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Embracing the Rainbow
At Johns Hopkins and across the nation, initiatives are underway to help physicians better meet the health care needs of today’s lesbian, gay, bisexual and transgender patients. Some say such efforts are long overdue.
Illustration by Francesco Bongiorni | Photography by Harry Giglio
“I was never taught how to ask these questions, so I can understand how resident physicians don’t know how to broach these topics.”
Only four years ago, our country still sanctioned ‘don’t ask, don’t tell.’ Now we’re asking people in health care to ask and to tell.”
Every day, the adolescent clinic at The Johns Hopkins Hospital teaches medical residents something new about their perception of the world—and how they may need to adjust it, says Errol Fields '09.
The assistant professor in pediatrics is there to help young doctors take first steps into the complicated realm of sexual orientation and gender identity. The journey often begins with choosing the proper words.
“When you’re asking a 16-year-old about his sexual history, you don’t say: ‘Do you have a girlfriend?’” Fields explains. “You say, ‘Do you have a romantic partner? Are you dating someone or seeing someone? Do you prefer boys, girls or both?’”
One resident counseled a young woman on her sexual health but neglected to speak about contraception. When Fields asked why, she said the patient would not need birth control because she was a lesbian.
It was time for a conversation.
“Bisexual and lesbian adolescent females are at much higher risk for unplanned pregnancy because developing sexual identity doesn’t necessarily parallel sexual behavior,” Fields points out. “I make it very clear that sexual identity is not the same as sexual behavior or sexual attraction. These are fluid paradigms, especially in adolescence. Sometimes they overlap, and sometimes they don’t.”
Many physicians and care providers are discovering on the job that their medical knowledge and communication skills are not sufficient to treat lesbian, gay, bisexual and transgender patients appropriately. They are stumbling over assumptions they didn’t realize they had. The situation reflects a 2005 survey by the Association of American Medical Colleges (AAMC) that showed one-half of all medical students felt inadequately prepared to care for LGBT patients.
Now medical colleges across the nation will find more ways to work LGBT-related health education into the curriculum, thanks to a landmark AAMC report published last fall. The 280-page publication also provides the first-ever guidelines created to train physicians to care for patients who are gender nonconforming and for those born with differences of sex development. The report is already one of the AAMC’s most downloaded publications and has generated hundreds of tweets and a Facebook reach surpassing 500,000 users.
“Our goal is that the knowledge in this report will not be viewed as an isolated piece of important information but rather as integral to being a good physician,” says Marc Nivet, chief diversity officer for the AAMC. “It will help lead to practicing medicine in an empathetic, humanistic way. It’s intended to empower faculty members, to allow them to become the innovators with teaching tools we’ve developed.”
Using the AAMC report as a guide, a group of faculty members and students from the Johns Hopkins University School of Medicine is considering the best ways to weave LGBT health education through the Genes to Society curriculum.
Presently, such material is delivered in presentations on health disparities and cross-cultural communication. Additional content is included in other parts of the curriculum, such as reproductive health, the medicine clerkship and infectious disease. “While these are common places to incorporate LBGT content, the challenge—and the opportunity—is to integrate it into other areas to understand the whole patient from their genes to the context in which they live their lives,” says Daniel Teraguchi, assistant dean for student affairs. The group is working on incorporating LGBT content into studies of organ systems as well as devising team-based learning exercises and scenarios with standardized patients—actors who present as LGBT.
“Using standard medical cases, such as treating someone with high blood pressure, will avoid reinforcing stereotypes that LGBT content is only relevant when discussing HIV or sexual behavior,” Teraguchi says. “It’s important to teach cultural competency so that physicians establish trust and rapport with any patient, and LGBT patients provide an excellent opportunity to do this.”
The AAMC report presents 30 competencies that physicians should master for proficiency in LGBT health. History taking, for instance, would include such questions as: “Tell me about your sexuality,” “Tell me about your gender identity” and “What pronouns would you like me to use?” Care options would include knowing about elective and nonelective hormone therapies for transgender patients. Students would also learn to navigate issues such as insurance limitations, lack of partner benefits, visitation and nondiscrimination policies.
