Volume 13 • Number 3

Fire in the belly: the call to action on HIV from Aboriginal and Torres Strait Islander communities HIV Australia Volume 13, No. 3 (December 2015) ISSN 1446-0319 | Aboriginal and Torres Strait Islander Editors Finn O’Keefe and Linda Forbes people should be aware that this Guest Editors James Ward and Michael Costello-Czok magazine may contain images or names Treatments Editor Jason Appleby of people who have passed away. The Australian Federation of AIDS Organisations (AFAO), the Anwernekenhe Editorial National HIV Alliance (ANA) and the editors It is with great pleasure that we launch the second special edition of HIV Australia of this edition of HIV Australia acknowledge dedicated to Aboriginal and Torres Strait Islander health issues. This edition has been the traditional owners of the lands we operate produced to coincide with the 2015 Aboriginal and Torres Strait Islander HIV Awareness on across Australia, and pay respect to Week (ATSIHAW) and to commemorate the 21st anniversary of the Anwernekenhe Indigenous Elders past and present. movement, fighting to protect the rights of Aboriginal and Torres Strait Islander people This edition is dedicated to ongoing survival affected by HIV. After the previous special edition’s success in 2013, this edition comes of those living with HIV and to Aboriginal and at a timely point in our contemporary histories for Aboriginal and Torres Strait Islander Torres Strait Islander people whom we have peoples and HIV. lost to HIV/AIDS. Without the determination The Aboriginal and Torres Strait Islander-led response to HIV is at a crossroads; we have and tenacity of these pioneers, we wouldn’t be the tools to address HIV, but how do we ensure that the latest HIV prevention methods and where we are today. knowledge is reaching our communities? Articles in this edition showcase current community- driven programs across the country and highlight actions required to stimulate political action Correspondence: HIV Australia C/– AFAO, PO Box 51 Newtown and maintain vigilance and awareness about HIV among Aboriginal and Torres Strait Islander NSW 2042 Australia communities. What actions do we need to take now to safeguard the health of Aboriginal and Tel +61 2 9557 9399 Fax +61 2 9557 9867 Torres Strait Islander communities into the future? Email [email protected] Website www.afao.org.au Now more than ever, we need to galvanise our efforts in HIV health promotion and prevention HIV Australia gratefully acknowledges the assistance of – focusing on the new tools we have in the biomedical prevention front, as well as the the Commonwealth Department of Health new information that arises from research – to be able to address HIV appropriately in our Print post approved PP225920/00016 communities. AFAO is the national federation for the HIV community response, The articles which follow illustrate the great amount of work happening across Australia to providing leadership, coordination and support to the Australian address HIV among our peoples, ranging from the HIV Free Generation campaign run by policy, advocacy and health promotion response to HIV/AIDS. the Aboriginal Health and Medical Research Council in NSW, to the work being done by the Internationally, AFAO contributes to the development of effective state and territory AIDS Councils and efforts by national community HIV organisations and policy and programmatic responses to HIV/AIDS at the global governments to end HIV. level, particularly in the Asia-Pacific region.

While these are all good efforts, there are some significant threats to maintaining low HIV rates AFAO’s aims are to: in Aboriginal and Torres Strait Islander communities, including: very high rates of sexually n Advocate on behalf of its members at the federal level, thereby transmissible infections (STIs) in many Aboriginal and Torres Strait Islander communities; an ever providing the HIV community with a national voice; impending threat that HIV will rapidly escalate in our populations who inject drugs; and the threat n Stop the transmission of HIV by educating the community about that HIV will make its way from Papua New Guinea and other neighbouring countries into our HIV/AIDS, especially those whose behaviour may place them at communities. high risk; n Assist its members to provide material, emotional and social This edition gives us an opportunity to take stock of what is occurring across the country and support to people living with HIV; reflect on where we’ve been and where we need to go to in the future to prevent HIV from being n Develop and formulate policy on HIV issues; just another health condition in our communities. What we require is a way to track our progress, n Collect and disseminate information for its members; to challenge ourselves, to mobilise our communities and for us all to be motivated about our n Represent its members at national and international forums; and own roles in this story. n Promote medical, scientific and social research into HIV and We hope this special issue of HIV Australia motivates you to play your part in preventing HIV its effects. from taking hold in our communities. Finally, in closing, this edition would have not been possible AFAO Board without the exceptional efforts of Linda and Finn at AFAO for bringing this all together. Enjoy the President Bridget Haire Vice President Simon Ruth read and keep up the great work! Secretary Joanne Leamy Treasurer Andrew Burry Sincerely, James Ward and Michael Costello-Czok Ordinary Member Kim Gates Staff Representative Finn O’Keefe AIVL Chris Gough Anwernekenhe National HIV Alliance Neville James Ward is an Indigenous Michael Costello-Czok has Fazulla NAPWHA David Menadue Scarlet Alliance Mish Pony health researcher with more than over 20 years’ experience In recognising the fundamental importance of information and 17 years’ experience. He is a working in the community education in working against the HIV/AIDS epidemic, all material in descendent of the Pitjantjatjara response to HIV. He is Central this publication may be reproduced for non-commercial use, personal and Nurrunga clans of central Arrernte of the Arrernte Nation. research or educational purposes free of charge, provided the following and South Australia. citation is made: “Reprinted from Volume 13, No. 3 of HIV Australia, published by the Australian Federation of AIDS Organisations”. Copyright of all images remains with the individual artists.

Requests for permission to reproduce any written material in this publication for commercial purposes should be made to AFAO directly.

AFAO is a member of Copyright Agency Limited (CAL). If you have been engaged by AFAO as a contributor to one of our publications in the past and are a member of CAL, we may be holding CAL funds in trust for you. If you think this may be the case, please contact AFAO directly ([email protected]). Volume 13, No. 3 (December 2015)

U And Me Can Stop HIV: Aboriginal and Torres 4 Strengthening community capacity to 41 Strait Islander HIV Awareness Week 2015 maintain low levels of HIV among Aboriginal By James Ward gay men and other men who have sex with men (MSM), sistergirls and brotherboys in Remembering, Recognising and Responding: 6 South Australia 21 years of the Anwernekenhe Aboriginal and By Wills Logue Torres Strait Islander response to HIV By Michael Costello-Czok and Neville Fazulla ‘This Way in the Right Direction’: Itha Mari – 44 The Aboriginal Health and Healing Group The road travelled and the road ahead: 14 at the Kirketon Road Centre Anwernekenhe 6 keynote address By Christine Kerr and Rosie Gilliver By James Ward The Connection: a strong and active voice 47 Aboriginal Nations Torres Strait Islander 18 for the health of Aboriginal and Torres Strait HIV Youth Mob (ANTHYM) Islander young people who use illicit and By James Saunders injecting drugs HIV and sexually transmissible infections 19 By Canberra Alliance for Harm Minimisation among Aboriginal and Torres Strait Islander and Advocacy (CAHMA) people: summary of the latest surveillance data Reconciliation and responding to HIV in 49 By Marlene Kong and James Ward remote Western Australia Health promotion retrospective 23 By Lisa Tomney and Andrew Burry Responding to HIV among Aboriginal and 28 Increasing visibility and participation of 51 Torres Strait Islander people in the Indigenous peoples at AIDS 2014 and creating Northern Territory a cultural legacy beyond the conference By David Aanundsen By Michael Costello-Czok Ngalawi Djardi (‘Sit and Yarn’): strengthening 31 HIV Free Generation: AH&MRC Street 56 connections and sharing knowledge – the Art Project history of ACON’s health retreat for Aboriginal By Sallie Cairnduff, Darren Braun and Kaylie Harrison people Living with HIV International Feature Indian Blood: 60 ACON Aboriginal Project team HIV and Colonial Trauma in San Francisco’s The last weekend in October: my Ngalawi 33 Two-Spirit Community Djardi By Andrew Jolivette By Stephen Morgan Health promotion update 64 2Spirits: providing a multi-generational, 34 By Ben Wilcock culturally competent approach to health BOOK REVIEW Colouring the Rainbow – 65 promotion for Aboriginal and Torres Strait Blak Queer and Trans Perspectives: Life Stories Islander communities and Essays by First Nations People of Australia. By Brett Mooney and Phillip Sariago Edited by Dino Hodge. Improving treatment outcomes for 36 Reviewed by Gregory Phillips HIV-positive Aboriginal and Torres Strait Treatment brief 66 Islander people at Cairns Sexual Health using the treatment cascade as a model 21 years: renewing the call for government 67 By Morgan Dempsey, Mary Elliott, Carla Gorton, action on HIV and Aboriginal and Torres Strait Joanne Leamy, Sara Yeganeh and Karly Scott Islander communities By Linda Forbes It’s all about relationships: a story from the 39 frontline about the ups and downs of managing HIV Australia welcomes submissions from interested authors. HIV in remote Australia To submit an article or report for consideration, email [email protected] By Marisa Gilles

HIV Australia, Volume 13, No. 3 | 3 U And Me Can Stop HIV: Aboriginal and Torres Strait Islander HIV Awareness Week 2015

By James Ward

n Aboriginal and Torres Strait Islander In the five year period 2010–2014, when for urban and regional areas – HIV Awareness Week (ATSIHAW) is comparing rates of new HIV infection hepatitis C and chlamydia n an annual program of events that seeks among the Aboriginal and Torres Strait emerging HIV transmission risks from to raise awareness about the impact of Islander population with the non- drugs such as methamphetamines HIV among Aboriginal and Torres Strait Indigenous Australian born population, (‘ice’) – both due to unsafe injecting Islander people. Although the inaugural a higher proportion of notifications were and condomless sex. event was only held twelve months ago, attributed to injecting drug use (16% vs During ATSIHAW, community events it is already well recognised as key event 3%); heterosexual sex (20% vs 13%); and were held across Australia at over 30 for raising awareness and mobilising 22% vs 5% of new HIV diagnoses were Aboriginal Community Controlled Health action to address HIV among Aboriginal among females. Services in most jurisdictions and at other and Torres Strait Islander communities. Based on CD4+ cell counts at diagnosis, HIV organisations such as AIDS Councils, This year, after much preparation, the in 2014 a third (30%) of the new HIV aimed at raising awareness of HIV in our 2015 ATSIHAW program is a bigger diagnoses among the Aboriginal and communities. Our Facebook page (https:// affair than 2014, with numerous events Torres Strait Islander population were www.facebook.com/ATSIHAW) lists all organised nationally. This is vital, as determined to be late. the events and happenings for Aboriginal ATSIHAW 2015 occurs at a time when and Torres Strait Islander HIV Awareness raising awareness about HIV among our ATSIHAW events Week 2015. communities is more important than ever. The 2015 ATSIHAW was launched at ATSIHAW also recruited high profile HIV diagnoses among the Aboriginal Wuchopperen Aboriginal Health Service Ambassadors to help spread the word about and Torres Strait Islander population is in Cairns on the 30 November. Speakers HIV in our communities and the roles all increasing, yet for many years now there has included Assoc Professor James Ward, individuals can play in stopping HIV. Our been little or no investment by governments SAHMRI (South Australian Health ATSIHAW Ambassadors include Prof targeted at enhancing our communities’ and Medical Research Institute), Dr Pat Anderson am, Prof Kerry Arabena, knowledge and awareness of HIV. While Mark Wenitong, Apunipima Cape York Dr Marlene Kong, and Mr Dion Tatow, the number of annual HIV diagnoses for Aboriginal Health Council, HIV-positive Aboriginal and Torres Strait Islander people speakers, and youth and elders from the to name a few. Profiles of some of our is fairly low at present (around 30 new Cairns region and community. ATSIHAW Ambassadors accompany this article. diagnoses per year), in 2014 the notification The launch was followed by a training day rate of newly diagnosed HIV infection was on Tuesday the 1 December for health SAHMRI is hosting a national exhibition 1.6 times higher for the Aboriginal and service staff working in the Cairns region, of artworks by Aboriginal and Torres Torres Strait Islander population compared to learn about updates on HIV diagnosis, Strait artists from all of Australia’s states to the non Indigenous population (5.9 vs risk factors, prevention strategies, treatment and territories and the Torres Strait 3.7 per 100,000 in 2014). updates, care and management of people Islands. The HANDPRINTS exhibition The potential exists for HIV to escalate living with HIV and outbreak management tells stories of how HIV can affect our rapidly in the Aboriginal and Torres – including privacy confidentiality stigma peoples, our families and our communities. Strait Islander population – as has been and discrimination. This exhibition is about our Dreaming – our creation, our land, our people, our the experience in other Indigenous On 2–3 December, ATSIHAW, in totems, our past and future. populations globally. This potential is due partnership with the HIV Foundation to three main issues: You can read more about the planning, n Queensland, ASHM (Australasian Society very high rates of other sexually for HIV, Viral Hepatitis and Sexual rationale and success of some of the transmissible infections (STIs) exist in Health Medicine) and the National ATSIHAW events throughout the pages many communities, and the presence Aboriginal Community Controlled Health of this edition of HIV Australia, as well as of these increases the chances that Organisation, hosted a high level summit discussion about key programs and research HIV can be transmitted in Brisbane to discuss strategies and projects being led by Aboriginal and Torres n increasing rates of injecting drug actions for moving forward an agenda that Strait Islander people around the country, use – including increasing rates is urgently required. The Summit, opened to stop the spread of HIV and STIs. of methamphetamine (ice) use in by the Queensland Health Minister, the Aboriginal communities, and Hon Cameron Dick MP, was held in n the close proximity of Papua New recognition of the need to urgently address Guinea (PNG) to the Torres Strait the fact that STIs and blood borne viruses Associate Professor James Ward is Islands, and the mobility and are part of our communities’ overwhelming Head, Infectious Diseases Research interaction of PNG nationals and burden of disease, particularly: Aboriginal and Torres Strait Islander n Torres Strait Islanders. PNG has the for remote communities – STIs Health at South Australian Health and highest recorded rates of HIV in the (chlamydia, gonorrhoea, syphilis and Medical Research Institute (SAHMRI) Asia-Pacific region. trichomonas), as well as hepatitis B and a guest editor of HIV Australia. 4 | HIV Australia, Volume 13, No. 3 ATSIHAW Ambassador ATSIHAW Ambassador

Marlene Kong, Program Head Dion Tatow – Aboriginal and Torres Strait Dion is Aboriginal (Iman and Islander Health Program, Kirby Wadja) and South Sea Islander Institute, University of NSW (Ambrym Island, Vanuatu). Dion ‘As a Worimi woman, I am is currently the Senior Policy passionate about improving the Officer – Mental Health with health of Australian Aboriginal the Queensland Aboriginal and ATSIHAW National Ambassador and Torres Strait Islander people. Islander Health Council (QAIHC). It cannot be done without our people involved in every Dion has a Bachelor of Business degree and a Graduate Steven Oliver aspect of health care, from the ground up to the Prime Certificate in Health Service Management. Steven is a descendant of the Minister of Australia, acting in good faith. Australia has Dion has worked in Aboriginal and Torres Strait Islander Kukuyalanji, Waanyi, Gangalidda, a long way to go in bridging the big cultural gap that health for 20 years – for both the Commonwealth (OATSIH) Woppaburra, Bundjalung and continues to exist in our practices today; HIV awareness and state governments (Queensland Health) – and for Biripi peoples. He studied at the and rates among our people being one of the growing and the past nine years at QAIHC. His roles have focused Aboriginal Music Theatre Training persistent health disparities. I call upon the leaders of our on program development, implementation and policy Program in Perth, and was nation – especially those working in HIV medicine – to development and evaluation, with a particular focus on subsequently accepted into the lead by example in addressing this important gap.’ social and emotional well being/mental health and sexual Music Theatre Programme at the West Australian Academy health/blood borne viruses in Aboriginal and Torres Strait of Performing Arts (WAAPA). Islander communities. Upon his return to Queensland, he took on the role of ATSIHAW Ambassador Dion has been involved with Aboriginal and Torres Strait Assistant Artistic Director with the Aboriginal Centre for Islander community-based organisations since the early the Performing Arts in Brisbane. He has worked with Mario Assan, Senior Public 1980s as an elected committee member. Health Officer – Indigenous companies such as Yirra Yaakin Noongar Theatre, Kooemba ‘Increasing rates of HIV infection amongst our population Sexual Health, Thursday Island Jdarra Theatre, La Boite Theatre, Jute Theatre, Kite Theatre are concerning. We all need to increase our knowledge of Primary Health Care Centre and the Queensland Arts Council. HIV, protect ourselves against HIV infection and support His musical, Black Queen Black King, was shown as part ‘My name is Mario Assan, I am a those members of our communities living with HIV.’ of Queensland Theatre Company’s Creative Development Torres Strait Islander with family Series and his play, Proper Solid, produced by Jute Theatre connections to Badu Island. in 2014, will tour Queensland in 2016. He is also a HIV prevention is important, writer, poet, actor and associate producer for ABC’s Logie particularly in Indigenous communities, to ensure the ATSIHAW Ambassador nominated sketch show Black Comedy. future of our communities is healthy and prosperous. ‘I’m doing this because I want to help fight and breakdown People living with HIV should be supported, loved and Arone Meeks the stigma associated with HIV and those living with it.’ accepted by our communities so that they feel that they Arone Meeks is a Kuku Midigi are still part of our community. Discrimination should not man, currently residing in Cairns. be tolerated by anyone; we are all one people, regardless He grew up near El Arish, in far ATSIHAW Ambassador of race, religion or sexuality. north Queensland, although It is important for the conversation about HIV and sexual his country is the area around Ms Pat Anderson, ao health to be regularly highlighted on an everyday basis. Laura, Cape York. He completed a Bachelor of Visual Arts at the Pat is an Alyawarre woman known HIV awareness should be discussed every day – not only City Art Institute in Sydney in 1984 and has forged an nationally and internationally as a on World AIDS Day. Highlighting good news stories in our impressive national and international career since. powerful advocate for Aboriginal communities is an important way to promote the fact and Torres Strait Islander people. that people can live healthy lives if they access treatment A former member of the Boomalli urban Aboriginal artist’s She has extensive experience in quickly and live normal lives with adequate support and co-operative, he won an Australia Council fellowship to Aboriginal health and advocacy medication.’ study in Paris in 1989 and went on to exhibit throughout and currently serves as the Europe and North and South America. His work appears in Chairperson of the Lowitja Institute. In 2014, Ms Anderson many national and international collections, both public was appointed Officer of the Order of Australia for ATSIHAW Ambassador and private. In Australia, he is represented in many public distinguished service to Australia’s First Peoples. collections, including the National Gallery of Australia and the Queensland Art Gallery. His pieces are also represented ‘In the mid-1990s, I was part of the campaign to establish Bobby Maher internationally in collections in Canada, the United States, the national Aboriginal and Torres Strait Islander HIV/ Bobby is a Yamatji woman with France and Japan. AIDS strategy. A lot has changed in the past 10 years, ancestral ties to the Pilbara so get tested if you are worried because there are great and Kimberley, born and raised ‘HIV is everybody’s business. Let’s not make it part of our treatments available. Let’s keep on talking about HIV, stay on Njaki Njaki country in the story – have an STI test.’ safe and look after each other.’ South West of Western Australia (WA). Bobby is passionate about promoting positive health ATSIHAW Ambassador messages in sexual health and respectful relationships ATSIHAW Ambassador through a human rights lens. Bobby is currently working Amanda Sibasado for Sexual and Reproductive Health WA as an Educator/ Professor Kerry Arabena Amanda is a 28 year old Bard Project Officer with the Pilbara Project. Prof Arabena is a Torres Strait and Wardandi woman. She is ‘It is important for our mob and all communities to have Islander woman and current Chair passionate about holistic sexual positive and clear messaging about HIV. If HIV gets into for Indigenous Health and Head of health for our mob. She believes our communities it might be a real disaster for families. the Indigenous Health Equity Unit everyone has the right to safe, Understanding about preventing and managing HIV is at the University of Melbourne. consensual, pleasurable sexual really important. HIV is not a death sentence now. With ‘We all need to do our bit to experiences. She is currently the good care, people with HIV can live a full and healthy life. prevent HIV from escalating in Sexual Health Coordinator at Kimberley Aboriginal Medical Barriers such as discrimination and stigma can attack our communities. I know we have been talking about it Services. people’s self-esteem and prevents them from accessing for a long time, but now more than ever we need to look ‘HIV is a preventable disease. Let’s keep our communities health services. We need all our communities and services after ourselves and each other. We can do this by getting safe – use condoms and get tested for HIV regularly.’ to understand this and to be the best that they can.’ tested.’

HIV Australia, Volume 13, No. 3 | 5 Remembering, Recognising and Responding: 21 years of the Anwernekenhe Aboriginal and Torres Strait Islander response to HIV

By Michael Costello-Czok and Neville Fazulla

Introduction response to HIV: ‘Us mob stronger June 1994, a National Steering Committee together, working to stop HIV for our was established to guide and oversee ‘We recognise HIV/AIDS as a major health people and our country’.2 conference planning. care threat to Aboriginal and Torres Strait Advocacy and activism – the Islander people. We also recognise and Anwernekenhe 1: 31 October – early years acknowledge Aboriginal and Torres Strait 4 November 1994 Islander Australians are dying alone and In the early days of the HIV response in in shame of AIDS. This must stop’.1 Unlike recent Anwernekenhe conferences, Australia, many Aboriginal and Torres held in city conference centres with all the This statement, made in 1994 by Aboriginal Strait Islander gay men and sistergirls trappings, Anwernekenhe 1 took place in and Torres Strait Islander gay men and considered themselves to be invisible as the open air at Hamilton Downs, Alice sistergirls attending Anwernekenhe 1 – a priority group. Misconceptions about Springs. (See p.13 for excerpts from Neville First National Aboriginal and Torres Strait homosexuality in Aboriginal and Torres Fazulla’s beautiful evocation of that first Islander Gay Men and Transgender Sexual Strait Islander culture, compounded with conference.) Health Conference, mobilised a community limited understanding of HIV risk factors response to HIV and set the foundations of and infection, resulted in discrimination Conference deliberations initially focused the Anwernekenhe movement. and isolation. on HIV and sexual health; however, as the conference progressed the agenda expanded The Anwernekenhe 1 gathering, held at Community concern about the impact of to include broader health issues such as Hamilton Downs on Arrernte Country, just HIV/AIDS among the Aboriginal gay mental health, alcohol and substance abuse, outside of Alice Springs, took place over population in the early 1980s saw a support sexual abuse, adoption and fostering issues, four days from October 31 to November network established by a group of openly and the needs of transgender people. 4, 1994. The conference brought together gay Aboriginal men that included Rodney 73 participants from across Australia who Junga-Williams, Malcolm Cole, Mathew Conference participants together together formulated 45 recommendations Cook, Luke Close and John Cross. In 1992, developed a set of recommendations (refined down from over 100 the First National Aboriginal HIV/AIDS that were presented to a representative recommendations from participants), as an Conference was held. This conference of the Australian Federation of AIDS urgent call to action. At the completion of identified an urgent need to better Organisations (AFAO) on the last day of the conference, Arrernte Elders named the understand and respond to the HIV/AIDS the conference. A further key outcome of meeting Anwernekenhe, which translates as issues for gay men and sistergirls. Anwernekenhe 1 was the establishment ‘Us Mob’ in Arrernte language. of the National Aboriginal and Torres In April 1994, following a meeting of Strait Islander Gay Men’s and Transgender Anwernekenhe 1 is now recognised as national HIV/AIDS educators in Sydney, Working Party, which was given the a key milestone in the Aboriginal and John Cross, who was working as the Gay responsibility of progressing Anwernekenhe Torres Strait Islander led-response to HIV. Men’s Peer Educator at Central Australian 1 conference recommendations. There have now been six Anwernekenhe Aboriginal Congress (Alice Springs), conferences, and to mark 21 years since the with assistance from Phil Walcott from Recognising the devastating impact of HIV inaugural 1994 meeting, Anwernekenhe the AIDS Council of Central Australia, among the gay and sistergirl community, 6 – held in November 2015 – saw the collaborated to prepare a successful funding and the need to formulate actions to conference return to its original location submission to the Commonwealth to safeguard the community’s future was the in Alice Springs. Twenty-one years on, develop a national conference specifically impetus for Anwernekenhe 1, and the the key recommendations from the 1994 addressing the impact of HIV in the conference evaluation report noted that the conference still enshrine the core objectives Aboriginal and Torres Strait Islander gay conference process had built ‘ a clear sense 4 of the Aboriginal and Torres Strait Islander and sistergirl community.3 Shortly after, in of belonging and dedication to process’ . Participants prioritised further exploration and commitment to developing strategies for dealing with education, prevention, At the completion of the conference [Anwernekenhe 1], care and support for Aboriginal and Torres Arrernte Elders named the meeting Anwernekenhe, which Strait Islander communities and HIV. The Anwernekenhe movement – an translates as ‘Us Mob’ in Arrernte language. Aboriginal and Torres Strait Islander

6 | HIV Australia, Volume 13, No. 3 First National ANWERNEKENHE II Aboriginal & Torres Strait Islander ANWERNEKENHE III Third National indigenous Gay, Sistergirl and Transgender Gay men & Transgender Report of the HIV/AIDS and Sexual Health Conference Second National Indigenous Australian Sexual Health Conference Gay Men And Transgender Peoples Conference

ANWERNEKENHE

ANWERNEKENHE Cedar Creek Lodge, Thunderbird Park,

Tambourine Mountain, Queensland, Strengthening Communities Through July 7 - 10, 1998. Prevention – Peer Education & Partnerships Hamilton Downs Melbourne, Victoria May 15 – 17, 2002 Northern Territory, Australia Australian Federation of AIDS Organisations October 31 - November 4, 1994 E

