Amid the coronavirus crisis, state health officials responsible for gathering data on COVID-19 are declining to collect and report whether or not patients identify as LGBTQ — a practice that angers LGBTQ advocates who say those answers could yield important information to combat the disease.

The lack of data, advocates say, will essentially blind the public to the coronavirus’ impact on LGBTQ people — a population that may be particularly vulnerable to COVID-19 — as the epidemic continues to rise and health officials warn the death toll in the United States will hit its peak in the coming weeks. 

An estimated 100,000 to 240,000 Americans may die as a result of the coronavirus epidemic, U.S. government health advisers said this week.

The deputy director of the National LGBT Cancer Network, who goes by the name Scout and has a Ph.D. in sociomedical sciences from Columbia University, said the lack of data on the coronavirus’ impact on LGBTQ people reflects the absence of LGBTQ data collection in medical surveys writ large.

“The common phenomenon of not collecting LGBTQ health surveillance data hurts us in so many ways. Now it will hurt us by masking the impact of COVID-19 on our communities,” Scout said. “Considering an estimated 3.3 million of us use tobacco products, and therefore have a higher risk of negative outcomes if we get coronavirus, not collecting LGBTQ+ status in health surveillance data is horrible. We will mourn our losses but never be able to measure them.”

The Blade reached out to several states where the confirmed cases of coronavirus infection are at their highest and as of this week surpassed 5,000 cases, according to data from the Centers for Disease Control & Prevention. Additionally, the Blade sought LGBTQ demographic information on the COVID-19 impact from jurisdictions local to the D.C. region and states that have had greater incident rates of COVID-19 cases.

The only jurisdiction to report having collected data on whether COVID-19 patients identify as LGBTQ was D.C,, where the department of health affirmed Tuesday to the Blade that process was underway.

“DC Health is collecting information about LGBTQ+ status of coronavirus patients,” said Alison Reeves, a D.C. Department of Health spokesperson. “However, that data is incomplete and will not be made public at this time.”

Harper Jean Tobin, director of policy for the National Center for Transgender Equality, said any reporting on COVID-19’s impact on LGBTQ people would likely be an undercount “due to the fast spread of the virus and the extraordinary shortcomings in the United States’ response to the pandemic.”

“Unfortunately, many of our pre-existing public health surveillance systems did not yet incorporate basic demographic data about LGBTQ people, and many health care institutions haven’t yet implemented this data collection in their patient record systems either,” Tobin said. “That’s inexcusable, but it’s also not likely we’ll be able to correct those deficiencies in the middle of a fast-moving global pandemic.”

Jurisdictions other than D.C. either didn’t respond to the Blade’s request to comment, or affirmed they didn’t collect data on whether coronavirus patients identify as LGBTQ.

In Michigan, where Detroit has become a new epicenter for the coronavirus epidemic, a spokesperson for the state department of health confirmed LGBTQ status of patients isn’t asked by health officials.

“That’s not something captured in the Michigan Disease Surveillance System where cases are reported, so we wouldn’t be able to determine that information,” said Lynn Sutfin, a spokesperson for Michigan Department of Health and Human Services.

The Michigan Department of Health and Human Services didn’t respond to a follow-up email inquiry on why LGBTQ status isn’t collected in the state medical data system.

In New York, a spokesperson said the NY Department of Health is “not tracking COVID-19 cases by sexuality,” then when asked why that was the case referred the Blade to recent remarks from Gov. Andrew Cuomo on COVID-19.

“This virus does not discriminate,” Cuomo said. “It doesn’t discriminate by age. It doesn’t discriminate by party. It affects all Americans, and what you’re seeing in New York is going to spread across this country.”

Privacy issues around asking COVID-19 patients whether they identify as LGBTQ were cited by one state contacted by the Blade about LGBTQ demographics on the epidemic.

In Washington State — where the coronavirus spread early on the during the epidemic, but has since stabilized compared to other states — the state department of health affirmed it doesn’t collect data on whether coronavirus patients identify as LGBTQ.

Danielle Koenig, a Washington State Department of Health spokesperson, said, “We don’t have sexual orientation information on patients.” When asked why that was the case, Koenig replied, “We don’t publish more specific demographic data to protect patient privacy.”

Tobin sought to assuage concerns about privacy issues on collecting LGBTQ information in health surveys by saying state officials could keep it confidential and that information could be used to augment health care.

“Providers and our leaders need to make sure that everyone who needs help is getting it, and discrimination won’t be tolerated,” Tobin said. “Though it may take much longer than it should, we need to ensure going forward that LGBTQ-inclusive demographic data is included in all our health surveillance and electronic health record systems, that this information is voluntary and confidential, and that it’s used to improve access and quality of care.”

