Still in the Dark Regarding the Public Health Impact of COVID-19 on Sexual and Gender Minorities

More than a year into the COVID-19 pandemic, we know little about how COVID-19 is affecting lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI) people. This is because only five states and the District of Columbia have taken steps to collect sexual orientation and gender identity (SOGI) data, including intersex data, and none has yet reported any COVID-19 prevalence data by SOGI. As of July 2021, no federal agency had issued guidance recommending or requiring SOGI data collection in COVID-19 testing, care, and vaccination. This is a major public health surveillance opportunity that more states and the federal government should address forthwith.

As recently noted in AJPH,¹ sexual and gender minority (SGM) people may be at elevated risk of infection by the novel coronavirus because of a number of factors: greater likelihood of working in frontline occupations such as retail and food services, higher rates of poverty, and concentration in urban areas. This is especially true of people of color who are SGM. SGM populations also have higher rates of relevant risk factors (e.g., smoking and vaping) and comorbidities (e.g., asthma, cardiovascular disease, diabetes, cancer) that correlate with complications from COVID-19.²

As public health officials moved toward COVID-19 vaccine distribution in late 2020, SGM rights groups and civil rights groups encouraged state health directors to include SGM populations, people of color, immigrants, and other marginalized populations in their dissemination strategies. This is necessary because there are high rates of medical mistrust in SGM communities related to previous experiences of discrimination and abuse. This is especially true among Black³ and Indigenous SGM populations, transgender people,⁴ intersex people,⁵ and older adults. Lesbian and bisexual women⁶ and transgender people⁷ are less likely to access routine, preventive health care. This could affect the likelihood that they will know how to access the COVID-19 vaccine and be willing to trust those offering it.

Public health authorities and health care providers should conduct affirmative outreach and enlist trusted community leaders to promote vaccination in Black and Indigenous communities, immigrant communities, SGM communities, and other communities in which medical mistrust is high. They should also collect SOGI data at vaccination, testing, and care to ensure that SGM populations are accessing these critical health care services equitably. More than 125 SGM health advocacy organizations sent a letter to the Association of State and Territorial Health Organizations in December 2020 asking them to do just this.⁸

DATA COLLECTION AND REPORTING

During 2020 SGM health advocates at the state and federal levels engaged in countless meetings and communications with public health officials and elected legislators, urging them to take steps to encourage or require SOGI data collection and reporting in the COVID-19 pandemic. This is an update on the results of those efforts as of May 2021. It is based on conversations with advocates, local journalists, and state and federal public health officials, including members of the Council of State and Territorial Epidemiologists.

The District of Columbia and five states—California, Oregon, Nevada, Pennsylvania, and Rhode Island—are collecting or trying to collect SOGI data in testing.

In spring 2020 Pennsylvania governor Tom Wolf announced that the state would collect SOGI data.⁹ State health secretary Rachel Levine, MD, wrote health care providers, requesting “that you collect and report SO/GI data for all COVID-19 patients” and noting that “this is a top priority of the Wolf Administration, as the collection of this data will help inform public health policy decisions, drive health care delivery, and ultimately improve population health” (https://bit.ly/3yKJ6tR). Pennsylvania’s COVID-19 Dashboard reports race/ethnicity, gender, and age data for people with COVID-19 but does not yet report SOGI data (https://bit.ly/3jQX8pB).

California passed a law in 2015 requiring the routine collection of SOGI data in health care whenever race and ethnicity data are collected. In September 2020 Governor Gavin Newsom signed SB 932, a bill sponsored by Senator Scott Wiener requiring SOGI data collection and reporting in COVID-19 testing. Those who test positive are asked their SOGI.

According to a California LGBTQI activist, there have been two major problems in implementation. First, many people who are tested at drive-through and pop-up sites are not being asked their SOGI because “the California Department of [Public] Health is saying these are not health care sites and don’t need SOGI data collection.” Second, even if SOGI data are reported to the laboratories that process the test results, the labs are not forwarding SOGI data to the California Department of Public Health. “The data dies in the lab,” the advocate said, “because the federal form doesn’t require SOGI data” (oral personal communication, January 15, 2021).

This form, the Centers for Disease Control and Prevention’s (CDC’s) case report form, does not ask for SOGI information, and its sex options are “male, female, other, unknown.” The labs told Senator Wiener and Mark Ghaly, California Secretary of Health and Human Services, that the problem was that Health Level Seven International (HL7), an international standards body, does not have SOGI standards. In response, Wiener and Ghaly wrote to the HL7 Public Health Working Group, asking that it immediately “modify its standards to include SOGI data in such a way that ensures interoperability between California’s laboratories and the state’s electronic disease reporting and surveillance system” and stating that “HL7’s current lack of SOGI data standards is impeding California’s efforts to measure, with the goal of ultimately ensuring, health equity for the state’s LGBTQ and gender-nonconforming residents.”¹⁰ Although HL7 tends to move slowly, its chief executive officer Charles Jaffe quickly wrote back to the California leaders, offering “to provide guidance and identify key questions on the technical specifications needed to report this data from labs to state electronic disease reporting and surveillance systems.” Jaffe said that HL7 “is committed to helping all states and their partners use relevant HL7 standards to improve COVID-19 reporting—for the LGBTQ community and other vulnerable populations.”¹¹