Anwernekenhe 1 (1994) conference report; front cover Anwernekenhe 2 (1998) conference report; front cover Anwernekenhe 3 (2002) conference report; front cover art by Rex Murray. art by Rex Murray. art: Us Mob by Arone Meeks. community movement established to effect by conference delegates at Anwernekenhe Anwernekenhe 3: May 2002 change in the Australian HIV response – 2 in July 1998. AFAO’s National President, By Anwernekenhe 3, in 2002, the AFAO had begun. Conference participants united Peter Grogan, and Colin Ross (in his National Aboriginal and Torres Strait in creating a model of self-determination capacity as Convenor of the AFAO Islander Gay Men’s and Transgender for Aboriginal and Torres Strait Islander Indigenous Gay and Transgender Steering Steering Committee had become known Committee), emphasised the significance of people affected by HIV. as the AFAO National Indigenous the report and strategy, saying: ‘We at last By 1996, the National Aboriginal and Strategic Alliance (ISA). An independent have documentation of the reality of HIV Torres Strait Islander Gay Men’s and review of the AFAO National Aboriginal for Indigenous gay men and transgender Transgender Working Party (now a and Torres Strait Islander Project and persons that will shape AFAO’s ongoing steering committee) was actively operating Steering Committee, completed in 2001, response’ 5. The strategy provided a strong as part of the Australian Federation of had suggested an expansion of work was foundation for both AFAO and AIDS AIDs Organisations (AFAO) advisory needed. A ‘whole of community’ approach Council program and policy responses structure. Later that year, AFAO received was agreed to, allowing for other Aboriginal for well over a decade, and paved the Commonwealth funding to establish and Torres Strait Islander ‘at risk’ groups way for effective involvement of gay and the AFAO National Aboriginal and and increasing work being undertaken by sistergirl representation on national Torres Strait Islander Gay Men’s and AIDS Councils. and state government and community Transgender Sexual Health Project, advisory structures. Anwernekenhe 3 highlighted some worrying which was commissioned to progress the emerging trends among Aboriginal and The strategy and recommendations Anwernekenhe 1 recommendations. Torres Strait Islander communities such as resulting from Anwernekenhe 2 also The project commenced in early 1997, injecting drug use and the first identified laid groundwork for the staging of the with the employment of Gary Lee as the cases of HIV seroconversion in women. First National Indigenous Sistergirl project coordinator. Between early 1997 and In considering how best to address these Forum on Magnetic Island in 1999. June 1998, the project conducted national issues, the ISA commenced a national The forum provided a much needed organisational consultation process to consultations with the Aboriginal and space for sistergirls to come together canvass the idea of expanding its work. Torres Strait Islander gay and transgender and develop HIV and sexual health community, including consultations strategies addressing isolation, violence, The basis for this approach stemmed from 6 with AIDS Councils and Aboriginal low levels of HIV awareness and self- the ISA’s belief that : n Community Controlled Health Services. esteem. Significant actions from this there were clear policy and service Outcomes and corresponding strategic event saw Aboriginal identified positions overlaps between what was needed for responses were then published as part of the created in AIDS Councils, sistergirl gay men and sistergirls and what was National Indigenous Gay and Transgender sexual health retreats, first time inclusion needed for other Aboriginal and Torres Project Consultation Report and Sexual of sistergirl terminology in the Second Strait Islander communities n Health Strategy. National Aboriginal and Torres Strait the ISA had built expertise through its work with gay men and sistergirls Anwernekenhe 2: July 1998 Islander Sexual Health Strategy, and implementation of the very successful and this could be used to benefit other The Consultation Report and Sexual AFAO campaign Sistergirls Say – Keep members of Aboriginal and Torres Health Strategy was ratified and endorsed Yourself Covered. Strait Islander communities

HIV Australia, Volume 13, No. 3 | 7 n the ISA had already extended beyond gay men and sistergirls. Two previous projects included a treatments booklet for all Aboriginal and Torres Strait Islander people with living HIV and a project researching injecting drug use among Aboriginal and Torres Strait Islander communities n the ISA’s links with AFAO and the different parts of the national HIV response meant they were well positioned to offer good representation to all Aboriginal and Torres Strait Islander people affected by HIV. The ISA already had a place at the table in many important parts of the mainstream national HIV response, which it could use to advocate for all Aboriginal and Torres Strait Islander Anwernekenhe 4 (2006) conference report; front cover. Anwernekenhe 5 (2011) conference report; front cover communities affected by HIV. art: Voyage by Arone Meeks. The ensuing national consultation process provided strong support for the proposed organisational member of AFAO, and ATA, allowing employment of the ANA changes. Discussions with the National secured a place on the AFAO Board Executive Officer. Aboriginal Community Controlled Health alongside to other national HIV peaks. Organisation (NACCHO) emphasised In April 2013, the ANA then received considerations around maintaining an HIV The first Anwernekenhe conference further exciting news that the ANA would focus. At Anwernekenhe 4, held in April had set many goals, and many had been receive a three year contract through the 2006, two strategic ideas were presented achieved over the years. But to finally have Commonwealth Department of Health. to participants for consultation and a strong, independent and incorporated The contract and funding have allowed consideration. Aboriginal and Torres Strait Islander voice the ANA to consolidate implementation on HIV was a great outcome — it was of the strategic plan and development of The first was to expand work beyond gay the realisation of a dream first described at Anwernekenhe 6. men and sistergirls and to respond to the Anwernekenhe 1. needs of other Aboriginal and Torres Strait Anwernekenhe 6: November 2015 Islander people who find themselves at risk Under no illusions, we recognised that of HIV. This included: much of the hard work was still to come. With the sun setting and in view of n Yeperenye, Ntyarlke and Utnerrengatye7 women and young people In 2006, the Department of Health n Arrernte Elders and Custodians people who inject drugs and Ageing’s Office of Aboriginal and n Torres Strait Islander Health (OATSIH), welcomed just over 100 people to country people who engage in sex work or sex changed funding to a tender process, in Alice Springs, for Anwernekenhe 6. for favours n resulting in a shift of the funds. From After the welcoming, Neville Fazulla, people in custodial settings, and n that point AFAO then directly funded Chair of the ANA and Anwernekenhe 1 mobile/transient populations. the AFAO Aboriginal and Torres Strait participant delivered the conference chair’s The second proposal was to establish an Islander project and the ANA. address: ‘Remembering Our Journey’. independent Aboriginal and Torres Strait At the end of 2010, with limited funding The conference program commenced Islander-controlled organisation solely 8 opportunities, the ANA faced the real with a screening of video footage focused on building and maintaining a possibility of winding up the organisation. filmed at the inaugural Anwernekenhe comprehensive and effective response to The ANA Board in partnership with 1 conference. The video stirred up strong HIV among Aboriginal and Torres Strait AFAO management initiated discussions emotions among the Anwernekenhe 6 Islander communities. with the AIDS Trust of Australia (ATA), participants. The screening allowed us Anwernekenhe 4: April 2006 successfully securing a grant to implement the space to remember those who were not present and to reflect on the work Anwernekenhe 4 deliberations endorsed Anwernekenhe 5. still to be done. Some people spoke the strategic change. This represented a Anwernekenhe 5: August 2011 about the need to maintain ‘a fire in the major turning point and much hard work Anwernekenhe 5 saw the development belly’ – a sense of unity and drive needed followed to bring this to fruition. of the first ever ANA Strategic Plan, to continue the work begun by the In 2008, we became incorporated as the providing 11 strategic goals to guide the Anwernekenhe 1 pioneers in forming a Anwernekenhe National Aboriginal organisation between 2011 and 2015. Soon strong community voice calling for action and Torres Strait Islander HIV/AIDS after the conference, the ANA also received on HIV among Aboriginal and Torres Alliance. In 2009 we became the twelfth welcome news of a further grant from the Strait Islander communities. 8 | HIV Australia, Volume 13, No. 3 A rapturous standing ovation was given Remembering our journey: Anwernekenhe 6 opening address to Associate Professor James Ward after delivering a passionate Anwernekenhe 6 By Neville Fazulla conference keynote address. In no uncertain terms, James outlined the potential for On Thursday 12 November, Anwernekenhe National HIV Alliance further increases in HIV diagnoses among (ANA) Chair, Neville Fazulla, officially opened the Anwernekenhe 6 conference in Alice Springs. Aboriginal and Torres Strait Islander people and the appalling rates of sexually In his address, Neville shared his recollections of the formation of the Anwernekenhe movement and paid tribute to the founders transmissible infections (STIs). His keynote and pioneers of Anwernekenhe 1, some of whom were present address was a mix of hard data and emotion, for the sixth conference, which marked Anwernekenhe’s 21st and a strong call to the Commonwealth anniversary. to implement the actions set out in the Below are some brief excerpts from Neville’s address, where he National Aboriginal and Torres Strait Islander describes the beginnings and the significance of the inaugural BBV’s and STI’s Strategy 2014–2017. Anwernekenhe event. ‘Back in 1993, there were a group of us that were very aware on James’ speech opened and closed with what was going on in the HIV environment, how that was having poignant tributes to Aboriginal and an impact on the gay and sistergirl community in Australia. What Torres Strait Islander HIV advocates, happened was, there was a conference up in Alice Springs in 1992, which was an Aboriginal sexual health conference. That conference had some members of the Aboriginal, gay, lesbian and sistergirl community attend past and present, with a heartfelt tribute it, but we were in a sense not on the agenda and ostracised. Some of our brothers had travelled overseas and to community members lost to HIV seen what was happening overseas, and programs happening there, and came back and started a discussion. and AIDS. We went to the Commonwealth for funding; John, along with Colin and Rodney1 coordinated that process, and Anwernekenhe 6 conference participants we were successful in getting funding to hold a conference. It was only a small amount of funding, but the spirit of the people who came to the conference proved too powerful to worry about the money. included Aboriginal and Torres Strait Islander peer groups of people living with The first Anwernekenhe conference was held in a creek bed. We’d invited AFAO (who was still based in Canberra at the time) to attend and see what we were doing, and how we could liaise with them. They turned up on the HIV, gay men, sistergirls, brotherboys, Thursday morning, and we were all paying volleyball and sitting around, putting on makeup and doing different sex workers and people who inject things. drugs, alongside approximately 30 sexual Every night we’d have a deadly disco run on a car battery. We got into trouble with the man who was running health workers – all coming together to the homestead because he would turn the lights off at 10 o’clock every night, and we’d get the car battery and discuss, debate and share experiences put all the leads on it and light the whole place up and have a big disco until 2 or 3 o’clock in the morning. about the direct impacts of HIV. Priority There was no drugs, no alcohol, but we let ‘em know we were there. And in that process, we also wrote a Plan issues focused on awareness, prevention, which had 116 recommendations in it. testing, treatments, care and support When the AFAO guys turned up and they could see us all playing around, lying around, doing different things, and stigma and discrimination. Through some of them must’ve thought, ‘Oh … what’ve we walked into?’ When they walked down, we presented them with the pieces of paper – some of them were hand written and some of them were printed out – and we said: these deliberations, participants actively ‘That’s what we want’. They took it away, read it and agreed to it. contributed to the development of the From there, we got the name from the traditional owners around here: Anwernekenhe (‘Us Mob’). We took that ANA’s second Strategic Plan 2015–2019, name; we cherished that name, and we moved forward. From there, we’ve grown to what we’ve are today. We’ve setting out a series of priority actions. had eight Chairs. We’ve moved from a project at AFAO to an incorporated organisation that makes our own The conference closed with presentations decisions. When we left Hamilton Downs we were the National Aboriginal and Torres Strait Islander Gay and Sistergirl Forum. We’re now the Anwernekenhe National HIV Alliance. encapsulating the conference theme of remembering, recognising and responding. About three months after we left Hamilton Downs with all these Recommendations, we began working with AFAO and we went to the Commonwealth. Our role was the first working party on the first National Aboriginal Elders Aunty Matilda House and Aunty and Torres Strait Islander HIV Strategy. We’re now at the fourth – we’ve been involved in and informed every Joan Lamont warmly shared personal and single one. The major thing was we got to write our own strategy, in our own way, to address the issues in our collective stories, remembering loved ones, community. It was ours. We informed the process and we did it. and historical and cultural events. We’ve moved along quite rapidly. In some senses it’s been a long time – 21 years – but we’ve never lost the vision. We’ve changed the way we’ve looked. … we’ve had to move our boundaries and exteriors to suit what AFAO Policy and Communications the national environment is, but we’ve never lost the fact that we’re here. It’s about us as a community, and it Manager Linda Forbes gave a strong always will be. speech on the enduring partnership that We’ve built capacity for positive people to have a voice at the national level, which is called PATSIN (Positive has existed between AFAO and the ANA Aboriginal and Torres Strait islander Network). We’ve got the sistergirl movement and forum; we brought in the since Anwernekenhe 1 (see page 63). injecting drug user community, the sex worker community, and men who have sex with men. And we’ve taken Neville Fazulla acknowledged the hard on all those groups within our community and supported them until they can have a voice in their community and dedicated work of Aboriginal and on their own. Anwernekenhe isn’t just about gay men, it’s about the community response to HIV. Torres Strait Islander sexual health and We showed that we can take the lead and do it in a constructive, community driven way. The work we do isn’t community peer workers, noting that the just imagined in an office block, it’s actually informed by the community. So applaud yourself everybody. important impact their work has had on (And much applause there was indeed.) the health and wellbeing of Aboriginal and Reference Torres Strait Islander people. 1 John Cross, Colin Ross and Rodney Junga-Williams. Fittingly, the final conference presentation came from youth representative, Caleb Listen to Neville’s full speech online at: bit.ly/nf-a6 Nichols-Mansell. Caleb delivered a HIV Australia, Volume 13, No. 3 | 9 ANTHYM’s Caleb Nichols-Mansell delivered the closing Bev Greet receiving the 2015 Rodney Junga-Williams Gary Lee, recipient of the 2015 John Cross Memorial statement at Anwernekenhe 6. Photo: Stephen Morgan. Memorial Award, presented by Joan Lamont (Rodney’s Award. mother). statement on behalf of ANTHYM (the completed it was time for the conference The 2015 John Cross Memorial Award was Aboriginal Nations Torres Strait Islands closing social event, featuring several well- presented to Gary Lee. John Cross died in HIV Youth Mob), looking to the future known drag personalities in attendance. April 1995 aged 32. His vision and energy and advocating for increased inclusion Conference goers and many Alice Springs were instrumental in the development of and representation of youth in responding locals were entertained with a jam packed Anwernekenhe 1, a long held dream he to HIV: drag show extravaganza. Hosted by Miss shared with fellow advocates. ‘In opening, I would like to acknowledge Ruby Royal Reserve, the night seemed to those elders and seniors who have paved just slip away with numbers from Destiny References the way and thank them for their tireless Haz Arrived, Deena Deadly, Townsville 1 Participants statement in Anwernekenhe 1 work in this sphere. Tracey and Queen of the Nullarbor. Music conference report. Anwernekenhe. (1994). by DJ Corey (who also doubled as the Anwernekenhe First National Aboriginal and So where to from here? Mentorship is Torres Strait Islander Gay men and Transgender needed from Elders and seniors to empower Conference Coordinator) ensured a fun and Sexual Health Conference. Anwernekenhe, us youth, so that we can carry on the legacy energetic night was had by all. 9. Retrieved from: https://www.afao.org. au/__data/assets/pdf_file/0003/4656/Indig_ and work that has been done by those The closing social event included the ANA anwernekenhe1.pdf before us. Ensuring those who have already acknowledgment awards in recognition 2 Vision statement of the Anwernekenhe National paved the way feel confident in us youth of work and commitment to Aboriginal HIV Alliance (ANA). For further information see: www.ana.org.au carrying on this movement into the future. and Torres Strait Islander communities 3 Anwernekenhe. (1994). op. cit. Our communities need youth to be and HIV. With Anwernekenhe 6 marking 4 ibid. included in the discussion around key issues 21 years, special recognition awards were 5 Lee, G. (1988). The National Indigenous in policy that affect us youth. This includes presented to all past Chairs of the previous Gay and Transgender Consultation Report and Sexual Health Strategy. AFAO, Sydney. and present ANA committees and Board. all peer groups from LGBTI, sistergirls Retrieved from: https://www.afao.org.au/__ and brotherboys, to injecting drug users The ANA Chairs over the past 21 years data/assets/pdf_file/0016/4660/Indig_report. and those people that are living with HIV. included: Colin Ross; Robert (Vanessa) pdf Smith; Gary Lee; Mark Saunders; Dion 6 Indigenous Strategic Alliance (ISA), AFAO. It’s important we’re involved in these (2003). ISA and AFAO Strategic Directions Tatow; Michael Costello-Czok; Michelle discussions and decision making, so that all Consultation Paper. ISA, AFAO, Sydney. of us in the community – including Elders Tobin; and current Chair, Neville Fazulla. 7 Yeperenye, Ntyarlke and Utnerrengatye are – understand the issues we face. We need referred to as the giant caterpillars, the creative Two inaugural memorial awards were ancestors of Mparntwe (Alice Springs) and the to work together to formulate effective established and will be awarded bi- Arrernte peoples. strategies in prevention and awareness to annually, the Rodney Junga-Williams 8 A film made by Hedimo Santana in 1994. cover emerging issues for our communities. Memorial Award and the John Cross Anwernekenhe 1. (1994). In closing I’d just like to say, us youth need Memorial Award. to learn from our Elders just as much as The 2015 Rodney Junga-Williams they need to learn from us. We’re ready Memorial Award was presented to Bev and waiting – we are the present and we Greet. Rodney died in 2011, having are the future.’ dedicated many years to the fight for ANA social event and community addressing treatment, care and support Michael Costello-Czok is Executive Officer of the Anwernekenhe National awards issues for Aboriginal and Torres Strait Islander people living With HIV, HIV Alliance (ANA) and a guest editor of Following the tradition of every other through leadership and both national and HIV Australia. Neville Fazulla is Chair of Anwernekenhe conference, with business international activism. the ANA.

10 | HIV Australia, Volume 13, No. 3 Anwernekenhe 6 – a brief summary of recommendations

Anwernekenhe 6 served as an opportunity proper protocols, collaboration between services, identity in the work of the ANA, a sistergirl/ to celebrate 21 years of Anwernekenhe peer education, printed resources, community brotherboy retreat or conference, a poster campaign events. The conference managed to be both television, the adaptation of AIDS Council programs engaging Elders, and strategic lobbying targeting reflective (acknowledging past contributions (where appropriate), and improved social and clinicians, government and other organisations to and achievements to date) and forward-looking. emotional wellbeing. achieve education, policy and political goals. Generational change was a key conference The session called for proactive prevention The conference also supported a recommendation theme. strategies, better access to rapid HIV testing and from the floor proposing that mainstream LGBTIQ Participants commenced the conference with more consistency of servicing across communities. (lesbian, gay bisexual, transgender, intersex, yarning circles, and the final workshop session It recommended strategies to enhance testing queer) organisations take on more responsibility for involved three separate group discussions – for (normalising testing, offering incentives to combatting racism. women, men, and sistergirls and brotherboys. test, developing resources that use appropriate An important statement on behalf of youth Each of these groups put recommendations to the language, improving inter-service collaboration, participants indicated the preparedness of youth conference and there was broad support for their training for clinicians and incorporation of testing to take up the fight, while also seeking inclusion, propositions. into annual health checks). support and mentoring from Elders, and more The women’s session recommended that the The men’s session recommended a range of ways opportunities for mutual learning. Aboriginal and Torres Strait Islander community to better link with and engage people living with A number of recommendations emerged from the response to HIV include a stronger focus on women, HIV, including through targeted advocacy, use of yarning circles, including from the women’s yarning with this focus reflected in the development of the ANA website, and promotion of ANA through circle, the gay/men who have sex with men yarning resources (including online information) and health Aboriginal Community Controlled Health Services. circle and the people living with HIV (PLHIV) yarning campaigns specific to women. The session argued It also suggested strategies for engaging young circle. The PLHIV yarning circle recommended for improved access to HIV testing via community- Aboriginal men, including involvement of youth in enhanced HIV education and testing for Aboriginal based and culturally appropriate services, and program development and implementation, training and Torres Strait Islander people in rural and remote for greater participation by youth in all levels of and career opportunities for male health workers, communities, training for prescribers of ART and the community response, including through youth support for peer workers and engagement of youth national uniform access to free HIV medications, participation in the ANA Board. in the ANA Board. with no gap payments required in any jurisdiction. The men’s session recommended strategies for The sistergirls and brotherboys session promoting community awareness of HIV – through recommended greater attention to brotherboy

On the cover

Anwernekenhe – ‘Us Mob’, Aunty Gloria Beckett, 2003.

The painting represents the coming together of the Aboriginal and Torres Strait Islander gay men and sistergirls from across Australia, who attended the First National Aboriginal and Torres Strait Islander Gay men and Transgender Sexual Health Conference, held at Hamilton Downs on the 31 October–4 November 1994. The word ‘Anwernekenhe’ (meaning ‘Us Mob’) is a name permitted to be used as the respected traditional name for the conference by the Arrernte people, on whose land the conference was held.

Sadly the artist, Aunty Gloria Beckett, passed away in Brisbane in 2003.

HIV Australia, Volume 13, No. 3 | 11 Photographs from Anwernekenhe 6, Mparntwe (Alice Springs), Arrernte Nation, 12–14 November 2015.

12 | HIV Australia, Volume 13, No. 3 More photos from Anwernekenhe 6 are available in HIV Australia online: bit.ly/ANA6img HIV Australia, Volume 13, No. 3 | 13 The road travelled and the road ahead: Anwernekenhe 6 keynote address

By James Ward

Werte! Let me begin by paying my respects the 1967 Referendum was held, allowing Medicine and science has made some to the traditional owners of country in Aboriginal and Torres Strait Islander people wonderful achievements in HIV. On Mbantua, to their elders both past and to be included in census counts. It was a global scale it’s now thought that by present, to Helen Liddle and your extended clearly a time when Aboriginal people were the year 2020 – five years away – 90% family – thank you for welcoming us all finding our feet after an extended period of all people living with HIV will know here on country. To our other Elders in the of the White Australia policy. It was a time their HIV status; 90% of all people with room, let me pay my respects to you. Alice when much angst existed between our diagnosed HIV infection will receive Springs and its surrounds is a special place two populations, and furthermore, in our sustained antiretroviral therapy (ART); for me, it is where my family’s ancestors extended GLBTI communities, racism and and 90% of all people receiving ART will moved and roamed for thousands of years class were pervasive, and some still see that have viral suppression. This is what’s known before me. not much has changed in this regard. as the ‘90-90-90 strategy’ – what amazing ambitious leadership and what amazing In writing this speech, I have reflected and We were faced with a new disease that was advances in science. However we have to pondered what it means for a community having devastating consequences on the be very mindful that our communities don’t organisation like Anwernekenhe (the people we loved. As a population we were become the 10% that are left behind. ANA) to turn 21.What has been? What still struggling to regain our rightful place will be? The road travelled and the road in Australian society. On the treatment side we have moved ahead. However, allow me to start a little During these early days of HIV in from a single anti-cancer drug AZT in the earlier than Anwernekenhe. I want to begin Australia, much work was put into early days, to the highly active antiretroviral by going back to 1982. preventing HIV among particular treatments available to people living with HIV today, and now with drugs even now October 1982 was the year the first HIV populations – particularly marginalised able to be used to prevent HIV. case was diagnosed in Australia. After groups like sex workers, drug users and much mayhem and scary media on a daily gay men. In recognition of what HIV The drugs in the early days were basis, AIDS was about to get us all, fear could do to these groups it wasn’t long horrendous, the side effects noticeable, before a response was mounted. In 1986, was instilled in us all – especially a dreaded and although AZT was available, it wasn’t led by Dr Alex Wodak, Australia’s first fear instilled in gay men. It’s probably fair easily available and it wasn’t nearly half needle-syringe program (NSP) was to say that Australia and the world was as efficacious as today’s drugs are. I have trialled in Sydney. By testing returned facing a public health issue it had not seen very close friends who were doctors at this syringes, this pilot project found an before. The economy of Australia wasn’t time, who spent copious hours filling in increase in HIV prevalence, suggesting that strong, and much effort was put into paperwork to get medicines prescribed to that HIV was already spreading among thinking how we as a community could patients – not as a right, but on the grounds injecting drug users. In the following address HIV. There was no doubt that HIV of compassion. years, NSPs became policy throughout had caught the world off guard. At this Australia as governments realised the Thankfully, we have moved on. point we were all flying blind. provision of sterile injecting equipment Now it goes without saying, that many 1982 was also a time when black Australia was essential to reducing the spread of of us have lost our friends, our lovers, our was finding its way in an Australia that HIV, in addition to hepatitis B and C. It’s colleagues, our family, and our community had denied our forebears so much since clear now that NSPs have saved thousands members. Australian society is weakened colonisation. It was only 15 years earlier that of Australian lives. without these people here; they were warriors of their time, and if science was as advanced as it is now they would be still here. They were all taken far too young, far … what amazing souls you are, and we are forever grateful too early, and often, in the prime of their – you have so much to share. For you to have seen and lived lives. For those of you who survived that period, what amazing people you are, what the suffering, to have felt the loss, to have feared and faced amazing souls you are, and we are forever grateful – you have so much to share. For your own mortality, what incredible souls you have, what you to have seen and lived the suffering, to have felt the loss, to have feared and faced incredible guardian angels you have looking over you. your own mortality, what incredible souls you have, what incredible guardian angels you have looking over you. 14 | HIV Australia, Volume 13, No. 3 James Ward delivers the Anwernekenhe 6 Keynote address, Alice Springs, 13 November 2015.

