Seeking Inclusive Care

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California is home to one of the largest populations of adults and youth who identify as transgender in the US. But in more ways than one, the health care system is failing California’s Black transgender and nonbinary communities, who face a mountain of hurdles when it comes to finding medical providers offering inclusive and affirming patient-centered care.

Some barriers are rooted in historic traumas. Generations of discriminatory practices against Black patients, including medical experimentation on Black people, left a legacy of an abiding distrust of health care institutions within the Black community. LGBTQ+ individuals have likewise been subjected to discredited practices — such as conversion therapy, which aims to suppress gender identity and expression by enforcing heteronormative and cisgender norms — that have shaped the community’s relationship with the medical system.

Black LGBTQ+ patients also experience trans erasure, in which providers dismiss a patient’s lived reality by using pronouns and other sex and gender terms incorrectly; misrepresentation of facts and evidence about the trans community; and race-based medical care, in which clinicians assess disease risk, make diagnoses, plan treatments, and gauge outcomes through the lens of a patient’s race. Together, these practices form a discouraging framework that prevents Black LGBTQ+ Californians from seeking and receiving equitable whole-person care.

In response, Black trans and gender-nonconforming individuals around the state have shown resilience and leadership in their efforts to cultivate a more affirming health care system. Many wish these admirable traits were not so necessary to survive a health care system that is falling short.

Campbell formerly led the Trans Thrive program at the San Francisco Community Health Center. The program fosters trans-inclusive care at an institution that serves a predominantly Black patient base. One of the program’s goals is to transform patients into employed program specialists. “We put the power in their hands to design, create, and cultivate what it looks like to have quality health care,” Campbell said.

She currently serves as the shelter operations manager at the Taimon Booton Navigation Center, a new program of the health center that addresses temporary shelter and housing for trans and gender-nonconforming people, as well as cisgender women escaping intimate partner violence, sex work, or housing instability. She also is a contributing developer of the US Centers for Disease Control and Prevention’s Transgender Women Involved in Strategies for Transformation (TWIST) project, through which Campbell uses her personal experience to improve care for trans patients nationally across health care systems.

Misconceptions about trans and gender-nonconforming people impede the delivery of quality care, according to Campbell and others. For example, providers may believe the fallacy that people “choose to be trans” and are therefore responsible for the challenges they face, Campbell said.

Providers might also become preoccupied with a patient’s gender and ignore other non-gender related health needs. Earlier in her career, when Campbell worked as a medical assistant and health educator, she often found herself mediating interactions between patients and providers to focus medical attention on the chief complaint that gave rise to the visit.

Sparse Knowledge of Trans People

Limited contact with trans individuals leaves most people without personal experience to offset erroneous messaging. In a 2016 Pew Research study, almost 90% of Americans said they knew someone who was gay, lesbian, or bisexual, while only about 20% knew someone who was trans.

That lack of knowledge also extends to health care providers, leaving trans patients to contend with provider beliefs that do not align with their lived experiences. For instance, when it comes to accessing family planning and reproductive health services, trans men must often navigate confusion or disrespect on the part of providers who fail to recognize that not all people who become pregnant and give birth identify as women or mothers. To include those diverse experiences, many organizations, including CHCF, have adopted gender-neutral terms like “birthing people.”

Of course, the use of inclusive terminology along is not enough to combat trans erasure in health care. “In a health context, I don’t know if there can be misconceptions, because [the medical establishment doesn’t] even consider us in the first place,” independent journalist, author, and podcaster Tre’vell Anderson (they/them/theirs) said in an interview. Anderson explores the evolution of trans experiences in their book, We See Each Other: A Black Trans Journey Through TV and Film.

Often, misconceptions and exclusionary practices begin in the waiting room. Standard patient enrollment forms, which typically ask patients to self-identify as either male or female, burden gender-nonconforming patients with having to verbally explain their identity to providers. Doing so can be triggering because nonbinary and trans individuals already spend time educating providers and staff about their lived experiences to receive care.

Providers have also been known to dismiss or deny a patient’s symptoms or concerns or make inaccurate assumptions about their sexuality based on their gender expression. “I do think that there is a perception in the culture at large that we either are confused or that we are making a pit stop on a life journey toward some sort of further binary final station,” Anderson said. “But some of us aren’t interested in that. Some of us aren’t interested in engaging with the medical establishment as a means of affirming our gender.”

Anderson’s concern highlights an expansive shift in trans identification. Historically, the term transgender has been applied to individuals who have transitioned from male to female or female to male, often through surgery, hormonal therapy, or both. Today, it is understood that individuals who identify with both sexes or neither sex may also identify as trans.

Biases Cause Negative Health Outcomes

Black trans and nonbinary people commonly face transphobia and structural racism — social stressors that contribute to their over-representation in experiencing negative health outcomes.

Those inequities have captured the attention of the state’s top health officials. “We’ve been traveling across the state doing listening sessions with our transgender community,” said Mary Watanabe, (she/her/hers) director of the California Department of Managed Health Care, in an appearance at a CHCF conference on the health care challenges facing Black Californians.

“Much of what we heard … is appalling — the lack of just human kindness…” she said of health services providers’ treatment of Black trans patients. “I don’t know how most people in this country that work in the health care system would not find those [stories] compelling and at least pause to think about [their] role in that [discrimination].”

