Navigating Transgender Health Care in a Cisgender World
Transgender people live in an often-hostile world. Can community, research, and resilience reduce the threats to their health?
Renee Lau knew from age 6 that she should have been female, but she couldn’t say so in her parents’ strict religious household in suburban Baltimore. Assigned male at birth, she spent more than five decades suppressing her authentic gender identity until, with the encouragement of a therapist, she came out to her wife in 2017. A cascade of calamities followed: Her wife filed for divorce, her employer went bankrupt, and she was treated for bladder and prostate cancers. Despite being “broke and homeless,” as she puts it, she began her transition, which presented a new quandary: Baltimore had housing for transgender people, and assisted living housing for seniors, but nothing that accommodated senior trans people with medical needs such as Lau’s, which included aftercare for her bladder cancer. For nearly a year, she was forced to hide her true self in order to qualify for senior housing, living as a man in a homeless shelter designated for men.
In 2021, Lau launched a Facebook campaign to raise awareness and money to start a nonprofit to provide housing to older trans people. Unbeknownst to her, Iya Dammons, an activist and the executive director of the Black trans-led housing and wellness nonprofit Baltimore Safe Haven, was following her Facebook page. Dammons was curious to see whether Lau was committed to this work. After a year of persistence but little headway, Lau was leaving Johns Hopkins Hospital when something remarkable happened: Dammons, who had seen Lau’s Facebook post about being in the hospital, greeted her at the door. She was accompanied by a case manager and her organization’s signature purple van.
“She says, ‘Renee, we have a house right now for seniors, and you’re my house manager,’” Lau recalls on a warm August morning outside of Baltimore Safe Haven’s headquarters on a quiet street in the Edmondson Historic District. Inside the office, staffers worked quietly at desks, while Dammons’ two bulldogs, Chunk and Mocha, strolled off-leash looking for someone to pet them. Lau has excelled in her new environment—she’s now director of Senior and Disabled Housing, managing a seven-bedroom assisted living facility, as well as doing HIV outreach and helping Safe Haven expand its operations to Washington, D.C.
Lau’s experience reflects the many challenges that trans people face in the U.S., from stigma and stress to housing issues and health care needs. Lau’s health care provision must account for the nuances of her identity, history, and anatomy: She is a female survivor of prostate cancer, an older adult in need of trans-friendly housing, and a potential vaginoplasty patient with a reconstructed bladder from her cancer treatment. Her experience also shows how the trans community itself is a vital source of support that can help its members meet those challenges and thrive.
Life at nearly every level is more complicated for transgender people.
The accumulating impacts of job discrimination, housing insecurity, inadequate or even hostile health care, and the stress of living in a world designed for cisgender people exacts a toll on their health. (See sidebar.) Researchers have documented higher rates of mortality compared to the general population; one 2022 analysis of insurance data found that trans people were nearly twice as likely to die over an eight-year period as their non-trans counterparts. While helping lead the largest prospective study to date on transgender women’s health and HIV risks in the eastern and southern U.S., Andrea Wirtz, PhD ’15, MHS ’07, an assistant professor in Epidemiology with long experience studying health and human rights, witnessed this. Over the course of the study, Wirtz and her colleagues began to learn about deaths among study participants, several of which were attributed to homicide, overdose, suicide, and other causes. The research team revised their protocol to better document and bring attention to deaths that occurred among participants. “Mortality rates at that level, particularly attributed to traumatic causes, would never be acceptable in any other population, yet it sort of just gets ignored,” Wirtz says.
The early mortality in the first study didn’t surprise Lau. Though she knows, and works with, many older people seeking gender-affirming care, too many others never reach an advanced age. “Nobody even thought about senior transgender people,” Lau says. “Because a lot of transgender people don’t live past their 40s.”
