Ahead of World AIDS Day, the Kirby Institute hosted a panel of representatives of national community organisations on 23 November at the Kirby Institute for a World AIDS Day forum which celebrated the reality that in Australia, communities are leading the response to HIV.
Australia’s response to HIV has been characterised by strong community leadership and partnerships between government, research, clinical and community sectors.
To celebrate this and to discuss how we can improve our partnership in the future, Daniel Coase from the Federation of Ethnic Communities Councils of Australia (FECCA), Ben Wilcock from Health Equity Matters, Megan Campbell from the National Aboriginal Community Controlled Health Organisation (NACCHO), Brent Clifton from the National Association of People with HIV Australia (NAPWHA) and Mish Pony from Scarlet Alliance, Australian Sex Workers Association shared research priorities for their communities, in order to ensure Australia’s response to HIV continues to meet the needs of a variety of diverse communities.
The UNAIDS World AIDS Day theme this year is ‘Let communities lead’, however the speakers reflected on the reality that in Australia, communities are very much leading the response to HIV, that they have been since very early in the epidemic, and importantly that this is the reason that we have so much success to celebrate in our response to HIV.
“We are fortunate to have a lot to celebrate when it comes to the response to HIV in Australia, but there is more work to do, and it’s vital that this work is driven by the needs of the community,” said Professor Tony Kelleher, Director of the Kirby Institute.
“I am incredibly grateful for the time and energy our community partners dedicated to thinking about HIV research priorities for the future. I am energised by the discussion and the recommendations and look forward to achieving some, if not all of the recommendations over the next few years through our strong partnerships.”
Community recommendations for HIV research
Below is a summary of some of the issues raised and discussed by the speakers at the community forum.
The importance of good data
All speakers identified the importance of good data to underpin advocacy for and implementation of responses to HIV for community groups. The speakers discussed a number of issues to consider and prioritise in the gathering of HIV and community data.
- The integration of an ethnicity indicator alongside cultural and linguistic diversity indicator could provide a clearer understanding of HIV diagnoses and where gaps in access to healthcare may lie. A standard set of indicators, set by the Australian Bureau of Statistics, would provide consistency in data collection.
- Aggregating data to regions is problematic for culturally diverse communities as there is huge diversity within regions and even within countries.
- Interoperability of jurisdictional and national datasets is a challenge, but improvements to data linkage could mitigate this. Trusted organisations like the Kirby Institute can play a leadership role advocating for improvements to these systems.
- A shift from ‘overseas born’ to also examine first- and second-generation migrants could glean more informative insights into the diverse cultural and ethnic experiences of people and communities within Australia. For example, the ability to disaggregate Australian-born gay and bisexual men by a more accurate measure of cultural and linguistic diversity status may highlight important disparities.
- That good data is only half the battle, and that we need decision makers to implement policies and legislation that is guided by the data. A salient example of this is the criminalisation of sex workers and drug users; despite the overwhelming evidence of the harms of these approaches.
- We need a better understanding of the data for sex workers who are gender diverse as well as from Aboriginal and Torres Strait Islander communities, to ensure we can respond to the needs of those diverse groups.
The speakers acknowledged the positive results that can be achieved with co-designed, targeted education, messaging and access for HIV prevention, as evidenced by the high uptake of PrEP among gay and bisexual men across Australia. But gay and bisexual men continue to experience the highest proportion of HIV diagnoses, so it is important that prevention and testing among this group and their intersecting communities is prioritised. Ben Wilcock (Health Equity Matters), Megan Campbell (NACCHO) and Mish Pony (Scarlet Alliance) raised some particular points about targeted HIV prevention.
- We should be aiming for virtual elimination of HIV transmission in Aboriginal and Torres Strait Islander populations; with the relatively small numbers of HIV diagnoses among Aboriginal and Torres Strait Islander peoples, this is within reach. At the same time, it is essential to enhance and maintain elimination of HIV transmission across all populations nationally.
- Needle and syringe programs are essential for Aboriginal and Torres Strait Islander populations. Better access to these programs is needed, including in prisons. Research can help advocate for expanded access to these life-saving initiatives.
- We need better data about PrEP uptake in Aboriginal and Torres Strait Islander communities.
- Syphilis is a big risk for HIV elimination in Aboriginal and Torres Strait Islander communities. It is important to support and enhance awareness, and increase testing, treatment and contact tracing.
- Doxy-PEP is an important new initiative but like HIV PrEP, uptake is expected to be much lower for Aboriginal and Torres Strait Islander people at risk of syphilis. Targeted initiatives could support higher uptake among these communities.
- We need more data for doxy-PEP supporting use in heterosexual people and women. We need Aboriginal and Torres Strait Islander specific research that explores the acceptability, feasibility and impact of doxy-PEP for Aboriginal and Torres Strait Islander communities.
- Continued research and advocacy for the decriminalisation of sex work, and centrality of this to the HIV response, is required. This is particularly important in the international context.
Identifying and responding to gaps in testing
Gay and bisexual men continue to be a key population for HIV in Australia, but at the same time, this community has proven to be highly engaged in health seeking behaviour including testing, as well as PrEP and treatment as prevention. However, there are some groups of gay and bisexual men, and other at-risk groups, where gaps in accessing testing lie. Megan Campbell (NACCHO), Mish Pony (Scarlet Alliance) and Ben Wilcock (Health Equity Matters) addressed some of these challenges.
- For Aboriginal and Torres Strait Islander populations, there are still gaps in comprehensive STI testing. STI tests are not always being conducted in 715 health assessments for priority age groups and where they are conducted, they don’t always include HIV (or syphilis). Integrating STI and HIV testing in 715 health assessments is required.
