NAPWHA staff, board and special representatives aim to ensure the meaningful involvement of people living with HIV in a range of HIV-related research activities across Australia (and some internationally). NAPWHA plays a key role through contributing to research advisory committees, reference groups and as representatives for people living with HIV on specific research studies.
Research and studies of which NAPWHA represents in
NAPWHA’s input covers areas of; clinical research, behavioural research, and social research into aspects of living with HIV. One of our activities involves interpreting and circulating relevant HIV research outcomes and findings to HIV positive people via a range of media loops and through the network of NAPWHA member organisations.
NAPWHA is currently representing and involved in the following research:
- Australian Centre for HIV and Hepatitis Virology Research (ACH2) – Scientific Advisory Committee
- Australian Centre for HIV and Hepatitis Virology Research (ACH2) – Immunovirology Research Network (IVRN)
- Australian Centre for HIV, Hepatitis and Virology Research – Scientific Advisory Board
- Australian Research Centre for Sex Health and Society, La Trobe University – HIV Futures 10 study
- Australian Collaboration for Coordinated Enhanced Sentinel Surveillance (ACCESS)
- Centre for Social Research in Health, UNSW – PAART Study (Predictors of Adherence to Antiretroviral Therapy)
- Centre for Social Research in Health, UNSW – Stigma Indicators Monitoring Project – Stigma Indicators Advisory Committee
- Centre for Social Research in Health, UNSW – Scientific Advisory Committee
- Centre for Human Rights Education, Curtin University – Reducing health disparities for culturally and linguistically diverse peoples
- Delaney AIDS Research Enterprise Community Advisory Board
- The Kirby Institute, UNSW – CEASE Study (Control and Elimination within Australia of Hepatitis C from PLHIV)
- The Kirby Institute, UNSW – RISE Study (Recently Diagnosed and the Impact of Support of the Experience of HIV)
- The Kirby Institute, UNSW – SPANC (Study of the Prevention of Anal Cancer)
- The Kirby Institute, UNSW – PAWS (Prospective Ageing Well Study)
- HIV Cure Community Partnership (HCCP)
- HIV Cure Digital Think Tank
- INSIGHT (International Network for Strategic Initiatives in HIV Trials) – Community Advisory Board
- Monash University – Healthmap Study – Steering Committee
Examples of recently published research involving NAPWHA representatives:
Adam Bourne, G. J. Melendez-Torres, An Thanh Ly, Paul Kidd, Aaron Cogle, Graham Brown, Anthony Lyons, Marina Carman, John Rule & Jennifer Power (2021): Anxiety about HIV criminalisation among people living with HIV in Australia, AIDS Care.
Rule, J., Ellard, J.,& Cogle, A. (2018). Linkage to Care Project: Report Identifying the Barriers and Facilitators for People living with HIV to Treatment and Care. National Association of People with HIV Australia.
Siefried, K. J., Mao, L., Cysique, L. A., Rule, J., Giles, M. L., Smith, D. E., & Bloch, M. (2018). Concomitant medication polypharmacy, interactions and imperfect adherence are common in Australian adults on suppressive antiretroviral therapy. AIDS (London, England), 32(1), 35.
Brown, G., Reeders, D., Cogle, A., Madden, A., Kim, J., & O’Donnell, D. (2018). A Systems Thinking Approach to Understanding and Demonstrating the Role of Peer-Led Programs and Leadership in the Response to HIV and Hepatitis C: Findings from the W3 Project. Frontiers in public health, 6.
Brown, G., Mikołajczak, G., Lyons, A., Power, J., Drummond, F., Cogle, A., & O’Connor, S. (2018). Development and validation of PozQoL: a scale to assess quality of life of PLHIV. BMC public health, 18(1), 527.
HIV FUTURES Study
HIV Futures 10 is now open. This survey about the health and wellbeing of people living with HIV in Australia, has been conducted at the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University since 1997. It is Australia’s largest and longest-running survey, of which NAPWHA is one of the project collaborators.
The study team is keen to hear from all people (cis and trans) living with HIV, including women, heterosexual men, and gay and bisexual men.
HIV Futures 10 is particularly keen to ensure a diversity of experiences is represented, including people from culturally and linguistically diverse communities.
