May 5, 2020 at 10:46 am PDT | by Karen Ocamb
Wiener introduces historic bill requiring California to collect LGBTQ COVID-19 data

Out California State Sen. Scott Wiener (Photo courtesy Wiener’s office)

(Updated) Gay New York Times columnist Frank Bruni’s May 2 interview with AIDS expert Laurie Garrett, “the prophet of this pandemic,” is shocking in its contrarian recommendations and predictions for the spread of the novel coronavirus.

“[W]hat America needs most right now, she said, isn’t this drumbeat of testing, testing, testing, because there will never be enough superfast, super-reliable tests to determine on the spot who can safely enter a crowded workplace or venue, which is the scenario that some people seem to have in mind,” Bruni writes about Garrett. “America needs good information, from many rigorously designed studies, about the prevalence and deadliness of coronavirus infections in given subsets of people, so that governors and mayors can develop rules for social distancing and reopening that are sensible, sustainable and tailored to the situation at hand.”

With the extraordinary explosion of COVID-19 cases in April, more and more attention is being paid to subsets of people identified by race and ethnicity. But despite repeated pleas from elected officials, public health and community members about the high risk of possible infection, the LGBTQ community has been ignored or systematically excluded in assessments of the impact of this deadly pandemic.

That may be about to change. Late on Monday, May 5, California State Sen. Scott Wiener introduced SB 932, legislation to require the state to collect LGBTQ data during the COVID-19 crisis,  including infection, hospitalization, ICU, recovery, and mortality rates.

Though US Health and Human Services Sec. Kathleen Sebelius pledged to collect LGBTQ data as part of the Affordable Care Act in 2011, a directive at least Los Angeles County Public Health implemented in 2013, SB 932 “would be the first legislation of its kind to compel a state government to collect this information; currently, neither the federal government nor any of the 50 states are doing so,” says a press release from Weiner’s office. (Update: New York state ordered LGBTQ data collection in 2026 but apparently has not been doing it, according gay journalist Andy Humm.)

“There is also a longstanding history of government neglect for LGBTQ health, often with regards to a lack of data collection. The census – and many health forms – currently do not ask about sexual orientation and gender identity, which means that the LGTBQ community often suffers from a lack of resources and focus from public health infrastructure,” the release says. “This neglect is most pointedly illustrated by the federal government ignoring the HIV/AIDS crisis in the early 1980s, an epidemic of which so many members of the LGBTQ community died. President Ronald Reagan did not say the word ‘AIDS’ until 1986, after thousands had already passed away from the disease. SB 932 will ensure that public health officials will understand the impacts of COVID-19 on the LGBTQ community, and will help LGBTQ people get the resources they need.”

“We know that COVID-19 is harming the LGBTQ community, but because no data is being collected, we’re hamstrung in making the case to devote attention and resources,” says Wiener. “The history of the LGBTQ community is a history of fighting against invisibility. Without data, we quickly become an invisible community and risk being erased. California must lead and collect this critical health data.”

“This is not the first pandemic in which the federal government has ignored or erased the LGBTQ+ community, but we’re committed to making sure it’s the last. LGBTQ+ people are more vulnerable to COVID-19 because of disparities in health and well-being that we’ve faced for generations,” says Rick Chavez Zbur, Executive Director of Equality California, which is sponsoring the bill. “But as long as public health officials and government agencies aren’t collecting data to understand the size and scope of the impact, our community is at risk of being left out of relief efforts. It’s crucial that California meet this moment and lead the way.”

During a recent virtual Equality California town hall, Wiener acknowledged that Newsom is “drinking out of a fire hose” in trying to handle the massive problems that continue to arise around the coronavirus global pandemic. But ignoring the LGBTQ community as a subset of people will not help contain the spread.

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. For instance: 37% of LGBTQ adults smoke every day compared to 27% of non-LGBTQ people; 21% of LGBTQ people have asthma, compared to 14% of non-LGBTQ people.

“[W]e call on public health officials to ensure the LGBTQ community is considered and included in the public health response to COVID-19 based on potential risk factors that exist in our community,” wrote GLMA President Scott Nass, MD, MPA.

