COVID-19 Data On Trans And Gender Expansive People, Stat!

Since April 2020, researchers at the Harvard GenderSci Lab have been tracking COVID-19 cases and fatalities by sex/gender across 53 US states and territories, providing weekly updated numbers on the “US Gender/Sex COVID-19 Data Tracker.” This blog post documents the current state of COVID-19 sex/gender data, explains the need for more inclusive reporting, and shows how existing data suggest that trans and gender-expansive people are at increased risk of adverse COVID-19 health outcomes during the pandemic due to inequality, stigma, and structural violence. Although there are crucial gaps in existing data, there is sufficient evidence to suggest that the conditions of the pandemic amplify existing inequalities experienced by trans and gender-expansive people.

Binary Sex Essentialism In Public Health Data

Public health data collection that relies exclusively on a binary model of sex/gender fails to capture COVID-19 health outcomes for intersex, trans, nonbinary, and other gender-diverse populations, undermining recognition of social factors driving health disparities. This is a pressing issue in need of remedy if we are to understand the impacts of COVID-19 among people within these communities. Aside from a few notable exceptions (for example, Massachusetts, Oregon, Rhode Island, and San Francisco), public data collected on COVID-19 health outcomes by US states and cities almost always use binary sex/gender categories, disaggregating data into only two categories of male or female. This erases people whose biologies or identities, or both, fall outside of the cisgender binary.

Two key assumptions underlying this binary model of sex/gender are that the categories of male and female are mutually exclusive and that they capture innate biological differences. Public health reliance on this binary reinforces biological essentialism, which describes differences between male and female as solely biologically determined, typically explained by an individual’s genes, gonads, and genitals. However, sex/gender are also socially constructed and reinforced through gender norms governing behaviors, roles, and gender expression. To effectively capture the complex interaction of biology and society, the combined term sex/gender refers to the entwinement of biologically mediated factors and socially mediated characteristics. In the context of COVID-19, the Harvard GenderSci lab has offered evidence that sex/gender differences in health outcomes are mediated by social context, including occupation, housing, and preexisting health disparities.

Because of this reliance on binary categorization, public health agencies also fail to collect nuanced data inclusive of gender identity (that is, how a person describes their gender), thus conflating sex and gender. This conflation erases trans and gender-expansive people whose gender identities may differ from the sex they were assigned at birth. The conflation is an example of how heteronormative conceptions of sex/gender normalize and naturalize heterosexuality and the sex/gender binary. Queer theorists have introduced the term cisheternormativity to describe the assumed alignment of sex, gender, and sexuality, which presupposes that all individuals are heterosexual and cisgender. Cisheteronormativity thus contributes to stigma and exclusion endured by those who identify with gender identities beyond the binary (such as nonbinary or genderqueer people) or with binary gender identities other than what they were assigned at birth (such as some trans people).

More nuanced data collection on sex/gender is an important start, but of course analysis of public health data on the interaction of sex/gender with age, race/ethnicity, and comorbidity status is needed to fully understand the social factors that influence sex/gender COVID-19 health outcomes. Yet, as the GenderSci Lab has documented, only two US states currently report on the interaction of sex/gender with age, race/ethnicity, or comorbidity status for COVID-19 deaths, despite evidence that COVID-19 has disproportionately impacted communities of color, older adults, and those with preexisting conditions. Interactional data is needed for an intersectional analysis of how the pandemic has disproportionately harmed trans and gender-expansive Black, Indigenous, and people of color (BIPOC). The term intersectionality was developed in relation to the lived experiences of Black women and refers to the interconnectedness of racism, sexism, and other systems of oppression. As a result of the pervasive and persistent lack of intersectional data, there are critical gaps in knowledge about how COVID-19 is impacting multiple marginalized communities.

The Lack Of COVID-19 Data On Trans, Non-Binary, And Other Gender-Expansive People