Watanabe said clinicians alone are not to blame. “One of the biggest challenges is that the health care experience often starts with calling the customer service person at your health plan or the receptionist at the front desk, and we all have had the experience of having someone treat us poorly, and you just never want to go back. If that person sitting at the receptionist’s desk knew that someone could die as a result of how [they] treated another human being … I have to believe more people would pause and just think about that,” she said.

Race plays a significant role in the care systems that Black trans and gender-nonconforming patients must navigate. In part, that is the result of race-based medicine — a dated and racist practice in which care is tailored based on supposed biological differences between racial groups. Clinicians, researchers, and patients alike assert that race-based medicine draws on bias, has no basis in evidence, and often results in substandard care for communities of color. Still, it remains deeply ingrained in American medical training.

Not only do these practices present significant hurdles for Black trans and gender-nonconforming patients, they also speak to larger structural issues in how health is understood. For instance, attributing negative health outcomes to race and other socially constructed identities — including gender — removes responsibility from the institutions responsible for providing medical care. Furthermore, it places blame for health disparities on individuals and communities, thereby ignoring the environmental factors and social determinants that affect patient health.

Talking to Black Trans and Gender-Nonconforming Patients

As language and understanding around gender identity grow, younger generations have been early adopters of practices that recognize differences and reject binary paradigms. Indeed, a 2020 study found that LGBTQ+ people born in the 1980s and 1990s are more likely than LGBTQ+ people Baby Boomers to distinguish sexual orientation from gender expression.

These differences have implications for how providers talk with patients about sex, said family physician Aisha Mays, MD, (she/her/hers) founder and CEO of Oakland’s Dream Youth Clinic, which provides youth-led health services and support.

For example, Mays warns against assuming that a patient is engaging in certain types of sex, or any sex at all, just because of a specified sexual orientation. Instead, Mays recommends that providers ask patients about their individual sexual experiences. The responses can then guide providers in creating patient-centered care plans based on actual — rather than assumed — practices, Mays said.

Limited Access to Trans-Inclusive Care

Black trans and gender-nonconforming patients are making herculean efforts to search for quality health care. That’s because while many cities have institutions focused on inclusive care for LGBTQ+ patients, demand often exceeds capacity.

After experiencing months-long wait times for appointments at one of the most prominent LGBTQ+ health care facilities in Los Angeles, journalist and author Anderson concluded the facility was not a viable primary care option. Yet they were hesitant to change clinics, fearing that widely available appointments might point to other problems, such as negative staff attitudes toward trans patients. “In what ways am I going to have to moderate someone else’s feelings or ignorance or insensitivities or their anxieties around my body and the needs that I have?” Anderson asked.

Lack of access has forced many individuals into positions of self-reliance. “I’ve always been an advocate for myself because I had to be,” said Jonathan P. Higgins, PhD, (they/them/theirs), a media critic who is nonbinary and the creator of the Black Fat Femme podcast. “I was living in a world where every time I spoke up, I was the problem, instead of people [asking], ‘Why does Jon need to keep speaking to these issues?’” Higgins said.

Listening to Black Californians — a landmark CHCF study that surveyed thousands of Black Californians about their health care experiences and priorities — highlighted the disproportionate barriers to care faced by Black trans and gender-nonconforming individuals. Twenty-five percent of LGBTQ+ respondents said health care providers had treated them poorly when discussing their weight, for example, compared to 14% of non-LGTBQ+ respondents.

Higgins has personally experienced those sorts of discouraging comments from providers. “There are all these little undercuts of the doctors not knowing what to do with me because I’m a bigger girl,” Higgins said. “I’m queer, and all my vitals look great. They want to assume that something is wrong with me because of who I am every time I come [to the doctor’s office].”

On the other hand, positive interactions go a long way. Higgins recalled an instance when their primary care provider explained that weight alone was not a reliable indicator of health. The provider then prioritized other metrics such as blood pressure, blood sugar, and cholesterol levels as part of their health assessment. This led to the start of a fruitful patient-provider relationship, Higgins said.

Moving Toward Patient-Centered Care

As California health systems evolve to have more patient-centered care models, there are a number of adjustments that can be made to meet the needs of Black and trans patients.

Inclusive practices like using gender-affirming pronouns and updating new patient paperwork to offer nonbinary gender selections are key starting points. Representation is also important, Campbell said, emphasizing that Black and trans people should be visible members of medical teams and support staff.

Acknowledgement and respect are also critical. Listening to Black Californians found that people who identify as LGBTQ+ were nearly unanimous in the opinion that it is “extremely” or “very” important to have a provider spend time with and listen to them. To help make that happen, Anderson recommended that providers instruct staff to do pre- and post-appointment check-ins with patients who might not otherwise have all their needs or questions addressed during a single visit.

For Higgins, listening to LGBTQ+ people means valuing the experiences of Black trans and gender-nonconforming patients rather than leaning on tropes or beliefs that do not reflect a person’s actual practices. That requires providers to look beyond a patient’s gender identity or expression and pay attention to all aspects of the individual.

As Higgins explained, quality care means providers are “just listening and caring enough to see patients as humans who are striving and struggling to make it in systems that are not built for them — and trusting them and believing what they are saying is true.”

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