The departments of health for New Jersey, Maryland and Virginia didn’t respond to the Blade’s request to comment, and the California Department of Health referred the Blade to a page on its website showing the information state officials record for COVID-19. (It doesn’t include whether patients identify as LGBTQ.)

Emphasizing changing forms to include LGBTQ questions amid a pandemic may not be realistic, Tobin cited several examples for why they would have been useful, including finding out whether LGBTQ people have particular health vulnerabilities and the right way to tailor public health messages.

“The health care system runs on data,” Tobin said. “Collecting information in patient records helps promote honest communication between patients and staff to make sure their health needs and concerns are addressed. It helps us determine whether certain populations are seeking or receiving specific services at different rates, or having different outcomes.”

The lack of data collection on whether coronavirus patients identify as LGBTQ appears to be the result of a general practice as well as the official CDC form specific for COVID-19 data collection, which doesn’t include questions seeking to identify whether a patient is LGBTQ.

The CDC form seeks to obtain information on patients who tested positive for COVID-19 based on age, sex and ethnicity, but no where does it ask their sexual orientation. 

For the query on sex, the form allows states to record the patient’s answer as “male,” “female,” “none,” or “other.” Although those options provide some flexibility to patients who are non-binary, it doesn’t explicitly seek to ascertain whether a COVID-19 patient is transgender.

The Centers for Disease Control didn’t respond to multiple requests from the Blade on whether it has information on COVID-19’s impact on LGBTQ people, nor why its data collection survey doesn’t ask patients if they identify as LGBTQ.

Tobin said she’s optimistic about seeing more LGBTQ demographic data in health surveys in the future, but recognized the current reality.

“For now, we know that the virus doesn’t care about gender, but that having physical vulnerabilities, a high-risk job, no paid leave, smoking, lacking safe housing, or living in an institutional setting (such as a shelter, jail, or nursing home) all put you at greater risk,” Tobin said. “Trans people, on average, are more likely to experience each one of these risk factors.”

States and the CDC aren’t collecting data on whether COVID-19 patients identify as LGBTQ despite a recent joint letter declaring LGBTQ people would be vulnerable to the epidemic.

More than 150 advocates warned LGBTQ people would be disproportionately affected by the coronavirus because they smoke and suffer from cancer at higher rates; have high reported rates of discrimination in the health care system; and are disproportionately affected by HIV/AIDS. 

(However, Dr. Susan Henn, chief medical officer for the D.C.-based Whitman-Walker Health, has told the Blade for people with well-managed HIV, the increased risk would only be “very slight.”)

The letter takes note ensuring “surveillance efforts capture sexual orientation and gender identity as part of routine demographics” would be a crucial goal to achieve in serving LGBTQ people during the COVID-19 epidemic.

Dr. Scott Nass, president of GLMA: Health Professionals Advancing LGBTQ Equality and a Palm Springs, Calif.-based family physician, said LGBTQ advocates will continue to beat the drum for LGBTQ inclusion in health surveys despite states declining to do that during the coronavirus crisis.

“GLMA has long advocated for data collection inclusive of sexual orientation and gender identity as central to ensuring the health and well-being of LGBTQ people,” Nass said. “Given the potential risk factors for LGBTQ individuals, inclusive data collection at federal and state levels may reveal important and life-saving data about the coronavirus and LGBTQ people and that’s exactly why GLMA, the National LGBTQ Cancer Network and more than 150 organizations called for data inclusion in our open letter on COVID-19 and LGBTQ communities.”

Data collection for LGBTQ people in health surveys, however, does exist in a limited fashion as a result of a move announced by the Obama administration in 2011. 

The Department of Health & Human Services added a question on sexual orientation to the National Health Interview Survey, the principal source of information on the health of the U.S. population. Although the administration was sluggish to add questions on transgender status, the Obama administration eventually allowed states to ask both sexual orientation and gender identity questions on the Behavioral Risk Factor Surveillance System, or BRFSS, if they so choose.

Scout said allowing states to include the LGBTQ questions on health surveys “has actually proven unexpectedly strong as political winds shifted” and now around 35 states made the inquiry on BRFSS, but “that’s still not full U.S. data.”

“Collecting SOGI data on electronic health records is rare as hens teeth,” Scout said. “This leaves us with all of our health issues masked for anything that is reliant on real time or end stage disease reporting (save HIV which has a separate system). Thus, in a time like today, we will only be able to measure which LGBTQ people had COVID years after the fact through self-report of people who have survived and happen to live in a state that collects SOGI on their BRFSS, and then only if BRFSS coordinators decide to add a COVID question.”