Data on COVID-19 testing, cases, hospitalizations, and deaths for trans, non-binary, and other gender-expansive people are virtually non-existent. Oregon and Massachusetts are the only US states to include non-binary categories of gender in their COVID-19 reporting. Oregon also includes the term “non-binary,” and Massachusetts includes “transgender.” As the state that includes most comprehensive gender-identity categories, Rhode Island also includes categories for “gender non-confirming, gender non-binary, and transgender” people, as well as a broader category for “LGBTQ+.” At the county-level, some localities stand out for their inclusive data collection: Lane County (Oregon), Wheeler County (Oregon), Monroe County (New York), and Riverside County (California) all provide counts for cases and deaths among non-binary individuals. San Francisco, California, remains the only city in the US to include the categories “trans males” and “trans females” in its reporting of COVID-19 cases (exhibits 1 and 2). Other states and localities have yet to collect data beyond the binary. Despite the promise made by Pennsylvania Governor Tom Wolf on March 30, 2020, to start capturing information about gender identity and sexual orientation in COVID-19 data collection, the Pennsylvania COVID-19 dashboard still fails to display such data breakdowns. California and New York have made similar promises to include data collection on sexual orientation and gender identity, but data collection has either not begun or is not yet available to the public. California however, is making strides to be more inclusive in its reporting with a bill introduced by Senator Scott Weiner, which would require local health departments and health care providers to report LGBTQ-specific data for all medical conditions and outcomes, not just COVID-19.

Exhibit 1: COVID-19 cases by gender as a percentage of total, San Francisco, April 14, 2021

Source: San Francisco Department of Public Health.

Exhibit 2: COVID-19 deaths by gender as a percentage of total, San Francisco, April 14, 2021

Source: San Francisco Department of Public Health.

Another key issue is that existing methods of data collection on gender and sex are not systematic across US states. Twenty-four US states currently disaggregate COVID-19 data into binary categories labeled as “sex,” while 26 states disaggregate COVID-19 data into binary categories labeled “gender.” However, with the exception of Rhode Island, the latter 26 states appear to use gender as a synonym for sex, with category options of “female” and “male,” even though these categories are more consistent with sex rather than gender.

Attempts to address this in some states include the use of categories such as “unknown,” “other,” “neither,” and “missing” in their breakdowns of COVID-19 outcomes by sex/gender. Yet, the meanings of these categories are unclear, and it is impossible to determine whether data on outcomes of trans, non-binary, and other gender-expansive individuals might be grouped under such designations. For example, Illinois reports data on individuals who appear to have withheld their gender during reporting as “left blank.” Kansas and Virginia include an option for “not reported,” but do not specify why this data was not included.

Despite improvements in certain localities, the lack of standardized terms for reporting sex/gender speaks to the issues that remain to be tackled in mainstreaming frameworks for gender-sensitive data collection. In a graph reportedly showing COVID-19 cases disaggregated by sex on Oregon’s dashboard, the terms “female” and “male” are used alongside the term “non-binary” (exhibit 3). In addition to conflating sex and gender, as detailed in the examples above, this categorization ignores trans identified people who do not identify as non-binary (for example, trans women). There are established best practices for reporting on sex/gender that take into account how trans and gender-expansive people prefer to be asked about their gender identity. Rhode Island, for instance, reports cases and deaths disaggregated by sex assigned at birth and gender identity separately. Still, Rhode Island’s published chart on COVID-19 cases by sex includes vague categories labeled “other” and “pending further information” (exhibit 4). These methods of data collection would dramatically improve the accuracy of data capture and affirm the gender identities of gender-expansive people.

Exhibit 3: COVID-19 cases by sex, Oregon, April 19, 2021

Source: Oregon Health Authority.

Exhibit 4: COVID-19 cases by sex, Rhode Island, April 19, 2021

Source: Rhode Island Department of Health.

Overall, the lack of consistent reporting on COVID-19 cases, hospitalizations, and outcomes for trans and gender-expansive people severely limits opportunities for understanding the impact of this pandemic on these populations and preempts efforts to craft a pandemic response sensitive to the needs within these communities. 

Social And Structural Determinants Of COVID-19 Risk Among Trans And Gender-Expansive People

It is important to situate the lack of data on testing, cases, hospitalizations, and deaths among trans and gender-expansive people within the context of the social and structural inequalities and determinants of health impacting these communities’ COVID-19 risks.

Evidence suggests that trans and gender-expansive people face higher risk of chronic conditions, including cancer and cardiovascular disease, as well as health behaviors, such as smoking, that may place individuals at greater COVID-19 risk. The trans and gender-expansive community also bears a disproportionate burden of HIV, which compromises the immune system and if insufficiently treated may lead to higher risk of severe illness from COVID-19. Moreover, the pandemic has created barriers to pre-exposure prophylaxis (PrEP) initiation, increases in PrEP refill lapses, and decreases in HIV/STI testing.

