The State Is Supposed to Be Collecting Data About COVID in the LGBTQ Community. Where Is It?

Three months after his COVID-tracking bill was signed into law, California State Senator Scott Wiener says he’s frustrated by a lack of action
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The warning was out there: the coronavirus is no hoax, no joke. To prevent another surge, health officials pleaded with the public to mask up and not travel over the holidays. But defiance, denial, and COVID fatigue prevailed, forcing Los Angeles Mayor Eric Garcetti and Governor Gavin Newsom to order lockdowns as new cases and deaths skyrocketed. As of December 7, California reported 1,366,435 confirmed cases of COVID-19 with the tragic, unnecessary loss of 19,935 human beings, a .03 percent increase from the total number of COVID-related deaths the day before.

At the moment, no one knows how many of those deaths or cases are LGBTQ people. But the government is supposed to know—a point that gay State Senator Scott Wiener, a San Francisco Democrat, finds “extremely frustrating.” On September 26, after months of letters and agitation from LGBTQ and AIDS organizations contending that LGBTQ people are at higher risk for contracting COVID, Newsom signed Wiener’s COVID-tracking Senate Bill 932.

“These new laws will help us better understand the impacts of COVID-19 on the LGBTQ+ community,” Newsom said in a press release.

SB 932 requires healthcare providers to collect and report sexual orientation and gender identity (SOGI) data for all reportable communicable diseases. The data helps public health officials track the virus in the expressive LGBTQ community and to explore its impacts, such as the economic devastation among entertainers, hospitality, and travel industry workers, non-profits, and small businesses.

LGBT activists had been agitating since the spring. On March 11, the National LGBT Cancer Network and GLMA: Health Professionals Advancing LGBTQ Equality distributed an open letter from more than 100 organizations specifying how COVID-19 could impact LGBTQ communities with vulnerabilities and underlying medical conditions. In May, the Williams Institute at UCLA School of Law noted that of the nearly 1.7 million LGBT people in California—almost a half-million of whom live in Los Angeles County—an estimated 162,300 LGB and 9,000 transgender people age 65 and older were at extreme high risk for serious illness from COVID-19. Additionally, LGBT people have intense housing instability and food insecurity with higher rates of poverty, homelessness, and discrimination.

In April, when California reported 22,348 cases with 687 deaths, Newsom noted a hard-to-find button on the state’s COVID-19 information portal, promoting help lines for LGBTQs in distress. As of December 7, that button is still the only COVID information regarding the LGBT community.

“The law has been in effect for about three months and it just doesn’t seem to be happening,” Wiener told Los Angeles. “I’ve been tested for COVID several times and I’ve never been asked my sexual orientation. It’s not an acceptable state of affairs and CDPH [the California Department of Public Health] needs to get this right.”

Wiener says he’s sending a letter to the director of public health expressing his concern. “At some point, if we need to, we’ll ask for an audit of the agency on this issue because it’s extremely frustrating,” he says. “There’s a certain inertia in place because this data has historically not been collected. And so it requires a number of different changes and a lot of different players, in terms of healthcare providers….I never expected immediate perfection. And I understand we’re drinking water from a fire hose. So, we’re just going to continue to work with them and push to make sure this happens. But we’re in the middle of a pandemic so it’s very frustrating.”

Despite multiple requests for comment, Los Angeles didn’t get a response from CDPH.

If nothing happens, Wiener will call upon the California LGBT Legislative Caucus to take action. He is the outgoing chair. If LGBT data still remains uncollected, “we absolutely will need to take this to a national level” through conversations with California Attorney General Xavier Becerra, who he expects to be confirmed as Secretary of Health and Human Services in the incoming Biden administration. “I’ve not spoken to the Attorney General about this issue but I’m sure he’ll be sympathetic,” says Wiener.

And there is precedent. In June 2011, as part of the Affordable Care Act, then-Health and Human Services Secretary Kathleen Sebelius issued an edict to collect LGBTQ healthcare data.

Meanwhile, as Wiener fights for enforcement of his critical law, invisibility is erasing the COVID-impacted LGBTQ community.


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