Zavier Wileman has been going to the same general practice since they were a child. But when they began their transition as a teenager, they were made to feel “like an oddity”.
“It didn’t feel like a safe place because [the doctors] just really didn’t understand gender at all,” they say.
The practice did not know how to meet Wileman’s healthcare needs as a trans person and acted “weird” when they asked about hormone therapy, used by some trans people for medical affirmation of their gender.
Wileman has since found more inclusive gender-affirming health services but says finding empathetic care is a common challenge for the queer community, who do a lot of informal peer support for each other.
“When somebody wants to go to a new doctor, or they need like a psychologist … the first thing that people will do is ask friends in the community: ‘Do you know somewhere that’s safe? Do you know somewhere that’s affirming and knows their stuff?’” Wileman, the queer officer at Curtin University in Western Australia, says.
“Lots of people I know will defer getting help because they’re worried about discrimination.”
Stigma, assumptions and a lack of understanding
A report published in May from Curtin University’s Collaboration For Evidence, Research and Impact in Public Health found ongoing and significant barriers to LGBTQIA+ people using mainstream health services. These include a lack of knowledge and ignorance of the lived reality of LGBTQIA+ people, as well as stigma and discrimination.
Dr Jonathan Hallett, the lead author of the report, says: “A key part of the story that we found was the role of community-controlled organisations in providing a really important response to the health disparities that these communities experience.”
Community-controlled organisations are those governed and operated by and for specific communities, such as LGBTIQA+ people. “But they’re chronically underfunded and under-resourced, and can’t cope with the service need within these really diverse communities,” Hallett says.
The report – commissioned by not-for-profit LGBTIQA+ organisation Living Proud and funded by the WA Primary Health Alliance – analysed state and federal health policy to see how and whether LGBTIQA+ people were considered. A review of health disparities was also conducted, alongside consultations with queer services, mainstream health organisations, government health services and individuals with lived experience.
“There have been improvements in the healthcare system but, when we spoke to study participants, they were still sharing some really awful stories of direct stigma, or a lack of understanding or assumptions about their lives,” Hallett says.
One lesbian woman living in regional Western Australia told the researchers about taking her son to the GP and constantly being asked about “the father”. “Why do I have to out myself every single time I’m here?” she told the researchers.
She says she avoided GPs as a result, ending up in emergency care on multiple occasions for health issues that could have been addressed earlier.
The report called for secure, long-term government funding of community-controlled health organisations, including in regional areas where LGBTIQA+ people experience greater inequity and barriers to accessing appropriate and safe healthcare.
Courtney Dunkerton, who lives in the town of Busselton in WA’s south-west, no longer visits her local GP for her trans-related health issues after the doctor would not prescribe pain relief for a painful, three-hour electrolysis procedure to remove facial hair.
“The outside of the top lip is one level of pain, which is very high, and then directly under the nose [the pain] is just off the charts, the worst of the worst.”
Instead, Dunkerton drives a more than four hours round trip to Perth to visit a GP who has lived experience as a trans person. “She just has a different level of knowledge and understanding of the trans experience.”
Trans young people are particularly vulnerable to the impact of stigma and rejection, the Curtin report found, with nearly three-quarters reporting a diagnosis of depression or anxiety, about 80% reporting self-harm and suicidal thoughts and 48.1% reporting a suicide attempt.
Prof Adam Bourne, the director of the Australian Research Centre in Sex, Health and Society at La Trobe University, says the report findings “very much reflect what we observe in every state”.
“We need to be ensuring that every LGBTIQ person can go to any health service and receive the quality of care that they deserve in a safe and affirming environment – but that is taking and will continue to take a really long time to achieve,” he says.
“In the meantime, there are often LGBTIQA+ people in some quite acute circumstances. There’s a need that needs to be met right now, not in 10 or 15 years’ time, and I think that’s where community-controlled organisations really can play a significant role.
“But none of them are funded anywhere near the scale that’s required to really move the needle in terms of health disparity.”
What needs to be done
Progress is being made, with the federal government preparing the first ever national action plan for LGBTIQA+ health and wellbeing, due for release later this year. The plan’s expert advisory group says engagement with LGBTIQA+ community controlled services is essential, given unsafe and negative experiences in primary care and challenges related to access and costs.
Other barriers to primary care include misgendering or exclusionary language and shame-based narratives around HIV and other sexual health matters, the Curtin report found. Australian gay and bisexual men living in regions with higher levels of stigma are less likely to undergo HIV/STI testing, receive diagnoses, or engage in prevention.
In May the federal health minister, Mark Butler, announced Australia as the fourth country to sign on to the principles of the Undetectable=Untransmittable (U=U) global HIV campaign, joining Canada, the United States and Vietnam. The campaign aims to spread recognition that a person living with HIV on effective antiretroviral treatment will reach an “undetectable” viral load and cannot sexually transmit the virus.
David Polson, who participated in 28 drug trials for HIV treatment, says adopting U=U is a significant step towards combatting stigma.
Polson acknowledged those who have stood against stigma at a time when homophobia was particularly rife, including the nurses in Ward 17 South – Australia’s first dedicated HIV/Aids treatment and care centre, which opened in 1983 and became the epicentre for treating Sydney HIV patients.
“At a time of hatred and fear outside the ward, we felt their compassion [that] we didn’t see outside,” Polson says.
Butler says the LGBTIQA+ community has been responsible for many health successes, including the near-elimination of HIV transmission in Sydney. The LGBTIQA+ community’s proactive response to the virus “has taught us more broadly in the health sector how to do good policy, how to do good design, how to do good delivery, how to put patients truly at the centre of a health response, rather than have that response to be simply government or clinician-led,” he says.
On 21 May, he announced $43.9m towards strategies to eliminate the transmission of HIV in Australia by 2030.
In the meantime, NSW and WA are the only jurisdictions with specific health strategies for their LGBTIQA+ populations. A first-of-its-kind multidisciplinary LGBTIQ+ health service, the Kaleido health centre, will open in Sydney later in 2024, offering gender-affirming care, mental health care, sexual health care, drug and alcohol services and cancer screening.
Hallett says his report aimed to provide a focal point for a discussion on a response. “A lot of the really exciting work is coming out of community controlled LGBTIQA+ organisations, and it’s really about centring the stories of those organisations and community in finding answers to addressing these problems – that pleasingly has been the story on a national stage, and it does feel like that’s gaining momentum.”
