Disruption of gender‐affirming health care, and COVID‐19 illness, testing, and vaccination among trans Australians during the pandemic: a cross‐sectional survey

Transgender and gender‐diverse (trans) people — those whose gender is different to their sex recorded at birth — include trans men, trans women, non‐binary people, and people of other cultural gender identities, including Sistergirls and Brotherboys. We have previously described the poorer health status and barriers to care for trans Australians prior to the coronavirus disease 2019 (COVID‐19) pandemic.1,2 Systemic discrimination and socio‐economic disadvantage contribute to substantial mental distress; in a 2017–18 Australian survey, 73% of trans people reported a history of depression, and 43% had attempted suicide.2,3 In the United States, the risk of death by suicide is more than twice as high for trans people as for people whose gender identity matches their sex recorded at birth,4 and differences in all‐cause mortality have also been reported.5

Social restrictions early in the COVID‐19 pandemic had a negative impact on the mental health of trans Australians.6 In contrast to many countries, the first eighteen months of the pandemic were characterised by relatively low numbers of COVID‐19 cases and deaths because of widespread social restrictions.7 Our community survey during the first three months of the pandemic (1019 respondents) identified major disruptions to health care for trans people; gender‐affirming surgery was cancelled or postponed for 61% of those for whom it was planned, and this experience was associated with a 56% increase in the likelihood of thoughts of self‐harm or suicide.8

Little is known about the health care experiences of Australian trans people later in the pandemic. Overseas, social stigma, fear of discrimination, and mistrust of health care professionals contributed to COVID‐19 vaccine hesitancy among trans people.9 Further, trans people often report chronic illness and mood disorders,4,5,10 both known risk factors for post‐COVID‐19 syndromes (long COVID).11,12 Disruptions to gender‐affirming health care would also be anticipated, as well as increased discrimination in health care, the result of difficulty in providing training to health care providers in trans‐affirming health care, compounded by COVID‐19‐related priority shifts. We therefore assessed rates of disruption of gender‐affirming health care, of COVID‐19 illness, testing, and vaccination, and of discrimination in health care during the pandemic in a cross‐sectional survey of Australian trans people.

Methods

We recruited participants for our online cross‐sectional survey from among the participants in TRANSform, an ongoing longitudinal Australian trans health survey‐based study, launched in May 2020. TRANSform participants — people aged 16 years or more, currently living in Australia, and with a gender different to their sex as recorded at birth — were recruited by non‐probability snowball sampling; invitations to participate were posted on social media and shared by Australian trans community support groups and organisations. The research protocol was retrospectively published on the University of Melbourne research website (https://doi.org/10.26188/24002469.v1; 22 August 2023).

TRANSform participants complete an enrolment survey that collects basic demographic information and an email address, and are then invited by email to participate in two or three sub‐studies each year. The respondents to the survey reported in this article had been recruited for TRANSform and completed the first online survey on the impact of COVID‐19 on the trans community during 1 May – 30 June 2020. The survey, developed in March 2020 in response to clinical reports of poor mental health and suicide among trans people during the pandemic, was not piloted or validated; the survey and its results have been described in detail elsewhere.6,8

Our second COVID‐19 survey assessed the more recent impact of the pandemic on trans people. Of the 1019 participants who completed the initial online survey, 875 were invited in emails including an individualised link to complete the follow‐up survey online during 1–31 May 2022 (144 people could not be contacted or had ended participation in TRANSform). The survey preamble stated that completing the survey implied consent to participation and the publication of survey results.

The survey was designed collaboratively by our core team of researchers, who are members of the Australian trans community, with support from clinicians specialised in health care for trans people. Survey data were collected and managed using REDCap electronic data capture tools hosted at the University of Melbourne.

The survey comprised multiple choice and optional free text questions about the general demographic characteristics of the respondents, disruptions to gender‐affirming hormone therapy and surgery, telehealth experiences, discrimination in health care, and COVID‐19 testing, infection, and vaccination during the pandemic (Supporting Information). We report respondent characteristics as counts and proportions (categorical variables) or medians with interquartile ranges (IQRs) (continuous variables).

Ethics approval

The study was approved by the Austin Health Human Research Ethics Committee (HREC/57155/Austin‐2019), the ACON Research Ethics Review Committee (2020/03), and the Thorne Harbour Health Community Research Endorsement Panel (THH/CREP 20‐006).

Results

Of the 875 participants invited to complete the survey, 516 provided valid responses (59%). Their median age was 33 years (IQR, 26–45 years); 193 identified as women or trans women (37%), 185 as men or trans men (36%), and 138 as non‐binary (27%) (Box 1).