Why? A panoply of factors. Trans people in the U.S. tend to fare worse than the general population as a group on classic social determinants of health such as housing, socioeconomic status, job security, and access to health care. At the same time, they must navigate a world that has not been designed for their needs and has grown increasingly hostile to their very existence, as evidenced by the recent raft of anti-trans legislation. There’s the sheer daily burden of living in a world that is still rife with transphobia, misunderstanding, and micro-aggressions. The “minority stress model,” a framework proposed by public policy scholar Ilan H. Meyer in 2003, links poor mental health outcomes to the additional stress experienced by sexual and gender minorities as they move through a world in which cisgender people are the norm. Stress can raise cortisol levels and trigger inflammation in the body and may be a reason why trans people report higher rates of smoking and substance use.
Job discrimination against trans people is one example of how social stressors and discrimination can translate into poor health outcomes. Such discrimination puts trans people at risk of being poor or uninsured, which can limit access to quality health care. This discrimination has long been accepted and was for a time even official policy in some national institutions. Paula M. Neira, program director of LGBTQ+ Equity and Education at Johns Hopkins Medicine, experienced this discrimination firsthand, with ongoing consequences for her health. Assigned male at birth, Neira had fulfilled her lifelong dream of serving in the U.S. Navy. After 10 years, she decided in 1991 to resign so she could live authentically aligned with her gender identity. It was “the most traumatic thing that I’ve ever had to do,” says Neira, JD, RN. She coped by letting herself gain weight so she couldn’t meet the Navy’s height-weight and physical training standards. It was a more bearable rationale for why she was no longer doing her dream job. “Had I stayed in shape … then these discriminatory policies would have kept me out of being able to serve. And that was just too painful,” she says.
After leaving the Navy, she retrained as a nurse, and eventually as a lawyer. But her method of coping had long-term consequences for her health. Despite her knowledge of trauma and PTSD, she found it difficult to admit she needed help. “As a nurse, I know that that's stupid, that being able to ask for help is actually a sign of strength,” she says, “But it took me a while to get past all that internalized stuff from being part of the military culture on my own.”
Neira eventually developed Type 2 diabetes. It took her 27 years from when she resigned from the Navy to give herself permission to seek mental health counseling, and to begin taking care of her health.
All the factors that put transgender individuals “at risk for risk,” as leading trans researcher Sari Reisner, ScD, who is a co-PI with Wirtz, puts it, are not an inevitable result of being trans. Rather, they are a result of trans people’s interaction with a society that does not offer them adequate support or care. For example, Neira fought to reverse the U.S. military’s “Don’t Ask, Don’t Tell” policy barring gay, lesbian, and bisexual people from serving openly, and later helped change military regulations in 2016 so that trans people like her would never have to make the same decision she did. But while some states have passed laws protecting gender-affirming care (which may include hormone therapy or surgery), the overall trend in the U.S. has been one of restricting access, criminalizing providers who help patients transition, banning trans people from using the bathroom consistent with their gender, and restricting trans athletes’ participation in sports. The Trans Legislation Tracker counts 83 anti-trans bills passed in 23 states in 2023 so far, more than three times the 26 bills passed in 2022.
“Nobody even thought about senior transgender people. Because a lot of transgender people don’t live past their 40s.”
This legislative onslaught has created a climate of fear among providers in states with bans, and a sense of panic among patients, who are eager to push ahead with their surgeries, says Fan Liang, MD, medical director of Johns Hopkins’ Center for Transgender and Gender Expansive Health. Among the patients she treats, she now observes “a desperation to get their services completed as quickly as possible,” which can mean back-to-back surgeries or even multiple procedures on the same day. Liang counsels patients about the need for a rehabilitation period to avoid complications, but she understands why they are in a hurry—they fear that if they don’t complete their transitions now, they might soon not be able to at all.
More and more patients are traveling greater distances for gender-affirming care, says Helene Hedian, MD, director of Clinical Education at the Center. Previously, they arrived from neighboring states, but recently, she has seen people from Florida, North Carolina, and Puerto Rico. She worries about people in states with bans who can’t afford to travel for their care. She has also witnessed a notable downturn in her trans patients’ mental health. “It’s really damaging to hear, day after day, headline after headline about care being restricted,” Hedian says. What’s more, she added, “You can only hear so much negativity about a community that you belong to before it starts to affect you.”
