The Pennsylvania Department of Health said, 'These variables are essential for a complete and timely public health response to patients.'
Data on the impact of the coronavirus pandemic on the LGBTQ community is vital to understanding how to improve health and economic outcomes and ensure that vulnerable members of the population get the protection and treatment they need.
LGBTQ and progressive organizations say that this data is important because this group is more likely to be exposed to the virus through frontline jobs and is economically vulnerable compared to the general population.
So far only California, Pennsylvania, Nevada, and the District of Columbia have announced the collection of such data, however, and lawmakers are demanding answers and accountability.
At the beginning of the coronavirus pandemic, organizations that focus on LGBTQ rights, including the Human Rights Campaign, told states that they needed to collect more data on the virus' impact on queer, transgender, and/or non-binary people.
In April, two openly gay Democratic lawmakers in California, state Sen. Scott Wiener and state Assemblyman Todd Gloria, who has since been elected mayor of San Diego, sent a letter to Gov. Gavin Newsom advocating for the state to collect COVID-19 data specific to the LGBTQ community.
The state announced that it would collect data on sexual orientation and gender identity for new COVID-19 cases, and in September, Newsom signed a bill sponsored by Wiener into law to put better standards in place for the collection of that data.
Now Wiener is asking what happened to those efforts.
Wiener and the secretary of the California Health and Human Services Agency, Mark Ghaly, sent a letter this month to the Public Health Work Group of Health Level Seven International, a not-for-profit standards developing organization that determines what information is included when compiling data on patient characteristics. Wiener and Ghaly asked the group to work quickly to address problems with data collection stemming from its lack of inclusion of sexual orientation and gender identity (SOGI) information.
Other states gathering the SOGI data said that some of the information is incomplete, that there are not enough responses for agencies to release the data, and that there they don't know specifically when state governments will release this data they have collected.
Benjamin Brooks, assistant director of policy at Whitman Walker Health, a health center in Washington, D.C., for the LGBTQ community, said, "Collecting [sex orientation and gender identity] and intersex status data in testing, treatment, and vaccine rollout is important to help public health officials identify gaps and help to target messaging and interventions where they are needed most. By doing this we can see if LGBTQI people are being reached in efforts to contain and ultimately eliminate the pandemic."
In August, Nevada announced it would include SOGI data with the information it collects when someone tests positive for the coronavirus. Lindsey Kinsinger and Ashleigh Faulstich, who work for the state's Office of Public Health Informatics and Epidemiology, said that data will be released once the state has enough to "to make evaluation statistically relevant."
Kinsinger and Faulstich said that initially there was resistance to answering questions about sexual orientation and gender identity, which required changing how the questions were asked to make clear why the information was being requested. They said that, overall, 4% of people declined to answer questions about gender identity and 12% declined to answer questions about sexual orientation.
Washington's health department, D.C. Health, said it was tracking this data as early as April, but as of August, D.C. Health it was saying the data was incomplete and couldn't yet be released. Last week, the department said, "DC Health has improved sexual orientation data for the previous 2-3 months, though the information is limited to data collected during contact tracing interviews. ... Unfortunately, gender identity to include transgender and other populations are still not being reported consistently or in sufficient numbers to release."
Asked about ongoing efforts to collect SOGI data in Pennsylvania, the state's Department of Health only confirmed that it is collecting it: "The Department of Health continues to educate both providers and laboratories that these variables are essential for a complete and timely public health response to patients with COVID-19 and other reportable diseases."
The HL7 Public Health Work Group did not immediately respond to questions about its work.
The California Department of Public Health told the American Independent Foundation that it is "committed to health equity and collecting more detailed data, such as sexual orientation and gender identity. It said it is working with local health departments to "understand obstacles" to collecting the data.
A spokesperson said that public health staff can't always reach people with COVID-19 for an interview or get them to answer all questions, adding, "Right now, there are many competing priorities for local health department staff, including coordinating vaccination efforts, responding to outbreaks, working with communities to promote disease prevention efforts, and contacting infected persons to encourage isolation."
Whitman-Walker's Brooks said it is a "real problem" that so few states are voluntarily collecting this data in COVID cases.
It would help state data collection efforts if the Centers for Disease Control and Prevention created guidance for the collection of SOGI data, he added.
Published with permission of The American Independent Foundation.