new AMC correctional officers in the same manner thus ensuring continuity of information within the centre. The AAC and partners are grateful for the opportunity to provide this educational program as an effective means of providing essential information about blood borne viruses to a particularly vulnerable group. www.aidsaction.org.au Jul - Aug 12 | 03
RE-MEDICALISING HIV, ANDREW BURRY
HIV is a virus which renders a person susceptible to a range of medical conditions. These conditions are either directly or indirectly related to the presence of the virus. In extreme cases which thankfully are very rare in Australia are conditions we describe as AIDS defining, meaning that a person is then diagnosed with Acquired Immune Deficiency Syndrome. Indirect conditions resulting from HIV include side-effects from antiretroviral (ARV) treatments such as lipodystrophy. In terms of social and personal impacts HIV is quite difficult to place into a community context. It is a blood borne virus meaning that the transfer of blood or other body fluids from an infected person to an uninfected person is likely to result in a seroconversion. HIV is also a sexually transmitted infection meaning that seroconversions result from sexual activity. HIV is an infectious disease meaning this virus can fit into a number of different medical categories. In Australia contracting HIV is usually a result of active decision-making. Sharing a needle, having anal sex without a condom or not accessing PEP are all decisions where an avoidable infection is not avoided. There is of course a difference between an active decision and an informed decision. In other words we can choose to have unprotected anal intercourse but be unaware of some or all of the potential consequences. In contrast the flu virus can be contracted simply by breathing, yet we can take steps to minimise the chances of catching it. This variety in the contextualisation of HIV may underlie the particular way that it has been and continues to be managed in Australia. The behavioural elements of transmission that make only certain members of the whole community vulnerable, contributes to a need for a strong community response in partnership with research, clinical services and government policy makers. The need for peer education and outreach within individual communities such as sex workers, gay men and people who use drugs has been of paramount importance over almost three decades. But perhaps things are about to change and HIV will be re-medicalised. Medicalisation is the process by which human conditions and problems come to be defined and treated as medical conditions. As a condition becomes medicalised, the role and power of professionals, patients and corporations (drug companies and medical service corporations for example) change. Ivan Illich put forth one of the earliest uses of the term. Illich philosophised that medical intervention increases illness and social problems through something called iatrogenesis, and he described this as occurring in three ways. Firstly, the treatment offered may result in side effects which are worse than the original condition. Secondly, there is a social element where patients and indeed the general public become docile and reliant on the medical profession in order to simply cope with life. The third aspect is that even natural processes like ageing and dying are medicalised into illnesses and in doing so society becomes less able to cope with them. How is this relevant to HIV? Recently there has been much talk of a paradigm shift that has occurred because of a so called prevention revolution. This is based on an idea that evidence now fully supports treatment as an effective means of prevention. By ensuring that a greater proportion of people living with HIV are on effective treatments and maintaining undetectable viral loads, we can expect a lower community viral load and thereby a lower rate of onward transmission. There is additional data which shows that people of HIV negative status on ARV treatments can avoid HIV infection even when having unprotected anal intercourse with positive partners. This heavy focus on treatment which by definition is a medicalised perspective, risks undermining the behavioural approach to HIV prevention by sidelining the community response. The community might then focus on pressure being engineered towards driving people to a controlling clinical management of their viral infection. Arguably, none of the touted advances are in reality new. We have known almost from the introduction of ARVs that viral loads become less detectable
and therefore infectivity declines. Almost five years ago the Swiss Statement demonstrated precisely this and gave hope to serodiscordant heterosexual couples that wanted to conceive in a natural way. Similarly we have known for over a decade that PEP, which involves the introduction of an ARV into the body around the same time as HIV is introduced is effective in stopping the virus replicating and taking hold. Why would we then be surprised to discover that if the ARV is introduced before the virus that it has the same effect? If we accept that the prevention revolution is less about new discovery and more about different ways of using existing knowledge, then we might well be sceptical about using the word revolution at all. Indeed, we might instead give some thought to the risks inherent in re-medicalisation. Even these risks are not new. Back in April 1999 AFAO wrote a briefing paper discussing the impact of HIV vaccines on HIV education. Included in that document is the following:
