LGBTQ data added to the state’s COVID-19 testing

Pennsylvania Governor Tom Wolf announced on March 13 that the state will include LGBTQ-specific information as part of its COVID-19 data collection.

A medical mask with rainbow strip coloring

The Pennsylvania Department of Health began collecting race and ethnicity data after racial disparities were revealed during the pandemic. It has expanded the effort to include sexual orientation and gender identity.

In his announcement, Wolf said that collecting the additional data will help ensure that everyone experiencing symptoms of COVID-19 in Pennsylvania has equal access to diagnostic testing.

“The fact Wolf has given the OK to collect this data is a huge deal for the LGBTQ community,” says Erin Cross, director, Lesbian Gay Bisexual Transgender (LGBT) Center at Penn.

She says Pennsylvania is stepping up and leading the way for other states.

“It’s being called a trailblazer state in collecting the data as part of its COVID-19 response,” she says. “I am really proud to be a resident in a state where LGBTQ lives are valued and people want to get data so that our health continues to improve as a whole.”

Dennis Flores, an assistant professor at the School of Nursing, who specializes in HIV/STI prevention, thinks it’s wonderful that Wolf has enacted plans to be able to track data in terms of sexual orientation and gender identity.

“As this pandemic is unfolding, we are being forced to create programs that would address the needs of different subpopulations, and there certainly are particular concerns that make it unique for the LGBTQ community,” he says.

Informed by his early years as a bedside nurse in the last AIDS unit in the Southeast in Atlanta, his current research is focused on developing family-based LGBTQ health promotion interventions. As a one-time national spokesperson for two national HIV testing campaigns, Flores emphasizes the value of health screening and preventive health in his work with the LGBTQ community.

A lack of LGBTQ data presents problems when it comes to assessing needs and allocating resources, but Pennsylvania’s government is trying to rectify these issues, according to Flores.

“If there was no accounting for how many folks from the LGBTQ community would test positive or if we didn’t have details of the data, we wouldn’t be able to create programming that would be tailored to the specific means and needs of this community,” he says. “We would be assumed under the general public, and that would mean we could lose important details that might be beneficial in ensuring that we have success in the outcome we want to achieve.”

The COVID-19 health crisis has magnified and intensified the many ongoing disparities among the nation’s minority groups and, Cross says, especially as it relates to sexual orientation and gender identity.

“The most at-risk population broadly is the elderly in the LGBTQ community,” she says. “There were a lot of issues even prior to the pandemic that needed to be addressed, and now with the pandemic, it’s has shed more of a spotlight on the issue that there are services that are needed for the elderly LGBTQ community.”

Flores says social isolation in the elderly is a major concern, and causes a lot of mental and physical health issues.

“If you don’t have any support system as you age in this community, it makes it harder for you to access services, be able to show up for an appointment, or receive assistance,” he says.

Flores says in the fight to combat these inequities, communities must be deliberate in their  approach by mandating that health care records for testing account for LGBTQ patients receiving quality care.

“Our city is one of the largest poor cities in the United States,” he says, “and so we know that health outcomes are more dire within some subpopulations. We know that COVID-19 rates are disproportionately higher within the African-American community. We know that it is more pronounced in lower economic status groups. Thus, as LGBTQ individuals, we have intersectional identities where we might belong to two or three of these marginalized groups. With that, it compounds the risk factors, potentially being exposed to the virus, or our success in combatting its spread or making sure we stay healthy if we do contract the virus.”

Cross says this is why the counting of LGBTQ community data is very crucial.

“Unless we know the dimensions and the number of people we need to be cognizant about, we will always just be guessing,” she says. “So it’s good to have hard data to support our programs and goals.”

Flores says people cannot take this issue lightly and cringes at reports that suggest that the coronavirus does not discriminate.

“So while it might not discriminate on the basis of skin color or sexual orientation or gender identity, the conditions we find ourselves living in, and the social determinant of health make it a little bit more possible for some people to really have the capacity to fight it, and others not at all,” he says.

Flores says most people lack the understanding of how the social conditions of our lives leave historically marginalized populations more vulnerable to COVID-19. 

Unless we know the dimensions and the number of people we need to be cognizant about, we will always just be guessing, so it’s good to have hard data to support our programs and goals. Erin Cross, director, Lesbian Gay Bisexual Transgender (LGBT) Center

With this major announcement, Pennsylvania has started collecting data that can help keep the LGBTQ community safe from the virus. Historically, however, Flores cites, many in the LGBTQ community have been reticent to release personal information on their sexual orientation or the nuances of their gender identity.

“The community may be fearful for their jobs and livelihood,” says Flores. “Consider places beyond Center City, for instance. You can see that for members of the LGBTQ community employed in industries, with low-paying jobs for example, they might not be out at work and fearful of the data being misused. Their concerns are valid. They are concerned about their gender identity or sexual orientation being used against them when the economy reopens. The community may be concerned that their identity is going to be used subconsciously or even consciously to discriminate against them.”

With that said, Flores believes that collecting the data is far more important than the anxiety around the issue, and isn’t too concerned about the data being used in a nefarious way.

“I’m hopeful that the collected data is secure due to the fact that we currently have an out transgender person as the state’s health secretary,” he says. “The fact that we have a very high profile member of the community at the helm has given me a positive outlook about the programming that Pennsylvania has implemented.”

Flores says that most current information on the LGBTQ population is anecdotal, based on individuals’ lived experiences, and collecting data is better than not collecting at all.

“I’m more in favor of it because visibility matters,” he says. “It’s going back to the larger question of the Census and why it’s very important for people to be counted. If you are not doing the good outreach and making sure everyone is accounted for, then it’s minimizing and disregarding a certain community.”

Cross says data collection will result in improved health care for the community as a whole, and for a population that is already vulnerable.

“I think any data we can collect will help in outreach efforts to all underserved communities,” she says.