Meanwhile, California is the only state publicly reporting SOGI in COVID-19 data, although it is not prevalence data (https://covid19.ca.gov/equity). Instead, California reported that, as of May 7, 2021, it had sexual orientation data for 9.5% of the individuals who had died of COVID-19 and for 16.0% of the people who had tested positive for COVID-19. Gender identity data were more complete: the state had gender identity data for 99.0% of cases and 99.5% of deaths. (The gender identity response options are female, male, trans female/trans woman, trans male/trans man, genderqueer/gender nonbinary, not listed, and I prefer not to say.) California is trying to collect SOGI data only for individuals who test positive for COVID-19, not for each individual who gets tested.

California does not report whether SGM people are more likely to be diagnosed with COVID-19 than the majority or general population or whether SGM people are more likely to die from COVID-19.

San Francisco County and Los Angeles County in California are two of the only municipalities in the country to collect SOGI data. San Francisco collects and reports SOGI data in health and human services. A December 2020 report mentioned the COVID-19 pandemic as complicating data collection efforts but did not report COVID-19–related SOGI data.¹² Los Angeles County announced in June 2020 that it would collect SOGI data from people testing for COVID-19, but it has not yet released the data publicly.¹³ In March 2021, seven frustrated California state legislators called for an audit of the state health department’s collection of SOGI data related to the COVID-19 pandemic.¹⁴

In Oregon, SOGI data collection is starting to happen. A 2013 mandate that race/ethnicity, disability, language, and age data be collected in health care was expanded in October 2020 to include SOGI. In Nevada, contact tracers are asking patients about SOGI. Neither Oregon nor Nevada is publicly reporting SOGI data yet, nor is the District of Columbia.

In Rhode Island, case investigators call all individuals newly diagnosed with COVID-19 and ask several demographic questions, including SOGI. Individuals who test positive can also indicate their SOGI online on a case interview form. Rhode Island is analyzing data but has not reported any publicly yet.

IMPORTANCE OF INTERSECTIONAL DATA

There is preliminary polling data that SGM disparities in COVID-19 intersect with racial/ethnic disparities. A Williams Institute analysis of Axios–Ipsos survey data from fall 2020 found that LGBTQI people of color were more likely than were straight, cisgender people of color to test positive for COVID-19 and were twice as likely to test positive for COVID-19 as LGBTQI White people.¹⁵

An analysis recently published in Vaccines of online survey data found that Black and Native American gay men and other men who have sex with men (MSM) in the United States were less willing than were White MSM to get vaccinated for COVID-19, whereas Asian American MSM were more likely to get vaccinated. There was no significant difference between Latino MSM and non-Hispanic White MSM.¹⁶

NEED FOR FEDERAL GOVERNMENT LEADERSHIP

Despite repeated outreach to US Department of Health and Human Services and CDC leaders throughout 2020, including CDC’s Health Equity COVID-19 Strike Team and the COVID-19 Rapid Response Team, as of July 2021 the federal government had not issued guidance encouraging or requiring SOGI data collection in COVID-19 testing, care, or vaccination. SGM health advocates are hopeful that this will soon change, given the Biden-Harris administration’s strong support for SOGI nondiscrimination and health equity and new CDC director Rochelle Walensky’s career of providing HIV prevention and care to SGM patients. Health professional associations, such as the Council of State and Territorial Epidemiologists, should formally encourage the CDC to take this important step.

It is also imperative that the National COVID Cohort Collaborative (N3C), a project of the National Center for Advancing Translational Sciences, add SOGI to its COVID-19 Clinical Data Warehouse Data Dictionary. N3C states that collaborators can “contribute and use COVID-19 clinical data to answer critical research questions to address the pandemic” and that researchers can examine “associations between COVID-19 patient outcomes and social determinants of health” (https://ncats.nih.gov/n3c). Yet by not including SOGI, N3C does not allow for research on SGM populations’ experiences with COVID-19.

COVID-NET, a network of 100 large hospitals meant to represent the US population, should also collect and report SOGI in COVID-19 care, testing, and vaccination.

At an April 2021 meeting of the Biden-Harris administration’s COVID-19 Health Equity Task Force, Joneigh Khaldun, chair of the task force’s Data, Analytics and Research Committee, spoke of the need for SOGI data collection and reporting in the COVID-19 pandemic. Hopefully, this will become a formal recommendation of the COVID-19 Health Equity Task Force soon.

Following more than a year of inaction by the federal government and most states, it is critical that other states and the federal government follow the lead of California, Oregon, Nevada, Pennsylvania, Rhode Island, and others and take steps to collect and report SOGI data in COVID-19 testing, care, and vaccination. This is a health equity imperative.