Many LGBTQ patients struggle to find sensitive and compassionate health care. UCLA is working to change that.
From their earliest childhood memories, Cyrus Dunham knew they weren’t a girl. Assigned female at birth and given the first name Grace, Dunham — who now identifies as gender non-binary and prefers the pronouns they/them/their — grew up feeling like they were playing parts in a movie in order to fit in socially. “I tried really hard to perform girlhood, always with a big gap between my internal sense of self and my external sense of self,” Dunham says. The struggle weighed heavily on their mental health, and Dunham suffered from both anxiety and depression.
In Dunham’s book A Year Without a Name (Little, Brown & Company), published in October 2019, they take readers along their path of self-discovery, a journey they started as Grace and ended as Cyrus. Dunham, 27, says a turning point came when they were in their early 20s and began meeting and making friends with individuals who had either transitioned or were identifying as non-binary. “It was a massive relief when I got to know people who, whether they were non-binary, trans men or trans women, were making the choice to reject the categories they had been placed in — to know it didn’t have to be that way,” Dunham says.
That realization was liberating, but Dunham continued to reckon with their identity. Ultimately, they decided to undergo top surgery and hormone therapy. “While I still strongly feel neither category, woman or man, can totally hold me, I realized it was taking up so much space in my life to be dealing with this gender dysphoria, to not feel good in my body,” Dunham explains.
They also became more acutely aware of the limitations of the health care system in meeting the needs of people like them. The 2015 U.S. Transgender Survey, conducted by the National Center for Transgender Equality, found that one-third of transgender individuals who saw a health care provider in the last year reported having at least one negative experience related to being transgender. Four years later, Dunham says, even in a region as diverse as Southern California, finding health care professionals who are knowledgeable about gender diversity and gender health can be challenging.
“I have so many friends who have gone to doctors and been asked, ‘How do you know you’re trans? Are you sure?’” Dunham says. “Even if doctors are well-meaning, there is little fluency, and it can feel exhausting to think about having to do that basic education. I think that leads a lot of trans people to avoid dealing with the medical system as much as they can. If you get sick, you might avoid going to the drop-in clinic, because you never know whom you’re going to get or how you will be treated.”
These experiences are not unique. For many LGBTQ individuals, health care settings have, at one time or another, felt less than welcoming. In 2010, Lambda Legal published When Health Care Isn’t Caring, a landmark report that was the first to examine barriers to health care among LGBTQ and HIV-positive communities on a national scale. More than half of all respondents said they had experienced at least one of the following from a health care professional: refusing to touch them or using excessive precautions; blaming them for their health status; using harsh or abusive language; being physically rough or abusive; or simply refusing them care. And, despite substantial progress over this decade in societal attitudes toward LGBTQ individuals, such experiences remain anything but rare, says Tari Hanneman, director of the Health Equality Project for the Human Rights Campaign Foundation, the education arm of the nation’s largest civil rights organization advocating for LGBTQ equality.
“Discrimination is still a huge issue in LGBTQ care, and, unfortunately, when people face discrimination or hear about discrimination against others, they’re more likely to avoid seeking care,” Hanneman says. People who are transgender or gender diverse face particularly high levels of discrimination, Hanneman notes. Even when providers are well-intentioned, they often still have a lack of understanding that can lead to both insensitive conversations and poor care.
AMONG INDIVIDUALS WHO IDENTIFY AS TRANSGENDER OR GENDER DIVERSE, NEGATIVE EXPERIENCES are all too common. “Many people have stories about providers or institutions that are ignorant, in large part because there hasn’t been much education of health care providers about gender transition or about general health care delivered through the lens of a person’s gender experience,” says Amy K. Weimer, MD, assistant clinical professor of medicine and an internal medicine and pediatrics specialist who co-directs the UCLA Gender Health Program with Mark Litwin, MD (FEL ’93), chair of the UCLA Department of Urology. “Many patients also feel actively discriminated against or are reluctant to speak about their gender status because of discomfort.” Transgender patients have complained that too often providers will make gender the exclusive focus of a visit, even when they are seeking care for an unrelated health issue, Dr. Weimer adds.
Because medical education traditionally has spent little, if any, time on transgender health care, many providers are left uncertain about basic issues, such as how medical gender transition affects routine patient care or what questions are important to ask and what questions are inappropriate. “As a group, physicians are very uncomfortable in situations where we feel we might make a mistake,” Dr. Weimer says. “When I’m teaching students and residents about caring for this population, the biggest barrier I encounter is the fear that they’re going to say something insensitive. If we get that kind of feedback, we need to take responsibility and then learn from it, apologize and move forward.”
Dr. Weimer points out that when patients are steering clear of health care settings, it means they aren’t obtaining vital preventive care services, such as cancer screenings and vaccinations, and they may be more likely to engage in unhealthy behaviors.
