As COVID vaccinations ramp up with a third vaccine authorized for use, community leaders and health officials across California are pushing to see that LGBTQ individuals sign up to get inoculated. Yet there will be no way to know just how many LGBTQ people get a shot.
The state's public health department is not tracking vaccinations among LGBTQ Californians, the Bay Area Reporter has learned. The lack of gathering sexual orientation and gender identity data related to the vaccines comes as California health officials remain blind to just how widespread COVID-19 has been within the Golden State's LGBTQ population.
"We just confirmed the state is collecting no SOGI data on vaccines," gay state Senator Scott Wiener (D-San Francisco) told the B.A.R. March 2. "I think this points to a broader issue, and I want to be really frank that we don't see health care providers and counties and the state constantly quibbling and making excuses around race and age and gender data. They just collect it. They often don't need a law telling them to collect it."
The California Department of Public Health told the B.A.R. it is committed to collecting the SOGI data and working with its county counterparts to see that such information is gathered.
"CDPH is working with local health departments to understand obstacles to collecting these data and improve the completeness of sexual orientation and gender identity data reported to CDPH. CDPH has provided training on collection of complete demographic information, including information on sexual orientation and gender identity," stated the agency.
A year into the pandemic, despite regulatory and legislative efforts to track COVID testing and infections among LGBTQ Californians, no such information has been published or is forthcoming from state health officials. And at the county level, there continues to be problems with gathering accurate SOGI COVID data.
"We don't have a way of measuring it. It does feel like we are blind in some respects," said Terra Russell-Slavin, the LA LGBT Center's director of policy and community building.
Since last spring Wiener has been haranguing state health officials about the lack of SOGI COVID data. Fed up after months of inaction on collecting the health information, Wiener introduced legislation to require state and local health officials begin doing so.
Last summer Dr. Mark Ghaly, the secretary of the California Health and Human Services Agency, instituted regulations that were expected to result in everyone getting tested for COVID-19 to be asked the SOGI questions. Governor Gavin Newsom then in September signed Wiener's Senate Bill 932 requiring the SOGI data to immediately be collected.
But as the B.A.R. first reported in November, state and most local health officials had not fully implemented the law or the regulations. California is still not reporting how many LGBTQ people have contracted COVID-19 or died from the virus.
'Glitches'
During a news conference Tuesday to promote its education campaign regarding the COVID vaccines, Equality California Executive Director Rick Chavez Zbur was asked about the ongoing delay in getting accurate SOGI data regarding the pandemic and when such information would be released.
"We are opportunistic that it will be soon," said Zbur. "I know there have been glitches in the reporting systems between counties and the California Department of Public Health. We know this is a priority for [CDPH], but we don't have a specific date yet."
Zbur said that most of the state's 58 counties are now collecting SOGI data when people get tested for COVID.
"We are hopeful that data will be publicly available very soon," he said.
A few studies and polling have given some insight into how the pandemic has impacted the LGBTQ community. Using data from an Axios-Ipsos poll conducted in the fall, LGBTQ think tank the Williams Institute at the UCLA School of Law found among those tested for COVID-19, an estimated 15% of LGBT people of color had tested positive, compared to 7% of non-LGBT white people.
Kerith J. Conron, the institute's research director, said Tuesday that SOGI questions need to be asked "in all health tracking systems and death records" so there is "a better sense of how the LGBTQ community is impacted by the next pandemic."
Problem with national guidelines
One issue state health officials only brought up to Wiener in December was a problem with the national guidelines for how medical settings, whether doctors' offices, clinics, or labs, are supposed to collect and share health information. Known as Health Level Seven International (HL7) standards, they do not include how to ask about SOGI data.
That omission has been blamed for hampering efforts in California and other states to collect health information about LGBTQ people in order to better address what is ailing them.
As the B.A.R. reported in January, the Public Health Work Group that oversees the HL7 standards pledged it would address the issue after Wiener and Ghaly publicly called on it to do so. More than a month later the group has yet to provide an update, and the B.A.R.'s requests to interview Health Level Seven International CEO Dr. Charles Jaffe have yet to be granted.
"We have not gotten any definitive answer from them," Wiener said this week.
Counties face issues in gathering SOGI data
While San Francisco had been asking about the gender identity of people getting tested for COVID-19, it only updated the appointment app it was using to ask about sexual orientation in early December. As its webpage with the city's COVID data notes, sexual orientation information is missing "for a large proportion of cases and deaths."
Yet it estimates that "less than 10% of cases are among lesbian, gay, bisexual, queer and other sexual minorities in San Francisco" and that "among deaths where sexual orientation is known, most are heterosexual residents."
According to the data, 476 gay or lesbian people have contracted COVID-19, as have 264 bisexuals. Just one gay or lesbian person has died. There have been 32 COVID-19 cases in trans females and 11 in trans males and no deaths.
