I Hear From Time To Time…

About the lack of research for the LGBTQ community,

Despite advances, problems persist in collecting LGBTQ health data
Bay Area Reporter
By Matthew S. Bajko
March 10, 2022<


As the COVID-19 pandemic enters into its third year, there is still no accurate, comprehensive data on how the health crisis has impacted LGBTQ Americans. Even in California, where state health officials have taken steps to address the issue, no report is forthcoming on how many of the state's LGBTQ residents have contracted the virus, died from it, or been fully inoculated against it.

The ongoing omissions in sexual orientation and gender identity data, or SOGI for short, not only shrouds how widespread COVID infections and deaths have been within the LGBTQ community but myriad maladies and illnesses that research indicates are disproportionally borne by LGBTQ individuals. The continued lack of data frustrates LGBTQ advocates who have been beseeching federal and state health officials for years to remedy the problem.

"We have been asking this for two years now," said Sean Cahill, Ph.D., a gay man who is director of health policy research at Boston's Fenway Institute, of the SOGI COVID data in particular.

Back around ten years ago I was on a committee to not only to include questions about the LGBTQ community and other minorities. The committee was the idea of an international well known research company, they asked non-profits to help them to get minorities included in the research studies. They brought together non-profit Black, Latinx, and the LGBTQ community organizations with researchers from the major colleges in Connecticut to discuss including minorities.

In a recent interview with the Bay Area Reporter, Cahill said despite repeated calls for officials at the Centers for Disease Control and Prevention to specifically focus on the SOGI data for COVID, any "concrete steps" do not appear to have been taken.

"Maybe they are in the works, but I don't know that. I'm hopeful that is the case, but we are just really waiting to see," he said.

We ran head on into a brick wall.

Basically what we heard from all these professors with grants from the CDC, HHS, NIH, and other government agencies was… “Nobody is going to tell us how to do our research!” Period.

It wasn’t like we were asking for a lot, just one question; Are you a member of the LGBTQ community?”

Just that one question would have added so much data to our knowledge base.

The CDC, however, did not respond to the B.A.R.'s inquiry on if it's working on changes to the COVID-19 case reporting so it includes SOGI data on those three areas. Nor did it say if the federal agency will be releasing guidance to state and local health officials that encourages SOGI data be collected on COVID testing, vaccination and case reporting.

Some of the researchers were definitely homophobic and transphobic, they said if they ask those questions about LGBTQ community that straight people wouldn’t do the survey because they would be disgusted in those questions.

Others said that it would complicate their research too much.

Others were on an ego trip.

While others we will never know because they left the room.

"The administration must collect additional data, provide analysis, and release to the public findings on HIV-related disparities in stigma, discrimination, new infections, knowledge of status, and more among marginalized segments of our society," Lambda Legal's report states.

What is now needed, said Cahill, is for the Biden administration to put the various SOGI recommendations into effect.

What is needed is that the alphabet soup of government agencies to mandate that we are including in any government research projects.

They noted that a 2020 report from the National Academies had called on the federal government to develop SOGI data collection standards to be used by federal agencies. The lack of uniform methods to ask about SOGI and how to report the data presents problems in utilizing the data that is collected.

"A lack of consistency in data collection measures introduces concerns about data comparability, complicates data analysis and reporting, and hinders efforts to advance research and develop effective programs and policies focused on improving the well-being of LGBTQI+ people," the authors of the new report noted.

When we were doing our research grant to study the trans community and HIV we used the standard questions that are usually asked and we changed the demographic questions to include trans questions. But we had only limited funds so it was just a pilot study.

"We know that for serious policy makers, data can drive decisions," stated Heng-Lehtinen. "But too often LGBTQI people, especially transgender and nonbinary people, aren't visible in data, and we get left out of electoral power, policy and federal programing investments. Very few surveys and forms include questions that allow LGBTQI people to identify as such. While some of the questions regarding gender identity aren't perfect, these recommendations and best practices, when implemented, will help to ensure that not only are we seen, but also that we have access to vital safety net programs and basic human rights."

The report is further proof, noted Heng-Lehtinen, that SOGI data collection "is vital." It also confirms that such questions can be asked, he added, and people will answer them.

I don’t know how many times I heard from state legislators asking how large is the trans community in Connecticut and all we could do was shrug our shoulders. It wasn’t until the William’s Institute came out with their data and the NCTE and the National LGBTQ Task Force came out with the first trans survey that we had 2008, with a nationwide study of the transgender community which was published in January 2011 that we could answer the legislators questions.

The Connecticut legislature in 2019 gave funds to conduct a needs assessment of the LGBTQ community (You can read it here.) but we shouldn’t have needed a special survey if other surveys included questions about us.