HIV

Incorporated in 1985 as the AIDS Council of NSW, ACON is widely recognised as an innovative and successful organisation which has adapted to changes in the HIV epidemic and responded early to emerging health issues among our communities.

Since our inception, we’ve been at the forefront of advocacy around issues relating to HIV and to sexuality and gender diverse health, drawing on our close connections to community to identify emerging issues and create dialogue around these issues with policy makers and researchers.

Our Policy, Strategy and Research team responds to current issues in HIV policy and legislation, developing better strategies for advocacy to reduce stigma and improve access to the best methods of prevention, testing and treatment available.

Our policy work is evidence-based and research driven, addressing a broad range of policy issues affecting people living with or affected by HIV. These include:

• Priorities and targets in the NSW and National government HIV Strategies.
• Changes in the NSW health system that impact people living with, or at risk of HIV.
• Access to the best biomedical interventions for people at risk of HIV transmission, including PrEP and PEP.
• Access to a variety of effective and appropriate HIV testing services, including HIV self–tests and rapid HIV tests.
• Access to education, testing and treatment for all LGBTQ+ people in NSW.
• Access to care and support for people living with, or affected by, HIV.
• Any aspect of policy or legislation affecting the goal of achieving virtual elimination of HIV in NSW.

To find out more please contact our Policy, Strategy and Research team at policy@acon.org.au.

Policy Statements and Submissions:

• ACON and Positive Life NSW submission to the Code of practice for the control of work-related exposure to hepatitis and HIV (blood-borne) viruses review (November 2023)
• Opt-Out Testing (2023)
• The Role of the NSW HIV Partnership Network in Our Response to Mpox (July 2023)
• Long-acting injectables for HIV treatment and prevention (April 2022)
• Impact of COVID-19 on HIV (2021)
• ACON Submission to Inquiry into Mandatory Disease Testing Bill (December 2020)
• The Case Against Mandatory Testing (December 2019)
• Mandatory Testing of People whose bodily fluid comes into contact with an emergency responder (October 2018)
• ACON submission to PBAC on PrEP (June 2016)
• ACON Submission to Statutory Review of the Public Health Act (June 2016)

Discussion Papers:

• Evidence Brief: People Living with HIV and Smoking (2023)
• HIV and Young Gay, Bi+ and Queer Men (2023)
• Needle and Syringe Programs in NSW: Opportunities for Innovation (2022)
• ‘It’s Who We Are’: Exploring the Role, Impact and Value of Peers (2021)
• Ending HIV-Related Stigma For All (2020)
• HIV in the NSW Aboriginal and Torres Strait Islander Population (2019)
• Imaging HIV in 2030 (2019)
• Effective HIV prevention and health promotion among Asian gay and homosexually active men in New South Wales (2017)
• Rapid Initiation: Models for the Immediate Uptake of HIV Treatment (2017)
• Effective and Meaningful Inclusion of Trans and Gender Diverse People in HIV Prevention (2017)

Ageing

Policy Statements and Submissions:

• ACON Submission to NSW Inquiry into homelessness amongst older people aged over 55 (May 2022)
• Second Submission to the Royal Commission into Aged Care Quality and Safety (March 2020)
• First submission to the Royal Commission into Aged Care Quality and Safety (October 2019)

Alcohol and Other Drugs

Policy Statements and Submissions:

• ACON Submission to National Tobacco Strategy Submission (2022)
• Drug Harm Reduction Treatments and Our Communities – Position Paper 2020
• ACON Submission to NSW Special Commission of Inquiry into the Drug ‘Ice’ (May 2019)

Cancer

Policy Statements and Submissions:

• ACON Letter in support of MSAC Application 1752 “Anal human papillomavirus and cytology testing in high-risk populations” (July 2023)
• ACON Submission to Cancer Australia on the Australian Cancer Plan (March 2022)
• ACON Submission to National Tobacco Strategy (2022)

Discrimination and Human Rights

Policy Statements and Submissions:

• ACON Preliminary Submission to NSW Law Reform Commission’s Review of the Anti-Discrimination Act (September 2023)
• ACON Submission to the Australian Law Reform Commission’s Religious Educational Institutions and Anti-Discrimination Laws: Consultation Paper (February 2023)
• ACON Submission to the Inquiry into Improving Crisis Communications for Culturally and Linguistically Diverse Communities (May 2022)
• ACON Submission to NSW Women’s Strategy (July 2022)
• ACON Submission to Alex Greenwich’s Equality Bill (July 2022)
• ACON Submission to the Review of the Workplace Gender Equality Act 2012 (December 2021)
• ACON Submission to the Inquiry into the Federal Religious Discrimination Bill (December 2021)
• ACON Submission to the Inquiry into the Provisions of the Voluntary Assisted Dying Bill 2021 (November 2021)
• ACON Submission to Inquiry into Education Legislation Amendment (Parental Rights) Bill 2020 (February 2021)
• ACON Submission to the Review of the NSW School Curriculum (November 2020)
• ACON Submission to Inquiry into Anti-Discrimination Amendment (Religious Freedoms and Equality) Bill 2020 (August 2020)
• ACON Submission to Inquiry into Anti-Discrimination Amendment (Complaint Handling) Bill 2020
• Joint Statement on the Religious Freedom Review recommendations from LGBTI organisations and leaders (October 2018)
• The Australian Human Rights Commission Consultation on Protecting the human rights of people born with variations in sex characteristics in the context of medical interventions (September 2018)

ACON has made a number of submissions relating to hate crimes. You can read more about those here.

Domestic and Family Violence

Policy Statements and Submissions:

• Coercive Control Submission (January 2021)
• ACON Submission – Inquiry into Family, Domestic and Sexual Violence (July 2020)
• ACON Submission on the Reform of the Law of Consent in NSW (February 2019)

Health Services

Policy Statements and Submissions:

• ACON Submission to the Special Commission of Inquiry into Healthcare funding (October 2023)
• ACON Submission to the Department of Social Service’s A Stronger, More Diverse and Independent Community Sector (November 2023)
• ACON Letter in support of MSAC Application 1754 to provide patient consultations and surgical procedures for gender affirmation in trans and gender diverse adults (November 2023)
• ACON Submission to the Inquiry into Birth Trauma (September 2023)
• Submission to the Inquiry into the universal access to reproductive healthcare (December 2022)
• ACON Submission regarding the provision of general practitioner and related primary health services to outer metropolitan, rural, and regional Australians (September 2021)
• ACON Submission to the Review of the National Framework for Advance Care Planning (March 2020)
• ACON Evidence Brief: Gender Affirming Surgery in Australia (2021)
• ACON Submission to Cancer Australia on the Australian Cancer Plan (March 2022)

Mental Health

Policy Statements and Submissions:

• ACON Submission to the Inquiry into Equity, accessibility and appropriate delivery of outpatient and community mental health care in New South Wales (September 2023)
• Improving access to inclusive mental health services for LGBTQ people via telehealth (August 2021)
• Productivity Commission’s Mental Health Inquiry (April 2019)

NSW Pre-Budget Submissions

• ACON Pre-Budget Submission 2022-23 (January 2022)

NSW State Election

In the lead up to the 2023 NSW State Election, ACON worked alongside a coalition of organisations including BlaQ Aboriginal Corporation, Equality Australia, NSW Gay and Lesbian Rights Lobby (GLRL), Hepatitis NSW, Sex Workers Outreach Project (SWOP), Positive Life NSW, HIV/AIDS Legal Centre (HALC) and Twenty10, to produce the NSW Election 2023: Candidates Questionnaire which was distributed to the major parties and independent candidates prior to the election. The questionnaire outlined 39 key commitments necessary in improving the health, human rights, and safety of people in our communities and we invited the major parties and independent candidates to provide their position in relation to each of these key commitments. You can access their responses below:

Read Alex Greenwich’s response to the Questionnaire here

Read the Greens NSW’s response to the Questionnaire here

Read NSW Labor’s response to the Questionnaire here

Read the Liberals’ response to the Questionnaire here

Following these responses, ACON and its partners organisations hosted a live public community forum to give representative candidates from across the political spectrum the opportunity to elaborate on their responses to the questionnaire and answer questions from the audience.

A recording of that event can be viewed here.

ACON will use this questionnaire, and the NSW Labor response, to provide a roadmap for engaging with NSW Government on key reforms in the next term of Parliament.

Mandatory Disease Testing

Policy Statements and Submissions:

• ACON Submission to Ombudsman’s Review of the Operation of the Mandatory Disease Testing Act 2021 (November 2023)

You can read more about Mandatory Testing Orders here.