The need is clear: Many LGBT people avoid seeking health care because of their negative personal encounters with health care providers and their staff. Studies show that due to that discomfort and a greater inability to pay for health insurance, LGBT people tend to have poorer health than the general heterosexual population. They are more apt to have depression, anxiety, and higher rates of alcohol and substance abuse—some of it linked to incidents of being bullied and assaulted at an early age. They also have higher rates of HIV and hepatitis.
Over the past few years, the Joint Commission, the Institute of Medicine, the American Medical Association and other major policy-setting institutions have pledged to end the health disparities that are common in treating LGBT people. Last year, for instance, the Obama administration ended a ban on Medicare coverage for gender-affirming surgery, opening up options for similar coverage from private insurance plans.
Eliminating unequal treatment depends upon identifying LGBT patients and tracking the care they receive to determine instances of discrimination.
To that end, the EQUALITY Study, a three-year, multisite research collaboration between Johns Hopkins and Harvard, is seeking the best way to collect health information about the sexual orientation and gender identity of all patients who come to the emergency department—a health care setting with a truly diverse patient population.
Gathering information on sexual orientation comes hard to a nation steeped in “don’t ask, don’t tell,” the law that barred gays from serving in the U.S. military if they acknowledged their sexual orientation. Although that policy ended in 2011, the belief that equal treatment depends on concealing sexual orientation remains alive.
“Only four years ago, our country still sanctioned ‘don’t ask, don’t tell.’ Now we’re asking people in health care to ask and to tell,” says Brandyn Lau, a clinical informatician at the school of medicine and site principal investigator of the study.
Lau and surgery resident Lisa Kodadek are members of a team investigating the best way to collect data on sexual orientation and gender identity in a routine, standardized manner. A checkbox on a form, like ones for gender, age and race? A conversation with the registrar? A one-on-one with a physician?
“As a health care provider myself, I was never taught how to ask these questions, so I can understand how resident physicians don’t know how to broach these topics,” Kodadek says. “I would be worried that patients would want to know: ‘How is this really relevant to my care?’
“When it becomes clear that everyone is giving this information, it will help normalize this. People will see that recognizing sexual orientation and gender identity is a standard part of the treatment process.”
The EQUALITY Study—funded by a $1.4 million grant from the Patient-Centered Outcomes Research Institute, a nonprofit organization established by the Affordable Care Act—will use information gathered from in-depth interviewing with actual patients and emergency department providers from Baltimore as well as from a national survey of people who identify as heterosexual and LGBT. Once a consensus on a method for collecting sexual orientation and gender identity is reached, researchers will implement it in a pilot study in the emergency departments at The Johns Hopkins Hospital and Howard County General Hospital.
“This project has the opportunity to really set the policy for collecting this information from patients across the country,” Lau says.
The need for a systematic way to ask such questions is obvious to curriculum reformers.
Just ask Jawara Allen, a Johns Hopkins M.D.-Ph.D. student who works with LGBT groups at the school of public health and the school of medicine. Last fall, when Allen went to the university’s health services for his annual health exam, he had told only his family and close friends that he was gay. Now he would be sharing this information for the first time with a stranger.
The physician asked why he had come, checked a few boxes for sexually transmitted disease tests on a form and told him to go to the outpatient center. Assuming that he was heterosexual, she never asked about his sexual history.
“I had to make a decision to tell the physician that I was gay or to let things slide,” Allen recounts in a YouTube video recorded at a World AIDS Day event at Johns Hopkins. “After what seemed like an eternity—but was only about five seconds—I told her. It’s an experience I will never forget.”
Carl Streed Jr., an internal medicine resident at Johns Hopkins Bayview Medical Center, decided to go into medicine partly because of insensitive treatment he received as an undergraduate at the University of Chicago. Feeling ill with flu-like symptoms and swollen lymph nodes, he told the doctor about his fever, his final exams and about being stressed out. Then he mentioned his boyfriend.
