When the COVID-19 pandemic hit, I told my team to pause everything we were working on to focus on providing whatever direct services we could to our community. We set up town halls, helped organize food drives, and worked with thousands of our constituents one-on-one in multiple languages to connect them with unemployment benefits, health care, food benefits, and anything else we could.
That's what public servants are supposed to do — no matter someone's age, income, or background, we figure out what they need and get it to them. But I quickly realized that there was one group about whose experience in the pandemic we were completely in the dark: LGBTQ people. My community.
Despite a 2015 law authored by then-Assemblymember David Chiu (D-San Francisco) and a 2020 law that I authored, the California Department of Public Health does not systematically collect data on people's sexual orientation and gender identity, also known as SOGI data. And the problem isn't that people don't want to report that information — the department literally doesn't even ask the question in the overwhelming majority of situations.
The problem isn't confined to California — federal health agencies don't systematically collect SOGI data either. So even though we were hearing anecdotal reports that LGBTQ people were being disproportionately impacted by COVID, we had no way to know for sure. That's unacceptable because without that data, we're helpless to tackle these disparities with an approach targeted to our community's specific needs. Just as the state Department of Public Health collects demographic information about gender and race in order to better target resources where they are most needed, it should already be collecting SOGI data.
Our experience with COVID led me to ask the question of how the state collects health data about LGBTQ people. I asked the California state auditor to take a deep look at what SOGI data the health department collects and what it doesn't collect. The resulting audit is absolutely startling: The department is failing its duty to collect SOGI data the way it collects other demographic data like gender and race, and, as a result, the state lacks a clear picture of how to address our community's unique needs.
Eight years after Governor Jerry Brown signed the LGBT Disparities Reduction Act and three years after Governor Gavin Newsom signed an LGBTQ health data law I authored, the state Department of Public Health asks patients for sexual orientation and gender identity on only 17 of the 124 forms it uses to gather demographic data. Of the 129 forms reviewed by the auditor, 105 were exempt from requirements to collect SOGI data, mostly because those forms are administered to patients by third parties. Because of the technical limitations of its current software, the department is not even able to export SOGI data to be shared or analyzed for over 100 of the 128 reportable disease conditions in their system. In other words, the department has not implemented a system that globally asks these questions in order to gather health data about our community.
These failures are disturbing for what they may conceal about the health of LGBTQ people. What we do know about LGBTQ health disparities is alarming — recent studies have found that, compared with our cisgender and heterosexual counterparts, LGBTQ people experience worse cardiovascular health, higher reported incidence of cancer, and a high prevalence of conditions associated with severe COVID-19. We are also in the midst of a mental health crisis among LGBTQ youth, with 44% of LGBTQ youth in California contemplating suicide in 2022 amid an atmosphere of rising anti-LGBTQ hate across the country.
Because our health care system is failing so badly on SOGI data collection, we're in the dark about why these disparities exist. Some survey data finds that LGBTQ people are more likely to report inadequate insurance as a barrier to accessing health care, and in some cases health care providers may not be providing culturally competent care. For some conditions, experiences of marginalization may also be driving worse health outcomes.
We cannot achieve health equity while SOGI data continues to go unreported, but the experiences of other government agencies show that there's a lot we can accomplish once we have it. After the San Francisco Department of Homelessness and Supportive Housing began collecting substantial SOGI data, it launched a series of LGBTQ-targeted initiatives that led to a 33% increase, from the previous year, in LGBTQ households accessing permanent housing solutions. The same results are possible in the health care arena — but only once we put systems in place to collect the data.
There is a clear set of steps the California Department of Public Health must take to correct its oversight and begin collecting SOGI data. It must make a comprehensive plan, under centralized authority, to add SOGI questions to all forms that collect demographic information — especially those administered by third parties. It must develop guidance and adequately train its staff and third parties acting on its behalf in how to collect this data, and follow up to ensure compliance. It must also overhaul its software system known as CalREDIE to allow public health programs to analyze SOGI data.
California Department of Public Health Director Dr. Tomás Aragón has said that the department plans to finally get it together and collect SOGI data on all of its forms by April 2024, with progress reports to the public in 60 days and again in six months. I'm heartened to see this concrete commitment from Aragón, and I'll be monitoring closely to ensure this happens.
Though it is too late in the legislative cycle for the Legislature to address the issue this year, I, along with gay Assemblymember Rick Zbur (D-West Hollywood), will introduce legislation to address these issues next year if the department falls short on its commitment.
By moving to address this longstanding oversight, California can continue to serve as a model to other states and to the federal government of how best to champion the LGBTQ community. My hope is that SOGI data collection, like same-sex marriage, soon moves from being a California idiosyncrasy to an accepted practice nationwide.
State Senator Scott Wiener (D) is a gay man who represents San Francisco.
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