Sexual and Gender Minority Health in the COVID-19 Pandemic: Why Data Collection and Combatting Discrimination Matter Now More Than Ever

The COVID-19 pandemic has exposed striking racial and ethnic disparities in the United States, with hospitalization and death rates highest for Black and Latinx Americans on a per capita basis and Native Americans and Pacific Islanders also experiencing greater disparities compared with White and Asian Americans.¹ This is attributable to multiple syndemic factors, including higher rates of underlying comorbid conditions; higher rates of living in dense, urban housing and relying on public transportation; and a greater likelihood of working in frontline, essential jobs, such as food service, transportation, and health care, and therefore not being able to socially distance. Black, Latinx, and Native American people are more likely than are White and Asian American people to lack health insurance, less likely to access routine health care, and more likely to avoid health services because of medical mistrust and anticipated microaggressions.

Although COVID-19 has sparked an important conversation about racial/ethnic health disparities, the risks of COVID-19 for sexual and gender minority (SGM) people have received little to no attention. Most SGM people are a hidden population that exists in all racial/ethnic groups. Until recently they were invisible in the health care system. In recent years, the need for training in culturally responsive care and sexual orientation and gender identity (SOGI) data collection has been embraced by major health institutions. Attention to the unique needs of SGM people in the COVID-19 pandemic, however, has been lacking.

GREATER RISK OF INFECTION AND COMPLICATIONS

SGM people disproportionately work in jobs that are considered essential; they may, therefore, be more likely to be exposed to SARS-CoV-2. A Human Rights Campaign Foundation analysis of 2018 General Social Survey data² found that 2 million lesbian, gay, bisexual, and transgender (LGBT) people work in restaurants and food services (15.0% of all LGBT adults), 1 million work in hospitals (7.5%), and half a million work in retail (4.0%). Additionally, SGM people are more likely to live in dense, urban areas, where physical distancing measures are much harder to maintain and have emerged as early COVID-19 infection hotspots. Many, especially bisexuals and transgender people and LGBT people of color, are low income.

SGM people may be more vulnerable to complications from COVID-19. This is because SGM people are more likely to have chronic conditions, such as cardiovascular disease, cancer, obesity, and HIV/AIDS.³ SGM older adults experience higher rates of disability than do their heterosexual, cisgender counterparts.⁴ Sexual minorities are more likely to smoke cigarettes⁵ and vape than are heterosexual, cisgender people. These disparities intersect with racial/ethnic health disparities. All of these conditions and risk behaviors could increase the vulnerability of SGM people to complications if they develop COVID-19.

THE NEED FOR DATA COLLECTION

It is not known whether SGM people are more likely to become infected with SARS-CoV-2, nor is it known whether they are more likely to develop complications from COVID-19 or to die as a result of infection. The role of intersectionality (i.e., whether Black, Latinx, and indigenous SGM people have worse outcomes from COVID-19 than their demographically similar non-SGM counterparts) has not yet been studied. These are critically important questions, because the answers might affect the deployment of resources and the development of culturally tailored interventions. Unfortunately, the US public health system has not been systematically collecting SOGI data and reporting it in real time, so it is not known whether SGM people are more likely to have complications and poorer outcomes from COVID-19.

Nevertheless, the answers to these questions are knowable. The federal government has taken a number of steps over the past decade to encourage or incentivize SOGI data collection to better understand and reduce SGM health disparities and to improve quality of care and population health. At this key moment in this nation’s health, however, public health surveillance systems, including the US Department of Health & Human Services’ COVID-19 laboratory reporting guidance, have a blind spot when it comes to SOGI. Pennsylvania, Washington, DC, Massachusetts, and Rhode Island are taking steps toward collecting SOGI data (Rhode Island collects sexual orientation only) in the COVID-19 pandemic, but data are not yet available. Illinois will add a COVID-19 module to its 2020 Behavioral Risk Factor Surveillance System survey, which also asks about SOGI. This will eventually provide data on SGM populations and COVID-19, but it will not be available until at least 2021.

Since 2015, as part of the Affordable Care Act (ACA), the US government’s electronic health record incentive program has encouraged the collection of SOGI data as a standard demographic variable. There are nationally endorsed, mature data standards for measuring SOGI and protocols to implement SOGI data collection while protecting patient confidentiality are well established.⁶

The nation’s public health response system—at the local, state, and national levels—needs to systematically collect SOGI data to understand how SGM people are experiencing COVID-19 and how SGM disparities intersect with racial/ethnic disparities in COVID-19 outcomes as well as to ensure that prevention, testing, and care services are effectively meeting the needs of SGM people.

THE NEED FOR NONDISCRIMINATION

It is also necessary that discrimination on the basis of SOGI not be allowed in COVID-19 screening or care. It is well established that SGM people experience discrimination in health care; this correlates with poorer health and well-being for SGM people and causes SGM people to not access health care. It also exacerbates SGM health disparities. The Trump administration has promoted anti-SGM discrimination in a wide range of policy areas, including by implementing religion- and “conscience”-based policies that could increase anti-SGM discrimination in health care and social services.⁷

Tens of millions of Americans lost their jobs in spring 2020, and many of them lost employer-provided health insurance. The Trump administration has finalized its repeal of the ACA’s nondiscrimination rule (implementing Section 1557 of the ACA), which prohibits gender identity discrimination in health care and some forms of anti-LGB discrimination that take the form of sex stereotyping. Nondiscrimination protections are needed now to ensure that SGM people can access life-saving care during this global pandemic.

It is also important to ensure that the health care workforce is trained to provide culturally responsive and affirming care for SGM patients. This includes staff testing people for SARS-CoV-2, providing care to patients with COVID-19, and conducting contact tracing to notify people who may have come into contact with the individual who tested positive for SARS-CoV-2. It is important that these staff be trained in using the correct names and pronouns for transgender and gender-diverse people; this information may differ from that listed on their official identity documents. Staff should also be respectful and nonjudgmental when conducting contact tracing for same-sex sexual partners.

SGM people who fall ill with COVID-19 should have access to testing and needed care. Because of discrimination, however, many SGM people do not have access to routine, preventive health care and may face increased barriers to accessing a SARS-CoV-2 test. The only way to be certain about the disparities in risks and outcomes facing the SGM community in this pandemic is to mandate the collection and reporting of voluntary SOGI data in all aspects of testing and health care, in compliance with existing health care privacy laws.