“Discourses and debates about HIV vaccines will encourage the perception that HIV can be engineered away. … “What this means for educators, is that the cornerstone of the way we work – that behaviour change is possible, and that effective behaviour change is best done in a community development context – is threatened. Will individuals start thinking that it’s not up to them anymore, that scientists will sort it out? Will governments start thinking that education on behaviour change is expensive and imprecise, and that developing communities of gay men and drug users is politically dangerous, and therefore favour vaccines over community development in their funding and policy decisions?” Whilst we are still waiting for a vaccine 13+ years on, the risks that AFAO point to are quite pertinent to today’s debate. Treatment as prevention should be seen as a supplementary or possibly complementary approach to behavioural strategies. Bold talk of a paradigm shift seems to suggest that medical advances are a new key to the lowering of Australia’s new infection rate. A behavioural approach in the context of persons who do not have HIV is centred on persuading them of the benefits in making decisions that help them to avoid or at least minimise, the chances of becoming infected. We have long embraced the principles of shared responsibility in minimising the spread of HIV and inherent in this is the concept of individuals understanding and accepting notions of their personal responsibility for their own health. We continue to diagnose around 1,000 new cases of HIV each year and some commentators blame this persistent rate on complacency produced by the virus no longer being the death sentence that it once was, or that the personal and social consequences as they are now understood no longer act as a sufficient deterrent to risk decisions. If these arguments are correct it might also be argued that vulnerable communities are already medicalising HIV; that is, if HIV is contracted then medical science will minimise the consequences. Treatment as prevention (TasP) seems to shift the onus of prevention more towards those already living with HIV. There is a potential subtext here that a good positive citizen will go onto treatment in order to reduce their detectable viral load and thereby pose a lesser risk to the community. In this process, positive people – and particularly those recently diagnosed – are presented with a preeminent model of care that is clinically based. Perhaps in time this will be seen as an appropriate way forward. Remedicalising HIV at the expense of social and community care and support, however, seems premature at best and dangerous at worst.
* Limits to medicine: Medical nemesis (1975) Ivan Illich
THE ACT MEDICARE LOCAL’S HIV program is available to assist GPs with an interest in HIV (particularly those with patients with HIV or patients with other HIV-related needs). In addition to providing an education program to GPs and other health workers, it offers nursing and counseling support. The program’s nurse, Philip Habel can work with your GP so that you get the most out of your GP visits. This can include routine practice nurse activities, discussing your health, your results and your treatments as well as helping you access a
www.aidsaction.org.au Jul - Aug 12 | 04
(FORMERLY THE ACT DIVISION OF GENERAL PRACTICE)
range of allied health services to help with HIV-related problems. Philip is based at the interchange general practice in civic; you can also arrange to catch up with Philip in other locations, such as community or health organisations . He can be contacted by phone on
02 6247 5742 or by e-mail: philip@igp.net.au
THE NATIONAL HIV STRATEGY THE KEY TO OUR PARTNERSHIP APPROACH ANDREW BURRY, KIERAN ROSSTEUSCHER
Time and time again we talk about the importance of the partnership approach which has been integral to the success of Australia’s response to HIV. A broad range of communities, professions and interest groups came together and established a world leading response to HIV, but these partnerships are not static and are not always easy to maintain. At particular times throughout the response to HIV, different partnerships have existed to meet certain needs. Indeed, until the early nineties many positive people didn’t feel that they were being included in the response to HIV at all. They felt they were merely being treated as victims and were too late to help and too late to participate in the response. We are frequently reminded that smaller affected groups feel left out of discussions which are dominated by the voices of gay men and this is symptomatic of the limited funds and resources we have available. At times different groups are polarised in an approach to a successful response but ultimately the end result is always the same goal – to minimise the transmission and impacts of HIV. There is always tension around the funding of a response to any issue. During the Australian response to HIV there has often been something of a struggle in gaining sufficient funding to ensure that the work done to reduce transmissions is as effective as possible. Naturally the size of the pie is limited and has to be shared in a way that ensures all parties have sufficient resources to make as big a contribution as possible. This sharing of the pie raises several questions; is sufficient attention given to social and epidemiological research, is there
