“You Have to Wait a Little Longer”: Transgender (Mental) Health at Risk as a Consequence of Deferring Gender-Affirming Treatments During COVID-19

With the COVID-19 pandemic evolving rapidly across the globe, scarce medical resources have become centered around care for those who are infected with COVID-19, and so-called non-essential medical care has been set on hold. While there is general consensus about the prioritizing of COVID-19 care, a growing number of health care providers and patient representatives have expressed their concerns with the (long-term) consequences of deferring other medical care (Wang & Zhang, 2020). As this global outbreak continues to spread, inducing fear and anxiety without a clear perspective, this pandemic will especially impact those who depend on proper medical and mental health care. It is largely unknown what the (mental) health status is of the groups that remain out of scope during this COVID-19 crisis, especially those in vulnerable positions and with prior health problems. In this Guest Editorial, we express our concerns over the deferral of most gender-affirming (medical) treatments and the direct and indirect effects this might have on the public (mental) health of transgender and gender non-conforming (TGNC) people, and the health system that serves these individuals. We highlight the increased vulnerability of this group, underline the cumulative burden (e.g., physical, mental, socioeconomic) for many TGNC individuals, and argue why gender-affirming medical and mental health care should be prioritized when re-introducing non-essential medical care (see also Bowleg, 2020; Wang et al., 2020)

Access to Transgender Care

TGNC individuals concern a sizable group in society, among children, adolescents, and adults (Goodman et al., 2020; Zucker, 2017). The incongruence between gender identity and physical characteristics results in experienced dysphoria and severe mental health problems in a considerable share of this group (e.g., Dhejne, van Vlerken, Heylens, & Arcelus, 2016; van der Miesen, Nabbijohn, Santarossa, & VanderLaan, 2018). Gender-affirming treatments have repeatedly been shown to improve physical and mental health of TGNC adults (van de Grift, Elaut, Cerwenka, Cohen-Kettenis, & Kreukels, 2018; White Hughto & Reisner, 2016), as well as in youth (van der Miesen, Steensma, de Vries, Bos, & Popma, 2020). For TGNC individuals, gender-affirming treatments may consist of mental health care, including psychological support and/or medical treatments. Due to the diverse needs of care-seekers, both aspects of care are important in providing adequate gender-affirming care. Yet, access to this essential care has been challenging, whether it is due to waiting lists, strict treatment protocols, or practical barriers such as travel distance or lack of insurance (Puckett, Cleary, Rossman, Newcomb, & Mustanski, 2018). Baseline access to gender-affirming medical care is already a serious issue in many countries around the world; a recent survey in The Netherlands found, for example, that 67% of the adult TGNC care-seekers waited more than 18 months for an initial intake and hormone treatment, and another median of 6 months before surgical intake (Ministry of Health, Welfare, and Sports, 2019). In many regions, TGNC individuals have no access to gender-affirming care at all (Puckett et al., 2018). Deprivation of adequate care in the short term might result in an increase in self-medication of gender-affirming hormones, including potential physical risks without proper monitoring. In the long term, deprivation of adequate care might also increase allostatic load (i.e., stress), depression, non-suicidal self-injury, and suicidal ideation and behavior, which ultimately results in a decreased life expectancy (White Hughto, Reisner, & Pachankis, 2015). In this respect, not only the start of treatment is important, but also the continuation of ongoing treatment and support, as a recent study found that increased risk for suicidality might also be present during the course of gender-affirmative treatments (Wiepjes et al., 2020).

Physical Health Effects: Risk of Severe COVID-19 Infections and Limited Follow-Up Care

Early evidence on characteristics of individuals at risk of developing more severe COVID-19 infections and less favorable outcomes include male sex, obesity, and coexisting physical health issues, such as hypertension (Hu et al., 2020; Pozzilli & Lenzi, 2020; Zhou et al., 2020). Although evidence on the course of COVID-19 infections is largely unknown for all individuals, it is specifically uncertain how findings on sex differences, as opposed to gender differences, relate to TGNC individuals. Who are at risk? Those who currently identify with a male gender (and receiving testosterone treatment) and/or those with a male sex assigned at birth with a non-male gender identity? While some hypothesize the possible role of testosterone in influencing the course of COVID-19 infections (Pozzilli & Lenzi, 2020), conclusive evidence is lacking. In addition, lower body awareness and barriers toward sports engagement result in higher incidences of overweight in TGNC individuals (VanKim et al., 2014), making them more at risk of developing severe COVID-19 infections. Also, forthcoming cardiovascular diseases as well as chronic stress may impact the functioning of the immune system, putting TGNC individuals further at risk. Fortunately, gender-affirming medical treatments can result in better physical health and lowered stress (White Hughto et al., 2015), and therefore might protect TGNC individuals from more severe COVID-19 infections.