Disruptions to gender‐affirming health care

Of the 448 participants currently receiving gender‐affirming hormone therapy (87%), 230 (49%) reported at least one type of disruption to treatment during the pandemic, most frequently difficulties with regard to access (eg, disruption of pharmacy supply; 153 respondents, 34%) or obtaining prescriptions (67 respondents, 15%). Of the 85 participants who had booked gender‐affirming surgery since 1 May 2020 (16%), surgery had been cancelled or postponed for 37 (44%); disruptions were most frequently reported by respondents in Victoria (24 respondents) and NSW (six respondents), the states most affected by COVID‐19‐related restrictions. Disruptions to post‐surgery care were reported by 40 participants who had undergone gender‐affirming surgery since mid‐2020 (42%) (Box 2).

Telehealth

A total of 471 participants had used telehealth services during the pandemic (91%), compared with 30.8% of Australians during 2021–22.13 Of those who had used telehealth services, 372 (79%) reported that telehealth appointments were more accessible than in‐person consultations, 205 (44%) that they were less effective than in‐person consultations, and 145 (31%) that they were just as or more effective (Box 2). In free text survey responses, participants reported that telehealth services improved access to care for many neurodivergent trans people, trans people with disabilities, and those living in regional and remote areas. However, privacy was a problem, particularly for people living in unsupportive households.

Discrimination in health care

A total of 287 participants (56%) reported at least one incident of trans‐related discrimination in health care, most frequently misgendering (eg, incorrect pronouns; 209 respondents, 41%) and questions related to being trans when seeking care for an unrelated medical problem (133 respondents, 26%). Non‐binary participants more frequently reported most types of discrimination than trans men and trans women (Box 3).

COVID‐19 testing, infections, and vaccination

Of 512 respondents to the question, 417 (81%) had been tested for COVID‐19 at least once in a testing facility, hospital, or other clinic, of whom 307 (74%) reported one or more trans‐affirming experiences and 81 (19%) one or more negative experiences during testing (Box 4).

Three or more COVID‐19 vaccine doses were reported by 448 of 513 respondents (87%; all Australians: 70%14); seven (1%) had received no vaccine doses (all Australians: fewer than 5%14). Of the 505 people who had received at least one vaccine dose, 416 (82%) reported at least one type of trans‐affirming experience and 84 (17%) at least one negative experience. Difficulty proving vaccination status because of name or gender mismatches on legal documents was reported by 29 participants (6%) (Box 5).

One or more COVID‐19 illnesses (with or without test confirmation) were reported by 132 participants (26%); 46% of Australian blood donors were seropositive for COVID‐19 in June 2022.15 Long term health consequences of COVID‐19 (eg, fatigue, brain fog three or more months after acute illness) were reported by 49 of 132 participants (37%) (Box 6); an estimated 5–10% of Australians who have had COVID‐19 report such symptoms.11

Discussion

In our May 2022 cross‐sectional community survey of trans people, the proportion who had received three or more COVID‐19 vaccine doses (87%) was larger than for all Australians (70%). Further, the proportion of respondents who reported having had COVID‐19 (26%) was smaller than the proportion of seropositive blood donors in Australia (46%). However, long term symptoms of COVID‐19 (three or more months after infection) were reported by 37% of respondents who had had COVID‐19, considerably higher than the 5–10% estimate for all Australians.11 Discrimination in health care was frequently reported, including misgendering, reported by 41% of respondents. More than 40% of those who used gender‐affirming hormone therapy or had booked surgery reported pandemic‐related disruptions. Telehealth was more accessible than in‐person appointments for 79% of respondents.

Respondents to our earlier (May/June 2020) survey often reported cancellation or postponement of appointments and gender‐affirming surgery, as well as closed patient waiting lists for general, specialist, and allied health services.8 The responses to our second survey confirm that trans people also experienced disruptions and barriers to gender‐affirming health care in Australia later in the pandemic. Disruptions to gender‐affirming hormone therapy were reported by 49% of respondents using it, particularly reduced access to hormones (eg, disrupted pharmacy supply), reported by 34%. COVID‐19‐related cancellation or postponement of gender‐affirming surgery was reported by 44% of respondents seeking it in 2022, still a major problem but down from the 61% who reported disruptions during the first three months of the pandemic.8 The proportion who reported disruptions to care after gender‐affirming surgery (42%) was also lower than in 2020 (62%).8 These findings illustrate the continuing impact of disruptions of elective surgery in 2022, including restrictions of surgical procedures and staff shortages, which affected all elective surgery, not just gender‐affirming surgery. For people who sought gender‐affirming surgery overseas, travel restrictions and its increased cost would have been additional barriers. The impact of these disruptions is likely to continue into the foreseeable future.