enough investment in social marketing and is the level of care and support provided to those affected by HIV sufficient? These are all questions that need to be constantly addressed if we are to have an efficient response as well as an effective one. Funding for the HIV partnership is derived from both federal and state/territory governments, meaning actions need to be coordinated to avoid duplication and possible waste. In general terms it is the Federal Government that pays for the bulk of the research effort as well as funding the national peak bodies that advocate for appropriate legislative and policy frameworks. At a state/territory level, governments pay for community activity including health promotion campaigns, care and support for those living with HIV as well as indirect community costs around sexual health more generally. At various times we have seen governments disinvest in the community response and this disinvestment could be attributed as a cause for the rapid increase in new diagnoses in Queensland and Victoria through the first half of the decade beginning in 2000. The importance to the partnership in avoiding such unfortunate outcomes cannot be overstated. However, this importance requires all participants to understand the value and importance of the work that others contribute. It is the recognition of this that leads to the development of national strategies including the current 6th National Strategy on HIV. These strategies result from a considerable consultative process and culminate in a recommendation for adoption to the Federal
Health Minister. Subsequently, all jurisdictional Health Ministers adopt the strategy and commit to its implementation. This is important because a national strategy achieves a number of very important things. Firstly, it sets out in context the current state of the Australian HIV response and the dynamics that are current. Secondly, it brings focus to the target groups that should be addressed based on existing or growing vulnerability to new infection. Thirdly, it states the responsibilities of federal and state governments in remaining committed to achieving the stated outcomes. Fourthly, it establishes key indicators and priority actions that are considered by all stakeholders as necessary in the period ahead – usually three years for each new strategy. Most importantly however, the National Strategy defines the nature of the partnership approach and identifies the areas these partners are to focus on. This flows into the implementation strategies in each jurisdiction and this also ensures that individual states can tailor their local response to their local situations. Whilst we continue to be internationally acknowledged as having produced a world leading response to HIV which is a result of our partnership approach, as with any relationships, partnerships cannot be subject to complacency. Regular reference to the National Strategy will not only remind us all of why we are in partnership but will also keep us focused on the work still needing to be done and the continuing investment required.
INTERNATIONAL CANDLELIGHT REVIEW NADA RATCLIFFE
On a cool Sunday evening that was the 20th July 2012, Scott Malcolm, President of the AIDS Action Council welcomed community members to Canberra’s 25th International AIDS Candlelight Memorial at the National Gallery of Australia. This annual event held in centres around the world is more than just a memorial; it also serves as a community mobilisation campaign to raise awareness and consciousness of HIV. Today there are 33 million people living directly with HIV across the globe, millions more are also affected as relatives and care givers all have their own unique circumstances. The International AIDS Candlelight Memorial serves as an important intervention for global solidarity, breaking down
barriers of stigma and discrimination and giving hope to new generations.
too well the significance and meaning of such a memorial.
This year, we were fortunate to have Andrew Barr MLA, Deputy Chief Minister and Treasurer as our guest keynote speaker. Andrew is well known in the local region as an elected representative who is strongly committed to diversity, is a staunch campaigner for marriage equality and antihomophobia particularly in our schools and in sport. The primary focus of his speech this year was the launch of the community fundraising campaign for a Permanent AIDS Memorial for the Canberra region. Andrew’s talk was followed by heartfelt words from Richard Allen who having been affected by HIV for many years knows only
This year there was a feeling of true solidarity about the evening with significant contributions from different sections of our community. Guests included MLAs, dignatories from across the globe, Fred and Maria Wensing from the Haemophilia Foundation of the ACT, young people from Bit Bent and of course wonderful warm contributions from the Gay and Lesbian Qwire. At the 2013 International AIDS Candlelight Memorial we hope to be hearing a keynote speaker announcing news of the Canberra Permanent AIDS Memorial.