HIV Futures is an anonymous survey. It asks people about a range of issues including their health, treatments, work and financial situation, and is key to national change, including improving services for PLHIV and strategies to reduce stigma.
If you are a person living with HIV in Australia and aged over 18 years, the HIV Futures team would love to hear from you. The survey will be open until March 2022.
Read about past HIV FUTURES Surveys
HIV Futures 9, published in September 2019, focused on quality of life among people living with HIV (PLHIV). Data was collected from December 2018 until May 2019. Participants completed a questionnaire using a self-complete online or hardcopy form. The survey instrument comprised 148 questions related to quality of life, financial security, health, well-being, treatment, support, sex, relationships, HIV-related stigma, and ageing.
PozQoL Scale—measuring changes in quality of life among people living with HIV
The PozQoL Scale is an empirically validated quality of life scale for people with HIV. The Scale was developed between 2016 and 2019 through a partnership project of the Australian Research Centre in Sex, Health and Society (ARCSHS); ViiV Healthcare; NAPWHA; Living Positive Victoria; Positive Life NSW; and Queensland Positive People.
Calling for participants — Incorporating quality of life into PLHIV care: Developing a consensus tool
The Centre for Social Impact (at UNSW) is conducting a project to enhance clinical and community practice by combining a set of recommended health and social Patient Reported Outcome Measures (PROMs; including quality of life) for people living with HIV (PLHIV) that can be incorporated usefully into day-to-day practice of clinical and community services.
This resulting outcome set is likely to enhance care plans and care engagement across services and provide an exciting and timely opportunity to align the monitoring of quality of life and other key PROMs across clinical, community and national outcomes monitoring.
We are conducting an adapted Delphi consensus process, which involves up to three feedback surveys to narrow down the list of outcome measures and an optional final consensus meeting (in an online format), to select the minimum set of most practical PROM candidates to include.
The research study is looking recruit professionals currently working within a clinical, community, research or government setting related to care for people with HIV or outcomes monitoring. Community professionals includes trained PLHIV peer support workers.
On completing the final survey, you will be invited to select an Australian HIV organisation to be provided a $25 donation as thanks for your time.
Anxiety about HIV criminalisation among people living with HIV in Australia
Previous research has suggested that criminalisation of HIV may serve to hamper public health efforts by inhibiting HIV status disclosure or testing. Limited research to date has sought to examine the broader impact of criminalisation on the health and wellbeing of people living with HIV, which this paper aims to address.
Data for this analysis were obtained from the HIV Futures 8 study. Drawing on cross-sectional data from 895 people living with HIV in Australia, this paper describes associations between standard measures of mental health and resilience with a newly devised scale measuring anxiety about HIV criminalisation.
Findings suggest that laws criminalising HIV transmission have a broadly negative impact on wellbeing of people living with HIV, a situation that is exacerbated for gay and bisexual men, and other people living with HIV who may face intersecting forms of marginalisation based on race, gender or class. There is little justification for these laws being applied in Australia and the findings add weight to advocacy seeking to overturn criminalisation across the world.
Video: On 8 April 2021, Heather Ellis (Former Chair, Positive Women Victoria) speaks to Dr Dean Murphy (Research Fellow, Alfred Health, Monash University, Victoria) about VAX-PLORE Study. The study is keen to hear from people living with HIV about their opinions of COVID-19 vaccines and COVID-19 in general. NAPWHA is a co-investigator in this study.
VAX-PLORE study by Alfred Health (Monash University, Victoria) is investigating how people feel about COVID-19 vaccines, as well as people’s experiences of – and opinions about – COVID-19 in general. The Alfred are keen to hear from people living with HIV (PLHIV) and people who are currently taking HIV pre-exposure prophylaxis (PrEP). Participating in the study involves completing an online survey (approximately 30 minutes long).
The information you provide will be important in guiding the health sector to appropriately respond to the community’s needs around COVID-19.
ViiV healthcare: Positive Perspectives 2 Survey
On 26 March 2021, NAPWHA hosted a community interactive webinar discussing data from the ViiV Positive Perspectives 2 (PP2) study created to generate insights into the unmet needs of people living with HIV (PLHIV). It is one of the largest global, HIV patient-reported outcomes studies involving 2,389 PLHIV across 25 countries.
