Senator Wiener Introduces Bill To Require Collection of LGBTQ Health Data To Address Disparities

SACRAMENTO – Senator Scott Wiener (D-San Francisco) introduced Senate Bill 957, legislation to require state health agencies to collect sexual orientation and gender identity (SOGI) data alongside other demographic information in order to identify and combat health disparities. The bill enacts the full recommendations of last year’s state audit, which found that the California Department of Public Health’s (CDPH) failure to collect SOGI data impacted its ability to protect LGBTQ health. 

SB 957 builds on SB 932 (Wiener, Chapter 183, Statutes of 2020) and AB 959 (Chiu, Chapter 565, Statutes of 2015), which enacted the first requirements for the collection of SOGI data from state health agencies. Last year’s audit found that the state health department is sidestepping these requirements, and SB 957 closes the loopholes that allows evasion of the intent of laws that have been on the books for nearly a decade.

“While LGBTQ people have emerged from the shadows in many respects, in the realm of public health we’re still in the dark,” said Senator Wiener. “California is still not collecting adequate data to understand the unique health challenges faced by LGBTQ people. By forcing our department of public health to finally do so, SB 957 takes us one step closer to true health equity.”

CDPH collects a range of demographic information, such as race and ethnicity, through voluntary reporting to better understand inequities in the California health system. Because of stigma and the criminalization of LGBTQ people, the agency did not collect SOGI data for many years.

To combat that stigma and the insidious risks it poses to LGBTQ health, in 2015 then-Assemblymember David Chiu authored AB 959, which was signed into law in 2015. The law required specified state departments, including CDPH, to collect and report voluntarily provided self-identification SOGI data when collecting other demographic data, such as ethnicity, age, and race.

The COVID-19 pandemic exposed the lack of adequate LGBTQ health data. The

Human Rights Campaign (HRC) found that because LGBTQ people are more likely to work in jobs in highly affected industries, often with more exposure and/or higher economic sensitivity to the COVID-19 crisis, those in the LGBTQ community were particularly vulnerable. Yet while state and federal agencies were ultimately able to track COVID’s disparate impacts on individuals of different races and ethnicities, no data was collected on LGBTQ impacts. 

In response to this failure to understand the LGBTQ community’s experiences of the COVID-19 crisis, Senator Wiener authored SB 932, which was signed into law in 2020. The law required that electronic reporting tools used by local health officers for reporting communicable diseases include the capacity to collect and report SOGI data, and mandated that health care providers in California report SOGI data, if known, for all reportable communicable diseases.

The MPX outbreak of 2022 showed once again the danger of leaving LGBTQ health invisible to the public health system. 

In 2023, the California State Auditor conducted an audit of CDPH and its role in collecting, reporting, and using SOGI data. The audit found that CDPH has been slow to adopt and enforce standardized definitions, guidelines, and training to ensure the consistent collection and reporting of SOGI data, which has limited its ability to identify and address health disparities among LGBTQ+ people.

A key finding of the report was that CDPH collects SOGI data on only a small portion of the forms it uses to gather demographic data. Of the 129 forms CDPH uses to collect demographic data, just 17 collect complete SOGI data.

The Department is able to sidestep the requirements of SB 959 because most of the forms it uses to collect data are administered by third parties, not the Department directly. Of the 129 forms reviewed that collect demographic data, 105 were exempt from collecting SOGI data. Ninety of those forms were exempt because a third party, such as a local health jurisdiction – or health care provider – collects the data separately. The other 15 forms were exempt due to federal guidelines on demographic data collection. Of the 24 forms required to collect SOGI data, only 17 collect complete SOGI data and the remaining 7 only collect partial data. 

To ensure that CDPH collects complete SOGI data to effectively implement and deliver critical services for LGBTQ+ people, SB 957 will Implement the recommendations from the audit report by amending existing law to require CPDH to: 

• Collect SOGI data from third-party entities, including local health jurisdictions, on any forms or electronic data systems unless prohibited by federal or state law;
• Provide an annual report to the public and to the Legislature on its efforts to collect, analyze, and report SOGI data;
• Improve services or program outcomes for underserved LGBTQ+ communities; 
• Allow voluntarily provided SOGI data to be included with the immunization data

SB 957 is sponsored by Equality California and California LGBTQ Health & Human Services Network.

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