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PRIDE IN DIVERSITY, KEIRAN ROSSTEUSCHER
Pride in Diversity is Australia’s first and only not-for-profit workplace program designed specifically to assist Australian employers with the inclusion of lesbian, gay, bisexual, and transgender (LGBT) employees. Pride in Diversity was established as collaboration between ACON, Diversity Council Australia (independent not-for-profit diversity advisor to Australian businesses) and Stonewall UK through its Diversity Champions Program. As a member-based program, Pride in Diversity works closely with HR, diversity professionals and LGBT Network Leaders in all aspects of LGBT equality and within all sectors of the Australian workforce. No matter the starting point, Pride in Diversity works with organisations to understand the importance of LGBT inclusion and to map out strategies that enable work towards best practice. Drawing from extensive experience in organisational development, diversity practice and the implementation of LGBT related initiatives within the workplace, Pride in Diversity brings with it years of both practical experience and know-how. Apart from the feel-good effect of engaging a service like Pride in Diversity, there are some other outcomes that they aim to achieve, including: • Recognise, appreciate and utilise the unique insights, perspectives and backgrounds of others, promoting innovation, team collaboration and higher levels of productivity • Mitigate unintentional discrimination, disrespectful and damaging behaviour through education and awareness, the alignment of organisational values and the reduction of risk • Create an environment of trust, respect, inclusion and tolerance positively impacting employee attraction, engagement and retention • Appreciate the business case for LGBT diversity as it impacts your workplace culture and performance. Local members of Pride in Diversity include the Australian Federal Police (AFP), Department of Defence, Department of Health and Ageing and the Department of Human Services. At the 2011 Pride in Diversity Equity in Diversity Awards, the AFP GLLO (Gay and Lesbian Liaison Officers) network was ranked 2nd amongst employee networks and in 2012 the AFP were ranked 9th in the list of top 10 employers for LGBT employees. More information about Pride in Diversity can be found at http://www.prideindiversity.com.au
MindOUT!
This project is based on a paper prepared by the Alliance in 2011 which can be found on their website at www.lgbthealth.org.au/mindout . The Council is energised by this project and hope that it will enable us all to build long lasting sustainable pathways for referral and joint advocacy around the issues raised in the report.
MindOUT! Is a project of the Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) Health Alliance (The Alliance) which is based in Sydney. The project is a mental health and suicide prevention for the LGBTI community. MindOUT! Is the first national project of its kind and is funded by the Commonwealth Department of Health and Ageing to operate over 2 years.
The first step in this process was two community and 1 organisational forums held on the 2 May 2012 with Barry Taylor Senior Project Officer, setting out the aims and future steps. While the forums were well attended by service providers and community members we are aware that some people had been unable to attend but had expressed an interest in the project. The Council will be undertaking further information meetings with service providers to discuss the project and look forward to further updating the Canberra community on the progress of the project.
The aim of MindOUT! Is to work with organisations with an interest in LGBTI issues and mainstream mental health and suicide prevention organisations to improve mental health and suicide prevention outcomes for all LGBTI people and communities. With this is mind, the AIDS Action Council of the ACT (The Council) is working with the Alliance to actively engage with the Canberra community of service users and organisations to raise the awareness of these important health issues in the LGBTI community.
If you would like to hear more about and become involved with MindOUT! Please contact marcus@aidsaction.org.au
To mark World Hepatitis Day in Canberra, the ACT Hepatitis Resource Centre invites you to a community and stakeholder forum to be opened by Dr Peggy Brown, Director General, ACT Health Directorate.
HEPATITIS, TREATMENT & THE ACT COMMUNITY:
WHO WHAT WHERE WHEN & WHY? An expert panel of speakers will present on hepatitis treatment options, outcomes, preventing infection and the unique challenges of prison health, and treatment for people who use drugs. Professor Geoff Farrell
Associate Professor Narci Teoh
“Curing hepatitis C: new hope, no needles?”
“Liver cancer from hepatitis: prevention is better than cure”
Professor Michael Levy
Clinical Nurse Consultant Anne Blunn
“Hepatitis infections in prison: prevention, treatment, prevention”
“Living with HCV, to treat or not to treat?”
