Chicago couple Delilah Orizaba and Dani Ault have been happily stuck together during quarantine.

“Any other human being in my life I could not do this with — absolutely full stop,” Ault said.

They got engaged a month into COVID-19, but Orizaba had the ring for months. But sharing a 250-square-foot studio apartment in Uptown meant that when Orizaba got COVID-19 last month, Ault got it, too.

The virus put both of them in the ER, where Orizaba had a bad experience.

“The minute I mentioned I was trans, they were very worried that me being on hormone therapy was somehow causing all the symptoms,” she said. “I’ve been on hormones for four years.”

Many trans women fear seeking out health care, concerned that they will be brushed aside when they need help — or won’t get help at all.

That’s a big problem for the community as a whole, because queer people frequently struggle with poverty, mental health and face discrimination of all kinds — all factors that could lead to worse health outcomes.

While we know that Black and Brown communities are being hit especially hard by COVID-19, nobody really knows how queer people are faring. That’s because health officials aren’t tracking gender and sexuality at COVID-19 testing sites. And some think asking those questions could actually be a barrier to better health care.

LGBTQ community at risk

At the start of the pandemic, the Human Rights Campaign compiled the latest studies on LGBTQ health and economic disparities. They found that out of the roughly 16 million queer people in the US, about a third of them worked “essential jobs” where they could be more easily exposed to the virus.

Studies on housing, poverty and employment all showed essentially the same thing. Queer people fared worse than the general population, trans people were worse off than the average queer person, while trans people of color faced the most adversity.

One study showed that 40% of Black trans adults and 45% of Latinx trans adults live below the poverty line.

And in 2018, the CDC found one in five queer people didn’t see a doctor when they needed to because they couldn’t afford it.

Experts say the health care disparity could become even worse if Health and Human Services successfully strips Obama-era nondiscrimination protections from LGBTQ people later this summer. That ruling came within a week of the Supreme Court ruling in favor of federal job protections for LGBTQ people.

When it comes to COVID-19, the real time data doesn’t exist. Neither the Chicago or state health department are asking COVID-19 patients for their status when they’re tested.

Some people, like Josie Paul, director of the TransLife House at the a queer social service agency Chicago House, think that because queer people are a marginalized population, it’s important to know what they are collectively experiencing.

“It’s deplorable that CDPH and IDPH don’t have the data,” she said. “So it will all remain anecdotal, because we don’t care enough as a society to say ‘Let’s see how these groups are affected,’ because it’s too small for me to care about.”

She says this is especially true for people of color within the LGBTQ community.

“We expect [that] outcomes are going to be worse, because there’s going to be more stigma about accessing healthcare, there’s going to be more difficulties accessing healthcare,” Josie Paul said.

Concerns about privacy

Others say testing should be as easy and accessible as possible — and asking too many personal questions could spook people.

Dr. Magda Houlberg is Chief Clinical Officer at LGBTQ clinic Howard Brown Health and Chair of the American Medical Associations Advisory committee on LGBTQ issues. While Howard Brown is asking for gender and sexuality, it’s voluntary and their staff is trained in how to collect it. All they need is a name and a phone number.

Houlberg worries that if healthcare workers for the state or a big hospital system were asking the same questions, queer people may be reluctant to share out of discomfort or fear of discrimination. That’s why she’s hesitant to create a wholesale system to collect this data.

“We haven’t had anybody getting mad for us asking when we explain why,” she said. “But we’re also an LGBTQ-identified health center. So it’s not out of the realm of possibility that we might ask that question.”

It’s a tough dilemma even for trans women themselves, like the happily engaged couple Dani Ault and Delilah Orizaba. Ault said that trans people are entitled to privacy that keeps them safe. Orizaba said it’s important to have the data.

“If I said queer people are disproportionately contracting COVID-19 that’s one thing,” Orizaba said. “But if I said … two times higher than general population queer people are contracting COVID-19, that’s a big difference to me.”

It could be awhile before we know how this is impacting the whole LGBTQ population.  The city hopes to address the issue by including questions about gender and sexuality  in an upcoming COVID-19 health survey. It’s expected to be completed in the fall.

This story has been updated to correct the last name of Dani Ault.

Vivian McCall is a news intern at WBEZ. Mariah Woelfel is a general assignment reporter at WBEZ. Follow them @MVivianMcCall and @MariahWoelfel