The Mandatory Disease Testing Act is scheduled to be reviewed in 2023.

ACON Ethics Committee

ACON welcomes opportunities to collaborate with researchers, participate in research and promote projects that align with our organisation’s values, programs and priorities.

Research is fundamental to inform and improve health promotion and services for people of diverse genders and sexualities (LGBTQ+) and people living with HIV. We believe that research that meaningfully involves people with lived experience throughout the research project lifecycle, from development to implementation and feedback to community, is essential and generates greater insights into and for our communities.

Research projects must go through a robust ethics review process before they can be promoted by ACON.

ACON’s dedicated Research Ethics Review Committee (RERC) is made of independent researchers and health experts who provide ethical guidance to ACON and researchers with a view to ensuring that any project we promote benefits our communities and ACON. The RERC reviews the extent of community consultations and involvement, the appropriateness of language, indicators and survey questions, the potential benefits and risks to participants.

What projects require ACON ethics approval?

Research projects seeking ACON’s endorsement, or access to ACON’s support and resources, are required to attain approval from the ACON Research Ethics Review Committee (RERC). This includes:

• Projects that seek survey promotion support from ACON (e.g., sharing a survey on ACON’s social media and mailing lists, promoting a research study through the distribution of flyers).
• Projects that seek the participation of ACON staff in research.
• Projects that specifically target sexuality and gender diverse populations (LGBTQ+), either as their sole sample group or as an identified sub-sample.
• Projects that specifically target people living with HIV, those who provide care and support for people living with HIV, and priority populations for HIV prevention.

How does the ACON ethics approval process work?

There are three essential steps:

1. Contact research@acon.org.au for a short pre-assessment

Due to the high number of applications we receive, the ACON Research Ethics Review Committee’s Chair and Secretariat conduct a pre-assessment of your project and its alignment with ACON’s research priorities and programs. We will consider:

• The project’s suitability and alignment with ACON’s research priorities and programs.
• The age of participants (ACON generally does not promote research involving participants under the age of 18).
• Whether the project is already being promoted and/or recruitment is underway.
• The research experience and lived experience of the researchers (ACON generally does not promote honour’s degree research projects, unless the applicant has demonstrated that the project is of exceptional quality and benefit to our communities).
• ACON’s capacity to promote the research.

You do not need to fill out an application form at this stage. Simply provide a brief description of your project and the kind of support you need, and we will get back to you to advise on next steps.

2. Fill out an application form

Before submitting your application, please consider reviewing the following key points:

• Sexuality, gender and intersex indicators – please refer to ACON’s recommended Community Indicators for Research. The RERC generally does not approve studies that do not include appropriate indicators.
• List of Support Services – Please ensure any listed support services are known to be LGBTQ inclusive and that it is clearly indicated whether the service is appointment-based or available 24 hours
• The extent and appropriateness of consultation with affected populations.

Download: ACON Ethics Committee Application Form

3. Implement the ACON RERC’s recommendations, if applicable

Once your project is reviewed, you will be advised of the outcome in writing. The four possible outcomes are:

• Approval: the proposal is approved as submitted.
• Approval after amendments or clarifications: The proposal is approved subject to the provision of clarifications to the RERC.
• Deferment: The proposal is not approved as submitted, but it can be reassessed if the applicant chooses to resubmit the application with changes asked by the RERC.
• Declined: The proposal is not approved as submitted.

If you receive an outcome that requires implementing the RERC’s recommendations, we will advise you on the necessary steps to progress your application.

When should I submit an application form for ACON ethics review?

Make sure to contact research@acon.org.au before filling out the application form. Our team will conduct a pre-assessment to ensure your project aligns with our priorities and capacity.

For University-based research, please apply to ACON’s ethics review after receiving approval from University ethics (or other NHMRC-registered ethics body).  

Recommended Community Indicators for Research

Through extensive consultation with our communities and research experts, we have developed the following sexuality, gender and intersex related indicators. We recommend the use of these questions as a minimum in all research projects focused on LGBTIQ+ people.

ACON also endorses the use of the Australian Bureau of Statistics Standard on Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables for wider population (non-LGBTIQ+ specific) research. The ABS Standards are available here.

Research projects which seek ACON ethics approval and do not use the ACON Recommended Community Indicators or the ABS Standards are unlikely to receive approval unless they demonstrate a strong rationale for not doing so.