Besides the direct health effects of more severe COVID-19 infections, limited access to follow-up of gender-affirming medical care can put TGNC individuals at risk for multiple physical health conditions or complications. Long-term suboptimal gender-affirming hormone doses can increase the chance of developing osteoporosis or cardiovascular disease (Defreyne, Van de Bruaene, Rietzschel, Van Schuylenbergh, & T'Sjoen, 2019). Limited access to postoperative follow-up care can result in developing, for example, voiding issues (e.g., urinary tract hesitancy) or increased chance of requiring reoperations at a later point. This is of particular importance for TGNC individuals as it has been reported that this population already feels hesitant to access medical care due to fear of stigma and misunderstanding (Kosenko, Rintamaki, Raney, & Maness, 2013).

Mental Health Effects: COVID-Stress, Increase in Dysphoria, and Suicidality

Next to physical vulnerabilities, TGNC individuals are at increased risk for developing mental health problems, regardless of the COVID-19 crisis (Dhejne et al., 2016). Social isolation, fear for the health of oneself and others, and the loss of routine impact the mental well-being of many individuals during the COVID-19 pandemic (Fiorillo & Gorwood, 2020). However, for many TGNC individuals, these effects are superimposed on existing mental health problems and decreased resilience due to longer existing stress. For TGNC individuals experiencing severe bodily distress or social stigma due to physical incongruence, gender-affirming medical care is essential to decrease these feelings of (social) anxiety, depression, hopelessness, and subsequent suicidal thoughts (White Hughto & Reisner, 2016; Wiepjes et al., 2020). Conversely, insufficient access to this care puts a significant mental health burden on this population.

The current COVID-19 crisis not only defers gender-affirming medical treatments of people who already had clinical intakes or surgeries scheduled, the limited total capacity of the health system makes it likely that access to care will be substantially delayed for all TGNC individuals seeking gender-affirming care in the coming years. This causes many TGNC individuals to live in the difficult twilight zone between assigned sex and experienced gender identity for an extended period. While the effects of deferring initial care remain largely out of scope of health care professionals (since individuals are on waiting lists), TGNC support groups have already expressed their concerns signaling an increase in suicidal ideation among their members (e.g., The Trevor Project, 2020). Additionally, for those who are already enrolled in mental health clinical services, the frequency and effectiveness of mental health counseling might be decreased for many because of the lack of good-quality telehealth. Moreover, the decreased opportunities to have social and peer support likely affect (mental) health as well (de Vries et al., 2015). For TGNC youth, the closing of schools can be distressing due to the absent availability of peer support. As TGNC individuals already experience more loneliness and are less often in a relationship (Kuyper, 2017), social isolation and social distancing will further impact these intersections with mental health (Brennan, Card, Collict, Jollimore, & Lachowsky, 2020). Taking all those different aspects of mental health, the deferral of gender-affirming medical treatments, and all the potential impacts into consideration, TGNC individuals will likely be suffering from a cumulative mental health burden during this global pandemic.

Socioeconomic Factors: Intersections Between Health, Human Rights, and Socioeconomic Stress

In general, socioeconomic factors can impact (mental) health significantly. Parallel to the physical and mental health challenges TGNC individuals face, socioeconomic stress (e.g., lower job security and income) also intersects with their overall well-being (White Hughto et al., 2015). Recognizing this relationship, TGNC individuals are thus likely to be disproportionally affected by both the COVID-19 pandemic, as well as the deferral of gender-affirming medical and mental health care. With the possible loss of jobs and income, financial access to gender-affirming care can be threatened, especially when being uninsured or being insured through employers. On top of this, attending TGNC-safe spaces is temporarily impossible due to social distancing restrictions, which may be more important when living in households threatened by violence or transphobic stigma. On a larger scale, advocacy and stakeholder groups may experience additional barriers in getting organized. TGNC advocacy and stakeholder groups will likely have less possibilities for providing general public health education at schools and through mainstream media. With the current global restrictions on organizing meetings and protests, it will be more difficult to attend to the need for equal human rights for TGNC individuals. TGNC legislation was already at risk in certain countries, but the current COVID-19 pandemic may push this topic even further down the political agenda. Some governments even use the state of emergency to file legislation that reduces TGNC rights (e.g., legal gender recognition is being banned in Hungary; see Walker, 2020), and increased discrimination has already been reported (Perez-Brumer & Silva-Santisteban, 2020), while multiple pro-TGNC legislations have been put on hold given the COVID-19 initiatives. Ultimately, this will further delay or endanger the possibilities to access proper gender-affirming care and gender recognition, putting TGNC individuals at risk of negative health outcomes, considering the intersections among socioeconomic, human rights, mental, and physical health.