“She was warm and fine before, and then things got very got cold and brusque,” he recalls. “As soon as I revealed myself as gay, she said, ‘You really have to get an HIV test.’ I wasn’t out to my parents at that time, but I was on their health insurance, so I couldn’t get one that way. I said, ‘What else can I do?’ She said, ‘I don’t know.’ She left the room and never came back.
“I was furious. I avoided doctors for a long time after that. I had to go to my hometown county health department to find free HIV testing, doing it secretly, not telling my parents … I’d say my motivation for becoming a doctor was that bad experience. I’d never want anyone to feel that way again.”
Last year, Streed won an Excellence in Medicine Award from the American Medical Association for advocating the inclusion of LGBT health issues in the curricula of the schools of medicine, public health and nursing at Johns Hopkins, and for his work with the Gertrude Stein Society, the organization for LGBT students at those schools.
Streed also worked on the effort to achieve transgender equity in the health insurance of Johns Hopkins students. Until last year, the student health plan did not cover “transsexualism, gender dysphoria, or sexual reassignment or change, including medication, implants, hormone therapy, surgery, or medical or psychiatric treatment.”
“I feel we’re a little stuck in the one-size-fits-all health care model,” he says. “We were behind a lot of our peer institutions with that specific clause that excluded everything trans-specific.”
According to Demere Woolway, director of LGBTQ Life on the Homewood campus, the next step is introducing similar changes to insurance coverage for Johns Hopkins faculty and staff members.
Within the LGBT population, transgender people are most likely to experience health care discrimination, ranging from outright harassment to denial of service, according to Lambda Legal, a national organization committed to achieving full recognition of the civil rights of LGBT people. They often avoid traditional health care settings, turning instead to organizations like Baltimore’s Chase Brexton Health Care, which helps them find providers who understand their needs and who will behave respectfully. Nate Sweeney, executive director of Chase Brexton’s LGBT Health Resource Center, says that many trans patients face the humiliation of being misidentified by the birth identities on their health insurance, despite their efforts to inform hospital providers and staff members. More knowledgeable medical providers, says Chase Brexton nurse practitioner Jill Crank, could have prevented the following situations that occurred in Baltimore last year:
A trans female was so severely depressed that her therapist took her to a local emergency department for possible admission. Although the staff was informed that the male birth identity on her insurance was no longer accurate and was given her correct name, she was repeatedly called by her birth name—a painful humiliation that caused her to leave the hospital against medical advice.
A trans male who had not had gender-affirming surgery was being treated at a local doctor’s office. While he agreed to allow students and interns to observe the physician take his medical history, he did not realize that they would also watch him receive a physical exam after he was undressed. His physician did not ask for his permission. The patient was mortified.
Chase Brexton is putting together a directory of LGBT-friendly physicians in Maryland. A similar project to identify physicians at Johns Hopkins is planned by The Network, an affinity group of LGBT employees and supporters within The Johns Hopkins Hospital and Health System. (A national list compiled by the Gay and Lesbian Medical Association includes six Johns Hopkins providers in the Baltimore area.)
During the past two years, the hospital has received recognition from the Human Rights Foundation Campaign as a Leader in LGBT Healthcare Equality. To earn this title, facilities must meet criteria that include nondiscrimination policies that specifically mention sexual orientation and gender identity, a guarantee for equal visitation for same-sex partners and parents, and LGBT health education for staff members.
“I think we provide good care, but I also think we could do a better job,” says Greg Rex, an information system manager and chair of The Network. He would like to begin offering awareness training to interested providers.
“We might give out rainbow badges that could be clipped to a lab coat or an ID badge to those who have completed training,” he says. “That way, patients could see people they might be able to talk to more openly.”
It’s time for patients who identify as LGBT to drop the burden of instructing physicians about how to treat them, says adolescent medicine expert Fields. He recalls a painful moment in his 20s when he and his then-partner went to a family therapist for counseling.
“At our first meeting, the therapist looked at us and said, ‘How can I help you?’