The beauty of science has made life for would miss out on the messages seen on not able to be here this week to celebrate. people living with HIV easier too – unlike TV then or not make sense of the Grim And so, here you are today 21 years later at the first decade and a half of HIV in Reaper ad. Anwernekenhe 6, pondering the path ahead Australia, where our fellow brothers and and celebrating the past, which was grim for Our own leadership was strong, if you sisters living with HIV had no way to hide some in those early days, best demonstrated go back to the 1989, when the first ever their condition; you would’ve no doubt by the late Prof Fred Hollows in 1992 National Aboriginal Health Strategy seen it in movies or on your TV screens in when he spoke at the first ever National (NAHS) was launched. The leadership features like Philadelphia, The Ryan White Aboriginal HIV/AIDS Conference here group who wrote NAHS clearly knew Story, or, in our context, Holding the Man. in Alice Springs, and argued that some what effect HIV/AIDS could have in our In those days, people living with HIV were areas of the AIDS campaign were being communities. It outlined strategies for so visibly recognisable by their condition inadequately dealt with at the time. In his Aboriginal Health Workers to be skilled – wasted bodies, the obvious karposis up in prevention, as well as strategies for work he had observed the spread of AIDS carcinomas. Today it’s almost impossible to testing and treating and caring for people in contemporary African communities, tell if someone has HIV or not. living with HIV. and he was concerned that AIDS would So that brings me to focus on the spread as vehemently through Aboriginal 1994, just a few years later, and Indigenous response – and let me begin communities. Gladly, we are testament Anwernekenhe’s birth occurred in with our famous Condoman who first that that hasn’t been the case but it doesn’t Hamilton Downs some 120kms up came to light in 1987 by a group of mean he was wrong! The chances of this north east of here; a roundtable of sorts, Indigenous health workers in Townsville. happening are as real today as they a gathering of minds, a gathering of The campaign sought to promote and were then. leaders, coordinated by my good friend encourage condom use among Aboriginal Phil Walcott (who incidentally still lives Our survival has been strong, the and Torres Strait Islanders. The popularity here in the Alice) and the late John Cross. emergence of community orgs such as of Condoman has increased over the And so the journey began of Australia’s Outblak was born 20 years ago – a gay and years. The campaign used humour and community-led response to HIV by lesbian social group in Melbourne that was messaging that impacted the population Aboriginal and Torres Strait Islander developed to provide a space for gay men it touched on the taboo subjects of sex people. and their friends in Melbourne, and is still a and injecting. Prompted by the Grim great community event in Melbourne. Reaper ads a year earlier, Prof Gracelyn Many of you were at the Anwernekenhe Smallwood advocated for Commonwealth 1 conference, and some of those at this For me personally, a lot has changed. I have funding because she feared our mob first meeting have passed on, and some are been involved in the development of the HIV Australia, Volume 13, No. 3 | 15 HIV response – particularly in this setting Strait Islander community. We have outbreak responses once HIV is detected in – for many years. I remember working here had collectively about 600 cases of HIV communities. in Alice Springs in the late 1990s, creating diagnosed in our population over the years. The second area of HIV prevention video tapes in central Australian Aboriginal The rates of HIV have been on par with that needs strengthening is in the area community languages about HIV. the Australian population for most of that of injecting drug use (IDU) within our time, but in the last few years the rate of ANA’s role in the past 21 years has population. With 16% of all cases of HIV HIV diagnosis has been creeping above the been focused on responding to the diagnosed over the last five years in the non- Indigenous population. It’s worrying, community, developing campaigns for Aboriginal and Torres Strait Islander it’s concerning, but we have failed to get the community, supporting staff working population attributable to IDU, something this up in national priorities. People, I hope in mainstream organisations, advocating is going wrong in our population. We one day, will see the risk. It would be much for change within AIDS Councils, have new drugs like ice; we have risk wiser to respond now, rather than once supporting the development of policy factors never contemplated before; we have something has happened. and practice, membership of national contestable ideas about harm minimisation committees within the HIV partnership. So what do we need to do to prevent this programs in communities – we need to be It’s an important role, and one that from happening? doing more. needs to be continued. It’s unacceptable To me, we have a handful of issues that The third area is through the transmission that right now that ANA, like many require strengthening in our response. of HIV from regions on Australia’s other community-based organisations, The first of these is the high rates of other doorstep. PNG is on the doorstep of the are struggling with long-term funding STIs that exist in many Aboriginal and Torres Strait Islands (TSI), and the TSI are commitment from governments. Torres Strait Island communities. With on the doorstep of Cape York – an entry So what does the future hold for us as a over 50% of young people living in remote point to the rest of Australia. We need to do community? communities diagnosed with either much more in this space. chlamydia, gonorrhoea or trichomoniasis, I am here to say this – if we are not careful Another area we need to do more about is we need to do something urgent and drastic we will end up with rates of HIV similar our work with gay men. Survey data have to reduce these rates. It’s well established to African countries like Nigeria. You shown differing risk factors in both sexual that if you have another STI it makes it might ask ‘Why?’ My response is because risk behaviours and injecting risk between much easier for HIV to be transmitted – it’s happened in similar populations to us, Aboriginal and Torres Strait Islander men this is of major concern. such as in First Nations Aboriginal people and non-Indigenous men. in Canada. Let me just point to one On the subject of other STIs, right now in The emergence of sistergirl and brotherboy province in Canada, Saskatoon, where the Australia and among our people, we have communities also raises issues into the rate of HIV is equivalent to a rate of HIV the largest syphilis outbreak recorded for future about risk prevention strategies. in Nigeria. Saskatoon is a prairie province, over 30 years. This outbreak started out and 16% of its population is Aboriginal. from an initial few cases in Queensland So too for people living with HIV – the The province has over 600 cases of HIV, and has now spread to over 800 cases new science of starting people on treatment in which 80% of them are Aboriginal in northern Australia, spanning three as soon as possible is compelling for better and 75% of which have been driven by jurisdictions. This outbreak mostly affects lives and healthier outcomes. How can injecting drug use. Because of the high young people heterosexual people. We we ensure people within our communities rates of HIV in Saskatoon, the healthcare have much to learn from this syphilis are tested, diagnosed engaged in care, system is struggling to help all the people outbreak – but the main point is if we on treatment and attain a sustained affected. This is very possible in Australia, don’t get on top of HIV quickly, once it’s undetectable viral load? as we have a similar healthcare system and diagnosed in communities we will be up Finally, we need to address stigma have seen similar scenarios in the past on the river without a paddle. and discrimination. There is a subtle many other health conditions. We must do more to control STIs in type of discrimination that exists in Back in 1998, Australia first started our communities; it’s unacceptable, it’s our communities, sometimes between collecting epidemiological data about appalling – our people deserve better. I black and white, sometimes between cases of HIV in the Aboriginal and Torres don’t think we are all that prepared for HIV positive and negative, sometimes between non-drug user and drug users, sometimes between gay and non-gay, and … but in the last few years the rate of HIV diagnosis has sometimes between genders. Stigma and been creeping above the non-Indigenous population. discrimination drive risk, and we must make these connections and tackle these It’s worrying, it’s concerning but we have failed to get this issues head on. There is much that needs to be done in this space and ANA is up in national priorities. People – I hope one day will see the ideally placed to tackle these issues. risk. It would be much wiser to respond now rather than The establishment of ANTHYM (Aboriginal National Torres Strait Islander once something has happened. Youth Mob) is great for our sector – a

16 | HIV Australia, Volume 13, No. 3 youth-led initiative for youth is what is ANA’s role in the Australian response that has to be celebrated. Your commitment desperately needed. We desperately need is real, it’s one that is needed, and it’s is commendable. I know it hasn’t been an to find a space within the response for one that needs to be supported. The easy path. ANTHYM. mantra of ‘Nothing About Us Without Finally, in closing, it would be remiss of me Us’ is pertinent. ANA is made up of If we could do all of these things well – and not to mention two others: Neville Fazulla representatives of the community affected do them now – then HIV would still be and Rodney Junga-Williams. Connected by HIV and this community conference is one of the best stories in Aboriginal health through kin, connected through blood, I important not only as an update for you, in another 30 years. love you both dearly. I miss you like crazy, but for the rest of your communities. Rodney, and I am sure you are watching The prevention toolbox comprises more History tells us now more than ever down us today and would be ever so proud than just condoms now. Of course, we need to change. We need to review of both of our efforts. And to Neville, you’re condoms are a mainstay in prevention our efficiency; we need to review our the essence of bravery, courage, strength, efforts; however, treatment is now effectiveness; we need to tackle HIV love and compassion. I know you work considered a major tool in the prevention prevention differently. We need to ensure tirelessly, and I know you’re committed. I toolbox. The science is clear; the earlier you our services that we expect so much from want to acknowledge your efforts, not only start antiretroviral treatment the longer can deliver what is expected of them, and at this conference, but over the last thirty you will live. If you are on treatment, the what is required of them in delivering on years. You’re a star. science is that you can enjoy a life with clinical guidelines. an undetectable viral load, and once again And on that note, thank you. enjoy sexual liberation with your loved ones. Because, despite all the advances in science and all the knowledge in the world, a cure Associate Professor James Ward is PrEP (pre-exposure prophylaxis) offers us for HIV is not yet in our scope. Head, Infectious Diseases Research great opportunities again to enjoy the sexual Aboriginal and Torres Strait Islander freedom we once enjoyed. This is promising; We need to be sophisticated in our Health at South Australian Health and however, we need to stop and consider approaches. We need to be on top of what Medical Research Institute (SAHMRI). and challenge what this will mean to a is happening in our communities. We need community with already STIs at too higher to be alerting people what the story is in levels and nuance the messaging around our communities – because responding this to make sure we don’t escalate STIs in afterwards is too late. our urban and regional areas. In closing, I want to acknowledge the Similarly, HIV rapid tests are an incredibly contribution Michael [Costello-Czok] has Listen to James Ward’s complete Anwernekenhe 6 welcome tool to the HIV sector. given to this component of the approach keynote address online: bit.ly/jw-a6 within our communities. It’s a milestone

HIV Australia, Volume 13, No. 3 | 17 Aboriginal Nations Torres Strait Islander HIV Youth Mob (ANTHYM)

By James Saunders

ANTHYM is the first National Aboriginal and Torres Strait Islander Youth Committee focused on sexual and reproductive health education for this generation and future generations. ANTHYM will empower young people as they transition to adulthood through education and a greater understanding of healthy sexual lives. This will involve halting increasing rates of HIV and other sexually transmissible infections, reducing risks associated with early sexual debut using a peer led holistic based approach. ANTHYM currently consists of 10 passionate Aboriginal and Torres Strait Islander youth who are nurses, university students, and health workers with one thing in common – changing the face of health education and promotion to ensure it has reach, meaning and empowering messages for young Aboriginal and Torres Strait Islander people. ANTHYM was formed during the 2014 International Indigenous Peoples Conference on HIV/AIDS held in Sydney in July 2014 and a satellite conference of International AIDS Conference held in Melbourne. James Ward was instrumental in the formation of ANTHYM, and we are very grateful for his guidance and mentorship. Using modern methods of communication, ANTHYM is planning to build a national youth network database of young Aboriginal and Torres Strait Islander peoples who are passionate about changing the conversations about sexual health in their communities. This is one of many projects planned for 2016. Upon formation, ANTHYM produced a photographic series using catchy slogans to encourage young Aboriginal and Torres Strait Islander people to get tested. The campaign was shot in Sydney with young upcoming Aboriginal models from around Australia volunteering their time to take part in the campaign. For further information about ANTHYM and to see more ANTHYM campaign James Saunders is a founding member images visit: www.anthym.org and of Aboriginal Nations and Torres Strait Islander HIV Youth Mob (ANTHYM). www.facebook.com/ANTHYMAUS 18 | HIV Australia, Volume 13, No. 3 HIV and sexually transmissible infections among Aboriginal and Torres Strait Islander people: summary of the latest surveillance data

By Marlene Kong and James Ward

The Aboriginal and Torres Strait Islander 7 Health Program was established at The 33 cases in 2014 Kirby Institute in 2007. The Program 6 5 works collaboratively across sectors to 1.6 times higher close the gap in health disparity between 4 Aboriginal and Torres Strait Islander and 3 non-Indigenous people, with a key focus 2 on sexual health and blood borne viruses. 1 Each year, the Aboriginal and Torres Strait 0

Islander Health Program collaborates Age standardised rate per 100,000 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 with the Surveillance Evaluation and Year Research Program on the Bloodborne viral and sexually transmitted infections Aboriginal and Torres Strait Islander Non-Indigenous in Aboriginal and Torres Strait Islander people: Surveillance and Evaluation Report. Figure 1: Newly diagnosed HIV notification rate in the Australian-born population per 100,000, 2005–2014, by Aboriginal and Torres Strait Islander status. Source: State and Territory health authorities; ABS Catalogues 3101051 - The surveillance report provides 3101058; 3100DO003_201212; 32380do001_2011. information on the occurrence of blood borne viruses and sexually transmitted 242 cases of HIV infection were newly Based on tests for immune function, a third infections among Aboriginal and Torres diagnosed in the Aboriginal and Torres (30%) of the new HIV diagnoses among Strait Islander people in Australia for the Strait Islander population in the ten years the Aboriginal and Torres Strait Islander purposes of stimulating and supporting from 2005 to 2014. population were determined to be late, in discussion on ways forward in minimising that they were in people who had their Between 2012–2014, the notification rate the transmission risks, as well as the infection for at least four years without of new HIV diagnosis in the Aboriginal personal and social consequences of these being tested. and Torres Strait Islander population (5.9 infections within Aboriginal and Torres per 100,000) was higher than in the non- In 2014, HIV prevalence in Aboriginal and Strait Islander communities. This article Indigenous population (excluding people Torres Strait Islander peoples was similar has drawn information from that report to from a high HIV prevalence country of to the Australian born non Indigenous provide a summary of the latest surveillance birth) (3.7 per 100,000). population (0.11 vs 0.13%). data pertaining to HIV and sexually transmissible infections (STIs). The notification rates of newly diagnosed The higher rate of HIV diagnosis in HIV infection in the Aboriginal and Torres Aboriginal and Torres Strait Islander Australia’s Aboriginal and Torres Strait Strait Islander population are based on peoples in the past five years requires a Islander population continues to be small numbers, and may reflect localised strengthened focus on prevention in this overrepresented in notifications of STIs, occurrences rather than national patterns. vulnerable population (Figure 3, overleaf ). and blood borne viruses (BBVs). In particular, outer regional and remote Among notifications of newly diagnosed Chlamydia communities continue to experience HIV infection in 2010–2014, the Chlamydia continues to be the most substantially higher rates of notifiable STIs. most frequently reported route of HIV frequently reported condition in Australia, The information that follows is a summary transmission was sexual contact between with 86,136 notifications in 2014. surveillance data related to STIs and HIV males in both the Aboriginal and Torres recorded for Aboriginal and Torres Strait Strait Islander (50%) and non-Indigenous Of these, 6,641 (8%) were among the Islander communities for the period 1 population (75%). Aboriginal and Torres Strait Islander January–31 December 2014. A higher proportion of notifications from population; 25,365 cases (29%) were among the Aboriginal and Torres Strait Islander the non-Indigenous population; and for HIV populations were attributed to injecting 54,130 (63%) diagnoses, Indigenous status was not reported. There were a total of 1,081 notifications of drug use (16% vs 3%) and heterosexual newly diagnosed HIV infection in 2014; 33 contact (20% vs 13%) and in females Over the last five years, chlamydia diagnoses were among the Aboriginal and (22% vs 5%), as compared with the non- notification rates in the Aboriginal and Torres Strait Islander population (Figure 1). Indigenous population (Figure 2, overleaf ). Torres Strait Islander population have been HIV Australia, Volume 13, No. 3 | 19 around three times higher than the rate in Aboriginal and Torres Strait Islander Australian-born non-Indigenous the non-Indigenous population (Figure 4). 6% 4% Chlamydia predominantly affects people 3% aged 15–29 in both Indigenous and non- 16% 13% Indigenous populations, with the highest 5% notification rates occurring among women 50% in the 15–19 year age group. 20% This may reflect greater disease burden, 75% and/or higher rates of access to health 8% services and subsequent testing in these Male-to-male sex Male-to-male sex populations (for example, antenatal Male-to-male sex and injecting drug use Male-to-male sex and injecting drug use screening in the younger child-bearing population pyramid of the Aboriginal and Heterosexual sex Heterosexual sex Torres Strait Islander population). Injecting drug use Injecting drug use Despite just 22% of the Aboriginal and Other/undetermined Other/undetermined Torres Strait Islander population residing in remote areas, chlamydia notifications Figure 2: HIV exposure category, 2010–2014, by Aboriginal and Torres Strait Islander status. Source: State and reported from these areas accounted for Territory health authorities. more than half of all notifications in the Aboriginal and Torres Strait Islander population (Figure 5). 12 Gonorrhoea 10 Of 15,786 notifications of gonorrhoea 8 in 2014, 3,584 (23%) were among the Aboriginal and Torres Strait Islander 6 population; 6,915 (44%) were among the 4 non-Indigenous population; and for 5,287 (33%) notifications, Indigenous status was 2 not reported. 0 Age standardised rate per 100,000 Major cities Inner regional Outer regional Remote Very remote The rate of gonorrhoea notifications in the Aboriginal and Torres Strait Islander Region of residence population in 2014 was 18 times higher Aboriginal and Torres Strait Islander Non-Indigenous than in the non-Indigenous population (Figure 6). 71% of cases among the Figure 3: Newly diagnosed HIV notification rate in the Australian-born population per 100,000, 2014, by Aboriginal and Aboriginal and Torres Strait Islander Torres Strait Islander status and area of residence. Source: State and Territory health authorities. population were diagnosed among people in the 15–29 year age group, compared with 56% in the non-Indigenous population 1600 (Figure 6). 3 times higher 1400 For the Aboriginal and Torres Strait 1200 Islander population, gonorrhoea is mostly diagnosed among young women and men 1000 living in remote areas, while the majority of 800 cases of gonorrhoea in the non-Indigenous 600 population are among gay men living in 400 major cities. 200 This creates two distinct gonorrhoea Age standardised rate per 100,000 0 epidemics in Australia, each of which 2010 2011 2012 2013 2014 requires separate responses (Figure 7). Year Infectious syphilis Aboriginal and Torres Strait Islander Non-Indigenous

Nationally, 1,999 cases of infectious syphilis Figure 4: Notification rates per 100,000 of chlamydia infection, 2010–2014, by Aboriginal and Torres Strait Islander were diagnosed in 2014; 235 (12%) among status and year. Source: Australian National Notifiable Diseases Surveillance System; ABS Catalogues: 3101051 - the Aboriginal and Torres Strait Islander 3101058; 3100DO003_201212; 32380do001_2011; Includes jurisdictions (NT, QLD, SA, WA) in which Aboriginal and population, 1,588 (79%) among the non- Torres Strait Islander status was reported for more than 50% of diagnoses for each year.

20 | HIV Australia, Volume 13, No. 3 Indigenous population and Indigenous 3500 status was not reported for 176 (9%) diagnoses. 3000 2500 The notification rate of infectious syphilis in the Aboriginal and Torres Strait Islander 2000 population in 2012 was four times higher 1500 than the rate in the non-Indigenous 1000 population (32 vs 8 per 100,000 population) 500 increasing to 300 times higher in remote

areas (Figure 8, overleaf ). Age standardised rate per 100,000 0 Major cities Inner regional Outer regional Remote Very remote Rates of infectious syphilis notifications among the Aboriginal and Torres Strait Region of residence Islander population increased in 15–19 Aboriginal and Torres Strait Islander Non-Indigenous year olds in 2011 (from 34 per 100,000 in 2010 to 95 per 100,000 in 2011), due Figure 5: Chlamydia infection notification rate per 100,000, 2014, by Aboriginal and Torres Strait Islander status and to an outbreak in the northern areas of area of residence. Source: Australian National Notifiable Diseases Surveillance System; ABS Catalogues: 3101051 Queensland, the Northern Territory and - 3101058; 3100DO003_201212; 1270055006_CG_POSTCODE_2012_RA_2011; ABS SuperTable 2011 Census; Western Australia, and was 99 per 100,000 32380do001_2011; Includes jurisdictions (NT, QLD, SA, WA) in which Aboriginal and Torres Strait Islander status was reported for more than 50% of diagnoses for each year. in 2014 (Figure 8, overleaf ). Like gonorrhoea, infectious syphilis affects two main population groups: young 1200 Aboriginal and Torres Strait Islander 18 times higher 1000 women and men equally in remote communities, indicating predominantly 800 heterosexual transmission; and gay men 600 living in major cities suggesting that 400 transmission is primarily related to sex 200 between men. 0 2010 2011 2012 2013 2014

Notifications of congenital syphilis in Age standardised rate per 100,000 Aboriginal and Torres Strait Islander Year peoples declined from seven in 2005 to one in 2009, and then returned to 5 in 2014. Aboriginal and Torres Strait Islander Non-Indigenous

The resurgence of infection in remote Figure 6: Gonorrhoea notification rates per 100,000, 2010–2014, by Aboriginal and Torres Strait Islander communities after years of declining status. Source: Australian National Notifiable Disease Surveillance System; ABS Catalogues: 3101051 - rates, bringing with it cases of congenital 3101058; 3100DO003_201212; 1270055006_CG_POSTCODE_2012_RA_2011; ABS SuperTable 2011 Census; syphilis, emphasises the need for testing and 32380do001_2011; Includes jurisdictions (ACT, NT, SA, Tas., Vic., WA) in which Aboriginal and Torres Strait Islander status was reported for more than 50% of diagnoses for each year. treatment in this population, particularly in antenatal settings (Figure 9, overleaf ). Donovanosis 3500

Donovanosis, once a regularly diagnosed 3000 sexually transmissible infection among 2500 remote Aboriginal populations, is now 2000 close to elimination. After a peak in the 1500 late 1990s and early 2000s, no cases were 1000 detected in Australia in 2011; only one in 2012; zero in 2013; and one in 2014. 500

Age standardised rate per 100,000 0 Implications for Aboriginal Major cities Inner regional Outer regional Remote Very remote and Torres Strait Islander Region of residence communities

Rates of STIs are particularly high among Aboriginal and Torres Strait Islander Non-Indigenous both Indigenous and non-Indigenous Figure 7: Gonorrhoea notification rate per 100 000, 2014, by Aboriginal and Torres Strait Islander status and young people living in outer regional area of residence. Source: Australian National Notifiable Disease Surveillance System; ABS Catalogues: 3101051- and remote areas of Australia; however, 3101058; 3100DO003_201212; 1270055006_CG_POSTCODE_2012_RA_2011; ABS SuperTable 2011 Census; it is important to note that rates of 32380do001_2011; Includes jurisdictions (ACT, NT, SA, Tas., Vic., WA) in which Aboriginal and Torres Strait Islander chlamydia notifications are higher across all status was reported for more than 50% of diagnoses for each year.

HIV Australia, Volume 13, No. 3 | 21 geographical locations for the Aboriginal 35 235 cases in 2014 and Torres Strait Islander population compared to the non-Indigenous 30 4 times higher population. Two distinct epidemics exist for 25 gonorrhoea and syphilis and urgent action is required to address levels of knowledge, 20 community awareness and understanding 15 of STIs as well as promotion of testing as a prevention strategy in these communities. 10 In addition, further resourcing is required to 5

assist health services address the burden of Age standardised rate per 100,000 disease in these communities. 0 2010 2011 2012 2013 2014 Internationally, high rates of STIs in Year communities implicate higher HIV notification rates; however, so far this is Aboriginal and Torres Strait Islander people syphilis infection <2 years not the case in Australia, where rates of Non-Indigenous people syphilis infection <2 years HIV diagnoses among the Indigenous population have been comparable to the Figure 8: Syphilis and infectious syphilis notification rates per 100,000, 2010–2014, by Aboriginal and Torres Strait non-Indigenous population; however, Islander status. Source: Australian National Notifiable Disease Surveillance System; ABS Catalogues: 3101051- 3101058; 3100DO003_201212; 32380do001_2011; Includes jurisdictions (ACT,NSW, NT, QLD, SA, Tas., Vic., WA) in the trend in recent years of higher rates which Aboriginal and Torres Strait Islander status was reported for more than 50% of diagnoses for each year. of HIV occurring in the Aboriginal and Torres Strait Islander population than non- Indigenous Australians is worrying. 140 The stigma surrounding HIV continues 120 to be a key driver of HIV transmission, undermining HIV prevention efforts. 100 STIs can also have significant physical, 80 psychological and social consequences, 60 especially for young people, who may shy 40 away from seeking health care. Addressing stigma and bringing STI rates under 20

control – particularly in remote Aboriginal Age standardised rate per 100,000 0 communities – should remain a national Major cities Inner regional Outer regional Remote Very remote priority until they are at least comparable to Region of residence the rest of the Australian population. Aboriginal and Torres Strait Islander Non-Indigenous Finally, ongoing efforts to improve access to needle and syringe programs and other Figure 9: Infectious syphilis notification rate per 100,000, 2014, by Aboriginal and Torres Strait Islander status and harm reduction programs are required to area of residence. Source: Australian National Notifiable Disease Surveillance System; ABS Catalogues: 3101051- reduce HIV notifications caused through 3101058; 3100DO003_201212; 1270055006_CG_POSTCODE_2012_RA_2011; ABS SuperTable 2011 Census; injecting drug use. 32380do001_2011; Includes jurisdictions (ACT,NSW, NT, QLD, SA, Tas., Vic., WA) in which Aboriginal and Torres Strait Islander status was reported for more than 50% of diagnoses for each year. To achieve this, further efforts are required to ensure equitable access to: n education and health promotion in school and teenage years n effective and well-resourced clinical health service delivery, and n effective prevention strategies such as Dr Marlene Kong is Program Head, needle and syringe programs (NSPs) Aboriginal and Torres Strait Islander Health Program at the Kirby Institute, and opioid substitution therapy (OST). UNSW Australia. Associate Professor For further information, see the James Ward is Head, Infectious Bloodborne viral and sexually transmissible Diseases Research Aboriginal and infections in Aboriginal & TSI people: Torres Strait Islander Health at Annual Surveillance Report 2015, available South Australian Health and Medical at: http://www.kirby.unsw.edu.au Research Institute (SAHMRI).

22 | HIV Australia, Volume 13, No. 3 Health promotion retrospective A snapshot of HIV health promotion campaigns produced by Aboriginal and Torres Strait Islander community members working in partnership with community and government health organisations.

Condoman

Condoman is one of Australia’s longest running health promotion campaigns, having been first developed in 1987 by a group of Indigenous health workers in Townsville to promote and encourage condom use. During the campaign, the action figure was referred to as the ‘deadly protector of sexual health’ and sprouted messages like don’t be shame be game protect yourself and use frenchies/condoms. Aunty Gracelyn Smallwood remembers the first time she saw the Grim Reaper TV advertisements and quickly realised that the messages might not be seen or understood by Aboriginal or Torres Strait Islander people, so she secured a federal government grant to develop a campaign that would have impact on the population; and so, Condoman was born! He continues to live on and promote safe sex messages globally but importantly across Aboriginal and Torres Strait Islander communities. In 2009 the Condoman was reinvigorated and Lubelicious joined Condoman in continuing to promote safe sex.

Condoman says ‘Don’t be shame be game’, use condoms (National Campaign Against AIDS – NACAIDS), designed by At the 2011 International Society of STD Michael Callaghan for Redback Graphix, 1987. Research Conference, Condoman was cited as one of the top 100 sexual health messages developed globally.

Archival posters appearing on pages 23–26 are provided courtesy of the Australian Lesbian and Gay Archives (ALGA). The posters are captioned to the extent of the information available, if you have additional details please contact the Australian Lesbian and Gay Archives: [email protected]

HIV Australia, Volume 13, No. 3 | 23 Health promotion retrospective

Don’t be dippy, cover your pippy, etc. (Aboriginal Medical Service, Redfern, NSW), unidentified Stop AIDS Now, Spread the word (Aboriginal Medical Service, Redfern), designed and printed designer, c.1987. by Lou Davis Graphics, c.1988

No condom – no way (National Campaign Against AIDS – NACAIDS), designed by Stephen You don’t have to be a queenie to get AIDS. (National Campaign Against AIDS – NACAIDS), Lees for Redback Graphix, 1988. designed by Stephen Lees for Redback Graphix, 1988.

Your next shot could be your unlucky shot. (Victorian Help crush AIDS, (Aboriginal Medical Service, Adelaide), Stop AIDS, information for Koories, (Aboriginal Medical Aboriginal Health Service), unidentified designer, c.1980s. unidentified designer, c.1980s. Service, Redfern, NSW), unidentified designer, 1987.

24 | HIV Australia, Volume 13, No. 3 Sharing needles spreads AIDS – Stop AIDS, (North Coast Care don’t share – Stop AIDS (Aboriginal Medical Service, Protect our future, learn about AIDS, by Joanne Dwyer. Aboriginal Health Team), unidentified designer, c.1980s. Redfern), designed and printed by Lou Davis Graphics, c.1988. (Victorian Aboriginal Health Service), c.1988.

Use a condom stay at ease, spread the word not the disease, (Aboriginal Medical Service Love your lover have no other, (unidentified publisher), designed by Laura, c.1990s. Co-operative Ltd, Redfern), designed and printed by Lou Davis Graphics, c.1988.

The knockout AIDS test today, (Streetwize Comics), Don’t be a fool, cover your tool! (Streetwize Comics), Be a winner, use a condom, (NT Dept of Health designed by Dean Dobson and Joseph Banks, c.1993. designed by Frank Coleman, Ray Merritt, Stephen Eatts, and Community Services, Darwin), unidentified Adrian Dixon, Vernon Chillie, Chris Bates and Joey photographer, c.1995. Wallace, c.1993.