You can download a PDF of the above guide here.

ACON’s Research Priorities

Research is key to improving the health of people living with HIV and people of diverse genders and sexualities. It helps us better understand our communities’ needs, design effective programs and advocate for policy change to improve health outcomes.

We believe that people in our communities should be meaningfully included in research – from the choice of research topics to recruitment, analysis, and community feedback.

ACON’s Research Priorities guide ACON’s research activities, including the development of new partnerships. Our focus is on ensuring the projects we support have the greatest benefit for our communities and relevance to our programs. We welcome research that addresses knowledge gaps and emerging health issues as outlined by our Research Priorities, available here.

To find out more about ACON’s research priorities please contact research@acon.org.au.

ACON’s Partners In Research

ACON works with researchers and partners to build a stronger evidence base around HIV and sexuality and gender diverse health. Some of our key partners include:

• Centre for Social Research in Health (CSRH) – University of New South Wales
• The Kirby Institute – University of New South Wales
• The Australian Research Centre in Sex, Health and Society (ARCSHS) – La Trobe University
• Centre for Values, Ethics and the Law in Medicine – University of Sydney
• The National Drug and Alcohol Research Centre (NDARC)

Selected Publications

The publications and reports below are some of those which inform the work completed at ACON. We welcome new research in the varied areas of HIV Care, Treatment and Prevention and LGBTQ Health. ACON consistently encourages improved data collection

• 8th National HIV Strategy
• NSW HIV Strategy 2021-2025
• Sydney Gay Community Periodic Survey Report 2022
• SWASH 2020
• 2021 Sydney Gay Asian Men Survey Report
• Evaluation of ACON’s a[TEST] Service 2015-2019
• Evaluation of ACON’s Substance Support Service
• 2018 Australian Trans and Gender Diverse Sexual Health Survey Report
• HIV Futures 10
• Flux COVID-19 Baseline Report
• Private Lives 3
• Writing Themselves In 4
• Stigma Indicators Monitoring Project
• Report on the PrEP in NSW Transition Study 
• Lesbian, Bisexual and Queer Women’s Tobacco Reduction Project Community Survey Report 

SWASH – The Sydney Women and Sexual Health Survey

The Sydney Women and Sexual Health (SWASH) survey was first carried out in 1996. It was initiated by workers from two ACON projects, Women Partners of Gay and Bisexual Men and the Gay and Lesbian Injecting Drug Use Project, who were faced with a lack of empirical evidence on which to base their intervention work. Research on the health and wellbeing of lesbian, bisexual and queer women (cis and trans) is still scarce.

SWASH is now a comprehensive survey of sexual and gender identity; community connection; smoking, alcohol and drug use; sexual health; psychological wellbeing; experiences of anti-gay, sexual and domestic violence; parenthood intentions; preventive health behaviour including screening; healthcare access and satisfaction.

The survey is run every two years by a collaboration of ACON and researchers at the University of Sydney.

For more information and research on the health of women (cis and trans) in Australia, visit The Australian Women’s Health Network’s Women’s Health Hub online library and ACON’s TransHub.

The latest 2020 SWASH report in available here.

Previous SWASH reports:

• • SWASH 2018 – Women in contact with the Sydney LGBTQ communities 
  • SWASH 2018 – Women in contact with the Northern Rivers and Mid-North Coast LGBTQ communities
  • SWASH 2016
  • SWASH News Flash: Key findings from the 2016 SWASH Report
  • SWASH 2014
  • SWASH News Flash: Key findings from the 2014 SWASH Report
  • SWASH 2012
  • SWASH 2010
  • SWASH Report Card 2010
  • SWASH 2004
  • SWASH 2000
  • SWASH 1996/1998

Sydney Gay Community Periodic Survey

The Sydney Gay Community Periodic Survey (SGCPS) is a short survey that investigates the sexual practices, drug use, and health service engagement of gay and bisexual men. The findings are used to guide HIV and sexual health programs. It is conducted every year in February and March (corresponding with the Mardi Gras period). The SGCPS complements data from other studies and provides valuable information for HIV health promotion efforts. The SGCPS is funded by the NSW Ministry of Health.

ACON runs SGCPS in partnership with Centre for Social Research in Health (CSRH), UNSW. Click here to view SGCPS reports on CSRH website.

To find out more please contact Angus Molyneux at amolyneux@acon.org.au.