As timely access to gender‐affirming health care reduces the incidence of depression and suicidal thoughts and improves quality of life for those who seek such care,16,17,18,19 COVID‐19‐related disruptions have implications for the mental health of trans people. Our earlier survey, for example, found that the likelihood of thoughts of self‐harm or suicide was 56% greater for people who experienced cancelled or postponed gender‐affirming surgery.8 Access to timely and affordable gender‐affirming health care should accordingly be improved.

Expansion of telehealth services during the pandemic led to a significant increase in their use.20 Telehealth services had been used by 91% of survey respondents during the pandemic, and they were described as more accessible than in‐person consultations by 79% of those who used them. Neurodivergent trans people, trans people with disabilities, and those living in regional or remote areas benefited from improved access to care via telehealth services. However, only 31% of telehealth users described their consultations as just as or more effective than in‐person consultations, compared with 62% of Australians who described telehealth consultations as just as good as or better than in‐person consultations.21 The efficacy of telehealth may be hampered by the inability to perform physical examinations, technological difficulties, and less effective communication than in face‐to‐face consultations.21 Privacy was also raised as a concern when using telehealth, particularly by respondents living in unsupportive households.

In our pre‐pandemic survey of trans people, 26% reported discrimination in health care.2 A larger proportion of respondents to our May 2022 survey reported discrimination; 56% listed one or more incidents of trans‐related discrimination while seeking health care during the pandemic. The increase may reflect the continued difficulty in providing training in trans‐affirming health care, compounded by priorities shifting to COVID‐19‐related professional development. Misgendering was the most frequently reported form of discrimination (41%); the use of correct names, pronouns, and inclusive language can be powerfully affirming and reduce hesitancy to seek medical care.22 Training in trans‐affirming health care should be improved in continuing professional development and university curricula for primary, allied health, and specialised care.

Overseas research has suggested that the risk of COVID‐19 is higher for lesbian, gay, bisexual, transgender, queer (or questioning), intersex, asexual, and other gender and sexual minority (LGBTIQA+) people because of their employment in large numbers in areas such as hospitality and retail.23,24 However, the proportion of respondents to our survey who reported having had COVID‐19 (26% in May 2022) was smaller than the seropositivity rate among Australian blood donors (46% in June 2022).14 General COVID‐19 social restrictions and mask requirements probably reduced infection of people in exposed occupations. Higher vaccination rates, unemployment, and social isolation among people in the trans community may also have depressed infection rates.

Long term health consequences were reported by 37% of respondents who had had COVID‐19, a proportion markedly higher than that for all Australians (5–10%).11 The larger proportion may be related to the high prevalence among trans people of chronic illness and mood disorders,10 risk factors for severe COVID‐19 and long COVID.11,12

Concern has been raised overseas about vaccine hesitancy among trans people. However, 87% of our respondents reported receiving three or more COVID‐19 vaccine doses, a larger proportion than for all Australians (31 May 2022: 70%).17 The evidently lower level of hesitancy may reflect greater vaccine accessibility in Australia than in some other countries, and the success of targeted vaccination campaigns and promotions, such as the Victorian Government #FabJab initiative with its pop‐up LGBTIQA+ vaccination clinics25 and specific advice on the TransHub website in New South Wales.26

Limitations

Non‐probability snowball recruitment for the TRANSform surveys and the response rate for the current survey (overall: 59%) limit the representativeness of our respondents and consequently the generalisability of our findings. Online recruitment may explain the large proportion of younger people among our respondents, whose experiences may not reflect those of older trans people or trans people who did not participate in the survey, including people who are less computer proficient, live in regional and remote areas with limited internet access, or have difficulty with English.

The predominance of respondents from Victoria and New South Wales also characterised earlier Australian trans community surveys.2 Recall bias may have influenced our findings. Further, our survey respondents may have been particularly engaged with health care, perhaps explaining their high vaccination rate. National population data for many variables were too limited for comparison with our findings.

Longer term consequences of COVID‐19 were self‐reported, limiting comparisons with long COVID in the broader community. However, long COVID is not well defined, and the broad nature of the survey question was consistent with contemporary knowledge of the syndrome and the most frequently persistent symptoms (brain fog characterised by difficulties in cognitive function, attention, and memory, persistent fatigue, and post‐exertion malaise).11

Despite these limitations, our survey provided a platform for trans people, often marginalised and underrepresented in research, to share their experiences during the COVID‐19 pandemic. As the only Australian study in this area, it provides insights into their experience of health care, including discrimination.

Conclusion

Relatively high COVID‐19 vaccination rates among the respondents to our survey of trans people in Australia may reflect the success of targeted LGBTIQA+ health promotion and vaccination programs during the pandemic. They may also indicate that safe, trans‐affirming health care will be used by trans people if it is provided. A targeted public health response, co‐created with the trans community, could reduce the discrimination in health care and health inequity experienced by trans people, ensuring that all health professionals can provide culturally safe and affirming health care.