Author: Joël Murray (they/them), living and working on unceded Wangal Country, Eora Nation.
Content Warning: This blog discusses topics of sex, sex work, injecting drug use, stigma, and identity-based discrimination.
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As a trans person living with HIV, I am interested in how many people like me are in a similar situation. Peer support and connection have been shown to be critical for people living with HIV and trans people alike. Peers are someone who has a similar or shared lived experience. This could be based on Aboriginality, gender, age, cultural background, HIV status, disability, or different identities or behaviours. The saying “nothing about us, without us” positions people with living and lived experience as experts in their own health and lives.
While I am connected to many people living with HIV from working in peer-based HIV organisations, I am connected to very few trans people living with HIV. Personally, my gender experience and HIV are interwoven and the relationship between the two has evolved over time. Those I used to consider peers are still peers in the sense of living with HIV, but not how HIV intersects with my sexuality and gender as a queer/bi+ non-binary person.
If I am longing to connect with peers, then potentially others are looking for the very same. Which begs the question, how many trans people are living with HIV in Australia?
What is HIV?
HIV is a virus that can be passed on through sex without condoms, blood-to-blood contact, and from birth parent to child. HIV is often passed on when someone does not know they are living with HIV. The only way to know your HIV status is to get a HIV test. If left untreated, HIV may progress to advanced HIV (formally known as AIDS). Advanced HIV means the immune system is unable to fight off infections.
A lot has changed since the 1980s and 1990s when HIV first raised its ugly head. Modern HIV treatments enable people living with HIV to live as long as the general population. Real-world evidence shows that people living with HIV on treatment cannot pass on HIV to their sexual partners. Medicines for the treatment and prevention of HIV have also enabled people living with HIV to have children without passing on HIV, in Australia. Currently, there is limited evidence that medicines for HIV treatment and prevention can prevent blood-to-blood transmission of HIV among people who inject drugs, although they may reduce the risk of HIV transmission.
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Trans people and HIV, globally
Trans people living outside of Australia are at a higher risk of HIV than cis people. Transfeminine people have up to 66 times higher odds of living with HIV, and transmasculine people have up to 6.8 times higher odds of living with HIV. These rates vary between countries and regions. The higher risk of HIV is due to the criminalisation of gender diversity, sex work, certain sexual activities, and injecting drug use, along with stigma and discrimination in healthcare settings.
In the global HIV response, transfeminine people are grouped within ‘men who have sex with men’. This has meant that transfeminine people are ‘hidden’ among this group leading to HIV programs that don’t address the needs of trans femmes. For transmasculine people, there is a lack of specific resources, support, and information about HIV prevention and treatment. Overall, trans people (binary and non-binary) are not captured well in country-level HIV data.
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Trans people and HIV in Australia
The number of trans people living with HIV in Australia is assumed to be low. This means that epidemiologists can provide an estimate, but we don’t know the true number.
The assumption that the rate of HIV is low among trans people is because the Australian HIV response among sex workers and people who inject drugs has been successful compared to other countries. The use of condoms for HIV prevention among sex workers and the introduction of needle and syringe programs for people who inject drugs were adopted early in the Australian HIV response. Laws in some Australian states and territories have allowed some forms of sex work, including decriminalisation in New South Wales. Adoption of HIV prevention tools and enabling laws has contributed to very low rates of HIV among sex workers and people who inject drugs in Australia.
This is not to say that all trans people engage in sex work and/or injecting drug use; rather, that these groups at higher risk of HIV include a high percentage of trans people globally. Similarly to other countries, in Australia the collection of data on trans people and HIV is lacking.
What do the data tell us?
In a large national survey Trans Health Research conducted in 2017-2018, five of the 915 trans people surveyed reported they were living with HIV. This is less than 1% of the people who answered those questions.
How does this compare with different research on trans people in Australia?
The 2018 Australian Trans and Gender Diverse Sexual Health Study reported ten trans people living with HIV or 1.2% of participants were living with HIV. Another study analysed trans people’s data from 46 out of 59 government-funded sexual health services from 2010 to 2017. In the sexual health clinic study, 43 out of 1,260 trans people were living with HIV, which is 3.34% of the sample.
When looking at studies on people living with HIV in Australia, HIV Futures is a survey conducted every three years on the health and wellbeing of people living with HIV. The two most recent studies in this series, HIV Futures 9 (2019) and HIV Futures 10 (2022), had 19 trans participants, or just over 2% of the total number of participants.
We can make an educated guess that the ‘true’ number of trans people living with HIV is somewhere between 1% and 3% percent of all trans people, or around 2% of all people living with HIV are trans. This is higher than in the general population.
Low participation rates of trans people living with HIV in cohort studies, like the first two studies mentioned in this section, could mean that there is a reluctance among community to report their HIV status. Compounded stigma and discrimination – trans, living with HIV, and the intersection with different marginalised communities – may be a barrier to engagement with health services, peer-based organisations, and participation in surveys.
Credit: Levi Meir Clancy via Unsplash.
Challenges and opportunities
The challenges of accurate data collection originate from how questions about gender have been framed historically. For example, the national surveillance report on HIV has been published since 1997 and our understandings of trans people has significantly progressed since then. In the HIV surveillance reports, transgender is positioned as a third gender category, which unlikely captures all trans people, particularly trans people with binary gender experiences. As is the case within the global HIV context, trans women are classified as “men who have sex with men” as the HIV risk event. Conversations are happening between trans communities and researchers at a national and international level for the better inclusion of all trans people in the HIV response.
The accurate collection of data is important to ensure that trans people are not ‘hidden’ within other populations. The Australian Bureau of Statistics Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation (2020) (also known as the 2020 Standard) recommends the two-step question for collecting gender is best-practice.
There are several current reforms among state, territory, and Commonwealth governments to update data collection across their systems, as well as at a community and health service organisation level. As more systems are updated to the 2020 Standard, trans people of all genders will be better captured in data systems.
Better data informs policy makers, researchers, health and social services, community organisations, and individuals within our communities with more accurate insights into trans peoples’ everyday lives, at a population level. Having greater insights ensures that trans people who are at risk of HIV have the knowledge and access to HIV prevention and testing services. For trans people who are living with HIV, access to HIV care and treatment, as well as social connection to peers, results in better health, wellbeing, and quality of life outcomes. That trans people can live their best life, is my hope for all of us.
Trans people living with HIV in Australian studies, proportion (%) of total sample. ACCESS: Australian Collaboration for Coordinated Enhanced Sentinel Surveillance of Sexually Transmitted Infection and Blood-borne Viruses.
Table data can be expanded below, in plain text.
About the author
Joël Murray (they/them) is a non-binary queer person who has been living with HIV since 2010. They have worked in program management, policy, evaluation, research, and advocacy roles for HIV and LGBTQ+ organisations. Joël has a Master of Public Health in Health Economic Evaluation from the University of NSW. Currently, they are Principal Consultant at Neophile, with a focus on engaging key populations in the global HIV response.