Transgender individuals who feel uncomfortable in the health care environment might delay seeking hormones, surgeries and other gender-affirming services, which can contribute to poor mental health outcomes. “We know that people who are prevented from expressing their gender in what feels to be an authentic way have catastrophically high rates of depression and suicidality,” Dr. Weimer says.
UCLA HEALTH HAS UNDERTAKEN PROACTIVE STEPS to right these historic and current shortcomings and ensure equitable, affirming and supportive environments for LGBTQ patients and their families. The effort has been recognized by the Human Rights Campaign Foundation, which, in its 2019 Healthcare Equality Indexes, awarded UCLA Health’s four hospitals — Ronald Reagan UCLA Medical Center, UCLA Mattel Children’s Hospital, Stewart and Lynda Resnick Neuropsychiatric Hospital at UCLA and UCLA Medical Center, Santa Monica — the distinction of “LGBTQ Healthcare Equality Leader.” (UCLA Health and its hospitals have received the distinction every year since it was inaugurated in 2014.)
Drs. Weimer and Litwin launched the UCLA Gender Health Program in 2016 after Dr. Weimer heard compelling stories about the need for such a program from patients who were either transgender or had transgender family members. “I kept hearing that they were grateful to receive health care in a place where they felt comfortable,” she says. “It became clear that this needed to be formalized, so that people could find the care they need.”
At the program’s flagship primary care clinic in Santa Monica, children, adolescents and adults who are transgender or gender diverse receive primary care and chronic disease management, as well as care specific to their gender or gender-transition issues, in an environment where health care providers and staff are knowledgeable and sensitive to patients’ needs. (Transgender generally refers to people whose gender identity is different from the sex they were assigned at birth; gender diverse recognizes the growing number of people who don’t identify as strictly male or female, instead adopting such terms as gender non-binary, gender queer or gender fluid.)
The program is rooted in primary care, providing comprehensive services, including vaccinations, health-risk assessments, disease screenings, nutrition counseling and chronic-disease management, as well as health services specific to the needs of transgender and gender-diverse patients.
The center’s physicians also coordinate care with a network of UCLA surgeons, obstetrician/ gynecologists, urologists, endocrinologists and behavioral-health professionals as appropriate. “In the past, it’s been on patients to do all of the footwork in trying to find providers who specialize in the services they need,” Dr. Weimer says. “Our goal is to offer as much as we can within the walls of UCLA, so that we can help patients navigate their care.” Gender-specific services include hormone management; sexual-health services, including reproductive and fertility counseling; counseling on gender-transition issues, whether it’s specific treatment needs or issues such as depression or anxiety; and gender-affirming surgeries and procedures that modify the body to align more closely with the patient’s gender identity.
AT THE UCLA CENTER FOR CLINICAL AIDS, RESEARCH AND EDUCATION (CARE), which provides state-of-the-art care to people who are HIV-positive or have AIDS, the vast majority of patients are gay and bisexual men, says Emery H. Chang, MD, assistant clinical professor of medicine and an internal medicine and pediatrics physician and HIV specialist at the center.
The enduring stigma around HIV and LGBTQ issues results in many patients not feeling comfortable disclosing information that would be important to their care, Dr. Chang says. He notes that as recently as two years ago, he was at another federally qualified health center where he discovered that a woman, after waiting hours to see a doctor about an abnormal Pap test, was ultimately turned away when it was learned she was HIV-positive. “There still are cases of outright, unethical discrimination,” Dr. Chang says. “And there are many other instances where LGBTQ people are not being turned away, but they are not receiving competent care.”
That sub-optimal care can manifest in a number of ways, Dr. Chang explains. One couple, who had just moved to a college town in the Midwest and sought his advice on finding a new primary care provider, complained that they needed to “train” their new physician on the basics of pre-exposure prophylaxis (PrEP) therapy. Dr. Chang has heard from HIV-positive patients about doctors who made assumptions about their lifestyle or blamed them for their disease status. In some cases, he says, patients who have experienced homophobia and discrimination might feel reluctant to share relevant information, such as their sexual history, potentially compromising the ability of an otherwise competent and well-meaning physician to provide important counseling and testing.
At CARE and elsewhere, Dr. Chang says, UCLA is taking extra measures to ensure that interactions with LGBTQ patients at both the staff and provider levels are inclusive and welcoming. In the CARE hiring process, he notes, candidates are vetted to ensure that they are not only well-versed in issues of importance to their LGBTQ patients, but also able to connect in a way that allows them to provide compassionate services. “When patients see these efforts,” Dr. Chang says, “it sets a tone that not only improves their experience, but also allows us to deliver higher-quality care.”
He offers as an example a recent visit from a new patient, a middle-aged man who said he had been looking for a gay physician, then went on to disclose for the first time that he was gay. “He said it was so hard to say those words out loud to someone, especially someone he had never met,” Dr. Chang recalls. “Even though society is more accepting today, many people still go through an internal struggle in the coming-out process, and so it’s important that they feel comfortable with their physician.”