HIV Australia, Volume 13, No. 3 | 25 Health promotion retrospective

Our future is in our hands, pick up knowledge, not Be my darling-darling – Use condoms! (Kimberley When you take your pick, pick the right trick (Aboriginal HIV. (Indigenous Project, Queensland AIDS Council), Aboriginal Medical Services Council), designed by Jimmy Health Service, Adelaide), unidentified designer, unidentified designer, c.1990s. Pike, c.1990s. c.1990s.

Education about AIDS – Every body’s business, (Department of Health, Housing, Local Government Don’t put our people at risk with AIDS = AIDS ungkunytja wiyangku wantima and Community Services), artwork by Zine Saunders, 1993. nganampa anangu tjuta, (TAFE School of Aboriginal Education and the S.A. Department of Correctional Services), designed by Harry Power, printed at the C.T.T. Nunga Printshop by M. Stewart, S. Rankine, L. Carter, M. Taylor and A. See more images from the health promotion retrospective Weetra, c.1990s. in HIV Australia online: bit.ly/A-TSI-HPretro

26 | HIV Australia, Volume 13, No. 3 The ‘We’re Family Too!’ poster was endorsed by the National Aboriginal Community Controlled Health Organisation Proud to be Black, Proud to be Gay, AFAO poster series, (NACCHO) and the Australian National Council on AIDS, hepatitis C and Related Diseases (ANCAHRD). AFAO, 2000. 2009.

AFAO’s Better To Know campaign (2012) includes a range of collateral and an interactive website (www.bettertoknow.org.au) providing information on HIV and sexually transmissible infections, tailored to ‘men’s business’ and ‘women’s business’, a partner notification service, a testing reminder service and information about clinics and services split by state and territory. AFAO’s Sistergirls Say campaign (2004) was a national peer-based poster and postcard campaign developed to promote positive self-esteem and sexual health among Indigenous sistergirl and transgender communities.

‘KUDJAK’ is a Darwin (Larrakia) Aboriginal term for ‘sex’. Black Comedy star, Steven Oliver, fronts ‘Take Blaktion’, ‘Our Destiny’, a national Aboriginal and Torres Strait This t-shirt was produced for a youth sexual health a campaign empowering Aboriginal young people to Islander HIV prevention, testing and treatment workshop for Indigenous youth, held in collaboration make informed decisions about sexual health. The campaign. Anwernekenhe National HIV Alliance (ANA) with Danila Dilba and the Northern Territory AIDS and NSW STI Programs Unit and the Aboriginal Health and and AFAO, 2013. Hepatitis Council (NTAHC) in 2012. Medical Research Council of NSW (AH&MRC), 2015. HIV Australia, Volume 13, No. 3 | 27 Responding to HIV among Aboriginal and Torres Strait Islander people in the Northern Territory

By David Aanundsen

Introduction a number of other publications on Although the AIDS pandemic reached Aboriginal gay men’s and transgender 4 Australia in 1984, it was not until a populations. decade later that funding was allocated In 2015, NTAHC recognised Gary’s for Aboriginal and Torres Strait Islander outstanding contributions to the objects programs at AIDS Councils, and of the Northern Territory AIDS and Aboriginal responses to HIV began being Hepatitis Council by awarding him a led around Australia. Lifetime Membership Award. In Alice Springs in 1994, a non- NTAHC’s Aboriginal Sexual Aboriginal man and Alice Springs Health (ASH) program resident, Phil Walcott, and Aboriginal man, John Cross (deceased), collaborated NTAHC has been providing services to secure Commonwealth funding and across the NT since the late 80s, and were involved in coordinating the first in 2016 will celebrate its 30th year of National Aboriginal, Torres Strait Islander incorporation. In 2003, the organisation Gay Men and Transgender Sexual Health changed its name from the NT AIDS Conference, held at Hamilton Downs. Council to the Northern Territory AIDS The Anwernekenhe conference and Hepatitis Council (NTAHC), to Cover image from Gary Lee’s seminal report Malaga to reflect a broadening of its scope to include set precedents through a series of Malaga, assessing the HIV needs of Aboriginal gay men recommendations for responding to and other men who have sex with men in Darwin. hepatitis alongside HIV/AIDS. the needs of Aboriginal and Torres During its history, NTAHC has provided Strait Islander gay men and transgender services to people with blood borne viruses people, not only in the area of HIV/ address this dearth of knowledge. Gary (BBVs), working predominantly with gay AIDS but also regarding broader sexual first became involved with the NT AIDS men, sex workers, people who use injecting health and mental health needs. In 2015, Council in 1995 through his employment drugs and Aboriginal and Torres Strait Arnwernekenhe 6 is celebrating 21 years, at Danila Dilba Aboriginal Medical Islander people. and returned to Alice Springs to host its Service, when his position was placed in The NTAHC ASH program operates sixth conference. the AIDS Council as an outreach worker. from Darwin and Alice Springs, and The Northern Territory AIDS and Gary’s brief was to work with Aboriginal is staffed by Darren Braun, Aboriginal Hepatitis Council (NTAHC) currently people who identified as gay, bisexual, Sexual Health Promotion Officer and participates in the Anwernekenhe transgender or who used injecting drugs. David Aanundsen, Aboriginal Sexual National HIV Alliance with membership It was at this time that Gary started work Health Coordinator. The ASH program on the Board; NTAHC participated in on gathering evidence to support the has a long history of involvement in the Anwernekenhe conference, along needs of Aboriginal people in relation to HIV support and awareness with direct with other representatives from HIV HIV/AIDS. His groundbreaking 1996 client support. The ASH program also organisations across Australia. report, Malaga to Malaga (‘Man to Man’), participates in conferences such as examined issues faced by the Aboriginal Anwernekenhe, hosts sistergirl retreats, Paving the way: the Malaga to gay male community in Darwin and develops Aboriginal-specific resources, Malaga report assessed the priority HIV/AIDS needs of and holds community stalls and education Initially, addressing HIV among this population.2 sessions to raise awareness about HIV, 1 hepatitis and sexual health among Aboriginal people in the Northern The recommendations of the report helped Aboriginal people in the Northern Territory (NT) – particularly among gay create a roadmap that sought to ‘inform Territory. men and other men who have sex with and lead to future planning, design, men – was difficult, as there was little and delivery of more appropriate and The bark painting, If you Love Me, Love research or information available on the 3 informed education programs’ . Gary’s Me Safely by Marrynula Mununggurr was needs and concerns of these populations achievements also helped in initiating commissioned by NTAHC in 2000. The during the 1990s. the implementation of the Northern painting uses a simple graphic style that Gary Lee, a Larrakia man involved in Territory AIDS Council’s service delivery shows ‘the right way’ and ‘the sad way’ the first Anwernekenhe conference as an program for these target populations. Gary (safe and unsafe sex). Posters and prints NT representative in 1994, went on to continued his research, and contributed of the artwork were produced for use by 28 | HIV Australia, Volume 13, No. 3 If you Love Me, Love Me Safely by Marrynula Mununggurr, Campaign produced by Sisters and Brothers NT and NTAHC promoting acceptance and support for gender diversity. commissioned by NTAHC in 2000.

health workers in the field to educate at the conference ‘to give credibility of sistergirls and brotherboys through Aboriginal people about using condoms to to their orientation and lifestyle with the dissemination of health promotion prevent HIV and hepatitis. reference to sexual health needs’5. messaging, and has worked in partnership NTAHC has been involved in supporting with the advocacy and support group This is an extraordinarily explicit piece of the needs of the Aboriginal transgender Sisters & Brothers NT, to produce a range work produced from within a culture that communities and has been holding of culturally appropriate and relevant holds taboos about references to sexual sistergirl retreats over a number of years. resources. This change in approach enables practice. The bark painting refers to serious Accessing services across the Northern us greater reach into these communities. contemporary health issues faced by Territory has often been difficult for Aboriginal communities and to initiatives sistergirls, and some have to travel long Aboriginal campaigns, that have been taken by various health distances from remote or regional areas to promotions and safe sex organisations in the Northern Territory to urban areas to access services. Often there resources address these conditions. The painting also are no services to meet the specific sexual refers to issues of displacement and loss of The NTAHC ASH program has health needs sistergirls interstate, which access to traditional lands. continued to play a role in developing a necessitates travel to access support; many range of Aboriginal-specific campaigns, The original bark painting was sold to raise sistergirls end up leaving the NT for this health promotion and safe sex resources. funds for the Council’s Aboriginal and reason. More recently, the Live Deadly Stronger Torres Strait Islander AIDS and Hepatitis The most recent annual sistergirl retreats and Longer Ask For A Test campaign awareness project. In 2013, ASHM used were held in 2012 at Kakadu and in 2013 has been successful, with NTAHC the print as the official artwork for its at the Mary River Wildness Retreat. collaborating with Congress Aboriginal Sexual Health and HIV Conferences in In 2013, the event was renamed the Medical Service and Clinic 34. Darwin. In recognition of that, Marrynula Aboriginal and Torres Strait Islander Mununggurr reproduced a limited edition Although the NT has some of the highest Health Retreat and made available print in pastel colours. rates of sexually transmitted infections to all Aboriginal and Torres Strait (STIs) in the country, testing rates among Islander people who identify as sistergirl, Transgender (sistergirl and Aboriginal people remain low. Where brotherboy or LGBTI (lesbian, gay, brotherboy) support in the testing is occurring, it is often not inclusive bisexual, transgender, intersex) in the NT. Northern Territory of BBV screening. NTAHC’s ‘Ask for During the retreats, which occurred over a a Test’ campaign was produced and The first Anwernekenhe conference was two-day period, information was delivered distributed throughout the NT to promote originally promoted as a gay men’s forum, on HIV and sexual health and on awareness about risk behaviours and to however, several sistergirls attended the accessing services in remote communities, encourage Aboriginal people to access first conference and sistergirl issues were with community members coming from HIV, hepatitis and sexual health testing if also embraced, and the Anwernekenhe all over the NT to participate. they think they are at risk. National HIV Alliance (ANA) now includes transgender representation. Since then, NTAHC has determined ‘Love Me Proper Way’ condom packs Transgender representation was endorsed that it can better support communities have also been developed and are regularly HIV Australia, Volume 13, No. 3 | 29 NTAHC’s sistergirl and LGBTI retreat poster, 2012. NTAHC’s ‘Ask For A Test’ campaign addresses low levels If you Love Me, Love Me Safely by Marrynula Mununggurr, of BBV and sexual health awareness and literacy among limited edition reprint, 2013. Aboriginal communities. supplied through NTAHC community over-burdened, under staffed and under Funding constraints are another issue stalls, Aboriginal community events and resourced, and struggle to manage the to consider in getting STI and BBV from the NTAHC offices. The packs acute care needs of the community, so information disseminated across the NT. include red, black and yellow condoms as sexual health and BBV screening often How do we continue to do this work well as lube sachets. takes a back seat. Access to condoms and with possible funding cuts? Despite these safe sex products is reliant upon people Distance is often a barrier to accessing concerns, NTAHC remains optimistic in accessing the clinic, which can often be sexual health services and information its approach. We do this work through stigmatising and shameful. throughout the NT, so the ASH program ongoing relationships with remote launched an online social media presence Apart from community education communities, a strong social media through a Facebook page called ‘Deadly delivered by NTAHC, in the Northern presence and a commitment to developing Pride’ (https://www.facebook.com/ Territory there is very little information culturally appropriate resources. A new DeadlyPride), which is a page to share about BBVs and STIs reaching Aboriginal HIV resource will also be launched this information on Aboriginal LGBTI issues communities, or even the general year. It is the first in a series with further and sexual health. population. With high rates of STIs and a resources being developed around hepatitis disproportionate number of cases of viral B and C, STIs and safe injecting. Present and future concerns hepatitis in the NT among Aboriginal responding to the needs of communities, this leaves communities References Aboriginal and Torres Strait vulnerable to a potential HIV epidemic 1 In this article, use of the term Aboriginal is Islander people on HIV in the inclusive of Torres Strait Islander peoples. – underlining the urgent need to address Northern Territory 2 ACOCA closed in late 2002, and a program STIs and BBVs among this population. in Alice Springs was started by the Northern Over the past year there has been a Territory AIDS and Hepatitis Council in 2003. Scientific advances in preventing significant increase in syphilis in the NT, 3 Lee, G. (1996). Malaga to Malaga: Man to and treating HIV have provided the Man. Danila Dilba Biluru Butji Binnilutlum including notifications of congenital knowledge and the means to reduce new Medical Service Aboriginal Corporation and syphilis, which is of great concern. People infections. New testing technologies are Northern Territory AIDS Council, Darwin. with STIs are also at greater risk of 4 Hodge, D. (2015). Rationale for the creating opportunities to significantly acquiring HIV. nomination of Garry Lee for the NTAHC improve testing accessibility that can Lifetime Membership Award. Presentation to Aboriginal people make up thirty percent contribute to reducing transmission of the NTAHC Board, Darwin, August 2015. of the population of the Northern STIs and BBVs; however, outside of urban 5 ibid. Territory, with a large percentage settings, it is quite another situation. For living in remote communities. Many many Aboriginal people living in remote of these people are living in extremely regions, there is no internet access and impoverished conditions, with poor it is difficult to stay up to date about access to health, housing, education new testing technologies, or to access David Aanundsen is Aboriginal Sexual and transport. Health clinics are often information about STIs and BBVs. Health Coordinator at NTAHC.

30 | HIV Australia, Volume 13, No. 3 Ngalawi Djardi (‘Sit and Yarn’): strengthening connections and sharing knowledge – the history of ACON’s health retreat for Aboriginal people Living with HIV

By ACON Aboriginal Project team

The ACON Aboriginal project To adequately explain the Ngalawi Anwernekenhe provided a gathering provides a range of activities and Djardi (‘Sit and Yarn’) retreat, it is ground to coalesce aims and strategies services designed to be culturally important to understand ACON’s way for Aboriginal and Torres Strait Islander of working. ACON works from a human action on HIV. People returned to their appropriate for the Aboriginal and rights perspective – good health flows home states and lobbied their local HIV Torres Strait Islander gay, lesbian, from the achievement of human rights organisations to implement HIV responses bisexual, and transgender including education, social justice and that took account of our specific needs and equity, as outlined in the World Health community contexts. Thus, in 1998, ACON community. This includes an Organization’s 1986 Ottawa Charter for formalised its work with Aboriginal people annual positive retreat program, Health Promotion. ACON therefore uses by establishing a dedicated project team where Aboriginal and Torres a strengths-based community development staffed by peers – Aboriginal people from approach to health promotion. That is, the groups most at risk or affected by HIV. Strait Islander people living with rather than being a service organisation From its beginning, ACON’s Aboriginal HIV can engage in culturally addressing ‘deficits’ in the community, Project worked to hold regular gatherings appropriate respite, relaxation ACON instead recognises community for our people living with HIV, which gradually evolved into the current annual and recreational activities, resilience and strengths, and works to facilitate communities to strengthen retreat model. social support, and professional connections, identify relevant issues, Our model aligns with the Toronto Charter: support. and take action to implement strategies Indigenous Peoples’ Action Plan on HIV/AIDS, for improving health and wellbeing. which sets out recommendations about As communities access evidence-based conducting HIV work with Indigenous knowledge, capacity for self-advocacy peoples. The charter, launched in 2006 at the increases and this enhances the capacity International Indigenous Peoples’ Satellite and effectiveness of the whole community. during the 16th International AIDS ACON’s annual Ngalawi Djardi retreat Conference, articulates and formalises the for Aboriginal people1 living with HIV same principles that ACON uses to guide is an important example of a strengths- its work: acknowledging Indigenous peoples’ based community development approach shared experiences relating to the AIDS to health promotion. The retreat is epidemic; the impacts of the changing sustained and continually improved by and face of the epidemic on Indigenous for Aboriginal people living with HIV, communities; and appropriate ways of building on decades of previous work. delivering health promotion that respects the rights of Aboriginal and Torres Strait To place the retreat within this context, an Islander people. understanding of the history from which it came is essential. In the 1980s, HIV A key principle within the charter that is hit Australia hard in Sydney and a period central to our approach is ‘nothing about us of death, grieving and confusion about without us,’ which means Aboriginal people causes, effects and prevention was felt by – particularly those living with HIV – must the whole community. Many community be consulted and involved in all aspects of leaders and potential leaders were lost. our HIV-related health promotion work, Recognising the need to come together to taking into account Indigenous models of develop a nationwide strategy relevant to holistic health, including cultural, social our people, Aboriginal people successfully and spiritual as well as physical and mental pushed for the first Anwernekenhe health. The retreat, therefore, incorporates conference, which took place in 1994 activities that address all of these aspects at Hamilton Downs, Mpartwe (Alice to provide a program that is culturally safe, Springs) on Arrernte country. informed and accessible.

HIV Australia, Volume 13, No. 3 | 31 n One example of the way the retreat Indigenous men in Australia are continually evolves in response to more likely than non-Indigenous participant feedback is the name itself. Australian men to report unprotected A desire for the retreat to have a distinct anal intercourse with casual partners, and meaningful name led to ACON and more than twice as likely to report facilitating a community call-out for injecting drug use.6 potential names in 2012. Online voting Therefore, for cultural reasons of inclusion was conducted and Ngalawi Djardi, which and for epidemiological reasons of means ‘sit and yarn’ in the Sydney basin’s addressing the diversity of those affected, Darug language, was the winning name. the retreat is open to women, men, sistergirls Ngalawi Djardi continues to provide a and brotherboys, of any sexual identity. platform for Aboriginal people living in Development of each year’s Ngalawi NSW to contribute to the development Djardi retreat is based on these principles of HIV policy that affects us at national and is informed by participant feedback. and international level. For example, in The retreats aim to increase the health The retreat provides opportunities for 2014 participants discussed the issues that and well-being of Aboriginal people and participants to hear about, and access other would be taken by delegates to the 2014 Torres Strait Islander people living with platforms for capacity development and International Indigenous Pre-conference HIV by providing respite and relaxation, peer-based education. Examples include on HIV and AIDS, and from there to the opportunities to connect and share ACON workshops such as Genesis, and 20th International AIDS Conference. stories with other HIV positive people the Positive Leadership Development In 2015, the retreat was held just prior and opportunities to celebrate and share Institute (PLDI) program and the Positive to Anwernekenhe 6 to enable retreat culture, art and good yarns and by access to Speakers Bureau. participants to have a say on issues taken professional workers. Ngalawi Djardi is a successful program to the conference even if they were not The retreats also serve important that meets community needs. ACON is able to attend. population-based health objectives. committed to continuing to support the In addition to being responsive Aboriginal people in NSW suffer a right to self-determination of Aboriginal to Indigenous ways of being, the greater burden of ill health than other people living with HIV and to providing epidemiological need for an Indigenous- populations. The impacts of colonisation this retreat for as long as Aboriginal people specific retreat for NSW residents is clear. In and dispossession, poverty, poor nutrition, are living with HIV in NSW. 2013, around a third of all Aboriginal people low educational outcomes, the geographic newly diagnosed with HIV were in NSW.2 remoteness of some communities, and References other factors – including high mobility, 1 In recognition of NSW as Aboriginal land The population rate of HIV diagnosis in lower health literacy, and the concept of and consistent with NSW Health guidelines the Aboriginal and Torres Strait Islander informed by consultation with Aboriginal ‘shame’ around discussing sexual health communities, in 2014, was 1.6 times communities, this article refers to ‘Aboriginal – contribute significantly to underlying higher than for non-Indigenous people. people’ or ‘Aboriginal gay and homosexually poor health status. The retreats bring active men’ but is inclusive of Torres Strait As with the non-Indigenous community, together members of an otherwise hard- Islander peoples. gay and other homosexually active men 2 The Kirby Institute. (2014). Bloodborne to-reach population to promote health in a within Aboriginal and Torres Strait viral and sexually transmitted infections in culturally accessible manner. Islander communities bear the greatest Aboriginal and Torres Strait Islander people: The retreats also create opportunities surveillance and evaluation report 2014. The burden of HIV. Latest data (2010–2014) Kirby Institute, UNSW Australia, Sydney. show that almost 60% of Aboriginal to gauge responses to existing health 3 Between 2010–2014, 50% of Aboriginal people diagnosed with HIV were men promotion initiatives and open up people diagnosed with HIV were men who who have sex with men, compared to discussions that will help to inform have sex with men (MSM), with a further work that targets the broader Aboriginal 8% of cases diagnosed among Aboriginal 80% of diagnoses in the non-Indigenous MSM who also engage in injecting drug use. 3 population. population. See: The Kirby Institute. (2015). Bloodborne At the retreats, attendees’ life experiences viral and sexually transmissible infections in There are however some unique differences Aboriginal and Torres Strait Islander people: in the way HIV impacts our communities: are recognised and valued. The people Surveillance and Evaluation Report 2015. The n Women make up a greater proportion best placed to talk about the impacts of Kirby Institute, UNSW Australia, Sydney. 4 ibid. of people diagnosed with HIV – HIV are those living with HIV. Attendees return to their home communities able to 5 ibid. but the rate of transmission via 6 The Kirby Institute. (2014). op. cit. heterosexual sex is equivalent to the pass on up-to-date information on HIV general population.4 testing, treatment, prevention, campaigns n In the non-Indigenous population, and services. sharing injecting equipment accounts The majority of attendees are attached to for 3% of new HIV diagnoses. In the the gay community or are homosexually Read more from ACON’s Aboriginal project in Aboriginal and Torres Strait Islander active. These men can become role models HIV Australia online: http://bit.ly/Explr01 5 population it accounts for 16%. and distribute information to their peers.

32 | HIV Australia, Volume 13, No. 3 The last weekend in October: my Ngalawi Djardi

By Stephen Morgan

My name is Steve Morgan, I am a Attending the Ngalawi Djardi retreat was Gamillaroi man from North West NSW extremely important, in that it gave me the – and like many of my fellow Aboriginal strength to firstly have that conversation and Torres Strait Islander LGBTI with my family, and secondly, it provided community – I left my country town to the support mechanism I needed to reduce gravitate toward the gay scene in Sydney the fear I was consumed with. to seek inclusion and to feel a part of a TheNgalawi Djardi retreat provided community. a therapeutic benefit in that it showed As a newly diagnosed HIV-positive that I was not alone, there was a shared Aboriginal man, I have personally felt life experience that I could tap into and alone and isolated. I had all these fears hearing others speak of their journey around what my diagnosis meant for me reassured me that there was support into the future, how my HIV status would available and that I would be ok. affect my physical, psychological and Now the last weekend in October is a emotional wellbeing, and how it would special time for me and others. It marks Stephen Morgan at Anwernekenhe 6, November 2015. impact upon my family. I had a personal a coming together of HIV-positive fear for my mob and what this all meant Aboriginal people1 in NSW; it provides for them. a safe space to reconnect and gives the I sought advice and information around come along and give it a go, and if I didn’t newcomer a sense of belonging. I highly HIV; I was aware of ACON and the get anything out of it then obviously I recommend it to my brothers and sisters. work they did in the community so they wouldn’t have to return. Stephen Morgan is Aboriginal Health seemed to be the obvious place to start. I To my surprise, what I found was a safe Promotion Officer at ACON. was referred to the Genesis workshop, but space for me to share my concerns, a at that time the program was in its infancy place of support that offered a culturally Endnote and I felt it didn’t offer the kind of support appropriate component that made me 1 In recognition of NSW as Aboriginal land that I needed. feel included. Ngalawi Djardi provided and consistent with NSW Health guidelines informed by consultation with Aboriginal I was encouraged to attend the Ngalawi an outlet for me and others to share what communities, this article refers to ‘Aboriginal Djardi Health retreat that ACON runs for it was like to live with HIV and I gained people’ or ‘Aboriginal gay and homosexually the Aboriginal and Torres Strait Islander more awareness and knowledge of HIV active men’ but is inclusive of Torres Strait HIV-positive community. I was told to and the impacts upon community. Islander peoples.

HIV Australia online features additional content not available in print

The online edition includes additional articles from ACON and Queensland Positive People (QPP), as well as expanded image galleries from Anwernekenhe 6 and our health promotion retrospective.

