Two gay California lawmakers have told the Bay Area Reporter they plan to introduce legislation to address the issues impeding efforts to collect LGBTQ health data as detailed in a damning report by the state's auditor. Meanwhile, the state's health department is also working on a roadmap to address the findings of the audit.
Freshman gay Assemblymember Rick Chavez Zbur (D-West Hollywood) plans to work collaboratively with gay state Senator Scott Wiener (D-San Francisco) on a comprehensive bill aimed at fixing the myriad problems hampering the collection of sexual orientation and gender identity, or SOGI, data by the California Department of Public Health. Rather than gut and amend a bill that was already introduced this session, as the deadline for new legislation has already passed, both legislators said they preferred filing a new bill at the start of the 2024 legislative session.
Having lambasted the state health agency for its lackluster SOGI data collection during the COVID pandemic when he lead statewide LGBTQ advocacy organization Equality California, Zbur told the B.A.R. he wasn't surprised by the findings California State Auditor Grant Parks detailed in his 45-page report titled "The California Department of Public Health: It Has Not Collected and Reported Sexual Orientation and Gender Identity Data as State Law Intended."
"I think that we've known for a while now that the department of public health and other departments in California government have not sufficiently prioritized the needs of the LGBTQ-plus community," said Zbur. "The report just made clear what we already knew."
Wiener expressed disappointment that more legislation is even needed to get CADPH where it needs to be in terms of SOGI data collection. In addition to working on a new bill, Wiener told the B.A.R. he also believes a hearing or some public airing on the issue is needed.
"Even before a bill is passed, my hope is this audit lights a fire in the department and the administration to get this done," said Wiener.
As the B.A.R. first reported online April 27, Parks disclosed in his audit that 105 out of 129 forms used by CADPH are exempted from collecting SOGI data because a third party, such as a local health jurisdiction or private health care provider, oversees them. And only 17 of the 24 forms that are required to collect SOGI data "do so in a complete manner," Parks noted.
There is little SOGI data made available to the public, the audit found. It also highlighted the fact that "resource and technical limitations" make it impossible for CADPH to export the SOGI data it collects for over 100 of 128 reportable disease conditions to an electronic database it oversees.
"The lack of consistent SOGI data collection procedures, and ultimately the low number of Public Health forms that currently collect SOGI data, indicate that changes to state law may be warranted to compel more consistent and useful SOGI data collection practices," wrote Parks in an April 27 letter he submitted to state leaders.
In a statement released April 27 Wiener said he was "seriously considering legislation to implement the auditor's recommendations." He reiterated that stance in an interview with the B.A.R., calling the auditor's report "pretty extraordinary."
He intends to make sure every single form and survey the state health agency is using asks the SOGI questions, Wiener told the B.A.R. He met with the audit team last week to discuss with it the findings in the report.
"This was so unequivocal and also very clear that whatever the legal requirements are, that CDPH has made a decision not to seek comprehensive data on sexual orientation and gender identity," said Wiener of the audit report, adding he was surprised to learn just how few of the health agency's forms include the SOGI questions. "There is nothing preventing them from doing that; they have decided not to include it. That is a huge problem."
In a response to Parks dated April 7 and released publicly last Thursday, state Public Health Officer Dr. Tomás J. Aragón pledged that the statewide health department would address the SOGI data issues raised in the auditor's report with updates in 60 days, six months, and a year's time.
"We believe in the importance of collecting SOGI data to identify disparities and acting to change inequities in California's health systems," wrote Aragón, who is also director of the state public health department and formerly worked for the San Francisco public health department. "Best practices related to SOGI data collection are evolving. Public Health will continue to strive to achieve and improve compliance in our data collection efforts and overall use of data to advance health equity in California."
Aragón noted that the state health agency had "substantially complied" with the original SOGI legislation Assembly Bill 959, known as The LGBT Disparities Reduction Act. He listed, for example, CADPH adding SOGI questions to its Confidential Morbidity reports and updating the California Reportable Disease Information Exchange known as CalREDIE so it could receive data from local health jurisdictions.
Nonetheless, he acknowledged that the auditor's report highlighted other issues that need to be addressed "that go beyond the requirements" of AB 959, which had been authored by San Francisco City Attorney David Chiu when he served in the state Assembly.
"We acknowledge and appreciate the insights shared in the audit report. Public Health will both work to improve our own efforts, as well as support local health jurisdictions and health care providers to collect this data," he wrote.
The state health agency has yet to make Aragón available for an interview with the B.A.R. It has had a SOGI working group comprised of subject matter experts from various departments within it tasked with addressing the myriad issues that are hindering the collection of the LGBTQ health data.
Formed prior to the audit, the working group has tackled such concerns as how to best ask the SOGI questions and what terms to include for how people define their sexual orientation and gender identity. It has also discussed how to aggregate the data collected and if it should be broken down under each segment of the LGBTQ acronym.
The working group has also been examining how to add the SOGI questions to the current systems it uses for gathering and storing data. How to protect people's information and adhere to privacy laws covering personal health data has also been part of its purview.
Within 60 days it intends to present a roadmap for how the state health department can address the findings of the SOGI data audit. By next April the department is working to see that all 129 of its forms ask the SOGI questions, with the updates rolled out over the coming months.