- 00:00 Daniel Reeders, NAPWHA Host — Welcome
- 03:16 Dr Ben Young, ViiV Healthcare Head of Global Medical Directors — What affects quality of life and favourable health outcomes?
- 31:35 Brent Allan, ViiV Positive Perspectives Wave 1 and Wave 2, Country Advisor for Australia — What does the Positive Perspective 2 data mean for PLHIV in Australia? (Discussion)
- 51:28 Q&A with the panel
RISE stands for ‘Recent Diagnosis and the Impact of Support on Experiences of HIV’. Run by The Kirby Institute, UNSW, Sydney.
The RISE Study utilises longitudinal, semi-structured interviews to explore the experiences of people recently diagnosed with HIV in Australia, including life after diagnosis. To date, 28 people living with HIV have taken part in interviews, with over three-quarters having completed a follow-up interview. Issues including sex and HIV prevention prior to diagnosis, the clinical diagnosis experience, access to and use of HIV clinical care and peer support services, disclosure, sex, relationships, and impacts of COVID-19 are explored. This report also presents findings from another component of the RISE Study that comprises interviews with community-based HIV service providers, mainly exploring the impacts of COVID-19 on their service delivery.
NAPWHA was a project collaborator for the CEASE Study (Control and Elimination within AuStralia of HEpatitis C from people living with HIV) run by Kirby Institute, UNSW Sydney. Over 400 participants are involved in the study throughout NSW, QLD, VIC and SA. Most of the participants in CEASE are gay or bisexual men (80%), who have injected drugs at some point in their lives (79%). The average age of participants was 49 years. Participants attended a Follow Up #1 visit in 2018 and will be invited to attend Follow Up #2 in 2020.
By 2015, an estimated 230,000 Australians were living with hepatitis C. Of the approximately 25,000 living with HIV, around 10% were also living with hepatitis C. The CEASE study looks at highly effective treatments, rapid uptake of treatment & low rates of reinfection to tackle hep C. Direct-acting antivirals (DAA) for hepatitis C treatment was accessed by 91% of co-infected CEASE participants by 2018. This led to a substantial decline in the proportion of people in the study who had active hepatitis C from 82% in 2014 to 8% in 2018. Australia is one of the first countries in the world to show such a dramatic effect in people living with HIV, and this is a result of the rapid uptake of DAA medications, one of the cornerstones of the elimination effort.
Read more: On the road to hepatitis C elimination for people living with HIV published on 15 November 2019.
Strategic Timing of Antiretroviral Treatment (START)
The Strategic Timing of Antiretroviral Treatment (START) study is a randomised and interventional clinical trial held in collaborating study site locations in Australia and internationally in over 35 countries between 2009 and 2015. It is run by INSIGHT (International Network for Strategic Initiatives in Global HIV Trials) of which Kirby Institute, UNSW Sydney and National Health and Medical Research Council, Australia are collaborators. START is still collecting long-term follow up data on participants in the study.
However, the individual risks over two years were still quite small. Because of this, the researchers wanted to look at people who started the study with a low viral load. Out of more than 4,500 people in the study overall, 1,134 began with a viral load less than 3000 cells/mml. This included 93 people whose viral load was undetectable (less than 50) without ART. Current analysis is being carried out on the 1,134 people.
NAPWHA has supported this study since its inception. The previous Executive Director of NAPWHA, Jo Watson played a key role in establishing a Community Advisory Board to contribute to the development of the study protocols, disseminate information arising from the study and explore any policy implications. Dr John Rule now represents NAPWHA on the Community Advisory Board (CAB). The CAB continue to monitor any outcomes that might be of interest to communities and to this end have encouraged the preparation of regular newsletter updates and to ensure that information is translated into lay terms.
Prospective Ageing Well Study (PAWS)
PAWS stands for ‘Prospective Ageing Well Study’ and aims to explore health and lifestyle patterns among older gay and bisexual men (aged 45 and over) to have a better understanding of how gay men are ageing, and whether this differs among gay men with HIV compared to gay men without HIV. This will help appropriately plan for health services in the future. The study is run by Kirby Institute, UNSW Sydney. It requires qualifying participants to complete a questionnaire (15-20 minutes). The study is currently recruiting.