Read HIV Australia online at: bit.ly/HIV-Australia

HIV Australia, Volume 13, No. 3 | 33 2Spirits: providing a multi-generational, culturally competent approach to health promotion for Aboriginal and Torres Strait Islander communities

By Brett Mooney and Phillip Sariago

A key outcome from the inaugural Anwernekenhe conference was the recommendation to establish an Aboriginal and Torres Strait Islander HIV and AIDS Project in each AIDS Council in Australia. This resulted in the formation of the National Working Party of Aboriginal and Torres Strait Islander gay men, sistergirls and people living with HIV. The job of the working party was to help forge a response to the HIV epidemic threatening Indigenous communities in Australia, which set the foundations for an ongoing community- Tony Coburn, Brett Mooney, Wilo Muwadda, Shannon Jackson, Earl Roses, Brendan Leishman at Condoman relaunch, Brisbane, 2009. driven program to address HIV among Aboriginal and Torres Strait Islander addition, our program addresses stigma, this reason, 2Spirits has involved Elders as communities in Queensland. discrimination and associated violence that key stakeholders throughout its history of The Queensland AIDS Council formed is often aimed at Aboriginal and Torres service delivery. its 2Spirits program in 1996. 2Spirits Strait Islander gay men and sistergirls In 2013, 2Spirits conducted an Elder’s currently consists of a small team of within communities. Project with community Elders drawn Health Promotion Officers – Nikki Hill from communities as far apart as Yarrabah and Arone Meeks based in Cairns, Phillip Health promotion projects Sariago and Brett Mooney in Brisbane in Far North Queensland, down the Our program provides education and Manager/Executive Director, Michael East coast of Queensland to Stradbroke across the life span. The 2Spirits team Scott. The program adopts a ‘whole of Island. The aim of the project was to works closely with young people across community’ approach for providing HIV, develop health promotion through the Aboriginal and Torres Strait Islander sexually transmissible infections (STI) and voices of our Indigenous Elders educating communities in Queensland, delivering blood borne virus (BBV) health education. communities about sexual health, support, a six week sexual health program at the tolerance, acceptance and the importance Queensland is traditionally the home Aboriginal Centre for the Performing Arts of family regardless of sexuality. of many Aboriginal and Torres Strait (ACPA) in Brisbane to first year student Islander peoples. The state has the largest cohort. The program has had a positive Creative approaches are intrinsic to the combined population of both cultures in impact with students, expanding their work of 2Spirits. To increase community Australia, uniquely setting us apart from knowledge on how they view and make awareness in far north Queensland all other states and territories. 2Spirits better choices around their sexual health. communities, art workshops provide is seen by peers as specialists in our Building on this relationship, 2Spirits have individuals another form of learning and approach in developing and maintaining employed students from ACPA to raise expression relating to identity, sexuality, a cultural presence in health-based community awareness focusing on sexual acceptance, inclusion, diversity, respect community engagement, to empower health and regular testing by portraying and sexual health. The artwork produced individuals to make informed choices Condoman, Lubelicious and other from these workshops is used to develop about their sexual health. STI characters at community events in relatable individual and community NAIDOC Week and World AIDS Day. oriented health promotion resources and Over 19 years of service delivery, 2Spirits’ campaigns. specialist program has provided culturally At the opposite end of this age spectrum, appropriate sexual health promotion 2Spirits works with Aboriginal and Torres A partnership with the Brisbane projects in Queensland, and national Strait Islander Elders, through Elder’s Indigenous Media Association (BIMA), campaigns such as Condoman. It is the Forums. As custodians of Indigenous developed a range of radio skits only program in Australia providing a cultures, it is imperative that Elders featuring super heroes Condoman and cultural workforce development project are actively involved in the planning, Lubelicious to educate and normalise that focuses on the health and wellbeing promotion, implementation and evaluation sensitive topics about sexual health, of Indigenous gay men and sistergirls. In of programs and not simply included. For people living with HIV (PLHIV) and 34 | HIV Australia, Volume 13, No. 3 treatments and removing stigma and their sexuality. This can lead to a range of appropriate HIV and STI prevention shame, acknowledging men’s and women’s mental health problems, many of which programs and health promotion in areas business. Adopting radio to get into are related to the issue of acceptance and of high population density for our target homes to educate communities on sexual homophobia from the wider Indigenous group, the far north Queensland regions. health in ways never before utilised, the and non-Indigenous communities. Other Uniquely, 2Spirits modifies its health skits are promoted through airways in the issues of concern relate specifically to promotion strategies to allow for growth south east, central and northern parts of service provision – issues such as such as and empowerment of communities to be a Queensland as well as in Tasmania. access, inclusiveness, confidentiality and part of effective, culturally appropriate and cultural sensitivity by service providers. sustainable sexual health outcomes. Cultural competence training Medical professionals require development 2Spirits has identified gaps in knowledge 2Spirits have identified a significant of their ability to appropriately address the and awareness with health professionals need for cultural competence training unique health needs of gay men, sistergirls, that provide services to gay men, MSM across Queensland. The program brotherboys and lesbians. Widespread and sistergirls who are identified as most invests resources and time within each neglect from past governments has at risk target groups in several national community, building workforce capacity carried through to current generations, and state Strategies including the Third with organisations that provide services leading to poor health that has added National Sexually Transmissible Infections for gay men and sistergirl and brotherboy additional strain on health services that Strategy 2010–2013, Fourth National communities within those communities, are ill equipped in their service models Aboriginal and Torres Strait Islander Blood as well as providing specialised cultural for Aboriginal and Torres Strait Islander Borne Viruses and Sexually Transmissible awareness and workforce development for people. Infections Strategy 2014–2017, National organisations to engage effectively with The effects of past government policies Aboriginal Torres Strait Islander Peoples these populations. that led to the removal of Aboriginal Drug Strategy 2014–2019, National Aboriginal and Torres Strait Islander suicide 2Spirits has developed partnerships with and Torres Strait Islander children from prevention strategy and the Queensland key community organisations through their families continues to present severe Mental Health, Drug and Alcohol Strategic conducting service provider forums. consequences for social and emotional Plan. One such forum, held in Rockhampton, wellbeing; poor mental health leads promoted sexual health and awareness of to unconventional forms of coping Homophobia and acceptance of an Aboriginal and Torres Strait Islander mechanisms that place Indigenous homosexuality continues to be a problem gay men and sistergirls target group in people at risk of further negative health in Australia for Aboriginal and Torres Central Queensland. 2Spirits partnered implications. Strait Islander gay men, sistergirls, with Queensland Health in Rockhampton Intergenerational trauma and grief brotherboys, lesbians and the wider LGBT to assist in setting up the first Central continues to cause Aboriginal and Torres community. The 2Spirits program will Queensland Youth Interagency Sexual and Strait Islander people many health and continue to work with health professionals Reproductive Health Forum in 2014 for social challenges, forcing 2Spirits to adopt and communities to enable Aboriginal service providers to create linkages and strategic approaches in our holistic service and Torres Strait Islander gay men and strategies to reduce rates of HIV and STIs. delivery to ensure our clients receive sistergirls (in particular) to take control of appropriate health care to meet their their health and improve their quality of The 2Spirits team works collaboratively needs. life. with Indigenous and mainstream services to ensure that communities have a greater Looking to the future: addressing Increased funding for more community understanding of key areas of health gaps in funding, knowledge and education and promotion is vital to promotion, delivered in an appropriate awareness strengthen 2Spirits’ current workforce way. 2Spirits has collaborated with capacity for our Queensland wide brief, Hepatitis Queensland and the Torres Funding has been challenging for 2Spirits, and to extend our service delivery to Strait Islander community to produce a particularly in an environment where address mental health, drug and alcohol series of hepatitis brochures in the Creole there are increasing rates of STIs and use, suicide and lesbian health for this language (the primary binding language HIV among Aboriginal and Torres Strait at risk target group that continues to spoken throughout the Torres Straits). Islander gay men and other men who have be presented with discrimination and 2Spirits revamped Condoman, the sex with men (MSM), and sistergirls in inequities within service provision, Queensland. longest running sexual health campaign in legislation and society. Queensland to include the Torres Strait Currently 2Spirits consists of three full- Reference colours into his costume, making the super and one half-time health promotion 1 Lavarch, L. (1997). Bringing Them Home hero inclusive of two traditional cultures in officers that provide service to the whole Report. Commonwealth of Australia, Queensland. mainland state of Queensland and support Canberra 17 Islands of the Torres Strait across Mental health and wellbeing urban, rural and remote settings. To be Many Aboriginal and Torres Strait more effective in our current workforce Brett Mooney and Phillip Sariago are Health Promotion Officers, 2Spirits Islander gay men and sistergirls routinely capacity, additional funding would be Program/Queensland AIDS Council. face a variety of challenges related to beneficial to develop more culturally

HIV Australia, Volume 13, No. 3 | 35 Improving treatment outcomes for HIV-positive Aboriginal and Torres Strait Islander people at Cairns Sexual Health using the treatment cascade as a model

By Morgan Dempsey, Mary Elliott, Carla Gorton, Joanne Leamy, Sara Yeganeh and Karly Scott

This article reflects the work of the multidisciplinary team of Aboriginal and 90 Torres Strait Islander health workers, 80 N=22 doctors, pharmacists, psychologists and N=20 70 nurses at Cairns Sexual Health to improve N=16 the treatment outcomes for HIV-positive 60 Aboriginal and Torres Strait Islander 50 people. Our service uses the treatment cascade as a model to gauge our success 40 in improving health outcomes for people 30 living with HIV, as it describes the stages of health care that people living with HIV 20 pass through, from diagnosis through to 10 viral suppression. 0 Our clinic is fortunate to have an onsite % on ARV % undetectable % engaged in care pharmacy with an HIV Pharmacist and Pharmacy Assistant. Cairns Sexual Health August 2014 Australia-wide usually sees 12–13 new cases of HIV each year, with 1–2 cases per year among Figure 1: Comparison of data on Aboriginal or Torres Strait Islander people living with HIV in North Queensland Aboriginal and/or Torres Strait Islander (August 2014) and people living with HIV Australia-wide (2014).1 people. However, in July 2014, our service began to see a spike in the number of new cases of HIV among Aboriginal and/or Figure 1 compares our August 2014 figures cascade, rather than progress in a linear Torres Strait Islander men who have sex on engagement, treatment and viral load manner (see Figure 2, overleaf ). with men (MSM). This was the catalyst status against Australia-wide data on people Although we perceived our service that drove our team to question whether we living with HIV. to engage this group well, the audit really knew our epidemic. By the end of 2014, Cairns Sexual Health highlighted that this cohort appear to As a team, we believed that our service had 15 new cases of HIV, with 6 (40%) move in and out of the treatment cascade adequately met the needs of our clients in identifying as Aboriginal and/or Torres depending on what is happening in their terms of engagement to service, initiation Strait Islander men who have sex with men lives at any given time. We found that and adherence to antiretroviral (ART) (MSM). The audit also found that of these individuals may or may not engage in HIV treatment with achieved undetectable viral new cases, 50% where diagnosed by GP care following diagnosis; may or may not load (VL). In 2014, our Intern Pharmacist services and 33% by Aboriginal or Torres begin ART; may or may not remain on conducted an audit (with approval from Strait Islander health care services. ART; may disengage; and may re-engage Cairns Hospital and Health Service Ethics when they become ill or are hospitalised. Committee) of Aboriginal and Torres Assessing the treatment cascade Many reasons for this movement seem to Strait Islander people living with HIV, who We were interested to know how this be based around the social determinants were attending Cairns Sexual Health. A cohort of people measured on the HIV of health such as culture, income, housing, key question asked in the audit was, ‘Once treatment cascade. The cascade is often education, place of birth, social exclusion, clients reach undetectable, do they stay presented as linear, where a person receives and the wider forces and systems that there?’ 4 a positive HIV test result; is linked to care; impact on daily life. The audit identified 25 HIV-positive begins antiretroviral treatment; maintains We observed that the barriers5 or causes of people who identified as Aboriginal and/ engagement with care and ART; and leaks6 from the treatment cascade included: 2 or Torres Strait Islander. Of this cohort, achieves viral suppression. However the clinic entrance; lack of transport; 3 22 people were receiving ART, 16 were Sprague and Simon (2014) describe how homelessness; lack of family awareness, no undetectable and 20 were engaged in care. people move in and out of the treatment support; HIV literacy; recreational drug use;

36 | HIV Australia, Volume 13, No. 3 family and cultural responsibilities; hidden HIV Linkage to HIV Retention in HIV Re-engagement in nature of taking ART; stigma; lack of testing care interventions care interventions HIV care interventions Unaware finance; work; and new diagnosis. In long- of HIV term, status. Clients also stated: Linkage to HIV Retention Re-engagement continuous Not tested n medical care in care in care HIV ‘I just wanted to run away’ or never n medical ‘Drugs were awful’ received care n ‘Am sleeping on couches’ results. n ‘I need to get some food now’ Aware of Received Lapse n HIV status initial HIV in HIV ‘I live in 2 houses’ n but not in HIV Receiving medical Received medical Resumed ‘I need to feed the children’ medical care care visit care n medical care first set of medical care ‘I have a Pharmacy bill’ (not referred but not follow-up after lapse n to care, did ‘I live with other people’ HIV care HIV medical n not attend care visits ‘I cannot tell my family’ initial visit) n ‘Family work at health service’. Figure 2: Treatment Cascade (Sprague and Simon 2014)7 When we looked at our service, we identified our own barriers, including: n ‘But why won’t he just take his pills?’ 120 n ‘Disruption’ to clinic flow n ‘He is my client’ n N=27 N=29 Inflexibility of service model 100 n N=29 For missed appointments, it becomes N=25 a fine line between following up or 90 stalking! n Lack of funding to culturally appropriate NGOs 60 n Lack of social infrastructure Percent n Need for social workers. 40 Our service continued to monitor how this small group of HIV-positive people move in and out of the treatment cascade 20 over a 12-month period (see Figure 3). As at September 2015, our service has 29 0 Aboriginal and/or Torres Strait Islander August 2014 January 2015 July 2015 September 2015 HIV-positive clients, 27 of whom are male (all MSM) and 2 female. On ARV Undetectable viral load Engaged in care Over the 12 months we have developed our knowledge and insight into barriers Figure 3: Treatment cascade at Cairns Sexual Health over time, from 2014–2015. affecting engagement of Aboriginal and/or Torres Strait Islanders with HIV care. As a team we have actively used this insight to and being ostracised in community are through the front door, which is put in place enablers to health care access, contributing factors as to why Aboriginal labelled ‘Sexual Health’ n which has resulted in a dramatic shift from and Torres Strait Islander people are Improving links between hospital 80% to 100% of the cohort being engaged reluctant to engage in health services for and clinic, with clinic staff and HIV in care; with currently 89% on ART and HIV treatment. While the Aboriginal Pharmacist visiting people when 69% undetectable. and Torres Strait Islander health workers they are admitted to hospital. Service In our experience, the enablers for engaging followed cultural protocols, we sometimes includes providing information and maintaining Aboriginal and Torres found that young men preferred to engage about the Sexual Health Clinic, and Strait Islander HIV-positive people in care with an older female health worker. providing support for people newly are many and varied, and we needed to diagnosed around HIV and ART Some examples of enablers to health care n Establishing a pharmacy fee waiver remain flexible. access within our service: n for ART to clients with financial Aboriginal and Torres Strait Islander Rearranging the waiting room so that problems health workers have been central to the chairs face the window rather than n Providing increased flexibility of facilitating engagement, access to services, the entrance, improving anonymity scheduling appointments education and support, as they work in and reducing shame n n Provision of transport to and from a holistic way. Cultural protocols, men’s Utilising the staff back door entrance appointments and women’s business, stigma, shame rather than bringing reticent people

HIV Australia, Volume 13, No. 3 | 37 n As a service, we became better at note that people do not maintain an 2 amfAR. (2013, December). The HIV Treatment Cascade [fact sheet]. Retrieved ‘expecting the unexpected’ undetectable viral load forever. n from: www.amfar.org All members of the multidisciplinary Care by a multidisciplinary team of 3 Sprague, C., Simon, S. (2014). Understanding HIV care delays in the US team are crucial to providing holistic Aboriginal and Torres Strait Islander care South. Int. Journal for Equity in Health, n health workers – including pharmacists, 13(28). doi: 10.1186/1475-9276-13-28 We provide information about nurses, psychologists, and doctors – is 4 Braveman, P., Gottlieb, L. (2014). The social different staff, which allows clients to essential. Each team member needs to get determinants of health: it’s time to consider the causes of the causes. Public Health choose who they would like to see. to know the whole person, rather than This has allowed clients to develop Reports, Supp 2 (129). focusing only on HIV. Clinical services 5 Yehia, B., Stewart, L., Momplaisir, F., Mody, positive relationships with particular also need to provide flexible models A., Holtzman, C., Jacobs, L., et. al. (2015). staff of care. Our experience illustrates the Barrier and facilitators to patient retention in n HIV care. BMC Infectious Diseases, 15(246). SMS was used to engage clients importance of dismantling barriers as they initially, and often we could have SMS doi:10.1186/s12879-015-0990-0 arise, in order to keep people engaged 6 Ayala, G., Makofane, K., Santos, G., Arreola, conversations prior to meeting the in care. S., Hebert, P., Thomann, M., et al. (2014). HIV client. This gave people a chance to get treatment cascades that leak: correlates of to know us slowly and engage on their It seemed to us that those requiring drop-off from the HIV care continuum among terms. It also meant we could ascertain most support to engage in care, take men who have sex with men worldwide. antiretroviral treatment and remain in care Journal of AIDS & Clinical Research, 5(8). when it suits them for us to call so 7 Sprague, C., et al. (2014). op cit. they don’t use their own phone credit. were diagnosed within the last two years. SMS is also used to remind clients of This is useful information for services to their appointments. be aware of when caring for Aboriginal Morgan Dempsey is Senior Health n We spent time supporting non- and Torres Strait Islander people who are Worker at Cairns Sexual Health. Mary Elliott is Pharmacist at Cairns Sexual clinical staff to understand why this newly diagnosed with HIV. Health. Carla Gorton is HIV, Sexual group of people needed extra support. References Health and Hepatitis Coordinator at 1 Templeton, D., Wright, S., McManus, H., Key learning outcomes Cairns Sexual Health. Joanne Leamy Lawrence, C., Russell, D., Law, M., et al. is Clinical Nurse Consultant (CNC) (2015). Antiretroviral treatment use, co- Contact Tracing at Cairns Sexual This work has improved our knowledge morbidities and clinical outcomes among of the HIV treatment cascade and of Aboriginal participants in the Australian Health. Sara Yeganeh and Karly Scott factors that enable clients to maintain HIV Observational Database (AHOD). BMC are Pharmacists at Cairns Sexual engagement in care. It is important to Infectious Diseases, 15(326). Health.

Volume 12 • Number 3

Respect and resilience: shaping the response to HIV AIDS 2014 SPECIAL EDITION and STIs among Aboriginal and HIV and the enabling environment: Torres Strait Island communities Australia and our region Volume 12 • Number 2 HIV, activism and the arts Volume 11 • Number 3

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38 | HIV Australia, Volume 13, No. 3 It’s all about relationships: a story from the frontline about the ups and downs of managing HIV in remote Australia

By Marisa Gilles

Since 1994, a small cohort (approximately local team), these specialists visited compared to other services looking after 20 people) of heterosexual HIV-positive the community three times a year. Not people living with HIV, so this year I carried clients in remote Australia has been only did this mean that the clients saw out a review of the outcomes. I looked at managed by a team of health care providers. a familiar face if they had to go to the parameters associated with successful delivery The philosophy of this service is not only to hospital for specialist treatment, it also of the service – including survival, viral loads, deliver high quality clinical care, but to have meant that the local team learnt about the CD4 counts, pregnancy outcomes, as well as a culturally appropriate, holistic approach, latest treatments for managing HIV. reviewing the investment of time required to achieve these results. with strong social and practical support. I have been involved in the care of these The initial team consisted of two people since 1998; half of the original cohort, Of the original cohort, all of those who Aboriginal health officers – one male and all diagnosed as HIV-positive between 1994 have survived are still closely connected to one female. Both were well respected in and 2002, are still alive and well. the service and 93% are on antiretroviral their community and had strong personal That we have not been able to prevent every treatment. Despite what might have been links with the clients – to the extent that death in the original cohort saddens me, expected in a cohort of people with complex the female health officer was known especially when I know that we had the social situations, adherence with medication by them as ‘aunty’. Other members of tools to keep them alive. I still agonise about regimens has been good; 73% have the team were a nurse, a doctor, a case why I could not persuade some clients to undetectable HIV viral loads, 67% have manager and a secretary. The latter did take their medication. One in particular – a CD4 counts greater than 500, and 87% have not limit her role to purely administrative young girl who was infected at the tender a CD4 count greater than 250. duties, but also responded to unexpected age of 16 – found her diagnosis just too There have been only two HIV-positive requests for transport, accommodation and hard to absorb. Despite accompanying her babies out of 24 pregnancies among the companionship when required. to the tertiary hospital to support her to cohort; one of these babies was born Clinical care of the cohort is shared have lifesaving treatment, she rejected all before the status of the mother was known, between this local team and a specialist care and died just after her 21st birthday. preventing any antiretroviral prophylaxis immunology team based at a tertiary This tragic and unnecessary loss of a vibrant during her antenatal period or at delivery. hospital. In the early days, while young life will stay with me forever. This audit demonstrated that, when such relationships were being formed (both I needed to know if our approach was care is provided, excellent outcomes can be with the clients and also with the working and how well we had performed achieved.

HIV Australia, Volume 13, No. 3 | 39 But this is a story about people and a tubal ligation after a miscarriage, wanted they are comparable to results seen among relationships, not just percentages. As it reversed five years later when she was non-Aboriginal people living with HIV. you might expect after all this time, in a new relationship and successfully The management and selection of these people have become more than just on treatment with an undetectable viral antiretroviral medication has changed over individuals living with HIV – they have load. Normally this procedure would time but our commitment to maintaining become my friends. They all have my cost several thousand dollars, but the a close personal relationship with this mobile telephone number and know that doctor looking after her advocated for the cohort of clients has not. Although they can call me if they find themselves in operation to be done free of charge. She challenges to obtaining ideal outcomes situations that require urgent resolution. now has a beautiful daughter in her life persist, I firmly believe that our holistic and is likely to live to see her get married For example, someone might need to fly to service, characterised by developing and and have children. the city to be with a close relative who has continuing relationships with the clients, is been admitted to hospital, or they might The majority of the time our contact with the reason we have complete engagement need a hotel room for a night or two when the clients is about their social needs or of our cohort and have achieved positive their family is getting too much, or they transport, not medical appointments. outcomes in 73% of cases. might need to arrange special funding to The demand on our services varies from This model of care, although labour buy a fridge, air conditioner or heater. At individual to individual and from time to intensive, delivers results similar or better other times people have asked for a letter time – ranging from four or five face-to- than those seen internationally in hard- of support for housing issues or a reference face contacts a year, to almost daily contact to-reach populations. It demonstrates for a job. And sometimes they just call to when they need someone to support them that equal outcomes can be achieved talk to someone they trust when they are through a difficult patch. when equitable services are provided in a frightened about what is happening to There is often confusion about what culturally appropriate manner. their bodies. it means to deliver equal or equitable For me, despite the challenges and Back in 1994, it was felt that HIV-positive services. Far from providing the same frustrations, working with these people women should not have babies, as there care to all our clients, we deliver targeted, has been an inspiring journey and an was a high risk their children would be culturally secure services to a small cohort experience that I wouldn’t have missed for born with HIV and that mothers would of Aboriginal people living with HIV. The the world. die before their children had grown up. results achieved have been good – indeed One woman, who was ‘persuaded’ to have

40 | HIV Australia, Volume 13, No. 3 Strengthening community capacity to maintain low levels of HIV among Aboriginal gay men and other men who have sex with men (MSM), sistergirls and brotherboys in South Australia

By Wills Logue

Introduction Respect Test campaign – an HIV and GMHSA; design and distribute a Indigenous people globally remain sexually transmissible infections (STI) community survey to identify the gaps in at higher risk of HIV and sexually testing campaign targeting Aboriginal services for gay men and men who have transmissible infections (STIs) than South Australians, irrespective of their sex with men; ensure HIV education for non-Indigenous people. In Australia, gay gender or sexuality. Respect Test was the Aboriginal people is culturally appropriate; and other men who have sex with men first locally produced campaign in South and encourage the blood borne virus are disproportionately affected by HIV, Australia that saw stakeholders work in (BBV) and STI sector in South Australia and, as a result, HIV transmission among partnership and establish meaningful to acknowledge the necessity for an this population has been well researched; relationships with community members Aboriginal, Gay Men, MSM, Sistergirl and however, there is little known about HIV to co-develop and design a culturally Brotherboy Action Plan. appropriate health promotion campaign. transmission among homosexually active Online survey Aboriginal and/or Torres Strait Islander The campaign received community Methodology (hereafter referred to as Aboriginal) endorsement in metropolitan and regional South Australian Aboriginal communities. men. Even less is known about how As part of the community consultation cultural factors specific to the Aboriginal Gay Men’s Health South Australia process, GMHSA has worked with a population may influence the sexual (GMHSA) – a program of Relationships reference group of community members 1 behaviours of this population group. Australia, South Australia (2013–June consisting of gay men, MSM, sistergirls, 2015) – recognised the role Aboriginal James Ward suggests that the stable HIV brotherboys and Aboriginal health workers and Torres Strait Islander community incidence experienced by Aboriginal to develop a survey using the online members and community-based people should be celebrated with platform, Survey Monkey. 2 organisations such as the Moolagoo optimistic caution. He asserts that the The survey was open for gay, MSM, Mob could play in strengthening the success in keeping HIV prevalence low sistergirls and brotherboys community profile of community identity in health can be attributed to community capacity responses from 15 June–26 July 2015, promotion programs. A strong sense of building and developing and delivering and was promoted through community community identity was central to the culturally appropriate health promotion health networks and online social success of the Respect Test campaign in messages. These include the Condoman networks including Facebook, Moolagoo South Australia, which focused on raising campaign, which gained wide support Mob, Aboriginal Health Council SA, community knowledge on issues regarding across the Aboriginal community, by and various other regional networks and sexuality, HIV and STI transmission, and employing a sexual health message that mainstream services. The results of the prevention strategies. was free from embarrassment and ‘shame’.3 survey will assist in the future development Community participation, the inclusion of a culturally appropriate Health and Since August 2015, SAMESH of Aboriginal sexual health workers in Wellbeing Action Plan to address the (South Australian Mobilisation and communities, and an inclusive policy needs of Aboriginal gay men and other Empowerment for Sexual Health) and partnership approach are critical to men who have sex with men, sistergirls has delivered a range of services in ensure an escalated epidemic does not and brotherboys. South Australia – including campaign 4 occur. GMHSA recognised its failure development, counselling, peer support, Participants to develop an ongoing relationship and workforce education, rapid HIV testing, partnership with Aboriginal gay men in Survey responses were received from 25 and support for people living with HIV – South Australia; consequently, an invitation Aboriginal community members; 85% of and is committed to ongoing work with to establish a reference committee was respondents identified as Aboriginal and Aboriginal and Torres Strait Islander extended to Aboriginal gay men, men who 15% as both Aboriginal and Torres Strait communities. have sex with men (MSM), sistergirls and Islander. Participants were spread across The previous Gay Men’s Health program brotherboys, and community workers from all age groups, but the largest age group of the AIDS Council of South Australia the South Australian Aboriginal LGBTIQ (41.7%) were people aged 25–40 years. (2013) partnered with the Aboriginal (lesbian, gay, bisexual, transgender, intersex Over half (59.1%) of the participants were Health Council of South Australia and and queer) community. The committee’s female, 27% were male, 9% identified as other key stakeholders to develop the function was to provide expertise to sistergirl, and 5% identified as other.