"Our goal is to be responsive to the auditor and ensure we are addressing the concerns of the LGBTQ+ community. We are committed to getting as many relevant forms completed in the next year as possible while also setting up a data process that ensures long-term success," said Dana Moore, deputy director of the state agency's Center for Health Statistics and Informatics.
Moore, who is bisexual and has several young children with her wife, has been part of the agency's SOGI working group. One change it is implementing is rather than have each program and section within the state health department be responsible for updating its SOGI data collection, the center where Moore works will be taking a lead role on it going forward and facilitating the implementation of it department-wide.
In a video interview with the B.A.R. this week, she stressed that the department is committed to making sure legislators, policymakers, community advocates, and health leaders have the information needed to address the health concerns of LGBTQ individuals.
"Equity is our No. 1 priority for the department, and a key part of that is serving our LGBTQ+ communities and making sure we have the data to do that," said Moore.
Zbur said he would like for Aragón to meet with the LGBTQ caucus to hear directly from him what his plan is to address the department's deficiencies in collecting SOGI data.
"I do want to work with Dr. Aragón and the leadership over there. We had a good meeting with DPH senior people so far," said Zbur. "I think this is an opportunity to demonstrate this report is an opportunity for Dr. Aragón and that senior team over there to demonstrate their commitment to the LGBTQ community that I do believe is there. They have to make it a priority in the department as well."
Added Wiener, "I am glad Dr. Aragón put a timetable in place. We need to see specific deliverables quickly. There is a lot of unhappiness around this."
Plagued by problems
As the B.A.R. has noted in numerous articles over the years, SOGI data collection remains woefully inadequate and plagued with technical problems at every level of government. Even in San Francisco, where the city's public health department has been on the forefront of LGBTQ health issues, the local agency has been criticized for its inability to collect the SOGI data of the people it treats and provides services to across its multiple health centers and programs.
San Francisco officials and state lawmakers nearly a decade ago had mandated that health officials begin collecting SOGI data. But almost immediately the efforts ran into problems, from how to word the questions asked of patients to needing to update the electronic data record systems health agencies use so the SOGI data could be entered.
Outside of LGBTQ circles, the issues impeding SOGI data collection had largely flown under the radar until the COVID pandemic hit in 2020. The global health crisis brought to the fore just how unknowledgeable health officials remain about the needs of LGBTQ people.
Despite a California law signed by former governor Jerry Brown that had mandated the state's departments of health care services, public health, social services, and aging begin gathering SOGI data in 2016, state health officials did not know how many LGBTQ residents of the Golden State were infected with the deadly coronavirus when it began ravaging the state three years ago. To this day, no such data is available.
Nor is it known how many LGBTQ people died from COVID or have gotten vaccinated for it. The lack of such data persists despite state lawmakers adopting a bill in 2020 requiring health officials to collect it.
Call for audit
Fed up with the situation, a number of LGBTQ state lawmakers in 2021 had called for an audit of the SOGI data collection efforts. Among them was Wiener, who has been a vocal critic about the lackluster LGBTQ demographic data collection in California for the last three years and authored the 2020 bill requiring SOGI data collection pertaining to communicable diseases.
But issues with gathering the LGBTQ health information remain, as again became apparent during the recent outbreak of mpox primarily among men who have sex with men and their sexual partners, noted Zbur.
"Under Governor Newsom, the public health department has improved significantly but it still needs a lot of focus," Zbur said. "They need to do a lot to make sure they are doing for the LGBTQ community what they do for everyone else in collecting the data to know that their health is being protected, that programs are reaching our communities and the data that is being collected is comprehensive."
Over the last decade there has been some improvement, Zbur acknowledged, as he has personally experienced how he is being asked SOGI questions more often in health care settings.
"We haven't met the ultimate goal, but I will say we have made progress. At least in some of the larger areas," said Zbur. "When I go in most of the time, and go to a new health care provider, the forms I sign and intake forms do include data fields requesting voluntary SOGI data. That is very different from 10 years ago."
Zbur plans to meet with the audit team. He told the B.A.R. that one problem with the past bills adopted by lawmakers was they were too narrow in scope, either due to cost concerns or in an effort to simplify a complicated issue.
"We don't have everyone who is providing health care services to the broader community collecting data on the LGBTQ-plus community. That was one of the findings of the audit and one of the things that needs to be corrected," said Zbur, adding that the members of the Legislative LGBTQ Caucus will be "very carefully" reviewing the audit report. "It will provide a blueprint for what we need to do both from an advocacy perspective and a legislative perspective in terms of protecting the LGBTQ community's health."
The caucus members had met with CADPH leadership earlier this year prior to the release of the audit, said Zbur, "and raised a number of issues with them." The experiences of the last several years pushing for the SOGI data amid two health crises impacting the LGBTQ community illustrated for Zbur how "very complex" the health care system is, he told the B.A.R.
"Part of the reason I know Senator Wiener asked for the audit is we realized how complex it is. No one was taking a step back to say how are we getting complete comprehensive data to protect our community and if all the forms are being updated," said Zbur. "In one sense, I am displeased with the fact so many forms haven't been updated. But frankly, after the years of advocacy related to COVID and monkeypox, I wasn't that surprised."
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