A note on the webpage explains the relatively few cases among people who are transgender, nonbinary or gender-nonconforming may be due to the small size of the population. However, the "size of these populations is difficult to estimate because residents may choose not to identify with their gender identity in a medical setting because of the risk of stigma or discrimination," noted the site.
Clair Farley, a transgender woman who is the executive director of the city's Office of Transgender Initiatives, told the B.A.R. that local city and public health officials have been updating the SOGI data collection across all city-led and -funded COVID testing sites.
"Today, if you go to a city testing site or register online you will be asked your gender identity and sexual orientation," Farley noted in an emailed reply. "Although, we still need the state and federal government to issue clear guidance since non-city sites and labs are not consistently collecting this critical data that will allow us to better understand the barriers and impact of the pandemic on our communities."
LA County
In Los Angeles County, where LGBTQ leaders announced with much fanfare last summer that SOGI COVID data would be collected, nine months later the county health department says it does not have accurate information to share about how many LGBTQ county residents have tested for and contracted COVID-19.
"LA County is currently collecting SOGI data through COVID testing and contact tracing interviews. However there are gaps in data collection and we don't want to report out partial data because it would be misleading," explained Sienna Spencer-Markles, a public relations manager for the Los Angeles County Department of Public Health, in an emailed reply to the B.A.R.
Confusion continues to surround just what county and city health departments and providers are supposed to be collecting in terms of the SOGI COVID data. Los Angeles County officials have told the B.A.R. the legislation signed into law by Newsom last fall did not mandate that the COVID data be collected.
Rather, they contend it directed counties to share whatever SOGI COVID data they are collecting with the California Department of Public Health. Earlier this year, as the problems in trying to collect the SOGI COVID data became apparent, the Los Angeles County Board of Supervisors asked that the health department report back to it by April how it plans to better streamline SOGI data collection and reporting.
"I think the expectation of how simple it would be, as Senator Wiener found out, is not, it was not really accurate," Supervisor Sheila Kuehl, a lesbian and former state lawmaker, told the B.A.R. in a recent phone interview. "We can say we want this data to be collected and we want it to be routinely collected in every manner so we can appropriately target services and resources. So we started collecting it in our COVID testing data and in contact tracing interviews, but we feel there are actually gaps in even that data collection."
The newness of people being asked the SOGI questions has led to some not providing the information, noted Kuehl, who told the B.A.R. she was not asked to provide her SOGI data when she got tested for COVID.
"It wasn't that easy because people often identify by race, that is not so hard. I think there are still a few issues on people's minds about sexual orientation or gender identity," she said, adding that, "Frankly, we don't have any authority to mandate people to provide that data."
The state health department told the B.A.R. it has provided personnel to augment local resources for interviews with COVID-19 patients during which the SOGI questions are to be asked.
"In order to collect information on sexual orientation and gender identity, public health staff need to interview persons with COVID-19. However, not all persons with COVID-19 can be reached for interview. Further, not all persons respond to all the questions asked in an interview," noted the state agency.
Under his bill, Wiener told the B.A.R. that SOGI data is supposed to be collected by health care providers just as they ask about race and gender. If they are not, he asked that people report them to the state health department.
"If there are bad actors or health providers that are refusing to do this, we need to know so CDPH can go after them," said Wiener.
He sounded exasperated about the yearslong delay in resolving the issues around collecting SOGI data. Various state agencies were to have begun collecting the LGBTQ demographic information in the late 2010s, but it wasn't until the COVID pandemic hit that the problems in gathering the data were brought into stark relief. This month Wiener will be officially requesting an audit of the state efforts to collect SOGI data.
"We are in this perpetual game of cat and mouse with health care providers, state and county officials constantly making excuses or quibbling with the language of statutes to make excuses for not to collect this data. That speaks volumes about why our community is so invisible in health care systems and why there is such stigma."
It is time that health care providers stop with the excuses and update their databases to collect SOGI data, said Wiener.
"It is just not OK," he said. "They are collecting all the other demographic data and they aren't being micromanaged. Why are they not collecting it here? It just speaks volumes about the health inequities facing our community."
When asked who was at fault for the SOGI data problems, Zbur said this week no one individual entity or person is to blame.
"I think it is a combination of a lot of different people. Some of it is the historic ways we collect data and the fact that the data has been collected under different data collection systems and computer systems," he said. "It seems like it is a simple answer. I approached this originally months ago with a point of view, 'Let's just sort of get this done.' It is still my point of view frankly."
EQCA has created an online help center about COVID-19 and a help line people can call at 323-448-0126.
Various San Francisco city agencies and groups are co-hosting a virtual town hall at 4 p.m. Tuesday, March 9, for the LGBTQ community to learn about the COVID vaccinations. The health department's Dr. Susan Philip will be providing an overview and there will be a Q&A session regarding the status of COVID-19 and the roll out of the vaccine.
To register and submit questions prior to the panel click here.
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