The Need for COVID-19 LGBTQ-Specific Data

No data, no problem. Social epidemiologist Nancy Krieger’s aphorism deftly captures the politics that surround the sizable gaps in data on COVID-19’s impact among US lesbian, gay, bisexual, transgender, and queer [LGBTQ] communities.¹

LGBTQ communities in the United States have made substantial social and legal gains. Yet many challenges remain, such as employment discrimination; political attacks on transgender youths; hate crimes, particularly against Black transwomen; religion-based discrimination²; and, in the case of COVID-19, public health data collection. Indeed, the largest global health crisis in more than a century has magnified numerous public health data gaps for LGBTQ communities.

LGBTQ activists, scholars, and national organizations, such as the National Academy of Medicine, the Williams Institute, and the Fenway Institute, have long advocated better sexual and gender minority (SGM) status data collection.^3,4 Accordingly, there has been an uptick in data collected systematically—and predominantly but not exclusively—by federal government surveys to better understand LGBTQ health concerns, needs, assets, and inequities. Despite concerns that LGBTQ stigma and discrimination would complicate data collection, evidence documents that LGBTQ data can be feasibly and efficaciously collected.⁵

LGBTQ people are not a mutually exclusive group, but rather intersect with other communities at increased and disproportionate risk for COVID-19 morbidity and mortality and adverse socioeconomic impact. Thus, government public health data collection efforts are essential to reflect the intersectional complexity of the real world. Indeed, the Gallup Organization’s private representative polling data indicate that a growing number of US adults now identify as LGBTQ, including proportionately more Latino and non-Latino Black and Asian Americans.⁶

Sell and Krims (p. 1620) and Cahill (p. 1606) highlight that the void of SGM data on the prevalence and socioeconomic impact of COVID-19 is not inconsequential. Data from the Williams Institute documents that sexual minority people of color were twice as likely as their White counterparts to test positive for COVID-19. Sell shows that compared with their cisgender heterosexual counterparts (22%), 40% of sexual minority people work in service jobs subject to COVID-19 shutdowns. Evidence of the high correlation between smoking and respiratory illnesses such as COVID-19 and the fact that sexual minorities smoke at higher rates than sexual majorities are a further cause for concern.

Alas, the federal government bears much of the responsibility for the no data, no problem conundrum. As Cahill notes, as of May 2021 no federal agency had issued guidance recommending or requiring SGM status data collection for COVID-19 testing, care, and vaccination. In the absence of federal data on COVID-19 by SGM status, nongovernmental sources seek to fill the void. Using private data on the mental health impact of COVID-19, Akré et al. (p. 1610) document that LGBT people reported worse mental health and problem drinking during the COVID-19 pandemic than their cisgender heterosexual counterparts.

Collectively, the articles in this special section make a convincing argument for the need for SGM data in general, and during a global pandemic in particular. SGM data are urgently needed to assess the scope of the pandemic among diverse LGBTQ communities and inform the development of effective and LGBTQ-specific community-tailored interventions. These would include LGBTQ-segmented messaging in general public health messages as well as more targeted LGBTQ advertising (e.g., TV shows, magazines, Web sites).

Despite the considerable strides that activists, researchers, and public health officials have made in increasing public health SGM data collection, these articles highlight that LGBTQ people also remain intersectionally invisible in much of the response to COVID-19, despite evidence of clear problems and data gaps in COVID-19–related surveillance as well as mental and substance use. Consequently, there is a dire public health need to redouble advocacy efforts to boost SGM data, through either federal or state regulation, to effectively identify, address, and intervene in the COVID-19 pandemic in diverse LGBTQ communities.