‘Culturally competent’ transgender health care starts with clinicians
In the last 15 years, Jae M. Sevelius, PhD, has seen positive changes in transgender health care, mainly from an awareness perspective.
“When I first started, the primary question I got was, ‘Yeah, but how many trans people are there anyway?’ Kind of like, ‘Why should it matter?’” said Sevelius, an associate professor in the Center for AIDS Prevention Studies and a researcher in the Center of Excellence for Transgender Health, both at the University of California, San Francisco. “It felt like the onus was always on me to prove the issue even mattered, whereas now I feel like people understand that it really does matter.”
Depending on the estimate, there are between 1 million and 1.4 million transgender adults living in the United States. Transgender patients are underserved and face considerable barriers to care, including a lack of access to what Sevelius calls “culturally competent” health care — providers who are responsive to the unique needs and concerns of transgender patients. According to a recent survey, many transgender people avoid care altogether because they fear being discriminated against.
Significant gaps in research mean health data on transgender patients, particularly transgender men, are limited. Available research suggests that transgender patients test positive for HIV at a far higher rate than the national average, and transgender women carry a disproportionate burden of HIV, particularly black transgender women. However, transgender patients overall have largely been left behind when it comes to HIV research. Even the CDC’s annual HIV surveillance report does not include data on transgender patients because information on gender identity is not routinely collected or documented by the jurisdictions that report HIV numbers.
“Trans people tend to be on the tail end when people think about rolling out interventions,” Sevelius said. “We keep seeing the same pattern repeat itself over and over again in HIV prevention and treatment research, where transgender people are included as an afterthought — if at all.”
Infectious Disease News spoke with several experts about how to improve transgender care in the U.S. and what areas of research need to be scaled up. Experts said a lot can be done at the clinical level to make transgender patients feel more comfortable and to improve their access to care, including having appropriately trained staff.
“It can make the difference between trans people staying engaged in health care and not being engaged in health care and actually dropping off completely,” Sevelius said. “It’s absolutely critical that people who are serving [transgender] patients have specific education on how to do that in a culturally competent way.”
‘Respect is critical’
Multiple factors, including stigma and discrimination, can impede access to health care for transgender patients. In a survey on LGBTQ discrimination that was conducted by the Harvard T.H. Chan School of Public Health, National Public Radio and the Robert Wood Johnson Foundation, more than one-fifth of transgender respondents said they avoid doctors or health care out of concern that they will be discriminated against, and 31% said they had no regular doctor or form of health care.
Lack of physician knowledge also can be a barrier to care for transgender patients. According to Alex S. Keuroghlian, MD, MPH, director of the federally funded National LGBT Health Education Center at The Fenway Institute in Boston and assistant professor of psychiatry at Harvard Medical School, there is a growing interest among clinicians to learn how to provide the best care for transgender patients.
“It’s growing, seemingly exponentially, because it’s not something that clinicians are trained to know how to do,” Keuroghlian said in an interview. “Even ID docs are often playing catch-up. They don’t necessarily have any formal training in trans care.”
There are some essentials that clinicians need to know to provide appropriate care for transgender patients. Using the correct pronoun and calling a patient by their preferred name over what is listed on their medical records are elementary to helping transgender patients feel welcome and comfortable, experts said.
“Respect is critical,” Jeanne M. Marrazzo, MD, MPH, professor and director of the division of infectious diseases at the University of Alabama at Birmingham, told Infectious Disease News. “Part of that is honoring the patient’s wishes that pertain to their identity. Names and pronouns get to the core of that.”
According to Tonia C. Poteat, PhD, MPH, assistant professor in the division of infectious disease epidemiology at the Johns Hopkins Bloomberg School of Public Health, it is also important to know how to take a sensitive sexual history.
“When I was in school, I was taught to ask [patients if they] had sex with men, women or both, and that’s not a question that works for all people,” Poteat said in an interview. “What you really want to know is if they’ve been an insertive or receptive partner for anal sex, an insertive or receptive partner for vaginal sex. You want to know what kind of anatomy they have, those kinds of things.”
