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Beyond the meaningful involvement of people with HIV in HIV-related research

In this video recorded as part of Kirby Institute Seminar Series (UNSW Sydney) on 30 March 2021, Aaron Cogle, NAPWHA Executive Director, talks about the important role people with HIV play in HIV-related research and where the gaps are in our current understanding.

People with HIV have a long history of involvement in HIV-related research. However, their specific role in HIV prevention has yet to be fully understood. The presentation analysed what constitutes the ‘meaningful involvement’ of people with HIV, how we move beyond mere involvement to something more substantial, and what we can gain by changing the narrative around HIV prevention research.

It also showcases how NAPWHA utilises research about positive people and where the gaps are in our current understanding of the Australian HIV-positive population.

Download the Presentation Slides [PDF] 

0:00​​  Webinar welcome
1:17​​  Introducing Aaron Cogle
1:54 ​​ Aaron Cogle on beyond the meaningful involvement of people with HIV (MIPA) in HIV-related research
30:22​​  Q&A

UNSW webinar series: Spotlight on Stigma

This occasional seminar series presented by the UNSW Centre for Social Research in Health (CSRH) explores the cutting-edge of stigma science, policy and practice. CSRH will draw on insights from national and international experts with the aim of building awareness and skills in the use of stigma concepts and evidence.

Through this series, CSRH hope to contribute to developing a shared literacy around key concepts in stigma, centrally involve people with lived experience in examining and unpacking research, and advance our efforts to reduce the effects of stigma in Australia.

NAPWHA is a partner/collaborator on the CSRH Stigma Indicators Monitoring Project.

17 August 2021: Introduction to stigma for the BBV workforce

Video:  On 17 August 2021, Carla Treloar facilitated a seminar for the UNSW Centre for Social Research in Health (CSRH UNSW Sydney) Seminar as part of the Spotlight in Stigma series with presentations by Loren Brener, Timothy Broady, Darryl O’Donnell (AFAO) and Aaron Cogle (NAPWHA).

29 September 2021: Stigma and Policy

In the second seminar of our Spotlight on Stigma series, CSRH explored why and how policy processes have focused on stigma. An expert panel discussed how policy processes can enable efforts to tackle stigma, where gaps remain and how community voices are included in policy processes around stigma.

Speakers include:

  • Matt Craig — Manager of the HIV and STI Unit at the NSW Ministry of Health.
  • Carrie Fowlie — CEO of Hepatitis Australia
  • Jules Kim — CEO of Scarlet Alliance, Australian Sex Workers Association – the peak national organisation that has been representing sex workers as well as sex worker organisations, collectives and projects throughout Australia since 1989.
  • Stuart Manoj-Margison — Director of Blood Borne Viruses, Sexually Transmissible Infections, and Torres Strait Health Policy Section within the Immunisation and Communicable Diseases Branch of the Australian Government Department of Health.

Facilitator: Scientia Professor Carla Treloar, Director, UNSW Centre for Social Research in Health & UNSW Social Policy Research Centre

16 October 2021: Stigma and the structure of health systems

In the third seminar, Carla Treloar will explore the organisation and structure of health systems. The expert panel will discuss how these organisational and structural factors can produce stigma and give us tools for tackling stigma within health systems.

Speakers include:

  • Sione Crawford — currently the CEO of Harm Reduction Victoria: the organisation representing people who use drugs in Victoria, Australia and has previously worked in the ACT and NSW at sibling organisations.
  • Associate professor Fiona Haigh — Director of the Health Equity Research Development Unit (HERDU) a joint initiative between the UNSW Centre for Primary Health Care and Equity and the Sydney Local Health District.
  • Dr. Thomas Ungar — Psychiatrist-in-Chief at St. Michael’s Hospital of the Unity Health Toronto and Associate Professor University of Toronto. He is an award winning educator, communicator and creator of the You Tube web-series Think You Can Shrink?

Facilitator: Scientia Professor Carla Treloar, Director, UNSW Centre for Social Research in Health & UNSW Social Policy Research Centre

31 March 2022: Stigma, the law and BBVs

In the the fifth seminar of the Spotlight on Stigma series, we look to a key structural aspect of stigma in the BBV sector – the law. We will interrogate how laws can both generate and reduce stigma. The panel of speakers will provide insights from research, legal practice and community perspectives.