Transgender Research: Possible Consequences and Considerations

Next to the emerging risks for TGNC individuals, the COVID-19 pandemic is likely to delay ongoing and future transgender research initiatives. As the pandemic has not only shut down non-essential care but also universities and research institutes as a whole, some ongoing and follow-up studies have been put on immediate hold. While there has been a consistent increase in publications related to transgender research over the past decades (Wanta & Unger, 2017), the current pandemic might have long-term consequences for this field that already has many understudied topics and populations (e.g., transgender elderly, non-binary individuals, new surgical techniques). For ongoing studies, the data collected during the COVID-19 pandemic might be subject to bias, as questionnaires regarding mental health, for example, will be strongly dependent on the current global situation. As no standardized measures have yet been developed to assess the (mental health) effects on life during a pandemic, it remains uncertain how generalizable data collected at present will be.

For researchers, this pandemic might also come with an increased uncertainty with regard to financial resources to perform research. While some universities might have more flexible policies regarding, for example, grant applications, other researchers might not experience this leniency, thereby putting future projects on hold. In addition, although some scientific societies transfer research conferences to online-only, others are canceled. This might reduce network building, research dissemination, and future career possibilities.

Lastly, the travel restrictions and conference cancellations could be a threat for stakeholder involvement in research. TGNC stakeholder involvement is increasingly on the global scientific agenda, in both TGNC adult (Bouman, 2018) and youth research (Strang et al., 2019). Since human contact facilitates listening, learning, and the exchange of views, the COVID-19 pandemic might challenge these developments. On the other hand, novel ad hoc collaborations develop online, including a global scientific study on the effects of COVID-19 on TGNC health and health care (Trans Care COVID-19: https://www.transcarecovid-19.com/).

Summary and Opportunities

The COVID-19 pandemic is a global crisis taking place on an unprecedented scale, and the full effects have yet to unfold. Almost every individual, household, industry, and country is affected in some way or might be in the future. TGNC individuals and their supporting health care systems are no exception. While gender-affirming care was already facing substantial challenges, the pressure the COVID-19 pandemic puts on the health care system adds a sizable burden to effectively support the (mental) health of many TGNC individuals. At the moment, the main obstacles are the deferral of gender-affirming treatments and limited access to (mental) health care, jeopardizing the physical and mental health of a large number of TGNC individuals. Additionally, socioeconomic hardship and less attention for the improvements of TGNC rights will put an increased strain on the community.

TGNC advocates, supporting health care providers, governments, and policy makers are collaboratively responsible to address the physical and emotional consequences of the COVID-19 pandemic and to address not only these present obstacles, but also structural obstacles to gender-affirming health care. Before this pandemic, already increasing attention has been given to the implementation of blended care (i.e., combining face-to-face consultations with online appointments and therapy; Wentzel, van der Vaart, Bohlmeijer, & van Gemert-Pijnen, 2016) but widespread use in transgender care was lacking. As it is unlikely that TGNC health care facilities will operate as usual soon, professionalizing telehealth and online peer support becomes a necessity now. The current situation might therefore provide opportunities to critically review aspects of health care systems’ barriers, increasing the systems’ capacity, and implementing blended care to optimally benefit of the advantages of this type of care. This could lead to a decreased number of standard face-to-face intake contacts prior to transition by, for example, providing psychoeducation online. By substituting physical contacts with telemedicine, travel cost will be reduced and by developing teleconferencing between health care disciplines interdisciplinary and speedy clinical decision-making will be facilitated. In this regard, given the scarce resources, collaboration between institutions to implement this blended care is highly recommended to arrange effective regional networks and interdisciplinary care, whereas expanding telemedicine would also further increase the strength of (worldwide) clinical collaboration.

In addition, the current situation, in which many are getting accustomed to teleconferencing, can provide opportunities for scientific collaborations. This can include online conferences, educational initiatives, and disseminating new research findings with TGNC communities. Similar to clinical opportunities, researchers can experiment with digital substitutes for study participation, such as online interviews and questionnaires, in order to reduce barriers to engage and improve the generalizability of their findings (e.g., by reaching traditionally underserved populations).

In conclusion, the COVID-19 pandemic is obviously causing numerous societal challenges. During this crisis, many TGNC individuals may be subject to severe (mental) health threats, resulting from both the pandemic itself and the subsequent deferral of gender-affirming care. We argue that non-essential gender-affirming care, both medical and psychological, is actually essential to ensure the health of this population, which should be prioritized when re-introducing care. At the same time, the present crisis provides opportunities in critically reviewing existing barriers to care, introducing telemedicine, and implementing novel methods of education and research. Attaining these outcomes, however, is strongly dependent on how effectively all relevant stakeholders will be able to collaborate together.