HIV Australia, Volume 13, No. 3 | 41 Sexuality and relationship status 0% 5% 10% 15% 20% 25% 30% 35% 40% Half of the participants identified as heterosexual, 27.3% as gay, 9.1% as Family 36% lesbian, 9.1% as bisexual and one person as Work 32% pansexual. Most (77.3%) participants were single, 9.1% were married and 9.1% have Study 16% multiple partners. Most (68%) said they Sexuality 12% would like to have sex with males, 16% with females, 8% with transgender and 8% Relationship 12% either with sistergirls or brotherboys. Discrimination due to gender 12% Where do they live? Violence 8% The majority of the respondents (80%) were currently living in the city, and Discrimination due to sexuality 8% most had originally come from outside metropolitan areas (50% from rural areas, Figure 1: Reason to move to the city. and 20% from remote areas). When asked about the reason to move to the city, the main reason was family (36%), followed by 0% 5% 10% 15% 20% 25% 30% 35% work (32%) and study (16%). Overall, 12% reported that they moved due to gender- Counselling 32% related discrimination, and 8% reported HIV testing STI screenings 24% sexuality-related discrimination/violence as a reason to move from a rural or remote Sexual health workshop 20% location (see Figure 1). Campaigns 20% Access to sexual health services and the Gay Men’s Health service in SA Drug alcohol services 16%

Most (73.7%) respondents have access to Volunteering 16% sexual health services in South Australia. Other workshops 12% Others said they did not go to sexual health services for a range of reasons Online counselling 8% including: ‘I don’t know where to go’, ‘[I] see the local GP instead’ and ‘There was no Figure 2: Expectations of service provision at Gay Men’s Health Service. necessity’. Two out of six gay men who had visited the Gay Men’s Health Service reported Barriers and availability of sexual health complex sexuality issues. This included that they have other alternative services in resources for Aboriginal and Torres social media/online information and convenient places such as their GP, Clinic Strait Islander communities campaigns and referrals relating to sexual 275 or services operating in rural areas. When we asked whether there are enough health. The respondents also saw benefit in Those participants who did not identify sexual health resources for Aboriginal increasing community awareness through as gay thought that Gay Men’s Health and Torres Strait Islander gay men, men print media, such as pamphlets, brochures, was a service only for the gay community. who have sex with men, sistergirls, and posters, and booklets. Therefore, a communication strategy would brotherboys, most participants (87%) Most participants considered the main need to be developed around the service to stated ‘No’. They also named the types of barriers to accessing sexual health attract potential clients who do not identify resources that they would like to access. resources as a lack of understanding within as gay but who are men who have sex with rural communities and remote health men, sistergirls or brotherboys. Some respondents said they would like services about issues that affect Aboriginal to see more resources and promotional Services accessed at Gay Men’s Health gay men, men who have sex with men, material that would broaden community sistergirls and brotherboys. Irrespective of whether they had attended engagement and build connections STI check-up and HIV status the Gay Men’s Health Service, we asked with the wider community, and increase participants what services they would community awareness about the problems Most participants (89.5%) had received expect to receive at the Gay Men’s Health faced by some Aboriginal people related an STI check-up within the last year; 26% Service. Around one-third (32%) said to sexual identity and sexuality. Nine said they had accessed an STI check- counselling, followed by HIV testing/STI participants answered the question, calling up within the last six to twelve months, screening (24%), sexual health workshops for more resources to be developed, while 21% said they have had check-ups (20%), and health promotion campaign and more education opportunities for more recently, that is, within the last material (20%), as shown in Figure 2. Aboriginal health organisations to explore month to six months. Only one out of ten

42 | HIV Australia, Volume 13, No. 3 respondents (10.5%) had never had an STI check-up. 5% 10.5% of participants said they were HIV 11% positive, and 21.1% said that they did not 16% know or would prefer not to reveal their Positive HIV status; the majority of respondents (68.4%) reported ‘negative’ HIV status (see Negative Figure 3). I don’t know Issues affecting Aboriginal and Torres Strait Islander gay men, MSM, sistergirl I prefer not to say 68% and brotherboys in South Australia

All participants were asked to name the three main issues affecting Aboriginal and Torres Strait Islander gay men, men who have sex with men, sistergirls and Figure 3: Self-reported HIV status. brotherboys in South Australia. Over half of respondents (56%) reported lack of acceptance by the wider community/ 0% 10% 20% 30% 40% 50% 60% family as the main issue, followed by lack of support/education about sexual health Lack of acceptance by wider community/family 56% (28%), safety issues (20%) and the problem Lack of support/education – sexual health 28% of accessing appropriate health and social services (12%) (see Figure 4). Safety issues 20% Most of the respondents commented that Accessibility issues to appropriate health 12% they felt shame, due to a lack of acceptance and social services by the wider community, and even from Family/family obligations 12% their families. Therefore, they considered that proper education and greater Homelessness 8% awareness about their complex sexual needs and sexuality-related issues was Figure 4: Three main issues affecting Aboriginal and Torres Strait Islander gay men, MSM, sistergirls and brotherboys necessary among the wider Aboriginal and in South Australia. Torres Strait Islander communities.

What did we learn?

The survey results demonstrate that despite The survey overwhelmingly highlighted to develop a suite of culturally appropriate stable rates of HIV among Aboriginal and the overall lack of acceptance and the sense sexual health training packages for regional Torres Strait people in South Australia, of belonging by the wider community and rural Aboriginal health workers and this population remains at increased risk and families which resulted in individuals community leaders. feeling a sense of ‘shame’. This frequently from HIV and STIs. Ongoing community References capacity building and education – resulted in the need for counselling services. Individuals strongly believed that 1 Lawrence, C., Rawstorne, P., Hull, P., Grulich, including culturally appropriate health A., Cameron, S., Prestage, G. (2006). Risk messages – would assist to narrow the gap wider community education would result behaviour among Aboriginal and Torres Strait in services for Aboriginal gay men, men in a greater awareness about their complex Islander gay men: comparisons with other who have sex with men, sistergirls and sexual health needs and sexuality-related gay men in Australia. Sexual Health, 3(3), issues. The survey highlighted the need for 163–167. brotherboys, especially for those residing 2 Ward, J., Costello-Czok, M., Willis, J., in rural and remote regions of Australia. development of various resources for use Saunders, M., Shannon, C. (2014). So by rural and remote health services and far, so good: Maintenance of prevention Campaigns addressing issues of ‘shame’, community members. is required to stem HIV incidence in aimed at families within the wider Aboriginal and Torres Strait Islander Aboriginal and Torres Strait Islander In response to these findings, SAMESH communities in Australia. AIDS Education and community, would be highly beneficial has reinstated the Aboriginal Gay Prevention, 26(3), 267–279. doi: 10.1521/ Men’s, MSM, Sistergirl and Brotherboy aeap.2014.26.3.267. in increasing community awareness 3 ibid. relating to HIV and STI transmission Reference Committee that was formerly 4 ibid. and prevention strategies. Further targeted positioned at GMHSA. SAMESH has health promotion encouraging access to entered into a partnership with the Close sexual health services would clearly result the Gap team – a program of SHine SA – Wills Logue is Team Leader at SA in an overall increase in testing rates and to recruit an Aboriginal gay man to further Mobilisation and Empowerment for Sexual Health (SAMESH) reduction in risk. engage with the reference committee and

HIV Australia, Volume 13, No. 3 | 43 ‘This Way in the Right Direction’: Itha Mari – The Aboriginal Health and Healing Group at the Kirketon Road Centre

By Christine Kerr and Rosie Gilliver

The Kirketon Road Centre (KRC) is a primary health care facility based in Sydney’s Kings Cross, established in April 1987, as a result of a recommendation of the New South Wales Parliamentary Select Committee on Prostitution. KRC provides prevention, treatment and care for HIV/ AIDS and other transmissible infections among ‘at risk’ young people, sex workers and people who inject drugs, as well as innovative outreach programs to youth services, strip-clubs and sex-parlours in the local area. In addition, the KRC conducts nightly mobile outreach to those living and/ or working on the streets of East Sydney, Woolloomooloo and Darlinghurst. Many of the clients engaging with HIV prevention services in these local inner- city settings identify as Aboriginal and/ Poster for Smoking Ceremony held at the Medically Supervised Injecting Centre (MSIC), November 2008. or Torres Strait Islander people. Indeed, in 2015, almost 10% of KRC’s clinical work and 37% of the clients enrolled In 2003, a further needs analysis was collaboration with clients, could identify in its Opioid Substitution Treatment undertaken with Aboriginal clients barriers, work together to dismantle harm reduction program identified as accessing KRC to further identify specific them, and improve access to the service. Aboriginal, Torres Strait Islander or both. needs of the community. It was apparent The importance of Itha Mari lies in This compares favourably to the latest that while some Aboriginal clients were empowering clients to participate in census data, which shows Aboriginal and visiting KRC on a daily basis for the Opioid decision making relating to their health Torres Strait Islanders make up only 1.3% Substitution Treatment program, others outcomes, as well as in facilitating their of the local government area population.1 were irregularly attending for drug and reconnection to their countries, their Within this population group, there is a alcohol support and drop-in. As a group, cultures and their languages. similar prevalence of HIV as the general 2 the needs analysis identified that Aboriginal population at KRC. Additionally, 50% of Since the program’s conception, Itha clients were reticent about accessing further KRC’s services are provided to people with Mari has included weekly luncheons with services, especially sexual health services. a history of injecting drug use, and of those, Aboriginal Elders and guest speakers, 50% are living with chronic hepatitis C. In 2004, the Itha Mari Aboriginal Health targeted health promotion activities, and Healing Group was established in cultural excursions, literacy and art projects Since its establishment, 10–15% of KRC’s response to clients’ requests to establish an and, more recently, storytelling. These clients have identified as Aboriginal Aboriginal group that could meet regularly groups have all been very different, but and/or Torres Strait Islander (hereafter to voice and focus on their health needs all held common goals: promoting and referred to as Aboriginal people). In and other concerns. Itha Mari, from the encouraging confidence and self-esteem, 1996, KRC undertook a needs analysis Barkindji language, meaning, ‘this way sharing knowledge and experience, giving in acknowledgment of the specific in the right direction’ was proposed by a expression to individual needs, exploring health, social and cultural needs of this Barkindji woman who attended the group, feelings and preferred futures, reflecting client group, the findings of which and was unanimously agreed on by all on themselves and their communities, and recommended the appointment of an participants as a true reflection of their rebuilding connections. Aboriginal Health Educator. Since expressed goals. then, KRC Aboriginal Health Project Throughout the duration of the program, Officers have fulfilled an important health Itha Mari supported Aboriginal clients there have been many collaborative education and community outreach role, who were experiencing challenges related community activities undertaken by Itha building links in the local Aboriginal to drug use, general medical and psycho- Mari, including the creation of a beautiful community to increase access to KRC social health and wellbeing. Clients panel for the inaugural Aboriginal and for HIV prevention, medical and psycho- were encouraged to play an active role Torres Strait Islander AIDS Memorial social services. within Itha Mari so that KRC staff, in Quilt, participation in cultural field trips 44 | HIV Australia, Volume 13, No. 3 and art sessions, the development of a The project was developed after a KRC staff literacy program in collaboration with member was asked by a client of Itha Mari Tranby Aboriginal College, contributions to help her learn to read and write ‘well to the National Drug Strategy through enough to fill in a form’. Education is one Koori Radio3 and community celebrations of the strongest indicators of health success. during NAIDOC Week – including the KRC, as a comprehensive primary health annual smoking ceremony and KRC care service, and Tranby, as Australia’s Koori Film Festival. The specific health oldest independent Aboriginal adult promotion activities coordinated by education provider, jointly applied for a KRC for Koori clients have included network model based on the shared goals of women’s and men’s health groups, mental strengthening the skills and improving the health awareness, sexual health and drug capacity of Aboriginal clients. and alcohol focus groups, healthy liver Tranby’s and KRC’s aim was to improve discussions, harm minimisation and the ongoing development of Aboriginal healthy relationships sessions. communities’ capacities through: Three significant cultural projects in improving literacy skill levels of Aboriginal which KRC clients have participated are clients; strengthening partnerships described in greater detail below. with Aboriginal clients, as stakeholders Aboriginal and Torres Strait with government and non-government Islander AIDS Memorial Quilt agencies; increasing the level of awareness of Aboriginal issues as they impact In 2004, Itha Mari clients were invited on health and wellbeing; encouraging to create a panel that would become an participation within a secure and safe integral part of the inaugural Aboriginal framework to further enhance and build and Torres Strait Islander AIDS individual confidence and self-esteem; and Memorial Quilt. The clients participated increasing opportunities for consultation in this project with much respect and between clients and educational and health commitment and developed the design to: providers to develop programs that directly ‘... represent all of us, protected by the reflected their needs. The project was an Rainbow Serpent whose eggs represent outstanding success, not just for the gains new life and rebirth. The boomerangs in literacy but for the gains in clients’ self- 5 in the four corners of the panel represent esteem and self-determination. the return of the spirits to the Rainbow Storylines Serpent’s eggs. The smoke from the burning gum leaves is our spirit and our healing. At the start of 2015, a new initiative It also represents those who have passed within Itha Mari was introduced. The on. The coloured hands and feet represent Storylines initiative was based on the our togetherness and together, we stand. evidence-based practice of traditional The flag represents our proud nation. The yarning circles being utilised as a Itha Mari poster, incorporating spirit animals/totems willy-wagtail and the symbol of the AIDS therapeutic tool for clients to engage with with vibrant colours, reflecting powerful images virus represent the bad news AIDS brings. one another in order to reconnect with of country. The central yellow sun represents a brand their countries, cultures and languages. new day and hope. The river running These reconnections and strengthening of implements.7 All these shared activities across the panel represents our different belongings in turn have had the capacity were invaluable for clients who had been paths and different tribes joined together. to improve health and wellbeing.6 raised within urban environments and who There is no beginning and there is no end felt that they had lost many connections to The Aboriginal Elder David Wright, who to this river … WE SURVIVE.’ 4 their lands, their cultures and communities. worked as an Aboriginal Park Ranger with KRC clients attended the inaugural National Parks and Wildlife, attended this Within Itha Mari, Storylines clients unfolding of the quilt at La Perouse with Itha Mari Storylines Group and led the shared a range of narratives which great pride at being present to honour yarning with tales of his work, his culture differed in type and purpose, but which those for whom the quilt was created and and his family, stressing the importance of could clearly provide participants with for whom deep loss was felt. good health and the links between health a mechanism to manage current life Literacy program and Aboriginal self-esteem and Aboriginal transitions and recurring unresolved issues community benefit. Uncle Dave also associated with loss, grief and trauma. In In 2007, Tranby Aboriginal College and spoke of his broader life experiences and supporting clients to build connections KRC, partially funded by the Indigenous the importance of connection to country to countries, cultures and communities, Coordination Council, delivered a Literacy and culture. He shared and educated utilising the tradition of storytelling, Itha program to KRC clients each fortnight clients through his knowledge and skills Mari allowed clients to share experiences over a period of ten months. with bush tucker and bush tools and of resilience, strength and courage. HIV Australia, Volume 13, No. 3 | 45 Itha Mari has been supported and publicised through the publication of exquisitely beautiful fliers and posters developed in conjunction with the clients attending Itha Mari. At the clients’ requests, these posters have incorporated their spirit animals/totems with vibrant colours reflecting powerful images of country. As well as empowering clients to access KRC, Itha Mari has been strongly linked to workforce development of KRC staff. Itha Mari has provided a platform for cultural competency and cultural respect training and has also kept Aboriginal clients’ health issues at the forefront of KRC’s service development and strategic planning as well as fulfilling the wider NSW Health strategies to improve health outcomes for Aboriginal peoples. Significant challenges have presented as Itha Mari has evolved. However, with the determination of the participants and ongoing staff input and support, these challenges have been met with innovation and commitment, unfortunately though, not always with success. The clients attending Itha Mari reflect the high rates of mortality and morbidity within the broader Aboriginal community. These statistics continue as a shameful reminder of the continuing social, economic and political injustices with which Aboriginal peoples are faced daily. For KRC to continue to provide innovative and relevant programs for Aboriginal clients, there is ongoing commitment, KRC Sorry Day march flier, May 2008. assessment and evaluation of each of them, whether delivered within KRC as a health promotion activity or on outreach Kirketon Road; Gadigal people of the peoples that traditionally occupied modern- to The Wayside Chapel or the Medically day New South Wales and Victoria. Supervised Injecting Centre. Eora nation, on whose land Kirketon Road 4 November 2007, Itha Mari participants’ Centre staff work; and all staff and clients description of KRC panel contribution to In conclusion, an affirmative program such of the Kirketon Road Centre. inaugural Aboriginal and Torres Strait Islander as Itha Mari that is client-centred and Quilt. promotes client self-determination, allows References 5 Black, S., Ndaba, A., Kerr, C., Doyle, B. an environment of Aboriginal clients’ (2012). Methadone, Counselling and Literacy: 1 Australian Bureau of Statistics. (2011). A health Literacy Partnership for Aboriginal confident participation in the service Australian Census 2011. Community Profiles. Clients. Literacy and Numeracy Studies, and the opportunity for positive health Retrieved from: http://www.censusdata. 20(1), 45–62. outcomes. For staff working under the abs.gov.au/census_services/getproduct/ 6 Bessarab, D., Ng’andu, B. (2010). Yarning census/2011/communityprofile/LGA17200?o About Yarning as a Legitimate Method in banner ‘health for all’, Itha Mari remains pendocument&navpos=220 Indigenous Research. International Journal of an inspiration and provides for deeper 2 The Kirby Institute. (2015) HIV, Viral Hepatitis Critical Indigenous Studies, 3(1), 39–44. understanding of KRC’s Aboriginal clients and sexually transmissible infections in 7 Hurstville City Council. (2014). Oatley Park and their stories of strength, courage, Australia Annual Surveillance Report 2015. from an Aboriginal Perspective. Retrieved The Kirby Institute, UNSW Australia, Sydney. from: http://www.hurstville.nsw.gov.au/ resilience and survival. 3 Koori Radio 93.7FM (2LND) is a community Aboriginal-Resources.html radio station serving Sydney’s Aboriginal and Acknowledgements: Torres Strait Islander communities, operated by not-for-profit Aboriginal community Rosie Gilliver is Projects Manager/ Brian Doyle and Miki Griffiths – organisation, Gadigal Information Service. Clinical Nurse Consultant at Kirketon Aboriginal project officers; Aboriginal The term Koori, from Awabakal language, Road Centre (KRC). Christine Kerr is and Torres Strait Islander clients of gurri, are the Aboriginal/Torres Strait Islander Counsellor/Project Officer at KRC.

46 | HIV Australia, Volume 13, No. 3 The Connection: a strong and active voice for the health of Aboriginal and Torres Strait Islander young people who use illicit and injecting drugs

By Canberra Alliance for Harm Minimisation and Advocacy (CAHMA)

The Connection is born The Connection – a program of the A number of the young people Canberra Alliance for Harm Minimisation subsequently approached AIVL for A proposal for a three-year project was and Advocacy (CAHMA) – is a peer- support, with the aim of continuing this submitted to the Foundation for Young based service that represents the interests work by building a bigger and broader Australians (FYA) in September 2004. of Aboriginal and Torres Strait Islander project. During this time, the Youth This proposal outlined plans for a peer- people who use illicit and injecting drugs Coalition of the ACT (YCA) also based Indigenous youth drop-in centre (PWID) in the ACT. became involved and the young people, and peer education and support service run together with AIVL, set up a partnership The Connection promotes improved by and for Aboriginal users and ex-users to develop a DVD to promote the work health and reduction of harms associated under 25. It also came up with a name for being done by young Indigenous people with illicit/injecting drug use through a the proposed service: ‘The Connection’ – who use drugs. range of services, including peer support, symbolising the connections young people representation and advocacy, referrals, The DVD, titled Hang’in Not Hang’in had with each other and the connections information and education. This article Out, was launched with a major party they hoped to make with other young takes a brief look at the history of this at the YCA office in August 2004. It people and services and the community. unique service, and outlines some of its featured all the participants from the In late 2004, AIVL and the young people main achievements. original workshops discussing the issues received the news that the proposal had they faced on a daily basis including drug been successful! Out of eight Stage 1 grants Breaking new ground use, housing issues, police harassment, awarded nationally, only four would go on From 2003 to early 2004, AIVL family problems, racism and more. The to receive a Stage 2 grant for the next three (Australian Injecting and Illicit Drug launch was attended by local services, years. The Connection was born! Users League) ran a two-hour weekly young people and politicians, and was a fantastic way to gain recognition for the Around this time, Booker prize-winning workshop with local Aboriginal PWID in novelist Arundhati Roy was visiting the ACT. The workshops were designed amazing work being done by these young Aboriginal people, and to publicly ask Australia to accept the Sydney Peace Prize. to educate and inform this community on She had heard about the work of The topics such as hepatitis C, harm reduction for support from the ACT community to keep this work going. Connection and decided to donate money and safer drug use. The Aboriginal PWID from the prize towards the organisation. involved in the workshop (most under AIVL assisted the young people to look 25 years old) also worked with AIVL on for funding to help them to set up a Taking root and growing developing a training program to be run drop-in space, so they could continue to In 2006, John Van Den Dungen became with Aboriginal health workers. meet and have a safe space where they The Connection coordinator. He remained could support each other. While looking In 2004, a group of these young people in this role for five years. During this for funding, the young people continued travelled overnight to Sydney to stage time, John was a runner-up for Young to meet each week through support from a cultural performance and run the Australian of the Year Award. training workshop at the Social Research AIVL, and it was at this time that the Conference on HIV, Hepatitis C and relationship with CAHMA began. Related Diseases (HHARD). The performance and workshop – and the discussion that followed – was truly ground-breaking. For many in the room, this was the first time that many of the issues affecting the lives of Aboriginal1 The performance and workshop – and the discussion PWID had been discussed so publicly. The discussion was lively and emotional, that followed – was truly ground-breaking. For many in and highlighted just how much work the room, this was the first time that many of the issues was needed to ensure that the needs of

Aboriginal people who use drugs were not affecting the lives of Aboriginal people who use illicit and only heard, but actually addressed by the health sector. injecting drugs had been discussed so publicly.

HIV Australia, Volume 13, No. 3 | 47 From its humble beginnings, opening and computer bills, insurance, printing and Another important achievement was for a few hours a week in one very small training and education. the establishment of Australia’s first room in the Griffin Centre in the heart peer-administered take-home naloxone The service has had many major of Canberra, the Connection went on to program, which was started by CAHMA achievements to date, including: be auspiced by AIVL, becoming a strong n and the Connection in 2011. This program input in to the Third National and active voice for Indigenous youth in allows opioid users, their family and Aboriginal and Torres Strait Islander the ACT. Building on the base funding friends ready access to this lifesaving Blood Borne Virus and Sexually from the FYA, the Connection then opioid overdose reversal drug. Experts in Transmissible Infections Strategy received funding from ACT Healthpact the alcohol and other drugs field, including 2010–2013 for the Healthy, Mobile Mothers and n researchers, doctors – and of, course peer along with CAHMA, the Babies Project (funded by the Department organisations – have been lobbying for establishment of Australia’s first take- of Family Services and the Office of this approach to be introduced for over 20 home naloxone program Aboriginal and Torres Strait Islander n years through publishing papers outlining input into the ACT Opioid Health [OATSIH]). international evidence and other lobbying Treatment guidelines efforts. The ACT program has been a huge Because of these developments, in June n participation in the ACT Alcohol, success, and following its commencement, 2006, the Connection employed five Tobacco and Other Drug Minimum a few other states have since begun take- permanent paid peer workers (all under Qualification Strategy (MQS) n home naloxone programs. 25 years old, and two under 20), and participation in the ACT Alcohol, engaged numerous volunteers and many Tobacco and Other Drug Minimum The Connection was also an integral part participants. The service moved into bigger Qualification Strategy (MQS) of the lobbying efforts calling for a needle n premises in the newly built Griffin Centre receiving a YOGIE Award from and syringe (NSP) in the ACT prison, the and expanded its opening hours to four the Youth Coalition of the ACT; Alexander Maconochie Centre. The ACT days per week. an ACT Workers Group Award; government has given in principle support for this program but unions representing The Connection ran a peer drop-in centre and a National Crime and Prevention prison staff are highly resistant to the idea. which offered peer education, support, Award. Our advocacy in this area continues. advocacy, referral and information. The Of particular importance was the drop-in centre provided a safe space for Connection’s input into the Third References youth in Canberra where they could get National Aboriginal and Torres Strait 1 For the purposes of this article, use of the a free meal and relax. The Connection Islander Blood Borne Virus and Sexually term Aboriginal is inclusive of Torres Strait Islander peoples. also ran a number of other programs at Transmissible Infections Strategy 2010– this time and received enough funding to 2 Australian Government Department of Health 2013. In formulating this input, we and Ageing. (2010). Third National Aboriginal hold regular outings and social events for held consultations with peers from our and Torres Strait Islander Blood Borne participants of these programs. community to ensure that our voices Virus and Sexually Transmissible Infections Strategy 2010–2013. Commonwealth of were heard. This work has meant that Major achievements Australia. See: chapter 6, p. 32. (‘Priority Aboriginal and Torres Strait Islander action areas’). Retrieved from: https://www. The Connection continues to be funded by people who use drugs are not only named health.gov.au/internet/main/publishing.nsf/ the Commonwealth and is now a program as a priority population within the Content/ohp-national-strategies-2010-atsi- bbv/$File/atsi.pdf of CAHMA. The service receives around Strategy, but are highlighted as individuals $86,000 per year. This money covers, who should be providing education and wages, rent, admin costs, phone, electricity information on blood borne viruses.2

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48 | HIV Australia, Volume 13, No. 3 Reconciliation and responding to HIV in remote Western Australia

By Lisa Tomney and Andrew Burry

When launching our Reconciliation Aboriginal’, but to engage with Aboriginal Aboriginal Health Agencies, community Action Plan two years ago and setting and Torres Strait Islander communities organisations and Population Health units, out on our personal and organisational and learn what a sexual health screening and these have enabled successful working reconciliation journey, we didn’t service that is comfortable and secure for relationships that ensured delivery of fundamentally change our commitment the community to use would look like. support and education where most needed, to serving Aboriginal and Torres Strait Then, we can see whether M Clinic can some of the time. Islander communities. Such communities fulfil that role, and if it can’t then we must A welcome outcome of this approach are identified as priority populations in find a way to develop a service that does. is that of the 68 Aboriginal and Torres all of our contracts and reflect in all of This is what reconciliation is telling us, and Strait Islander people living with the State and National Strategies we are it applies to everything we do. HIV in Western Australia, 40 have a aligned with. The tyranny of distance varying degree of engagement with our What reconciliation is doing for us, organisation and services. however, is changing our perspective on Western Australia is Perth-centric and In terms of ongoing programmatic how and why we work with community. the WA AIDS Council is a Perth-centric responses, we are investing heavily in For decades we have been concerned organisation. Nonetheless, we recognise time and energy in some specific areas of about whether our services are culturally and welcome a social and community activity; one of which is ‘SHAPE’. secure and appropriate. As contractually responsibility to provide equitable access required by government, we report every to everything we offer for all Western Supporting Health and Personal six months on the numbers of Aboriginal Australians. Empowerment (SHAPE) and Torres Strait Islanders accessing our We have a long and proud history of suite of services. Where we can, we report working in support of Aboriginal and In 2012, our outreach capacity and on service outcomes, suggesting ways they Torres Strait Islander people living with ability to intensively engage with our can be improved, and on emerging issues and/or affected by HIV, as well as in clients was boosted with the successful and challenges. delivering culturally secure prevention implementation of the SHAPE Outreach What could be clearly seen is that our support to metropolitan, rural and Program. The SHAPE team work within services experience a wide disparity in remote communities. Covering an area a model that embraces substantive equality Aboriginal use. Where 40% of clients of 2.646 million km² presents obvious and flexibility, allowing ongoing review using our fixed Fremantle Needle geographical and cost challenges. From and adjustment that supports better Syringe Exchange Program (NSEP) are Perth to Broome, for example, is a quick health, well-being and outcomes for of Aboriginal or Torres Strait Islander 24 hours by road (2,239 km) or two and our client group. Our team focuses on descent, at M Clinic (a service providing a half hours by air. The so-called tyranny building relationships with our Aboriginal sexual health screening services for gay of distance makes the development of and Torres Strait Islander clients at their and other homosexually active men) just partnerships crucial and we have over the own pace, in an environment which is four out of 3,500 registered clients report years built and fostered relationships with safe, supportive, culturally appropriate Aboriginality (0.11%). It would be easy to conclude, of course, that NSEP provides a culturally secure service whereas M Clinic does not. But reconciliation tells us that this is not a helpful or accurate conclusion to … what the principles of reconciliation and substantive come to. Because, what the principles of reconciliation and substantive equality equality should be reminding us, is that Aboriginal and should be reminding us, is that Aboriginal Torres Strait Islander gay men have exactly the same right and Torres Strait Islander gay men have exactly the same right to access a free, to access a free, convenient and appropriate sexual health convenient and appropriate sexual health screening service as every other gay or screening service as every other gay or homosexually homosexually active man. So the challenge active man. is not to try and make M Clinic ‘a bit more

HIV Australia, Volume 13, No. 3 | 49 and with an approach that develops trust and self-directed engagement. Feedback from clinicians indicates that SHAPE has assisted significantly in supporting clients to remain linked with health services, achieve adherence with HIV medication, and receive additional referral to appropriate health and wellbeing services. The SHAPE team works beside clients to ensure all presenting issues can be considered as part of a comprehensive support plan, including secure and affordable housing, financial security, inter-agency advocacy, family support and addressing social isolation. Although SHAPE is Perth-based, it works together with our other support worker teams with clients from the far corners of our jurisdiction, who are frequently obliged to come to Perth as the only possible site of effective specialist medical attention.