Keuroghlian said the National LGBT Health Education Center has various resources to help physicians provide better care for transgender patients, including free live webinars, some of which focus on gender-affirming hormone therapy management and others that are more specific to infectious diseases, like how to engage transgender patients in conversations about HIV pre-exposure prophylaxis (PrEP).
The center also provides free factsheets, books and other material on topics important to LGBT care and offers onsite training and assistance for health care organizations large and small that call asking for help. Clinicians can learn how to implement inclusive policies and procedures, according to Keuroghlian.
“We have a whole range of publications on everything from collecting sexual orientation and gender identity data to training frontline staff within clinical settings to engaging in affirmative care. Some of it gets very technical with regards to trans care,” he said.
Experts have advocated for an even more foundational approach to transgender health education that begins in medical school, and recent findings suggest it could improve care.
A study by Jason Andrew Park, a medical student at Boston University School of Medicine, and Joshua D. Safer, MD, then an associate professor and medical director of the Center for Transgender Medicine and Surgery at Boston Medical Center, explored the effects of offering fourth-year medical students clinical exposure to transgender patients as an elective in addition to the mandatory training they already receive in transgender medicine. Among 20 participants, the proportion of students who reported a “high” comfort level in treating transgender patients increased from 45% to 80%. The proportion who reported “high” knowledge regarding management of transgender patients rose from 0% to 85%. The results were presented at this year’s annual meeting of the Endocrine Society.
Keuroghlian said Harvard Medical School has begun offering elective courses for fourth-year medical students on providing care for patients with diverse gender identities and is now working to incorporate this content into the required curriculum. According to Sevelius, few medical schools routinely teach students about transgender health care. Even at UCSF, transgender heath is offered as an elective, leaving students who opt not to take the course without some baseline skills to treat transgender patients.
“There’s a lot of medical mistrust among transgender people because of previous negative experiences with health care,” Sevelius said. “It’s really difficult for trans people to set up care with a new provider unless they have support from the community or they know other people who are going to that provider, or if a clinic has specific hours set aside for trans patients — that’s something that really indicates a welcoming environment. It’s really daunting to walk into an unknown environment for somebody who has had past trauma around health care-seeking.”
ID clinicians routinely have contact with underserved populations, but Marrazzo said that does not necessarily mean they are more sensitive to the needs of transgender patients.
“Insofar as they are familiar with our HIV-infected population, yes. But that is a subset of ID providers,” she said. “I think saying all ID clinicians are more sensitive may be overstating the case.”
Impediments to HIV prevention
In a 2013 study, Poteat and colleagues estimated the prevalence of HIV among transgender women to be around 19% worldwide, and it reached almost 22% in five high-income countries. According to the CDC, half of all transgender patients who are diagnosed with HIV in the U.S. are black, and around half live in the South.
“Black transgender women are the most socioeconomically marginalized group of transgender people,” Sevelius said. “They experience the most violence, the most discrimination and the most trauma of any subgroup of transgender people — all of the things [that] tend to also be part of a higher risk sexual network.”
The CDC lists many risk factors for HIV among transgender people, including multiple sexual partners, anal or vaginal sex without using condoms or PrEP, injecting hormones or drugs with shared syringes and other drug paraphernalia, commercial sex work, mental health issues, incarceration, homelessness, unemployment, high levels of substance abuse compared with the general population, violence and lack of family support.
“The way that HIV is transmitted is pretty much the same for all humans. The things that put people at risk tend to be a little further away from the actual moment where the virus goes from one person to the other,” Poteat said. “For transgender women, there’s a great deal of employment discrimination and difficulty finishing school due to bullying and things like that. People tend to have limited employment options and higher rates of sex work. That’s one of the reasons people have a higher number of sex partners and less ability to negotiate condom use.”