COVID-19 has also impacted access to gender-affirming care, a determinant of health instrumental to the well-being of trans and gender-expansive people. Due to the pandemic, access to medical providers has become limited and restricted in many ways for everyone. For many trans and gender-expansive people, scheduled gender-reassignment and other gender-affirming surgeries may have been delayed. Furthermore, due to social distancing and the restrictions imposed at most health care centers to limit virus transmission, difficulties in accessing providers to acquire prescription hormones may have been problematic as well. These delays in accessing gender-affirming surgeries and reduced accessibility of affirming medical care are likely to negatively impact health within a community already facing significant health disparities and heightened risk for suicide.

For trans and gender-expansive people, who are already more likely to experience poverty and unemployment compared to their cisgender peers, job loss may mean greater food and housing insecurity during the pandemic. Trans and gender-expansive people who rely on sex work may be unable to negotiate social distancing practices. Undocumented trans and gender-expansive people in particular, who are more likely to work in areas deemed essential (for example, farmworkers), may be unable to work from home and also may not have adequate employer-provided health care insurance.

Trans and gender-expansive people also face high levels of homelessness, which means that many may face the decision of having to choose between staying in sex-segregated shelters discordant with their gender identities or living on the street. Among those staying in shelters, the risk of facing mistreatment, such as being harassed, sexually assaulted, or kicked out, is higher compared to their cisgender counterparts. For others, shelter-in-place orders may lead to higher risk and increased severity of domestic violence, since many trans and gender-expansive individuals have been forced to isolate with abusive partners or family members, and COVID-19-related stressors may exacerbate already heightened interpersonal violence. The compounding of social isolation and stress, coupled with the already disproportionate risk for poor mental health outcomes among trans and gender-expansive populations, may lead to further increased risk for suicide and increases in substance use.

Finally, trans and gender-expansive BIPOC, in particular, are likely to be at increased risk for contracting, being hospitalized, and dying from COVID-19. Black, Indigenous, and Latinx populations are up to seven times as likely to die of COVID-19 than White populations in some localities in the US. Trans and gender-expansive BIPOC experience especially high rates of violence victimization, homelessness, and poverty. In addition, intersecting experiences of transphobia and racism when accessing health care have been reported as frequently occurring by members of this population that may lead trans and gender-expansive BIPOC to delay care-seeking for COVID-19 until symptoms become intolerable or unmanageable, thus heightening risk for adverse health outcomes.

Conclusion

Current public health initiatives that address COVID-19 operate without knowledge of how COVID-19 impacts trans and gender-expansive people. Making visible the inequalities of health outcomes and the social, economic, and historical inequalities that drive these health disparities is the crucial first step toward an effective COVID-19 response. Collecting data on how trans and gender-expansive people experience the pandemic, and how these experiences intersect with racial/ethnic health disparities, will provide the foundation for targeted public health interventions that mitigate the impact of the pandemic in these communities.

Collection of data is not without risk as heightened visibility in public health discourse may contribute to increased stigma and violence against trans and gender-expansive people. Those leading data collection efforts must recognize histories of surveillance and abuse of the LGBTQ community by medical researchers. Harmful and unethical studies have undermined the trust between these communities and researchers. Nonetheless, there is a great need for community-based research with inclusive categories of gender/sex that is of direct benefit to LGBTQ communities. Furthermore, public health data collection should go beyond just adding sex/gender categories and address the complexity of social influences on health outcomes. A recent survey of trans and gender-expansive people suggests two strategies for collecting inclusive sex/gender data: one question that asks for sex assigned at birth and a second one that asks about gender identity, or one question that asks for gender identity with a second that asks if the person identifies as transgender. Another research group recommends a three-part questionnaire that asks for the participant’s sex assigned at birth, gender identity, and lived gender. Other recommendations include an option to check multiple categories or write in a gender identity. All of these would make public health data collection about sex/gender more inclusive. While public health data collection may never be able to capture the full lived experiences and identities of gender-expansive people, citizen science campaigns and community-driven data collections may also be a means to circumvent some of the ethical issues posed with government-collected data.

We join a growing coalition of doctors, politicians, activists, and researchers that demand the consideration of trans and gender-expansive people in public health data collection. There is important wisdom in how LGBTQ communities have navigated community building and support in response to past pandemics such as HIV/AIDS. We can learn from their histories of community resistance and resilience.

Authors’ Note

This blog post is the result of a collaboration between the Harvard GenderSci Lab and the Harvard SOGIE Health Equity Research Collaborative.