On April 10, Wiener and Assemblymember Todd Gloria, Chair and Vice-Chair of the California Legislative LGBTQ Caucus respectively, sent Newsom a letter asking for LGBTQ data collection and on April 21, GLMA issued a second open letter focusing on nondiscrimination, data collection and economic harm for LGBTQ communities.

The Los Angeles Blade has been asking Newsom about LGBTQ data collection since April 14. He has responded acknowledging the AIDS epidemic, the longtime plight of homeless youth, and noting resources for emotional support and well-being on the COVID19.CA.GOV  website, including helping lines directed to LGBTQ people in distress.

As the COVID-19 crisis exploded in April, the LA Blade started asking about help for LGBTQ non-profits, which have traditionally served as safety nets for those afraid of or excluded from the healthcare system.

On Monday, May 4, before Wiener announced his new bill, LA Blade’s dedicated COVID-19 correspondent Brody Levesque again asked about LGBTQ data and help for non-profits.

Levesque: “Good afternoon, Governor.  Thank you for taking my question. I’d like to know if you had given any thought to your budgetary processes for some of the LGBTQ non-profits and organizations and the centers who help out because, as Sen. Scott Wiener had confirmed in a virtual town hall meeting a couple of weeks ago, they’re more or less facing ‘mass extinction.’

 

And to go with that — it’s been a couple of weeks since I asked you about numbers in terms of what we’re looking at with this COVID impact on the LGBTQ community.

So, if you wouldn’t mind — take a crack at those, sir, I’d appreciate it.’

 

Newsom: “Thank you. This budget is profoundly challenging. All of these requests, needs, desires — legit requests, needs, desires will be put in perspective when the numbers come out.

 

We’re going to be making some very challenging decisions. We’re also going to be protecting foundational parts of our budget. But one cannot over-promise what we’re capable of delivering.

 

Considering the magnitude — you just do the math on 4 million-plus people that have filed for unemployment insurance just since March 12th, not January 12th but since March 12th, to get a sense of the magnitude of our responsibilities to meet the needs of all of our communities.

 

But always a top priority for me and for this administration —- and I know for the legislature, is to protect the most vulnerable communities as a priority.

 

But again, we have an enormous challenge in front of us and we’ll do our best to meet the moment —- to protect some critical programs in our state to the extent possible, despite some of those challenges.

 

As it relates to the specific data, specific numbers — I don’t have them here (gestures with both fingers at his head), at least here. So, let me get back. We know where to find you.

 

I’ll ask Dr. Angell, who last answered those questions, to see if she’s updated those numbers or has been able to extract those numbers —cause once again those numbers are not readily available to the state. We sort of have to pull what information we can from local governments.

 

I’ll give you an update.”

(UPDATE: Dr. Angell did, in fact, call the California LGBT Legislative Caucus and then called LA Blade COVID-19 correspondent Brody Levesque to discuss the issue of LGBTQ data collection. We will report new information when it becomes available – KO)

After the news conference, Wiener seemed to appreciate the gesture.

“Our nonprofits help define the LGBTQ community. These organizations are critical safety nets for our community. They provide healthcare, help our vulnerable seniors and youth, provide mental health and addiction support, and house the homeless,” Wiener told the LA Blade. “These nonprofits aren’t optional: they’re part of who we are. We can’t afford to lose them and must do everything in our power to keep them intact. I look forward to working with the Governor — a longtime champion for LGBTQ people — and with my colleagues to support this key need.”

Given Newsom’s concern about the budget and the fact that Wiener’s SB 932 includes expenditure of presumably recoverable money, the bill is not a slam dunk. However, it may be the official directive needed to start collecting LGBTQ data.

Over the past month, the LA Blade has queried five Medical Examiner/Coroners offices across both Northern and Southern California, including the LA County Medical Examiner’s office, and all indicated, on background, that their investigators would be able to make a determination of sexual orientation or gender identity as a part of any final death investigation determination — if so required or requested by Public Health or other appropriate officials.

SB 932 does include the caveat that, due to any privacy concerns the data collection questions may bring up, the LGBTQ data will be anonymized, with self-reporting of sexual orientation and gender identity as only an encouraged option, not required. The five medical examiners with whom the LA Blade spoke concur that specific names and personal details would need to be kept confidential — but a number count would be possible.

Perhaps one day, being LGBTQ won’t be considered such a stigmatized demographic.

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