Dr. Chang notes that throughout UCLA Health, efforts are being made to be more inclusive, even in ways that are seemingly minor but that send an important message — for example, in both forms and interactions, not assuming that when patients indicate they are married it necessarily means that spouse is an opposite-sex person.
“The environment you create for your patients is extremely important,” says Natalia Ramos, MD (RES ’15, FEL ’17), MPH, assistant clinical professor of psychiatry & biobehavioral sciences and a UCLA child, adolescent and adult psychiatrist. “Changes that the health system is prioritizing — including correct pronouns and names, making sure staff and providers avoid stereotyping and that forms are not binary but open and inclusive — send messages to patients that go a long way in determining whether or not a patient will access care.”
Dr. Ramos directs the recently launched EMPWR (“empower”) Program, which aims to provide a safe, open environment for LGBTQ youth with mental health concerns. Numerous studies have found that sexual- and gender-minority youth are at elevated risk for poor outcomes, such as depression, suicidality, substance use and trauma. “Often, this is a cumulative effect of various stressors — discrimination, harassment, micro-aggression, family rejection, issues with peers and not having supportive environments,” Dr. Ramos says. EMPWR delivers a range of evidence-based services through the lens of understanding minority stress and an affirmative model — the belief that any expression of gender identity or sexual orientation is normative. A teen resilience group teaches cognitive behavioral therapy skills that have been shown to help with mood, emotional regulation and finding positive supports.
“LGBTQ populations, both adults and children, are frequently underserved,” Dr. Ramos says. “Studies show that LGBTQ individuals face more barriers in seeking mental as well as physical health care. By improving training and services, as well as awareness and visibility in the community, UCLA Health is sending the message that we are welcoming and inclusive and that we have specialists and services built around the needs of LGBTQ patients.”
AS PART OF AN EFFORT TO CREATE A NATIONAL STANDARD FOR LGBTQ HEALTH CARE, the Human Rights Campaign Foundation, in partnership with GLMA: Health Professionals Advancing LGBTQ Equality (previously known as the Gay & Lesbian Medical Association), created the Healthcare Equality Index (HEI). The HEI aims to establish standards particularly around policies and practices in hospitals. “One of the benefits of this is that we’re taking the temperature of organizations around the country and then sharing results and best practices that institutions can use as a roadmap to improve their LGBTQ care and policies,” says Hanneman, the HEI’s author.
Hanneman believes that a top priority for health care institutions should be to ensure that staff receive appropriate training in LGBTQ-specific care. “Most physicians get very little education about LGBTQ care in medical school, though that’s beginning to change,” she says. “And beyond the health care providers, the training needs to cover everyone in the system, from the front-line staff to the cafeteria workers and security guards.”
That imperative is a core tenet of the UCLA Gender Health Program, whose entire team, including office staff, is trained on an ongoing basis to ensure a respectful environment. “We want to earn the trust of our patients, as well as to educate providers about transgender and gender-diversity issues to remove the mystery, so everyone can focus on providing the best individualized care for each patient,” Dr. Weimer says.
AFTER DUNHAM REACHED THEIR DECISION TO MEDICALLY TRANSITION, they became frustrated with the shortage of health care professionals available to provide the care. Even in Los Angeles, finding a clinic that was experienced in working with trans people proved difficult, and when they did find one, there was always a long waiting list. Dunham was feeling frustrated when a friend told them about their positive experience with the UCLA Gender Health Program. Dunham began seeing Dr. Weimer for hormone treatment and primary care in April 2018.
Dunham was immediately struck by the warmth and sensitivity they encountered. “Immediately, they asked me for my pronoun preferences, what names I preferred to be called and how I identified,” Dunham says. “I felt able to explain that I was making the choice to start hormones but didn’t necessarily identify as a man and that I wanted to take it slow and see how things felt. UCLA is really far along with understanding what it means to work with people who don’t identify as men or women. Dr. Weimer always answers my questions from a place of understanding. I’ve never felt like I have to explain things to her.”
Starting on the hormone therapy had the effect of controlling Dunham’s anxiety in a way that no medication had before. “Whether it was the testosterone itself or the fact that I was finally ready to let myself be the way I wanted to be, I don’t know, but it has been profound in how it has affected my mental health,” says Dunham, who says they have referred a number of their friends to the UCLA Gender Health Program.
Before becoming a patient at UCLA, Dunham says, they wouldn’t disclose their gender identity to their health care providers. “My body wasn’t visibly trans yet, and I didn’t know how to have that conversation,” Dunham says. “Now that I look to the world like a man and have what is considered female genitalia, it’s scary to think about going to any doctor who isn’t fluent in trans health care. I’m grateful that UCLA has these doctors, where if anything comes up, I don’t have to worry about going in for treatment.”
Dan Gordon is a regular contributor to U Magazine.