Stigma Indicators Monitoring Project
NAPWHA is a partner/collaborator on the Stigma Indicators Monitoring Project conducted by the Centre for Social Research in Health, Faculty of Arts and Social Sciences, UNSW Sydney. Stigma and discrimination have remained persistent problems experienced by people living with HIV and it is hoped that through developing a set of indicators that future strategies and interventions to reduce stigma and discrimination can be carefully designed, assessed and measured for their impact. Stage one of the project has produced information on the extent of stigma experienced; details about experiences of people with HIV can be found in a brief report which was published to coincide with Worlds Aids Day in 2018.
Moving into the next stages of the project the aim is to design, trial and assess interventions which aim to reduce stigma. NAPWHA will continue to provide advice through representation on the Project Advisory Committee.
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).
Research that may be of interest to people with HIV
Age-related Clonal Haematopoiesis in an HIV Evaluation Cohort (ARCHIVE)
The ARCHIVE study (Clinical Trial NCT04641013) is an observational longitudinal cohort study of people with and without HIV who are over the age of 55. The study, conducted by Australian scientists from the Kirby Institute at UNSW Sydney and the Peter MacCallum Cancer Centre, is planned for 10 years, with study visits every 1-2 years, that evaluates genomic and other factors associated with aging, stratified by HIV status.
In June 2021, results were published in the journal Nature Medicine uncovering a vital link in the relationship between HIV and ageing, evaluating the age-related genetic changes in over 400 participants from nine sites at hospitals and community practices.
The study found that people living with HIV had a higher rate of clonal haematopoiesis (CH), which results when a genetic mutation develops in a small number of blood stem cells and is a common finding among older people.
The Trust in Digital Health study is led by researchers at UNSW Sydney to understand how people from a range of different communities are choosing to store and share their personal health information in a variety of digital health systems and technologies, including electronic health records, apps, social media sites, wearable devices, online forums and virtual health consultations.
While we are interested in understanding what shapes trust in digital health more broadly, very little research has been conducted on this issue with populations affected by or at risk of blood borne viruses (BBVs) and sexually transmissible infections (STIs) in Australia. This survey is now closed.
Chemical Practices study
A study on drug consumption practices among sexual and gender minorities is being undertaken by researchers from the Department of Gender and Cultural Studies (University of Sydney), along with colleagues from Monash University and UNSW.
For people with HIV there may be some interest in participating in the study as the researchers are also including substances that they might not immediately be thought of as ‘drugs’, for example antiretroviral treatment. A broad range of drugs is included in the scope of the research—for example, illicit drugs, prescription pharmaceuticals, steroids, hormones, and antiretrovirals (as HIV treatment or PrEP). Researchers are interested in people’s expectations and experiences of the way these substances affect their sexual or gender performance, and the strategies people use to maximise desired effects and minimise potential negative effects. The survey covers the following areas: drug and alcohol consumption practices; specific expectations and experiences of drug consumption; well-being; use of services; and attitudes and experiences related to gender. The study of open to anyone with lesbian, gay, bisexual, transgender or queer (LGBTQ) experience. This study is now closed.
HIV seroconversion over time: 30 years exploring accounts of HIV infection and diagnosis
Kirby Institute and NAPWHA held a World AIDS Day 2022 event reflecting on how far we’ve come 30 years after the first seroconversion study in Australia.
In 1992, the first in-depth study was set up to explore the ‘event’ that people attributed to their HIV seroconversion. Unique in the world, this study investigated the ways in which people understand and negotiate HIV risk.
Over time, studies of HIV seroconversion have identified many important issues, such as the emergence of strategic positioning and serosorting. They have also chronicled, via participants’ accounts, many significant developments in the epidemic, including contemporary antiretroviral-based HIV prevention approaches (notably ‘treatment-as-prevention’ and U=U). This research continues to be important in the current era, for example providing insights into HIV testing patterns, mobility, PrEP, and the negotiation of sexual encounters on digital media apps.
On the 30th anniversary of the first seroconversion study in Australia – and timed to coincide with World AIDS Day – researchers who have been involved in the study over its lifetime provided reflections on the personal and community impact of the study and its main findings – over each specific era – as well as its impact across the different periods of the epidemic.