HIV prevention among transgender people is hindered by low rates of HIV testing and limited access to PrEP, experts said. In fact, findings published last year in MMWR showed that transgender patients may be tested for HIV at just over half the rate of gay and bisexual men. In the study, Marc A. Pitasi, MPH, epidemiologist in the CDC’s National Center for HIV, Viral Hepatitis, STD and TB Prevention, and colleagues conducted telephone surveys in 27 states and Guam and found that 35.6% of transgender women and 31.6% of transgender men reported ever being tested for HIV, and just around 10% said they were tested in the previous year. These were roughly the same rates reported by cisgender heterosexuals but much lower than cisgender gay and bisexual men, 61.8% of whom had reported ever being tested, including 21.6% who said they had been tested in the previous year.
In 2016, the Center of Excellence for Transgender Health established April 18 as National Transgender HIV Testing Day to raise awareness of the importance of routine HIV testing and to increase focus on HIV prevention and treatment among transgender patients. But access to testing has been challenging.
“There are just not as many spaces for trans people to go and get tested,” Sevelius said.
Home-based HIV testing may be a feasible option to raise rates. In a 2016 study published in AIDS and Behavior, Sevelius and colleagues reported that transgender women showed an interest in HIV self-testing because it eliminated the need to go to an unknown clinic. Among 50 HIV-negative adult transgender women in San Francisco, 68% reported preferring the self-test to clinic-based testing.
“It seems likely that HIV home tests could be considered for people who don’t feel comfortable accessing testing in a clinical environment that doesn’t have trans-specific competency,” Sevelius said. “But there also needs to be a focus on linking patients who test positive to support services.”
PrEP has been shown to prevent infection in high-risk patients by up to 92% when it is taken consistently, according to the CDC. But the proportion of transgender patients who are taking it is estimated to be low, and black transgender women are thought to have the lowest access of all. In San Francisco, where uptake has been high among young, white gay men, few transgender women take PrEP and many do not even know it exists, Sevelius said.
“I think that’s different than for trans men who have sex with men, or gay-identified trans men, because they tend to be more connected to the gay men sexual network and more informed about PrEP,” she said. “PrEP has been so well-marketed to gay men, it’s really perceived as a gay men’s prevention tool, and many transgender women feel like, ‘That’s not for me. I’m not a gay man, so I’m not sure that that applies to me,’ even if they know about it.”
However, PrEP awareness varies. Among 201 black and Latina transgender women in Baltimore and Washington who were recruited by Poteat and colleagues for a study conducted between April 2016 and May 2017, 86% had heard of PrEP and most knew where they could get it. Among those who self-reported being either HIV negative or not knowing their HIV status, 78% said they were willing to take it, but less than 18% of those respondents had ever done so.
This is another area where educating clinicians could benefit transgender patients, according to experts. For a new study, Sevelius and colleagues have begun interviewing health care providers about speaking to transgender patients about PrEP and have discovered several impediments.
“Some of the things that have come up are things around feeling uncomfortable talking about sexuality with trans women because they’re worried about offending someone with how they talk about sex,” Sevelius said. “They’re worried about trans women not being able to adhere to PrEP. They don’t have the answers when their trans patients ask them if PrEP interacts with hormones, so they tend to just not bring it up.”
Gaps in research
Rates of other STIs are thought to be high among transgender patients, and experts are concerned about transgender patients’ exposure to hepatitis C virus through injectable hormones for gender affirmation. However, research in these areas is lacking and data are sparse.
“Part of the challenge is that there’s very little information about many of the infectious diseases that are tracked in this country. We don’t track by gender identity,” Poteat said.
There are other gaps in research that threaten patient care. Experts agree that there needs to be more of an effort to study the sexual health of transgender men to identify their risk factors for HIV and other infections. For example, it is believed that a longer period is required for PrEP efficacy for vaginal sex compared with anal sex, but it is unclear what that means for transgender men who have a vagina and are on testosterone.