Some transgender people have found hope in progressive Maryland, which recently expanded Medicaid coverage to include gender-affirming care and where Gov. Wes Moore signed an executive order in early June protecting people who provide that care. The response was immediate. Lau says in the first two weeks of June, Baltimore Safe Haven received 1,600 calls from trans people in red states such as Texas, Missouri, Kentucky, Florida, and Tennessee, asking about housing options if they moved to the city. Over the next three weeks, as word spread of the executive order, they received roughly 7,000 more calls. Researchers are still measuring and analyzing how being under siege affects trans people’s health outcomes, but everyone agrees that hearing politicians attack one’s very existence is causing harm. “We need to gather these data points to draw conclusions,” says Harry Barbee, PhD, an assistant professor in Health, Behavior and Society. “But in the interim, people are actually suffering.”
Even in progressive states, trans people face challenges navigating the country’s complicated health insurance system. They must obtain insurance that is able to cover critical procedures and find trans-affirming care providers who are sensitive to their needs.
While the Affordable Care Act made it illegal for insurers to have blanket exclusions of gender-affirming care, they may still reject specific procedures, says Kellan Baker, PhD ’21, MPH, MA, executive director of the Whitman-Walker Institute, who previously worked on implementation of the ACA. “It’s often very difficult to ascertain exactly what is covered under any given plan,” he says. During claims processing, many are rejected by automated software that may flag a “mismatch” between the “gender” of a procedure, such as a Pap smear or a prostate exam, and the gender listed on the person’s insurance card. Human staff may turn down claims if they are unfamiliar with transgender health.
Baker sees the reluctance to cover necessary treatment as not only discriminatory but economically short-sighted, since gender-affirming care has been shown to alleviate a host of conditions associated with untreated gender dysphoria such as depression, anxiety, and poor self-reported health. “They’re really, in many cases, minimal expenditures, that would treat gender dysphoria and would allow transgender people to be truly and effectively and safely who they are,” he says, citing hormone therapy as one inexpensive treatment protocol.
A 2022 Center for American Progress survey found that 49% of transgender or nonbinary respondents were concerned that disclosing their gender identity might result in the denial of good medical care. Unsurprisingly, many trans people avoid health care settings, missing preventive screenings and other vital care, including gender-affirming care. Trans people can also face institutional barriers such as an intake questionnaire that may ask them to check a box for male or female—or “sex at birth” without asking about current conditions—creating a possible barrier to care. While some health care providers actively discriminate, the majority simply don’t feel equipped or comfortable to treat trans patients, says Hedian. This uneasiness can be addressed through continuing education—if the provider is willing to learn.
Roughly three-fourths of practices now ask a patient about sexual orientation and gender identity, according to research by Ellesse-Roselee Akré, PhD, MA, an assistant professor in Health Policy and Management, and others. But it’s not always clear how this translates into care that is sensitive to these and other dimensions of their identity. “They’re not meaningfully using this data,” says Akré.
Confronted by an often-hostile society and discrimination in health care and insurance, trans people often rely on each other for guidance on where to find sensitive providers. Merrick Moses, an Independent Catholic priest and Benedictine monk who was assigned female at birth, came out as a lesbian in 1998, but it wasn’t until 2011, at the suggestion of a therapist, that he began interrogating his gender, eventually transitioning in 2014. “You always listened to the people who have been in it for a long time, who have navigated these systems,” Moses says. “I had friends telling me where to go, who to talk to.” Through recommendations, he found a surgeon based at the University of Maryland, and a local health center where “great, compassionate nurse practitioners” taught him how to administer his hormone injections and supported him through his transition. Now, Moses mentors young LGBTQ people in Baltimore, helping them find their place in the city’s vibrant queer community.