Ms Nicole Wiggins, CAHMA “Joining the dots: hep c treatment and injecting drug users” When:
30 July 2012 from 12 noon to 1:30pm
Venue:
The Canberra Hospital Auditorium (adjacent to Reception)
RSVP:
business@hepatitisresourcecentre.com.au or (02) 6230 6344
A light lunch will be provided. Please advise special dietary requirements with your RSVP.
www.aidsaction.org.au Jul - Aug 12 | 06
FOR YOUR DIARY JULY THU 5
Sat 11
Migration Legal Clinic
Wed 11 PSN Christmas in July Dinner
10am to 12noon
Wed 15 Volunteer Meeting
6pm to 7.30pm, Training Room, Westlund House, Acton
6pm to 8pm, Westlund House, Acton
PSN Dinner
(Enquiries to Mick for details)
6pm to 8pm, Rainbow Room, Westlund House, Acton (Enquiries to Mick for details)
Thu 12 Migration Legal Clinic
10am to 4pm, Westlund House, Acton
Thu 16 Migration Legal Clinic
10am to 4pm, Westlund House, Acton (Enquiries to Marcus for details)
(Enquiries to Marcus for details)
Wed 18 Volunteer Meeting
STRIP at the Ranch Fantasy Lane
6pm to 7.30pm, Training Room, Westlund House, Acton
Thu 19 Migration Legal Clinic
10am to 4pm, Westlund House, Acton
6pm to 8pm
Sat 18
(Enquiries to Marcus for details)
Wed 25 PSN Lunch Day Out
10am to 4pm, Westlund House, Acton (Enquiries to Marcus for details)
Thu 23 Migration Legal Clinic
10am to 4pm, Westlund House, Acton (Enquiries to Marcus for details)
STRIP at the Ranch Fantasy Lane
6pm to 8pm
STRIP at Westlund House, Acton 10am to 12noon
6pm to 8pm
Sat25
AUGUST Thu 2
STRIP at the Ranch Fantasy Lane
Sat 4
Looking Out Workshop
Tue 7 Thu9
Qnet Movie Night
6pm to 8.30pm, Rainbow Room, Westlund House, Acton (Enquiries to Nick for details)
Migration Legal Clinic
10am to 4pm, Westlund House, Acton (Enquiries to Marcus for details)
STRIP at the Ranch Fantasy Lane 6pm to 8pm
10am to 4pm, Rainbow Room, Westlund House, Acton (Enquiries to Chai for details)
7pm for 7.30pm start (Enquiries to Nick for details)
Thu 30 Migration Legal Clinic
10am to 4pm, Westlund House, Acton
10am to 4pm, Rainbow Room, Westlund House, Acton (Enquiries to Chai for details) 10pm to 12noon
Out There Workshop
AIDS Action Council Fundraising Trivia Night at the Labor Club Belconnen
6pm to 8pm
STRIP at Westlund House, Acton
10am to 4pm, Rainbow Room, Westlund House, Acton (Enquiries to Chai for details) 10am to 12noon
STRIP at the Ranch Fantasy Lane
Sat 28
Out There Workshop
STRIP at Westlund House
(Enquiries to Mick for details)
Thu 26 Migration Legal Clinic
10am to 4pm, Rainbow Room, Westlund House, Acton (Enquiries to Chai for details)
STRIP at Westlund House
10am to 4pm, Westlund House, Acton (Enquiries to Marcus for details)
Looking Out Workshop
(Enquiries to Marcus for details)
SEPTEMBER Sun 2 Mon 3
Farther Day Together Workshop
Tue4
Dietitian Clinic
6pm to 9pm, Rainbow Room, Westlund House, Acton (Enquiries to Chai for details) 10am to 4pm, Westlund House, Acton (Enquiries to Marcus for details)
2012 Annual Annual AIDS Action Council 2012
Saturday 25th August 7pm for 7:30pm start The Canberra Labor Club, Chandler Street Belconnen
$200 for a table of 8, single ticket for $25
Great prizes, raffles and auctions to st
win
1 Prize: SAMSUNG 51� Full HD 3D Smart Plasma TV $1191 2nd Prize: Sony 3D Blu-ray Theatre System $794 3rd Prize: DeLonghi Nespresso Pixie Coffee Machine Red $399
For more information www.aidsaction.org.au/trivia