“What makes it different?” Poteat asked. “Is it the tissue itself? Is it the hormonal milieu? How long would they have to take PrEP to be protected if they’re having vaginal and anal sex? And if they’re only having anal sex, are they protected within 7 days, like we say for other populations? I think those types of questions need to be answered.”
Other areas of research remain largely unexplored, including the susceptibility to HIV of transgender women with surgically constructed vaginas, or neovaginas. Because differences in tissue can affect the time it takes PrEP to protect against HIV, patients are advised to wait 1 week for protection through anal sex, and around 3 weeks for vaginal protection.
“Because of that longer period for building up protection in the vagina, it’s a big question mark about what the indication would be for a neovagina,” Sevelius said. “We just don’t know — and there’s no funding to do that kind of research.”
A cross-sectional study presented in March at the Conference on Retroviruses and Opportunistic Infections showed that neovaginas have a different cellular composition than vaginas of cisgender women, but the limited data came from a small sample of eight patients in one Thai city. Specifically, Sandhya Vasan, MD, researcher in the department of retrovirology at the Armed Forces Research Institute of Medical Sciences in Bangkok, and colleagues found that there were higher levels of CD4-positive T cells in cisgender women and higher levels of CD8-positive T cells in neovaginas.
The study included just 10 men who have sex with men, 10 cisgender women, and eight transgender women who had gender reassignment surgery, including seven who reported neovaginal sex. Vasan and colleagues said other potential biologic risks for HIV transmission in transgender women should be explored, including hormone therapy and injectable fillers. One participant in their study, a transgender woman, received injectable hip fillers containing silicone that migrated to her lymph nodes and caused structural damage, indicating that fillers may increase inflammatory risk in some patients, Vasan said.
“We intend for this to be an initial study followed up with a larger study,” she told Infectious Disease News.
Still other areas of research need exploring. Sevelius said more needs to be known about the sexual health of gender nonbinary people — a growing population. Poteat and others have begun studying how estrogens that are used for gender affirmation interact with HIV medication. Sevelius said there is little reason to believe that hormones would interact with PrEP, but a lack of data can make providers reticent to advise patients one way or the other. Experts indicated that increased attention on these issues could lead to more research.
“I think we’ll see more data as time goes on,” Poteat said. “I’m feeling optimistic.” – by Gerard Gallagher
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- CDC. HIV among transgender people. https://www.cdc.gov/hiv/group/gender/transgender/index.html. Accessed March 20, 2018.
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- Center of Excellence for Transgender Health. National transgender HIV testing day (NTHTD): April 18. http://transhealth.ucsf.edu/trans?page=ev-nthtd. Accessed March 20, 2018.
- Lippman SA, et al. AIDS Behav. 2016;doi:10.1007/s10461-015-1236-2.
- Park JA, Safer JD. Clinical exposures to transgender medicine improves students’ preparedness above levels seen with cultural competency training and didactic teaching alone: crucial addition to the Boston University model for teaching transgender health care. Presented at: ENDO 2018; March 17-20; Chicago.
- Pitasi MA, et al. MMWR Morb Mortal Wkly Rep. 2017;doi:10.15585/mmwr.mm6633a3.
- Poteat T, et al. Abstract 1045. Presented at: Conference on Retroviruses and Opportunistic Infections; March 4-7, 2018; Boston.
- Schuetz A, et al. Abstract 204. Presented at: Conference on Retroviruses and Opportunistic Infections; March 4-7, 2018; Boston.
- For more information:
- Alex S. Keuroghlian, MD, MPH, can be reached at email@example.com.
- Jeanne M. Marrazzo, MD, MPH, can be reached at firstname.lastname@example.org.
- Tonia C. Poteat, PhD, MPH, can be reached at email@example.com.
- Jae M. Sevelius, PhD, can be reached at firstname.lastname@example.org.
- Sandhya Vasan, MD, can be reached at email@example.com.
Disclosures: Poteat reports research funding from Gilead Sciences and ViiV Healthcare paid to Johns Hopkins. Keuroghlian, Marrazzo, Sevelius and Vasan report no relevant financial disclosures.