LGBTQ California lawmakers were able to secure $2.2 million during this year's budget negotiations for improving data collection on the health of LGBTQ Golden State residents. The gathering of the information was required under a law enacted last year and included a deadline of July 1, 2026, for state agencies to meet.
In particular, the funds will allow for the California Department of Public Health, and its Center for Infectious Diseases and Center for Health Statistics and Informatics, to better track the health needs of transgender, gender-nonconforming, and intersex (TGI) Californians. Under Assembly Bill 1163 by Assemblymember Luz Rivas (D-Arleta), which Governor Gavin Newsom signed into law in 2023, various state agencies and departments must revise their public-use forms so they are more inclusive of various gender identities.
The agencies also must collect data pertaining to the specific needs of such TGI individuals, such as their medical care and mental health disparities, as well as the population size of the various communities.
State health officials specifically requested $430,000 in the state's 2024-25 fiscal year budget and $280,000 in fiscal year 2025-26 in order to update the department's systems and bring it into compliance with AB 1163. As the state agency explained in its budget request for the funds, CDPH needs to modify its infectious disease data systems to include the intersexuality category information required under AB 1163.
"This would entail configuring these systems to enable collection of these data, and updating all of the corresponding data exports for these data to be available for analysis," it explained in the five-page document. "CDPH would also need health statistic system updates to meet the changes that AB 1163 require, including adding a question to collect intersexuality data to the list of voluntary self-identified questions in the Electronic Birth Registration System and Fetal Death Registration Module."
The money requested by CDPH had been withheld, however, in the budget Newsom unveiled in January but was then proposed in the revised budget released in May. The Legislature approved the funds as budgeted in the final budget agreement state legislators sent the governor this summer.
While there's no budget item or provisional language specifically calling out the approved funds, the money is referenced in the Legislature's version of the budget, noted the office of gay state Senator Scott Wiener (D-San Francisco).
"Data collection is a high priority for the caucus," said Wiener, who chaired the Senate Budget Committee this year and has been a leading proponent of improved LGBTQ data collection.
The funding is the latest effort by Golden State lawmakers to improve the collection of sexual orientation and gender identity (SOGI) data by various state agencies. As the B.A.R. has previously reported, the gathering of SOGI information has run into myriad problems at the local, state, and federal levels.
The state's auditor last year had called out the state health department for its failures in collecting LGBTQ health data, which it was required to have begun in 2016 under an earlier bill enacted by state lawmakers. CDPH has been working to address the issues cited in the auditor's report, as it noted in the spring in its one-year response to the audit findings.
A bill making its way through the Legislature this session, authored by Wiener, would require CDPH to enact all of the recommendations included in the auditor's report. Senate Bill 957 passed out of the Senate and is before the Assembly, which will take it up after it returns from its summer recess on Monday, August 5.
"We met with the entire leadership of CDPH because of our frustrations, so it is a high priority," Wiener said of seeing the state agency address the deficiencies in its LGBTQ data collection.
As CDPH laid out in its budget request, it plans to allocate $180,000 this fiscal year, which began July 1, and next fiscal year to modify the California Reportable Disease Information Exchange, known as CalREDIE, for the collection of the SOGI data elements for all reportable diseases, and update the data exports to provide the data for analysis. To do so, it needs to update approximately 60 paper forms.
CDPH will also allocate $200,000 this fiscal year to incur design, development, and testing costs associated with adding the collection of the intersexuality demographic to the California Immunization Registry, known as the CAIR system. It also plans to spend $100,000 next fiscal year for similar updates to two other relevant data systems.
Another $50,000 will be used by the Center for Health Statistics and Informatics to hire a programmer on a three-month contract this year to update the state health department's Electronic Birth Registration System (EBRS) and its Vital Records Business Intelligence System (VRBIS) to meet the requirements of AB 1163. The work includes adding a question to collect intersexuality data to the list of voluntary self-identified questions in the EBRS and Fetal Death Registration Module (FDRM).
"This proposal aligns with CDPH's mission to advance the health and well-being of California's diverse people and communities. Collecting and reporting data on intersexuality will allow the State's health programs to better identify disparities and measure the effectiveness of programs to address them more accurately," explained CDPH officials in their budget request.
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