World AIDS Awareness Week in the Kimberley

During December 2014, our Positive Peer Educator (Liz Walker), was invited by Kimberley Aboriginal Medical Services Ltd (KAMS) to provide HIV education and a personal perspective to communities in Broome, Kununurra and Wyndham. Liz was accompanied by our Aboriginal and Torres Strait Islander Health Promotion Officer (Dennis Beros). Presentations were provided to Broome Senior High School, Kununurra District High School, Save the Children girls group, Broome, Kununurra and Wyndham Hospitals, KAMS, Yawuru Pictured top and above: Liz Walker and Dennis Beros engaging with community health workers and community Community Group and Wyndham work leaders in the Kimberley region, Western Australia, November 2014. camp. During the five-day tour over 200 youth, 80 medical and allied health professionals, and 35 community members Sustainability Far too absent in the planning and were engaged, and we conducted five radio Whilst our initiatives have demonstrated implementation of programs across our interviews, one online article, tweets and at times outstanding outcomes – and state are the voices, thoughts, ideas and Facebook updates. certainly great promise – there remains a insights of Aboriginal and Torres Strait All presentations were met with great concern about their level of sustainability Islander people. Until we find a way to enthusiasm, suggesting that there is given their dependence on patchy and listen more closely, learn more carefully, genuine thirst for face-to face support to insecure funding. As an organisation built and work more sensitively, we will not supplement that provided electronically by and living on the principles of the deliver equitable access to services most and by telephone. Conversations amongst Ottawa Charter for Health Promotion, needed. participants identified barriers for we recognise that lasting change comes Our reconciliation journey keeps telling clinicians in offering testing, pre- and only when capacity within communities us this. post-test discussions, issues around is developed and individuals within those contact tracing in the region, and practical communities have a sufficient level of measures that will support people empowerment to enable them to respond living with HIV in rural and remote directly and safely to their own health Lisa Tomney is the Manager, Clinical communities. It was also possible to begin needs; better still, to be enabled to insist on Services at the WA AIDS Council. to understand the communities’ readiness the kinds of services that are most relevant Andrew Burry is the Chief Executive to address issues around sexual health. and helpful. Officer of the WA AIDS Council.

50 | HIV Australia, Volume 13, No. 3 Community Hands, Tristan Templar, Tas.

Increasing visibility and participation of Indigenous peoples at AIDS 2014 and creating a cultural legacy beyond the conference

By Michael Costello-Czok

In July 2014, the 20th International Funded by the Commonwealth spirit of Indigenous world views, our AIDS Conference (AIDS 2014) and the Department of Health, the Committee cyclical approach to eternal life, our ways International Indigenous Pre-conference enabled effective coordination of a range of learning and sharing knowledge and on HIV & AIDS were held in Australia of activities throughout AIDS 2014. But the importance of future generations and for the very first time. Planning and beyond AIDS 2014, the relationships custodianship of our traditional lands. development of AIDS 2014 and affiliated formed are a conference legacy that will The Pre-conference attracted close to events sought to ensure greater visibility support and sustain our work into the 300 delegates, including large numbers of and participation of Indigenous peoples. future. people living with HIV, elders and youth. More than 100 of the delegates went on to Leading up to AIDS 2014, Australian Our Story, Our Time, Our Future attend AIDS 2014 in Melbourne. Aboriginal and Torres Strait Islander representatives working in HIV partnered The International Indigenous Pre- Other significant AIDS 2014 with the International Indigenous conference on HIV & AIDS was held initiatives included coordination of the Working Group on HIV and AIDS in Sydney from 17 to 19 July 2014, just Indigenous Peoples Networking Zone (IIWGHA) to establish the Australian prior to AIDS 2014. The Pre-conference at the conference venue in Melbourne, Aboriginal and Torres Strait Islander theme of Our Story, Our Time, Our development and launch of the Eora Organising Committee (AATSIOC).1 Future, was developed to capture the Action Plan on HIV 2014, establishment HIV Australia, Volume 13, No. 3 | 51 Looking East, Raymond Zada, SA.

of the Aboriginal Nations and Torres artist was commissioned to create an The project incorporated a groundbreaking Strait HIV Youth Mob (ANTHYM), artwork that incorporated personal and approach to HIV education and and launch of the Aboriginal and Torres community stories relating to the impact prevention through an art exhibition, Strait Islander HIV Awareness Week, to of HIV. sharing diverse stories about the impact coincide with World AIDS Day each year of HIV and Aboriginal and Torres Strait HANDPRINTS was designed to promote from 2014 to 2017. Islander communities. Artists were excited a broader understanding and appreciation and enthusiastic to be involved with this of Aboriginal and Torres Strait Islander One Handprint tells many stories project, with many of the artists expressing culture as part of the HIV response. interest in creating more art for HIV As part of these activities, a major Our ancestors’ use of handprints and education and prevention work. exhibition of Aboriginal and Torres ochre has long recorded our history, our Strait Islander art was launched at presence and our life journeys. Our art Following its fantastic reception at the Indigenous Pre-conference. The and storytelling are intrinsically linked the Sydney International Indigenous HANDPRINTS exhibition brought to our cultures. Our art describes our Pre-conference and at AIDS 2014 in together the work of nine Aboriginal Dreaming – our creation, our land, our Melbourne, HANDPRINTS is now being and Torres Strait Islander artists from people, our wildlife, our totems and our incorporated into the Aboriginal and each Australian state and territory, journey together. Torres Strait Islander HIV Awareness including the Torres Strait Islands. Each Week, with the artworks being utilised as HIV health promotion and educational resources and exhibited nationally. Our ancestors’ use of handprints and ochre has The following artists were engaged in the HANDPRINTS project: long recorded our history, our presence and our life n Arone Meeks, QLD: ‘I am not the journeys. Our art and storytelling are intrinsically linked problem’ our journey through HIV n De Greer-Yindimincarlie, NSW: to our cultures. Shayme

52 | HIV Australia, Volume 13, No. 3 n Jukuja Dolly Snell, WA: Kurtal n Nicky Newley-Guivarra (Nigooli), Torres Strait: It’s Ok n Patrick Ahkit, NT: HIV and the Power of ‘Connection’ We are Never Alone n Peter Waples-Crowe, VIC: Koori Threats and Resistance n Raymond Zada, SA: Looking East n Tristan Templar, Tas: Community Hands n Uncle Jim Boza Williams, ACT: Bogan Moth. This year, HANDPRINTS will be exhibited in the Foyer of the South Australian Health and Medical Research Institute (SAHMRI), allowing the artwork to be exhibited for the first time in Adelaide. Location: foyer of the South Australian Health and Medical Research Institute North Terrace. When: Monday 23 November to Friday 4 December, 2015. Open daily from 9am–5pm. Admission is free. The HANDPRINTS project is generously funded by the Australian Government – Department of Health.

Michael Costello-Czok is Executive Officer of the ANA and a guest editor of HIV Australia.

Endnote 1 James Ward, Convenor – South Australian Health and Medical Research Institute; Michael Costello-Czok, Co-convenor - Anwernekenhe National HIV Alliance (ANA); Neville Fazulla – Positive Aboriginal Torres Strait Islander Network (PATSIN); Michelle Tobin – ANA; Mark Saunders – National Aboriginal Community Controlled Health Organisation (NACCHO); Brett Mooney – Torres Strait and AIDS Council Representative; James Saunders – Aboriginal Nations and Torres Strait Islander HIV Youth Mob (ANTHYM); Sallie Cairnduff and Darren Braun – Aboriginal Health and Medical Research Council of New South Wales (AH&MRC); Kat Byron and Peter Waples-Crowe – Victorian Aboriginal Community Controlled Health Organisation (VACCHO); Meggan Gross and Victor Tawil – NSW Health; Trevor Stratton IIWGHA Co-ordinator; Canadian Aboriginal AIDS Network (CAAN).

Kurtal, Jukuja Dolly Snell, WA.

HIV Australia, Volume 13, No. 3 | 53 Pictured top: Shayme, De Greer-Yindimincarlie, NSW; centre: Bogan Moth, Uncle Jim Boza Williams, ACT; and right: HIV and the Power of “Connection” We are Never Alone, Patrick Ahkit, NT.

54 | HIV Australia, Volume 13, No. 3 Pictured clockwise from top left: Koori Threats and Resistance, Peter Waples- Crowe, VIC; ‘I am not the problem’ our journey through HIV, Arone Meeks, QLD; and It’s Ok, Nicky Newley-Guivarra (Nigooli), Torres Strait.

HIV Australia, Volume 13, No. 3 | 55 Mural from Narooma High School HIV Free Generation: AH&MRC Street Art Project

By Sallie Cairnduff, Darren Braun and Kaylie Harrison

‘It was real good spray painting and stuff, we had a lot of fun. And Thirty-eight young Aboriginal people we learnt more about HIV which I didn’t even know what it meant (8–11 per site) participated in the face- when I first went to class’. — Participant to-face education activities and mural development, and a further 2,000 Introduction people were reached via the social media The HIV Free Generation Street Art component of the project. Over the last few years, the Aboriginal Project is based on the hepatitis C project, Health and Medical Research Council ‘Your Mob My Mob Our Mob’, which Project format was run by the AH&MRC, in partnership of NSW (AH&MRC), in partnership The AH&MRC developed a program with Aboriginal Community Controlled with Hepatitis NSW in 2012–2013 and delivered in five juvenile detention centres template, which was adapted to local Health Services (ACCHSs), Local needs and the skill and confidence of local Health Districts (LHDs) and other non- and in three community settings. The ‘HIV Free Gen’ project aims to increase workers. In the majority of locations, the government organisations (NGOs), has project was organised and delivered by knowledge of prevention, testing and used an arts-based approach to successfully experienced Aboriginal STI HIV and management of HIV, sexually transmissible engage young Aboriginal people in health hepatitis C workers. In other locations, infections (STIs) and hepatitis C among promotion activities around sexual health local workers were less confident in Aboriginal young people (15–25 years old). and drug and alcohol use. delivering education to young people, Recent state-wide projects, including ‘It’s In partnership with ACCHSs, the project and additional support was provided. Your Choice, Have a Voice’, ‘Where’s the was delivered in four locations from AH&MRC also provided STI, HIV and Shame? Love Your Liver’ and ‘Staying December 2014–June 2015, involving hepatitis C resources and information. schools, youth services and other local Strong: Act Connect Survive’, have Education tools were taken from services. provided Aboriginal young people with AH&MRC’s resource, ‘DOIN ‘IT’ relevant health education as well as The project consisted of the following: RIGHT!’ These included interactive n engaging them in writing and filming Interactive educational activities, activities focusing areas such as risk, songs and creating hip-hop dance routines. that included peer to peer learning self-esteem and STIs, and games such as Evaluations of these and other projects as well as focusing on positive sexual condom races. have demonstrated that an interactive health messages The project ran over three days in each arts-based approach is an effective way n Street art as a way to engage young location, and was tailored to the groups’ of engaging young Aboriginal people on Aboriginal people, and to leave a ages and interests. During the first two topics that might otherwise cause shame. mural as a permanent contribution to days, the young people participated in the community structured activities focusing on STIs, About the project n A social media component to HIV and hepatitis C, and then worked Inspired by the 2014 International encourage further reach to peers with a professional street artist to create a n Indigenous Pre-conference on HIV and Community engagement through a mural that communicated key messages AIDS, AH&MRC identified a need to launch of the final mural and BBQ they had learnt. The third day focused n refocus activities with young Aboriginal Capacity building component on launching the mural to the wider people around HIV, STIs and injecting through working with participating community, as well as celebrating what the drug use. ACCHSs. young people had learnt and designed. 56 | HIV Australia, Volume 13, No. 3 Mural from Narooma High School

Mural from Kempsey

To extend the reach of the messaging, community, and participants involved in Feedback from the young people is photographs taken throughout the mural the project have ongoing opportunities overwhelmingly positive about the street development process were posted on the to share knowledge with their peers. art component, and was identified by some ‘HIV Free Generation’ Facebook page. At one service, the murals resulted in of the workers as one of the key reasons In three locations, a short film clip that discussions with board members about the young people continued to participate in included vox pops with participants and role of sharing injecting drug equipment the three-day project. workers, was developed and posted on in transmitting HIV, which has led to ‘I think they loved it and they’ve loved Facebook. further work around improving harm that two walls have been done in areas minimisation activities for the area. Engaging young Aboriginal that Aboriginal kids hang around.’ people through street art The language and messages used by the — Worker murals reflect the strengths-based STI Capacity building and Ash Johnson, a professional street artist, and HIV education that young people had partnerships provided participants with an overview been participating in, for example: n of street art etiquette, the history of street “Check yo’ self B 4 U wreck yo’ AH&MRC supported services to deliver art, health and safety, and assisted the health” – to encourage STI testing this project by providing a framework for young people to design and create a mural (Blacktown Youth College) project delivery, including an education n communicating key messages which “Knowledge is power, let’s make it go session plan. These plans were adapted emerged out of the education component. VIRAL” (Narooma High School) according to needs identified by the n community (e.g., to focus on injecting The murals were created in prominent “Don’t stress, Get a test” (Kempsey) n drug use, or sexual health education), places – a school wall at Blacktown Youth “Don’t be shame, be game” to the age range of the participants and the College, a number of walls at Narooma encourage condom use (Kempsey) n confidence and skills of the local workers. High School, on an external wall at “You and Me – then let’s talk about the entrance of the Durri Aboriginal HIV” – to discuss sexual transmission Services were required to participate in a Corporation Medical Services (at of HIV (Airds). pre-project workshop to prepare for the Kempsey) and internally at Tharawal The imagery depicts strong and proud project, and were provided with templates Aboriginal Corporation (at Airds). As they young Aboriginal people making informed for inviting schools to participate, consent are permanently on display, the murals choices about their sexual health. forms for participants and resources continue to generate discussion in the HIV Australia, Volume 13, No. 3 | 57 Mural from Tharawal Aboriginal Corporation to deliver the education component. Community engagement From the pre- and post-evaluations, ACCHSs identified partner organisations it became clear that there was existing Local community members were invited and groups of young people to invite, knowledge about HIV transmission to participate in the project through the prepared a wall or space for the street art through sex without using a condom and launch of the mural. Hospitality students component, and organised the community blood-to-blood contact. There was some from Blacktown Youth College got involved launch. confusion around HIV transmission by providing catering for the launch, while through sharing cutlery, which improved at another service, the mural was launched Social media after the workshop was delivered, and at the organisation’s Christmas lunch. At there was also increased knowledge about As the number of participants in each most locations, parents, workers, board services available for young people. location was small, the reach of the project members, school principals and other staff was extended through social media, attended the launch. Workers indicated that some of the managed by AH&MRC’s Sexual Health benefits of the project included: continued Project Officer. As of October 2015, the Impact discussions around HIV/STIs in local page had nearly 300 ‘likes’ and one post communities; an increased interest in had a reach of more than 1,900 people and ‘I want to be one of the HIV generations. services and young people being engaged more than 700 views. I want to make sure that people stop the in sexual health promotion activities; risk of HIV.’ having highly visible artwork on display Naya Ngarra Productions, an Aboriginal — Participant that young people can be proud of, media company, were contracted to relate to and identify with; and evident develop a short video at three locations The impact of the project has been enthusiasm and pride in being involved (Blacktown School, Narooma and collated through pre- and post-workshop with the project. Kempsey). The purpose of the videos was evaluations, vox pops comments, and to extend the reach of the project outside debriefs with workers. ‘Young people who don’t normally come to school, to come into college and then give of the local area, as well as to capture At all locations, participants were up their holidays to work on this project some of the thoughts of the participants encouraged to do pre- and post-project for 3 whole days, it’s outstanding.’ for evaluation purposes. The videos have evaluations, via a short true/false quiz. In — Worker proved to be very popular in increasing some locations it was found that literacy reach of the social media site. was an issue, so data was also collected To view the HIV Free Generation photos via the comments young people made on and videos, please visit: www.facebook. social media. com/YourMobMyMobOurMob?ref=hl

58 | HIV Australia, Volume 13, No. 3 Mural from Aboriginal Medical Service Western Sydney – Blacktown Youth College.

Acknowledgements

Darren Braun, Kaylie Harrison, Bonny Briggs, Alana Rossman, Chantelle Davis (AH&MRC); Ash Johnson, Street Artist; Doli Ufi, Karen Beatson, Tharawal Aboriginal Corporation; Mafi Kailah, Natalie Andrews (AMS Western Sydney), Nicole Brown (Blacktown Youth College); Jade Hansen (Katungal AMS), Racheal Wallace, Jacob Francis Jo Norton-Baker (Wandarma AOD service), Narooma High School; Stacey Donovan (Durri AMS), Madeline Holtmann (North Coast LHD); Larteasha Griffin, Naya Ngarra Productions; and Young Aboriginal people from NSW communities involved in the project.

Mural from Kempsey Sallie Cairnduff is Manager of the Public Health Unit at the The Aboriginal Health & Medical Research Council of NSW (AH&MRC), Darren Braun the previous Sexual Health Project Officer, and Kaylie Harrison the Senior Public Health Project Officer. The AH&MRC is the peak representative body and voice of Aboriginal communities on health in NSW. The AH&MRC represents its members, Aboriginal Community Controlled Health Services (ACCHSs), which deliver culturally appropriate comprehensive primary health care to their communities.

Mural from Narooma High School

HIV Australia, Volume 13, No. 3 | 59 International feature Indian Blood: HIV and Colonial Trauma in San Francisco’s Two-Spirit Community

By Andrew Jolivette

1 Indian Blood is a study Halito. Buenas tardes. Bon Jour. Kia Ora. with a colleague about it and he said, conducted by Professor Good afternoon. Much respect to the “How will disclosing impact you? Will Andrew Jolivette, exploring the Jagara people and the Turrbal people, for it benefit you? Are you giving anything allowing me to speak on your country. up?” I thought to myself, as a gay man of intersection of gender, sexuality, I also want to acknowledge the other color, I have a responsibility to disclose. mixed-race identity and HIV Aboriginal and Torres Strait Islander This is a very personal decision, but among mixed-race, lesbian, gay, peoples of this country. I come here in indigenous communities and in humbly and as a guest with an open communities of color we lack faces to bisexual, transgender, queer, heart and a thankful spirit for all that you make this pandemic real. If you’ve never and/or two-spirit (MLGBTQ2s) and your ancestors share and sacrifice so known someone living with AIDS, identifying American Indians that we might all gather here today as now you do. You know my story and in Indigenous peoples of the earth. sharing it I hope that others will know living in urban areas. that they can live with this. They can I am the son of Annetta and Kenneth, have a career, a family. They too can find the grandson of Gertie and Howard and The following is an abridged love again. Over the past three [eleven] Isabella and Andrew. The great-grandson years I have learned AIDS is not me. I version of a speech Andrew of Allie and Eli, Francois and Rosina, Eva am me. AIDS is only one other part of delivered at the 2015 Australasian and Edward, and Curtis and Leila. I come my life. HIV & AIDS Conference in from the Opelousa and Atakapa nations of southwest, Louisiana. Of a mixed- The quotation that opens this chapter Brisbane on 18 September. blood Afro-Latin people – made-up of comes from a mixed-race, gay, American the lifeblood of American Indians, West Indian man. His story is not an Africans, and Latin Europeans. I introduce uncommon one. For American Indian myself in this way so that you will know people today, HIV/AIDS, gender, who I am and where I come from as a sexuality, and mixed-race identity intersect fellow Native, Indigenous person and as a in complex and traumatic ways in the fellow relation. absence of community support, cultural buffers, and stress-coping mechanisms to Today is our day. Today is our time. combat colonial oppression. Today is our day to tell our stories and to remember and reflect on all we have This is my story too. I open with my struggled through and all that you have own story because I deeply believe in accomplished since the onset of the HIV/ the practice of research justice. Research AIDS epidemic over 30 years ago. justice is about seeking solidarity with research participants. It is about working Today I share the story of fifty Indigenous with, not on research participants to American Indian mixed-blood men and weave a narrative, a set of life histories transgender identified people from the San captured in one of many moments in time. Francisco bay Area who represent over In fact, to understand the very nature of two-dozen different nations. In sharing the colonial haunting that has displaced, their story today, I also share my own story. removed, relocated, and perpetrated mass I’d like to open this story with a quote acts of genocide (i.e., kidnapping, boarding and a short passage from the introduction school abuse, sexual assaults, murder, to my new book, Indian Blood: HIV and forced sterilisation etc.) against Indigenous Colonial Trauma in San Francisco’s Two- peoples, researchers must understand Spirit Community: the significance of what Maori scholar HIV and AIDS is something that I have Linda Tuhiwai Smith (1999) has termed learned to live with. It’s also something ‘Indigenous methodologies.’ Smith argues that a part of me feels happened for a that for most Indigenous peoples because reason. I wasn’t sure if I should disclose of the abuse and lack of access to write my status in this way here today. I spoke about our own communities, research is

60 | HIV Australia, Volume 13, No. 3 considered a ‘dirty word’ to most Native peoples in the Americas and the Pacific.2 Thus to build a research relationship based on solidarity and justice one must consider research as a ceremony.3 When I was diagnosed with AIDS nearly 13 years ago, in October of 2002, I had 35 T-cells and a viral load of over 500,000. I thought I was dying. I went through the scare of thinking I had liver failure which was the result of taking the drug Septra to fend off the pneumonia that had invaded my body. It turned out I was allergic to the medication which raised the enzyme levels in my liver. At the time of my diagnosis I was just 27 years old, a graduate student trying to complete a dissertation, at the same time that I was working a full-time job as a middle school dean and teaching as a part-time lecturer at San Francisco State University. While I struggled and thought my life might be over, I never struggled in the way that the men and transgender people from my project with the Native American AIDS Project struggled. The way they and many in our communities struggle. I completed my dissertation and Ph.D. just five months after being released from the hospital, 25 pounds lighter at that time from the pneumonia … I have still faced many health obstacles and personal struggles. In 2012, my mother passed away from breast cancer, and just a year and a half ago I myself was diagnosed with stage I prostate cancer. While my health has been a constant up and down battle, I see the bright light in sharing my story. When we open our hearts, when we become vulnerable, when we share our stories and Andrew Jolivette delivers his address at the 2015 Australasian HIV & AIDS Conference, Brisbane, September 2015. Photo: Amanda James (James Photography Services), courtesy of Australasian HIV&AIDS Conference and ASHM. our ancestors stories we start to heal, we become whole again. We find balance. Because of my academic training and traditional ways that same-gender loving a Psychosocial Nexus of HIV Risk. The personal interest in mixed-race studies I Indigenous people around the world Indian Blood Psychosocial Nexus of HIV set out to understand how experiencing engage relationships and life we see that Risk Model (IBPN HIV Risk Model) life as Indigenous and mixed impacted colonisation attempted to destroy that outlines historical and contemporary one’s chances for contracting HIV/AIDS. way of life and as that system of cultural factors impacting the spread of HIV/ What I learned on the journey is that like support and well-being was dissolved AIDS among MLGBTQ2s, and includes so many other facets of Indigenous life so too were many of the necessary and six interconnected psychological and today, colonialism still attempts to rob foundational protective factors that can social factors that produce high-risk us of the ability to tell our stories and to reduce risk for HIV transmission. sexual behavior. These factors include: be our full selves. The Indigenous people two-spirit cultural dissolution, historical/ in the study shared so many painful and In Indian Blood – my study of the inter-generational trauma, gender and traumatic stories that were interconnected. intersections of gender, sexuality, mixed- racial discrimination, mixed-race cognitive These stories speak powerfully to the race identity and HIV – I examine dissonance, sexual violence, and stress social and psychological patterns of what the impact of colonial and neocolonial coping in urban Indian kinship networks. I term ‘two-spirit cultural dissolution’. repression of Native agency and That is when we think about some of the subjectivity through the development of

HIV Australia, Volume 13, No. 3 | 61 I argue that as the spiritual, socio- because they didn’t want to do nothing was working all of the time, she didn’t economic, and cultural significance of for themselves. But, um … I got beat know what was going on, and I don’t two-spirit individuals dissolves – through up. I got the shit beat out of me so bad know, I was drunk a lot too, you know. I colonial contact with Europeans – mixed- you wouldn’t even recognise me it was started smoking cigarettes, I learned how blood American Indian queer people so bad. I got kicked in the face about 25 to inhale when I was about 5 or 6 years experience ruptures in their social and times by this guy with boots on. Just old and I liked it. I was smoking and my cultural support networks that under totally beat up on the reservation, nobody sister would let me smoke. By the time normal circumstances would serve came to help, nobody helped me …. After I turned 13, my mother allowed me to as protective factors against external leaving I got into a relationship but then smoke cigarettes, she allowed me to smoke discrimination. As discrimination against I started using again. So it was like, you weed, she allowed me to do speed, she let two-spirits increases from contact to the know what? You’re gonna go back to the me do whatever I wanted. As long as I present there is a breakdown in traditional/ reservation and end up back where you did what I was supposed to do you know. tribally specific values, beliefs, and practices were, go back down hill – sobriety. That’s — Indian Blood Respondent, 2012. that lead to detrimental experiences with why I came here. I needed to get the Historical traumas are culturally, inter-generational trauma. These traumas sobriety. And that was the main thing. economically, and spiritually transferring within the context of the Mixed-Race Because what was up there for me was from one generation to the next leading LGBTQ and Two-Spirit experience are no longer [working]. You know there was to inter-generational traumas that are not manifested through racial and gender like … a mile of death up there, really only endemic within Native communities, discrimination, mixed-race cognitive serious death up there. So to me, like but these experiences with trauma are dissonance, and sexual violence. If these when death is always open, all those old also central to US polices of control, traumas are left unaddressed from a people are definitely gone, those people are paternalism, and global imperialism. diverse range of two-spirit cultural ethics definitely gone. then we can expect weak stress coping — Indian Blood Focus Group Factor 3: Gender and racial mechanisms within urban Indian kinship Respondent, 2012. discrimination networks. The only way to create more The process of two-spirit cultural effective harm reduction models is through I’m short, I’m fat, and I’m red. And I dissolution for MLGBTQ2s American a return to a two-spirit cultural ethic of ain’t upset about it. When it comes to Indians has taken place over many support, inter-generational mentoring, and dominant culture I’ve never related. I centuries and the damage brought forth mean never. I always look at values, well ceremonial healing. by colonisation and on-going settler on the contrary I kind of take an opposing I want to briefly share a few quotes from colonialism has led to the dissolving of 4,5,6,7 view, is that what they call it? Identity the participants in the study to more two-spirit cultural support networks. to me is still kind of problematic because carefully explain the six interrelated factors The dissolution of two-spirit cultural of quote ‘gay/queer’ culture. I was never that produce high risk for HIV among practices is a direct result of religious ‘out’, but I was labeled as being out, so I mixed-blood Native people. I want to missionaries and government officials was the person that other people came out say that while this study is small, and was who worked to erode, destroy, and reshape to, both male and female. Historically, done in one area of the United States, I do gender and sexual practices within Native I’ve always, ALWAYS, been at more believe that it may speak to similar trends 8 communities throughout the Americas. comfort with um... female identity. throughout the Americas and the Pacific. Factor 2: Historical and Whether it’s biological, mostly biological Factor 1: Two-Spirit cultural intergenerational trauma female, but it’s just that femaleness. If dissolution I’ve got a choice, if I’m gonna kick it with I grew up by myself and um, a lot of the boys, hetero or gay or queer, or I’m You know, I’ve been to places where I’ve ducking and dodging, you know, a lot of, gonna kick it with the dykes, I’m going met people, like myself on the reservation it was just a constant. A constant life you with the dykes. Cause I can relate, I [who also attended boarding schools] but know, so um, and my family didn’t know understand those dynamics. obviously didn’t like themselves enough how to deal with it cause my mother — Indian Blood Respondent, 2012. Gender and racial discrimination is mitigated through stress-coping mechanisms that range from substance abuse to exercise, to cultural activities for As discrimination against two-spirits increases from the majority of participants in the study. Not every form of stress-coping equally contact to the present there is a breakdown in traditional/ reduces high-risk sexual behavior. In fact, some stress-coping strategies actually can tribally specific values, beliefs, and practices that lead to increase risk for HIV/AIDS transmission among members of this population detrimental experiences with inter-generational trauma. demographic.

