Advocates are blasting California Governor Gavin Newsom and state public health officials for not gathering data about the impact of the novel coronavirus outbreak on the Golden State's LGBT community.
LGBT advocates had requested that people with COVID-19, the illness caused by the virus, be asked about their sexual orientation and gender identity. Yet state and local officials have ignored their requests, even though laws have been passed requiring the collection of SOGI data in health care settings.
As the Bay Area Reporter has previously reported, even in San Francisco health officials are not collecting sexual orientation data of those who test positive, only information on gender identity. Last week, fed up with having their entreaties for SOGI data collection to begin be ignored, gay state Senator Scott Wiener (D-San Francisco) introduced legislation that would force state and county health officials to collect it among novel coronavirus patients.
Newsom broke his silence on the issue when he responded to a question that the Bay Area Reporter submitted for his Wednesday afternoon news conference.
"God Bless — I've been very clear that we want this information to be forthcoming. We've been in touch with Scott Wiener, who's been an outstanding leader in this space, and have been in contact with the LGBT caucus on this," Newsom said. "I'm very deferential to the work Scott Wiener is currently doing. Nobody wants to see this information more than (state public health director) Dr. Sonia Angell."
If passed, Senate Bill 932 would track how many LGBT people are being infected, hospitalized and placed in intensive care, as well as how many have recovered versus died. On a call with reporters Wednesday prior to the bill's first hearing before the Senate's health committee, Wiener expressed his frustration that Newsom had not issued an executive order requiring the SOGI data be collected.
"Frankly, I will be honest. Frankly, I wish I wasn't forced to introduce this legislation. This issue should have been taken care of already," said Wiener, who chairs the Legislative LGBTQ Caucus, whose seven members are all co-sponsors of SB 932.
Assemblyman David Chiu (D-San Francisco) is also co-sponsoring the bill, as he has authored two bills in recent years that required various state agencies and departments to collect SOGI data. But the current health crisis has revealed that the implementation of those bills has been lacking at the state level.
"The state of California and our counties and health care providers should already be collecting this data," said Wiener. "Collecting demographic data for contagious diseases is not a new thing. It is already happening."
But the fact that the state has not been asking for SOGI data since the start of the pandemic "is frankly appalling," said Wiener. "It is appalling we have the ability to collect the data and it is an afterthought."
Rick Chavez Zbur, the executive director of the statewide LGBT advocacy organization Equality California, was also critical of the Newsom administration's failure to immediately rectify the lack of SOGI data collection among people infected with COVID-19. He said when he was recently tested for the virus he was fuming at being asked for all sorts of demographic information but not about his sexual orientation or gender identity.
"This is a really urgent issue. In my six years as director of Equality California this has truly been the biggest, most urgent, and troubling wake up call I have experienced," said Zbur. "In 2020 in the state of California, we literally have to beg our government and public health officials to collect information to protect the health of LGBT people."
Critics of SOGI data collection for COVID-19 patients have claimed the information is not relevant to fighting the novel coronavirus. In the words of New York Governor Andrew Cuomo (D), "this virus doesn't discriminate."
But, as Scout, Ph.D., who uses only one name, told the B.A.R. last month, "The virus doesn't discriminate but pre-loaded health disparities create discrimination." The National LGBT Cancer Network anticipates that LGBT people have more risk from COVID-19 because of higher rates of cancer, HIV-infection, smoking and its attendant respiratory illnesses and discrimination in the medical field.
People over 65 and those in poor health are at greater risk from the coronavirus.
According to a study from the Williams Institute, an LGBT think tank at UCLA School of Law, an estimated 162,300 lesbian, gay, and bisexual people and 9,000 transgender people age 65 and older live in California. Of them, 53,100 LGB people and 3,000 transgender people have fair or poor health.
Up until Wednesday, Newsom's office has not responded to the B.A.R.'s request for comment about the lack of SOGI data collection and Wiener's bill. Wiener said his office has been in direct contact with the governor and Angell.
Wiener said he is confident that "they understand this is important" and that the state Department of Public Health is working on updating its data collection systems so that the SOGI data is being asked. But he faulted the state agency for not already having such a system in place, which it was supposed to have already set up by now under Chiu's legislation that was adopted years ago.
"I don't think there is any disagreement this needs to happen," said Wiener, who acknowledged that state health officials are facing an unprecedented crisis due to the pandemic. "They are drinking water from a fire hose right now."
Wiener was pressed about some of the opposition the bill has faced, such as around privacy concerns.
"You can decline to answer, just like how people decline to answer about race," Wiener said. "This information is HIPAA-protected. The only way it gets released is aggregated data, so those privacy concerns are very well taken care of."
He was referring to the federal Health Insurance Portability and Accountability Act of 1996.
Wiener said that, if worse comes to worst, the courts will make sure that the SOGI questions are added.
"At the end of the day, if this doesn't go into effect and doesn't happen, that's why we have courts," Wiener said.
Amanda McAllister-Wallner, the director of the California LGBTQ Health and Human Services Network, said that disparities in which data is being collected where makes a statewide standard necessary.
"We don't want to only know about what is going on in San Francisco, Long Beach and Los Angeles," McAllister-Wallner said. "We can't get to uniform data collection without state leadership on this issue."
Wiener went to a meeting of the Senate health committee to introduce the bill immediately after the call.
"Wish me luck on presenting a bill with my mask on," he said.
The committee, after hearing testimony from Zbur and McAllister-Wallner and passing amendments based on some of the concerns of county health officers, approved the legislation in a 9-0 vote.
Updated, 5/13/20: This article has been updated with a response from the governor.
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