- Some Aboriginal and Torres Strait Islander communities are interested in HIV point-of-care testing and there are situations where it would add great value, particularly in remote areas. Research is needed to understand the acceptability, feasibility and impact of HIV point-of-care testing in different areas.
- Undertake research to determine what new models could support testing uptake in Aboriginal and Torres Strait Islander communities, particularly for those groups that are less engaged with health services.
- Research is crucial to continue to prioritise and advocate for free, anonymous and confidential HIV testing for affected populations, including sex workers.
- Implementation research would enhance understanding of new technologies, for example new forms of PrEP and treatment (injectables and more).
There have been significant advances and gains made in HIV treatments, including in uptake. Ben Wilcock (Health Equity Matters) referenced the UNAIDS targets of 95 per cent of people living with HIV knowing their HIV status, 95 per cent of people living with HIV being on antiretroviral treatment, and 95 per cent of those on treatment being virally suppressed. Australia has made good progress towards these goals, especially gay and bisexual men, but there are a number of gaps hindering progress. Ben Wilcock, Megan Campbell (NACCHO), and Brent Clifton (NAPWHA) raised some particular points.
- There is a challenge in maintaining focus on existing priorities while ensuring no one is left behind. In the 95-95-95 UNAIDS targets, we need to understand who the 95 per cent are who are achieving and sustaining testing and treatment goals, and who the remaining 5-5-5 are. This includes understanding the number of people living with HIV who have a detectable viral load, and the reasons why.
- We need to improve our ability to identify people who are undiagnosed and those with late diagnoses.
- HIV drugs are s100 drugs which means they are not included on the Closing the Gap PBS copayment scheme for Aboriginal and Torres Strait Islander people. We need consistency across the country to ensure access to HIV medications is easy, affordable and sustainable.
- It is important to maintain focus on research for new HIV treatments, particularly where they’ll help address equity gaps.
- Like testing, we need research into health care models that support engagement in care – particularly those that are led by nurses and Aboriginal and Torres Strait Islander health workers and practitioners.
- We need to develop targeted messages for diverse at-risk communities that highlight the evidence for treatment efficacy, including ‘treatment as prevention’ and ‘Undetectable = Untransmittable’ and support informed treatment decisions by people living with HIV. This has already been done well for Australian-born gay and bisexual men, but it is important to identify and prioritise communities where gaps in treatment education and uptake lie.
- We need to ensure people living with HIV start treatment as early as possible to prevent health complications.
- Thanks to the highly effective HIV treatments of today, people living with HIV are living long lives, and are an ageing population. We therefore need to ensure that research into the effects of ageing on people living with HIV is expanded and prioritised so that health and wellbeing is improved as they age.
- Community literacy around the science of an HIV cure should be improved.
- Participation in cure research should be encouraged and made more accessible, particularly for women.
- It will be important to communicate progress towards a cure.
Stigma and qualitative research
The issue of stigma around HIV has been a consistent challenge for all communities impacted by HIV. This issue was raised in particular by Brent Clifton (NAPWHA) and Mish Pony (Scarlet Alliance), but is applicable within and across all communities.
- Research involving people living with HIV should be underpinned by working towards good quality of life for people living with HIV. We need to ensure that treatment and viral suppression are not the only measures of health for people living with HIV. Ending HIV transmission is the other priority for HIV research.
- More qualitative research is needed on the lived experience and journey of multicultural Australians: risk factors, transmission settings, mental health, inclusiveness of peer support.
- Continued and further research on stigma, and interventions for stigma reduction (including their evaluation) should be explored.
- It is important to safeguard mental health and resilience for people living with HIV in the face of real or anticipated discrimination.
- We need to map, undertake surveillance and monitor stigma so that we can develop effective interventions that address stigma, beyond asking people living with HIV to be resilient.
- Researchers can partner with sex workers to help achieve the goal of decriminalisation, which is demonstrated to improve sex worker health.
How we do research
The way research is conducted has a direct impact on the efficacy and robustness of the evidence base. All speakers addressed the ways in which research could be enhanced within their communities. Daniel Coase (FECCA), Megan Campbell (NACCHO), and Mish Pony (Scarlet Alliance) highlighted some specific points for culturally and linguistically diverse, Aboriginal and Torres Strait Islander, and sex worker communities.
- We must focus on culturally and linguistically safe communication, including literacy in research. “Research navigators” could guide people through this process.
- There is a need to streamline and simplify research consent processes which often involve pages of consent forms that use complex language, and can be a significant barrier to participation.
- It is essential to maintain and enhance approaches to co-design, including with gay and bisexual men.
- It is important to have a research community and research leadership that is diverse in culture, ethnicity and language. Concerted effort should be made to ensure diversity of researchers undertaking research with diverse communities.
- People living with or at risk of HIV often have intersectional identities. It is important to understand different populations and where they intersect in order to effectively meet them where they are at. Intersectionality impacts an individual’s experience of health and wellbeing.
- It is essential to have Aboriginal and Torres Strait Islander people on the investigator team for Aboriginal and Torres Strait Islander research.
- Researchers have a role in advocating for appropriate governance mechanisms that facilitate community input and power – for all communities.
- It is essential that researchers take the time to conduct research ethically, inclusively, and in a culturally safe manner. It is important to build the Aboriginal and Torres Strait Islander and culturally and ethnically diverse STI and BBV research community.
- Peer workers will continue to be crucial for engagement with all communities.
- Researchers have a role as advocates for evidence based policy.