The trans community also plays a larger role in public health research on the trans population, with important consequences for the questions asked and how they are asked. In the past, Baker says, academics were discouraged from doing “me-search,” or research that focused on people like them, because it was thought to be biased. Today, it is widely recognized that the most salient research questions come from trans people themselves, and that transgender community members and trans-identified scholars are essential to the advancement of high-quality research in this area. For both of the studies that Wirtz is working on, trans researchers are involved at all levels of expertise and responsibility—as principal investigators, faculty, staff, students, and postdocs, as well as allies. Their input on everything from study design to the safety and protection of participants to the dissemination of research findings among the trans community “makes for higher quality and more acceptable research.” For example, in discussions with the trans community, Wirtz, who’s jointly leading the national cohort to understand health among trans women, and her colleagues learned that HIV is simply one issue among many for trans people. (She recalls a participant in one session saying, “If you talk about HIV, we’ll walk out of the room.”) The women she spoke to wanted more data on access to gender-affirming care, equity in employment, social support, and personal safety, among other issues. The study was then designed to measure these priorities.
Similarly, members of Baltimore’s trans community are integrally involved as investigators, research staff, and community advisory board members in the research project CLEAR (Communities Leveraging Evidence for Action and Research), led by Danielle German, PhD ’09, MPH, an HBS associate professor. In addition to emphasizing housing as a top concern, board members and researchers worked together to think about how best to ask about sexual behaviors and anatomy, questions that are key to addressing questions about HIV transmission and sexual health among trans populations. “Our team has been very, very diligent in making sure that the measures, and the questions that we’re asking are, in fact, inclusive of all of the ways that not just people’s body parts are part of sexual activity, but how people might refer to their body parts and how they might refer to their partner’s body parts,” German says.
Paula Neira also points out that researchers have to be very careful to clarify what, exactly, they are studying and how they categorize respondents, since there are so many factors at play in a given health outcome for people of all genders. When researchers design a study of a disease or a health outcome, are they accounting for nonbinary people, or for the effects of hormone exposure for a trans person? How do those later exposures interact with, say, genetics, gestational hormone exposure, and primary/secondary sex characteristics, or experiencing the world in a given gender? A well-designed study should account for these nuances of biology, the social world, and a patient’s medical history. “One of the research challenges is getting people to understand the diversity and the complexity of these issues, where traditionally we took a very simplistic approach,” Neira says.
One phenomenon researchers are hoping to do a better job documenting is the role of community support and connectedness in contributing to positive health outcomes. Moses realized how important role models could be when a mentee, who was 17 or 18 at the time, told Moses he was “the first functioning gay person” the mentee had ever met. “They had never seen a gay person who actually had a job,” Moses recalls. Barbee, who studies older queer populations, says having access to queer communities and intergenerational relationships “can provide a major source of life purpose.” Just as young people benefit from “firsthand knowledge of what it means, or how to navigate the world, as a trans or queer person”—something that was important to Barbee as they began coming out as a queer nonbinary person—older people also benefit from “having the opportunity to impart their knowledge,” they say. Researchers and trans people cited countless examples of how the trans community steps up for its members in immediate and practical ways, such as offering a couch to sleep on or giving out micro-grants during COVID-19. With CLEAR, German and her collaborators hope to gather evidence on how support in the Baltimore trans community is a valuable public health resource. “We have measures of stigma and discrimination,” she says. “But we also have measures of connectedness to the trans community, and more positive measures. Our goal is partly to highlight these strengths as part of a holistic appreciation of trans people within community, but also ensure that funding and other resources are available to sustain trans community supports and effectively address priorities identified by community members themselves,” such as housing, mental health care, and safety.
These community supports are something that Renee Lau doesn’t take for granted, and they are something she is now proud to be a part of in her role at Baltimore Safe Haven, which Dammons has expanded to Washington, D.C., with plans to serve Virginia as well. Lau reflected on this as she recently drove from Baltimore to D.C., to visit Safe Haven’s new drop-in center, which will eventually be joined, she hopes, by another housing facility. If it hadn’t been for Dammons’ offer of a job and housing, she is not sure where she would be.
But today, she says, “I can work and live as a transgender person 24/7.”