Speakers include:

  • Paul Kidd is a HIV activist and criminal defence lawyer based in Melbourne. He has a long-standing interest in issues around HIV criminalisation, public health law, consent, crime and stigma. He is currently completing postgraduate studies in criminal law at Monash University.

  • Kate Seear is an Australian Research Council Future Fellow and Associate Professor at La Trobe University. She holds honours degrees in Arts and Law, a PhD in Sociology and is a practising lawyer. Her research is socio-legal and empirical in nature and typically explores connections between law, alcohol and other drugs, health, gender and the body. Her particular interests include intersections between harm reduction and the law, the law and blood-borne viruses, and drugs, gender, stigma and human rights. Kate is the author of numerous books, articles and reports on drug law. Her most recent book is Law, drugs and the making of addiction: Just Habits (2020), and was the winner of the 2020 Socio-Legal Studies Association’s History and Theory Book Prize in the UK.

  • Dylan O’Hara is a queer and trans sex worker and the Acting Manager of Vixen, Victoria’s Peer-only Sex Worker Organisation. Vixen is based on the unceded lands of the Wurundjeri people of the Kulin Nation. Through its work, Vixen promotes the cultural, legal, human, industrial, occupational and civil rights of all sex workers, and has been leading the Victorian campaign for the full decriminalisation of sex work for many years. Vixen is proudly 100% by and for sex workers, and is a member of Scarlet Alliance, Australian Sex Workers Association, and NSWP, Global Network of Sex Work Projects. Dylan started sex work as a brothel-based sex worker in Aotearoa, and they have been involved in the sex workers rights movement and sex worker-run online media since 2010

Facilitator: Scientia Professor Carla Treloar, Director, UNSW Centre for Social Research in Health & UNSW Social Policy Research Centre

Resilient ageing and end-of-life planning among people living with HIV

As part of the 2021 Australian Social Policy Conference, a number of leaders, representing a diverse community service provision network, were invited to offer their insights and further case studies to improve ageing and aged care policy and practice for people living with HIV (PLHIV).

“Given the high numbers of people who will be ageing and living longer with HIV, we have identified HIV and ageing as one of the new frontiers of the HIV epidemic,” said NAPWHA National Research Manager, Dr John Rule, speaking of the NAPWHA resource published in 2019.

“It is urgent that health and social policy responses be developed to  support the needs of this group. In this #ASPC session, presenters from various Australian jurisdictions report on service responses that have a unique HIV peer-support component.”

This session was chaired by Associate Professor Limin Mao (UNSW Centre of Social Research and Health) with the video recording released with kind permission to NAPWHA allowing for further dissemination to our community-based PLHIV organisational members across all Australian States and Territories, and for those who were unable to attend.

The conference, hosted by the UNSW Social Policy Research Centre and held online from 25 October to Friday 5 November, addressed contemporary issues in the context of ongoing health and social policy themes with session conveners from across Australia.

PLHIV ageing and end-of-life planning: a researcher’s perspective

Video:  Dr Kerryn Drysdale (Centre for Social Research in Health, UNSW Sydney) presenting on an Australian Department of Health-funded project, entitled ‘Resilient Ageing and End-of-Life Planning among people living with chronic hepatitis B, chronic hepatitis C or HIV (BBV-RAEL)’. Key findings focusing on HIV, ageing and end-of-life planning will was presented, based on in-depth interviews and the online Delphi consensus building with the project’s key stakeholders.

PLHIV ageing and end-of-life planning: what’s the national policy agenda?

Video:  Dr John Rule (NAPWHA) presenting on ‘PLHIV ageing and end-of-life planning: what’s the national policy agenda?‘   

Preparing the community for ageing and aged care service engagement

Video:  Joel Murray (ACON) presenting on ‘Preparing the community for ageing and aged care service engagement‘.

PLHIV ageing and aged care service provision: role of peer-navigators

Video:  Chris Howard (Queensland Positive People) presenting on ‘PLHIV ageing and aged care service provision: role of peer-navigators’.

Ageing and aged care: serving a diverse PLHIV population groups

Video:  Jane Costello (Positive Life NSW) presenting on ‘Ageing and aged care: serving a diverse PLHIV population groups‘. 

The role of peer-navigation in PLHIV support services: needs and gaps

Video:  Neil Fraser (Positive Life NSW) presenting on ‘The role of peer-navigation in PLHIV support services: needs and gaps‘.