62 | HIV Australia, Volume 13, No. 3 Factor 4: Mixed-race cognitive I suppose I’m kind of a case study. I The culmination on this study will be dissonance was just 8 when this all started. So the a two-year cultural leadership, peer Like ya know racially, I’m like a quarter behavior that I took on displayed during mentoring intervention. A Stress and white, but I don’t feel white and I don’t that time, was atypical. I tried to resist. Wellness Rubric will be developed to look white, so … Um … People can’t But yet it’s in the American paradigm, assess differences from the beginning of often tell, cause I’m so mixed about what let’s blame the victim, and I was just a the intervention to the end to assess the I am actually. So um... Like Latinos will bad student. And it’s like no I was just effectiveness of the Inter-Generational think I’m Latino, Filipinos will think doing the best I could with, ya know, Healing and Leadership Model on I’m Filipino. Ya know, some Asians I was just doing the best that I knew participants. Data and rubric measures will will think that I might be part Asian how given the circumstances. Later I got be published in peer-reviewed journals, or something, and Indian people will into the BDSM [bondage, domination, and additional funding will be utilised to often think I’m Indian or Mexican or sadomasochism] world. Hmmm, I focus on a national study/intervention. wonder why? BDSM. Pain baby, pain! something. I’m just racially unidentifiable Let today be the beginning of a new day often. Um, I think that growing up I felt — Indian Blood Respondent, 2012. where blood is what sews us back together a difference between the way like white Two-Spirit Bodies (TSBs) experience not what tears us apart. people feel about themselves and their psychological assault, physical violence, privileges. Like I think they feel more negation and erasure as a result of colonial References entitled often to things. And I’ve actually and settler-colonial narratives concerning 1 For further information about the study, see: seen that a bit in my family, because I http://chipts.ucla.edu/wp-content/uploads/ the performance of gender and sexuality downloads/2015/02/Dr.-Jolivette-Indian- know like the side of my family that’s within the singular context of Western Blood-Slides.pdf like Latino and Asian they came from categorical definitions that lead to what 2 Smith, L. (1999). Decolonizing a colonial place.. And also like my dad Eduardo and Bonnie Duran (1995) Methodologies: Research and Indigenous on the Cherokee side, he was racist too. Peoples. Zed Books, London. describe as soul loss. 3 Wilson, S. (2008). Research is Ceremony: He like did not like Black people. And Factor 6: Stress coping in an Indigenous Research Methods. Fernwood I’m not sure if that was a part of being Publishing, Halifax. white or part of like the Indian side. urban Indian kinship network 4 Giley, B. (2006). Becoming Two-Spirit: Gay And I sense, ya know, knowing what Identity and Social Acceptance in Indian It felt like … It almost felt like just because Country. University of Nebraska Press, the community is like now in Oklahoma we’re Indian and we don’t hang out or Lincoln. it’s probably both. Yeah so I not only things like that but I mean … I always 5 Jacobs, S., Wesley, T., Lang, S. (1997). experienced racism, feeling discriminated wanted to be friends with Indians, but Two-Spirit People: Native American Gender against, but I also saw just people in Identity, Sexuality, and Spirituality. University they always seemed kinda like I was … of Illinois Press, Urbana. my own family discriminating against I felt like not really Indian because I was 6 Morgensen, S. (2011). Spaces between Us: other people. So I knew often the weird raised by White people so it was kind of Queer Settler Colonialism and Indigenous dynamics that race can play just in your … I was always kind of shy and I didn’t Decolonization. University of Minnesota own immediate family. Press, Minneapolis. identify with Indian issues. But um … 7 Roscoe, W. (1998). Changing Ones: Third — Indian Blood Respondent, 2012. It was when I came to NAAP that I was and Fourth Genders in Native North America. Palgrave Macmillan, New York. MLGBTQ2s feel both conscious and able to find out about BAAITS and all these wonderful organizations that have 8 Tinker, G. (1993). Missionary Conquest: unconscious pressure to surrender their The Gospel and Native American Cultural power in naming themselves in an ethnic/ to do with American Indian people. So Genocide. Fortress Press, Minneapolis. racial sense because other people will I learned how to bead, and like all these always expect the mixed-race subject to wonderful things like I’d been wanting to Andrew Jolivette is Professor and respond to the same fixed identity that experience all these wonderful things for Chair of the American Indian Studies they ascribe upon them. The ascription many years and I never knew that I could at San Francisco State University, of ethnic and racial identity upon because I just never thought about it. where he is an affiliated faculty member in Educational Leadership, MLGBTQ2s also produces challenges in — Indian Blood Respondent, 2012. Sexuality Studies and Race and developing a congruent, collective social Effective, ethnic-specific, and culturally Resistance Studies. memory and sense of true community competent health care practices can His forthcoming book, Indian Blood: membership. strengthen stress-coping mechanisms HIV and Colonial Trauma in San within urban Indian MLGBTQ2s Francisco’s Two-Spirit Community. Factor 5: Sexual violence communities while also reducing high- (University of Washington, May 2016), At the age of 8, I started, or I was risk sexual behaviors that lead to the explores the efficacy of an Indigenous being raped. I was raped from the age transmission of HIV/AIDS. stress coping mechanism along with of 8 until I was 18. Right or wrong I Well organised, consistent, and empowering a new intervention model on Inter- actually did the one thing that they tell urban Indian kinship networks can also Generational Healing and Cultural you not to do and I actually resisted, so reduce the psycho-social risk factors Leadership to reduce HIV risk among I experienced some extreme violence. associated with the IBPN Model. multiracial, two-spirit populations.

HIV Australia, Volume 13, No. 3 | 63 Health promotion update

By Ben Wilcock

Us Mob & HIV Us Mob & HIV is a new health promotion TAKING resource for Aboriginal and Torres Strait Islander communities, produced A LOOK by the Australian Federation of AIDS Organisations (AFAO). The pocket-sized The basics of HIV prevention booklet aims to increase Aboriginal and for gay men Torres Strait Islander people’s knowledge about HIV and its impacts. Us Mob & HIV is the third edition of a resource originally published as HIV and Us Mob. Previous editions continue to remain in high demand, demonstrating a clear need to maintain availability of a core HIV resource for Aboriginal and Torres Strait Islander communities in a format that is culturally appropriate. The booklet provides basic information on HIV, focusing on transmission, prevention, affected by HIV in Australia, with around about how often to get tested, links to HIV testing, HIV treatments, health three-quarters of new infections each information on where to get tested and monitoring, care and support available for year occurring among these men. Among what the experience of having an HIV test people with HIV, as well as service contact Aboriginal and Torres Strait Islander is like. It also contains information about details. Information on HIV treatments, communities, men who have sex with men pre-exposure prophylaxis (PrEP) and post- testing and other topics has been updated account for just over half of all new HIV exposure prophylaxis (PEP). The booklet is for the revised edition and importantly, it diagnoses. not targeted to any specific gay community, provides a clear explanation of the concept Indigenous or non-Indigenous. The new of undetectable viral load. As younger men become sexually active, edition of Us Mob & HIV can be used and as some older men come out, there is The booklet includes a series of ‘yarns’ as a complementary resource for health an ongoing need to provide concise and written by community members, promotion among Aboriginal and Torres clear advice about the fundamentals of HIV designed to reinforce and personalise Strait Islander communities. prevention and gay sex. key health messages. Information is also Hard copies of Taking a Look are available communicated in visual form, with artwork With this in mind, AFAO has produced a from AIDS Councils in each state and and illustrations by Indigenous artists Gary fully revised edition of its booklet Taking territory and are being distributed to many Dickinson and Arone Meeks. The personal a Look, providing up-to-date information service providers. A digital version of the stories and illustrations create a sense of on all the basics of HIV prevention for booklet is available on the AFAO website. community ownership and help to ensure gay and bisexual men. This new edition of The website version of the resource is that the content is seen as relevant and the resource has also been produced as a available at: takingalook.org.au engaging. website. Hard copies of the Us Mob & HIV booklet The booklet aims to increase health are available from AIDS Councils in each literacy among gay and other men who state and territory, and are being distributed have sex with men about HIV. It includes to many service providers including information on HIV transmission and Aboriginal Medical Services. A digital prevention, HIV testing and diagnosis, as version of the booklet is available on the well as information about how to prevent AFAO website. other sexually transmissible infections. Taking a Look This second edition of Taking a Look features expanded information on range Gay men and other men who have sex of options for HIV testing, prevention Ben Wilcock is an HIV Health with men continue to be the group most and treatment. Topics include information Promotion Officer at AFAO.

64 | HIV Australia, Volume 13, No. 3 BOOK REVIEW

Colouring the Rainbow – Blak Queer and Trans Perspectives: Life Stories and Essays by First Nations People of Australia Edited by Dino Hodge. Published by Wakefield Press, Adelaide. Reviewed by Gregory Phillips

In this superb collection, twenty-two the degradation that racism, sexism and Aboriginal and Torres Strait Islander heteronormativity seeks to impose on them people share their stories in powerful in multiple and regular ways, but because accounts of identity, belonging, colonisation they render colonisation and patriarchy and liberation. The contributors identify starkly bare; exposing its guts and skin as sistergirl, brotherboy, lesbian, gay and through sheer determination and the will to queer, and they are strong leaders, change speak truth to power. agents, intellectuals, artists, survivors and In finely honed analyses, the contributors sportspeople. in the third section point out that while The tome is organised into three sections: Queer communities are also marginalised, life stories, public emergence, and academic the largely white, middle class, male keepers analysis of the socio-political forces that of power in Queer movements are often impact on Aboriginal Queer realities. complicit in the ongoing colonial project. Crystal Johnson’s life story is a perfect The writers suggest that liberation is not opening to the collection because her only about overcoming racism in the white story illustrates how important it is for community, homophobia and transphobia Aboriginal and Torres Strait Islander in Aboriginal communities, or sexism and people to define and share their own heterosexism in both, but about revealing cultural, sexual and gender belongings. As that the power relations of the colonial a sistergirl, her story illustrates how being project are still alive today, and inform all of A final note on editorship is necessary. As Tiwi (Aboriginal), trans, Christian, an these forms of bigotry. Maddee Clark writes, an Aboriginal Queer academic myself, I HIV educator and a keeper of traditional ‘Aboriginal sexual histories are often written question why a non-Aboriginal man has Tiwi knowledge can all exist at the same by settlers with an anxious investment in come to edit such a powerful collection time in one Beautiful Blak body! Her self- believing that white settlement is justified, of stories. While there may have been meanings are what is powerful and piercing. largely peaceful, and necessary’ (p. 239). invitations issued for him to do so, at the While Kai Clancy, Ben Gertz and others’ Importantly, Oscar Monaghan asserts very least, co-editorship with Aboriginal stories portray the real struggles involved that overcoming this legacy will require editors could have been considered. Are in self-acceptance and dealing with bigotry, an intersection of Aboriginal and Queer some white academics taking up space, they are also stunning and sweet pictures of activism, where white Queers support voice and editorial power that should and family acceptance, cultural mentorship, and Aboriginal sovereignty, and Aboriginal could be filled by Blackfullas? Should non- pride in political activism. movements continue to support sexual and Aboriginal writers and editors step back gender diversity. and allow space for Aboriginal and Torres The contributors in the second section Strait Islander peoples to decide and edit on public emergence tell of raw strength, Essentially, each of the stories in this what our own collections of stories look community action, and the beauty collection is saying that white views on like? Yes. Otherwise, white power can get of working with communities in an what constitutes culture, sexuality, gender reinscribed in apparent acts of allegiance, empowering way. The late Rodney Junga- and tradition ought to be irrelevant to demonstrating what contributors in this Williams’, and Brett Mooney’s, stories Aboriginal and Torres Strait Islander lived book call out. are perhaps particularly relevant to the realities. While white society continues readership of HIV Australia, because to attempt to define, shape and control That said, these twenty-two Blak Queer they confront HIV head-on as activists, Aboriginal and Torres Strait Islander leaders, working with Dino Hodge, have educators and leaders. They break down peoples, especially in terms of the onslaught delivered finely nuanced and powerful barriers, open hearts and educate minds. of HIV and other newer waves of mass stories that the social, literary and cultural All of the stories in this section represent trauma, these stories illustrate beautifully world desperately needs. They are all to be a turning point in Aboriginal Queer lived the power and groundedness of returning congratulated. realities. Far from being the tragic and home. Returning to, or re-creating, one’s romanticised people others sometimes cultural, familial, spiritual, social or political Associate Professor Gregory Phillips, want them to be, the contributors here belongings – however self-defined – is an PhD, is a Research Fellow in Aboriginal Health at the Baker IDI Heart & are examples of brave hearts and true essential act for all humans. These leaders Diabetes Institute. souls – not just because they overcome exemplify it.

HIV Australia, Volume 13, No. 3 | 65 TREATMENT BRIEF

Antiretroviral treatment cohort of HIV-positive participants provided that comprehensive, culturally use, co-morbidities and attending HIV outpatient services appropriate, multidisciplinary care is clinical outcomes among Aboriginal participants throughout Australia, of which 20 (74%) provided. sites report Indigenous status. Data in the Australian HIV Indigenous patients in our large clinical Observational Database were collected up until March 2013 cohort had lower rates of laboratory testing (AHOD) and compared between Indigenous and for HIV and lipid/glucose parameters than a,b,c* non-Indigenous participants. Person-year David J. Templeton , Stephen T. non-Indigenous participants. Overall, lipid Wrighta, Hamish McManusa, Chris methods were used to compare death and glucose testing among Indigenous Lawrenced, Darren B. Russell e,f,g, rates, rates of loss to follow-up and rates Matthew G. Lawa, Kathy Petoumenosa participants occurred at under half the of laboratory testing during follow-up and on behalf of the Australian HIV frequency that is recommended in national between Indigenous and non-Indigenous 9 Observational Database guidelines. participants. At enrolment, the median age of he rate of HIV diagnoses among Virological suppression is currently Indigenous participants was younger Australian Aboriginal and considered the best measure of successful TTorres Strait Islander (hereafter than non-Indigenous participants but response to combination antiretroviral median time since HIV diagnosis was ‘Indigenous’) people over the past decade therapy (cART). Overall in AHOD similar. Mean CD4 counts were also has been similar to that among non- more than 80% of treated participants are 1 similar between Indigenous and non- Indigenous Australians. However, factors virologically suppressed in any calendar Indigenous participants at enrolment to such as high rates of sexually transmitted year over the last decade4, which is AHOD. Compared with non-Indigenous infections (STIs), social disadvantage and broadly similar to the rates of suppression participants, a higher proportion of poor access to health services may lead with various cART regimens in other 2 Indigenous participants were female to an elevated risk of HIV infection , settings5,6,7. The two-year virological (p = 0.029), living in non-metropolitan as has been witnessed among Canada’s suppression rates after commencing cART 3 areas (p < 0.001), and reported potential Indigenous population . in our substudy participants of around HIV exposures of heterosexual contact 80% irrespective of Indigenous status is There are few published data regarding (p = 0.022) and injecting drug use encouraging, and is likely to reflect good clinical outcomes and co-morbidities of (p = 0.082). In addition, fewer Indigenous engagement in care. Aboriginal Australians living with HIV participants reported male-to-male sexual and it is unknown if these differ from non- The significantly lower rate of testing contact alone as their most likely HIV risk Indigenous HIV-positive Australians. Our for immunological, virological and other exposure (p = 0.002). Most participants, aim was to describe demographic factors, health parameters among Indigenous irrespective of Indigenous status, had an clinical characteristics, and co-morbidities participants is of concern. The reasons for undetectable HIV viral load, and over 40% among Indigenous participants, and less frequent laboratory monitoring of of both groups had a CD4 count of >500/ compare them with those of non- Indigenous participants are unclear as such mm3. Similar proportions of Indigenous Indigenous participants enrolled in a large data are not captured in AHOD. However and non-Indigenous participants were Australian clinical cohort of HIV-positive possible reasons could include economic or currently infected with hepatitis B or had patients. geographic challenges in accessing care. If evidence of current or past hepatitis C As far as we are aware, these are the such challenges exist for rural and remote infection. Indigenous people living with HIV, formal first data comparing clinical outcomes Indigenous participants were tested programs providing social, financial and between Indigenous and non-Indigenous significantly less often for HIV markers travel support to enhance HIV monitoring HIV-positive Australians. The forty- (CD4 count and HIV viral load), while and care may be beneficial in maintaining two Indigenous participants represent testing rates of lipids and blood glucose their long-term health. over just under 10 % of all Indigenous among Indigenous participants were Australians ever diagnosed with HIV. Clinical outcomes appear no worse almost half that of non-Indigenous Although outcomes were not significantly among Indigenous participants enrolled participants. different, Indigenous patients had lower in AHOD compared with their non- This is an abridged version of an article rates of laboratory testing for HIV and Indigenous counterparts. This may not originally published in BMC Infectious lipid/glucose parameters. Given the be representative of the situation among Diseases (Volume 15) on August 12 2015. elevated risk of cardiovascular disease in Indigenous patients outside the study. The complete version of this article the general Indigenous community, the It is likely, at least in part, to reflect can be accessed online at: http://www. additional risk factor of HIV infection engagement in HIV care, as enrolment in biomedcentral.com/1471-2334/15/326 warrants further focus on modifiable risk AHOD requires attendance at a clinical factors to maximise life expectancy in this service providing HIV care. Nonetheless, Reproduced under a Creative Commons population. other health outcomes, such as those Attribution 4.0 International License (http://creativecommons.org/licenses/ The Australian HIV Observational among pregnant HIV-positive Indigenous by/4.0/) Database (AHOD) commenced women, have been shown to be equivalent 8 enrolment in 1999 and is a prospective to those among non-Indigenous patients ,

66 | HIV Australia, Volume 13, No. 3 References 1 The Kirby Institute. (2013). Bloodborne 21 years: renewing the call for government action on HIV viral and sexually transmitted infections in and Aboriginal and Torres Strait Islander communities Aboriginal and Torres Strait Islander people: Surveillance and Evaluation Report 2013. The By Linda Forbes Kirby Institute, UNSW Australia, Sydney. 2 Ward, J., Akre, S., Kaldor, J. (2010). Guarding against an HIV epidemic within an Aboriginal On the final Day of Anwernekenhe 6, Linda Forbes, Policy and Communications community and cultural framework; lessons Manager at AFAO, gave an address reflecting on the importance of from NSW. NSW Public Health Bull, 21, Anwernekenhe’s 21 years, the Anwernekenhe National HIV Alliance’s (ANA) 78–82. ongoing relationship with AFAO and its current funding situation. 3 Shea, B., Aspin, C., Ward, J., Archibald, C., Firstly, I’m thrilled to be here and acknowledge the Arrernte people, past and Dickson, N., McDonald, A., et al. (2011). HIV present, of the land on which we meet today. I also acknowledge the Gadigal diagnoses in indigenous peoples: comparison people of the Eora nation – the land on which the AFAO office in Sydney stands. of Australia, Canada and New Zealand. Int I’m here to give you a rundown of the ANA’s growth from birth, through its Health, 3, 193–198. toddler days, the awkward teen years – some insights into what it’s been 4 The Kirby Institute. (2014). Australian HIV like for AFAO to guide and support the ANA in its quest to become a fully Observational Database Annual Report. The independent community-based organisation. Kirby Institute, UNSW Australia, Sydney. 5 Hill, A., Sawyer, W. (2009). Effects of I’d planned to be a tad funny today – maybe get a few laughs! But in writing nucleoside reverse transcriptase inhibitor this it’s sadly clear to me that, while the ANA’s story is great and something to be proud of, at the moment, the backbone on the efficacy of first-line boosted state of things at the federal level is just not a laughing matter. highly active antiretroviral therapy based on You’ve all heard mention of AFAO over the last couple of days – tributes to Gary Lee’s vision and passion at protease inhibitors: meta-regression analysis the very beginning; to AFAO’s Indigenous project, managed by Tim Leach, that allowed AFAO to employ the of 12 clinical trials in 5,168 patients. HIV absolutely amazing Michael Costello-Czok; AFAO’s support and guidance during the development of the ANA Med,10, 527–535. towards incorporation; and AFAO’s financial support, pending approval of AIDS Trust of Australia’s funding, to 6 Boffito, M., Miralles, D., Hill, A. (2008). sustain the ANA when Commonwealth funding has been withdrawn or delayed. Pharmacokinetics, efficacy, and safety of Well, how do we feel at AFAO? Well I must say we’re proud – that despite a lack of commitment to secure, darunavir/ritonavir 800/100 mg once-daily in ongoing funding from successive federal governments, the ANA now has an equal place on the AFAO Board treatment-naive and -experienced patients. with the other national peaks representing people living with HIV and people in the communities most affected HIV Clin Trials, 9, 418–427. by HIV – the National Association of People Living With HIV Australia (NAPWHA), AIVL (Australian Injecting and 7 Imaz, A., Llibre, J., Navarro, J., Curto, Illicit Drug Users League), and Scarlet Alliance, Australian Sex Workers Association. This means that the ANA J., Clotet, B., Crespo, M., et al. (2014). now guides AFAO’s work; the tables have turned. Effectiveness of efavirenz compared with The ANA has also provided input into the Commonwealth’s strategies to address HIV and Aboriginal and ritonavir-boosted protease-inhibitor-based Torres Strait Islander communities. The ANA was included in consultations to develop both the current Fourth regimens as initial therapy for patients with National Aboriginal and Torres Strait Islander Blood Borne Virus (BBV) and Sexually Transmissible Infections plasma HIV-1 RNA above 100,000 copies/ml. (STI) Strategy, and its three predecessors. The current strategy and those before it include a commitment that Antivir Ther, 19, 569–577. the federal government sustain and build what’s touted to be Australia’s world-leading, model response to HIV 8 Gilles, M., Dickinson, J., Cain, A., Turner, K., – successes including keeping a lid on HIV rates in Indigenous communities, unlike comparable countries such McGuckin, R., Loh, R., et al. (2007). Perinatal as Canada. HIV transmission and pregnancy outcomes in indigenous women in Western Australia. Aust Australia attributes its success in responding to HIV to its partnership approach that ensures the meaningful N Z J Obstet Gynaecol, 47, 362–367. engagement of people living with HIV and affected communities – a partnership of governments, community 9 Australasian Society for HIV Medicine. (2014). organisations, clinicians – and researchers such as James Ward. The ANA’s and the National Aboriginal Antiretroviral Guidelines 2014. Retrieved from: Community Controlled Health Organisation’s (NACCHO’s) input means that the Commonwealth is able to say http://arv.ashm.org.au that non-government organisations representing Aboriginal and Torres Strait Islander communities have contributed to development of Australia’s national BBV and STI strategies. Author affiliations The national BBV and STI strategies were approved in July 2014 – just in time for the AIDS 2014 conference in a. The Kirby Institute, UNSW Australia, Sydney Melbourne and the Indigenous pre-conference in Sydney. How embarrassing if Australia had had no national NSW Australia; b. RPA Sexual Health, Sydney HIV strategies in place during AIDS 2014 conference and the International Indigenous Pre-conference, Local Health District, NSW, Camperdown especially when we’ve been so proud of the fact that when the US launched its first national HIV strategy we NSW Australia; c, Central Clinical School, The were up to our sixth! University of Sydney, Sydney NSW Australia; So, we have national strategies with actions to address HIV in Aboriginal and Torres Strait Islander communities d. The George Institute for Global Health, – but something’s missing? Where’s the action? What’s happening with implementing the strategies? Level 10, King George V Building, 83–117 Missenden Rd, Camperdown NSW Australia, Well, they’re in limbo – not yet approved 18 months into the life of the current national strategies. NSW; e. Cairns Sexual Health Service, Cairns Also in limbo is funding for the national HIV peaks. The ANA is by far the worst affected by this because it’s QLD Australia; f. The University of Melbourne, so small and poorly funded anyway but we’re all in limbo – AFAO, NAPWHA, Scarlet and AIVL as well, with VIC Australia; g. James Cook University, Department of Health funding contracts lapsing in either December 2015 or in June next year, and tenders either Queensland, Australia. *Corresponding author: undecided or not yet called. Unsettling to put it mildly. David J Templeton david.templeton@sswahs. Despite all these character-building funding adventures – we’re all here, celebrating 21 years of the nsw.gov.au Anwernekenhe. The ANA has struggled to grow and thrive – but here you all are – testament to its strength! What a privilege to be here and to see the wonderful film on the first conference 21 years ago. AFAO now relies on and depends on the ANA’s input as an equal partner – and let’s all remember that the Commonwealth does too. So let’s not feel too discouraged that the ANA has had ongoing funding struggles despite its contribution to the national strategies and to the international AIDS conferences in 2014. Instead, feel proud. These achievements constitute an enduring legacy for the ANA; Australia presented the ANA’s strength and commitment to the world in 2014 and your community’s growing strength, passion and resilience has shone through over the 21 years since the first Anwernekenhe conference. Here’s to the next 21 years! Linda Forbes is Policy and Communications Manager at AFAO.

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