Tracking transgender and nonbinary people's experiences during pandemic informs better care

Challenges from the COVID-19 pandemic separated many from quality, affirming care and life-changing procedures.

Over the last year, the COVID-19 pandemic posed new challenges to patients seeking access to health care. For transgender and nonbinary people, such challenges separated them from quality, affirming care and in many instances, paused or prevented life-changing procedures.

A new study out of UCLA’s Gender Health Program aims to understand the ways the pandemic has specifically affected the health care experiences of transgender and nonbinary patients.

When the COVID-19 pandemic hit, it became apparent that studying patient experiences and developing treatments were important aspects of understanding the disease, says Mark S. Litwin, MD, chair of the Urology Department at UCLA and co-director of the UCLA Gender Health Program.

“It occurred to many of us that the barriers that transgender and gender expansive people face are often at least as high as the barriers that other marginalized populations have faced in the past, and perhaps even more so,” he says. “If patients can't get in to see the doctor or the other providers, that care is going to be more scattered and difficult.”

In August of 2020, Kristen Williams, population health research manager in the Department of Urology at UCLA, working with Dr. Litwin, began to track patient experiences in real time to study the social determinants of health and how study participants were adapting, struggling and/or succeeding.

“We wanted to characterize the barriers that we saw before the pandemic and what the new ones were, and then we wanted to get a sense of how people's livelihoods were being affected,” Williams says. “We wanted to know who was able to work from home, who was losing their jobs, their insurance, having difficulty with housing, and how the public health programs that serve this community were faring as well.”

Through in-depth interviews conducted over the course of a year, Williams and Litwin learned patients were enduring cancelled appointments, treatments and procedures, and experiencing difficulty accessing their hormone medications. Also, the loss of community spaces such as LGBTQ++ centers, which serve as a network of social support, was especially challenging for transgender and nonbinary folks.

“People in this population, who historically have been very isolated and marginalized from society, have been particularly dependent on the ability to physically get together in a physical space for mutual support,” Dr. Litwin says. “All that was interrupted, so it ends up having not only physical implications, but also mental health implications.”

By analyzing the social determinants of health, such as housing and employment instability, social isolation and interruptions to health care, Dr. Litwin says the team at the Gender Health Program will be better equipped to attend to these issues in the future.

“One of our goals has been to document and better understand what we could do as the Gender Health Program to serve our community, both in crisis and when things are better,” Williams says.

Pros and cons of telemedicine

Telemedicine is one of the offerings that has created both opportunities and challenges. “It has allowed access to gender health specialists, who might otherwise not be so immediately available to some folks,” says Dr. Litwin.

An example, he says, is one patient who was forced to move out of state and back home with their parents due to housing instability. Telehealth allowed them to continue services at UCLA Health throughout the pandemic.

Some individuals have felt as if a layer of safety has been added to their patent experience, he says. “They don't have to go out into public and run the risk of being misgendered or harassed.”

For other patients, however, communicating through video has been an invalidating experience, Williams says. “They're seeing their face all the time, which you don't necessarily do when you're talking to a person and that can be distracting. When your visual self doesn't match your internal self, that can obviously be distressing.”

One study participant told Williams that they cancelled their virtual therapy visits because the connection no longer felt authentic. “It didn’t feel right (to them),” Williams says. “Having come out and be living out in this world with all the accompanying struggles – and then to have a sense of being pushed back and having this barrier between you and the world again, that could be really difficult.”

Dr. Litwin and Williams also learned that transgender and gender expansive patients don’t want their gender identity to be the talking point for every visit.

“Patients who are transgender or gender nonbinary, by and large, come to the doctor for the same things that cisgender patients come to the doctor for,” says Dr. Litwin. “It might be a runny nose, or a rash, or it might be abdominal pain. One's gender identity may or may not be related to that.”

He says these learnings wouldn’t be possible without the community relationships and engagement from the Gender Health Program board of community advisers.

“To the extent that we are doing research, it is specifically focused on what our community is telling us ought to be researched,” he says.

And not only is UCLA here to help on the journey of trans and nonbinary folks, he says, it’s also here to help with issues unrelated to gender identity.

“Either way, we have a warm, supportive, high-quality environment.”

Learn more about the Gender Health Program at UCLA.