“I said, ‘We’re here for couples counseling.’
“He looked at us with a shocked expression. ‘You two are a couple?’ It took us a while in that first meeting to get past that point,” Fields says. “Patients shouldn’t have to do all the work when they come to you for help.”
As seen in the 2016 Biennial Report. Learn more.
More Than Medicine | Paula Neira (Nurse Educator)
Paula Neira, nurse educator, lawyer and, former naval officer, knows how to get things done. She is a passionate advocate in the mission to help care providers better meet the health care needs of today’s lesbian, gay, bisexual and transgender patients.
Terms Of Identity
LGBT: Stands for lesbian, gay, bisexual and transgender. GLBT may also be used. At times, a Q will be added for queer and/or questioning, an A for ally, an I for intersex and/or a TS for two-spirit.
Queer: Describes people who have a non-normative gender identity, sexual orientation or sexual anatomy—can include lesbians, gay men, bisexual people, transgender people and a host of other identities. Since sometimes used as a slur, it has a negative connotation for some LGBT people; nevertheless, others have reclaimed it and feel comfortable using it to describe themselves.
Transgender: Individuals who have gender identities that don’t align with the gender labels they were assigned at birth.
Transitioning: describes the process of adopting a different social gender identity. It may or may not include changes in physical expression, such as chest binding, genital tucking and modes of dress; medical and surgical interventions, such as cross-sex hormones and gender-affirming surgeries; and/or changes in legal documents.
Same-gender loving (SGL): How some African-Americans prefer to describe their sexual orientation, seeing “gay” and “lesbian” as primarily white terms. Same-sex loving is also in use.
Terms Of Acceptance
Ally: A person who supports and respects sexual diversity, acts accordingly to challenge homophobic and heterosexist remarks and behaviors, and is willing to explore and understand these forms of bias within him or herself. Often describes a heterosexual individual who is nevertheless part of the LGBT community.
Gender-affirming: Adjective used to refer to behaviors or interventions that affirm a transgender person’s gender identity (i.e., using cross-sex hormones for a transgender person may be called gender-affirming, as can the use of a correctly gendered pronoun).
Genderqueer: An umbrella category for people whose gender identities are something other than male or female. They may identify as having an overlap or indefinite lines between gender identity and sexual and romantic orientation, being two or more genders, being without a gender or moving between genders, or having a fluid gender identity.
Third gender: A term for those who belong to a category other than masculine or feminine. For example, Native American two-spirit people, hijira in India, kathoeys in Thailand and travestis in Brazil.
Ze/hir: Alternate pronouns that are gender neutral and preferred by some gender-variant people. Pronounced /zee/ and /here/, they replace “he”/”she” and “his”/”hers,” respectively.
Time for an Update
Difference of sex development (DSD): An emerging umbrella term to replace disorders of sex development. Refers to a wide variety of congenital conditions in which the development of chromosomal, gonadal and/or anatomical sex is atypical. DSD is replacing intersex and terms based on the root hermaphrodite.
Transsexual: Historically, a term used to refer to a person who has undergone what today are called gender-affirming interventions.
Sex change: Historically used to refer to when a transgender person undertook what are now called gender-affirming procedures.
Sources: AAMC 2014 report; LGBT Glossary of Johns Hopkins University;
UCLA LGBT Resource Center
A Population at Risk
Although acts of violence against LGBT people are now recognized as hate crimes, and many states recognize same-sex marriage and adoption in support of LGBT couples and families, health disparities persist. Studies cited by the U.S. Department of Health and Human Services show that:
- LGBT youth are two to three times more likely to attempt suicide and are more likely to be homeless.
- LGBT populations have the highest rates of tobacco, alcohol and other drug use.
- Gay and bisexual men and other men who have sex with men account for 64 percent of new cases of HIV, and they are at high risk for other sexually transmitted diseases.
- Gay and bisexual adult men and LGB young people are at significant increased risk for depression, anxiety, suicide attempts and substance abuse disorders.
- Lesbians are less likely to get preventive services for cancer and are more likely to be overweight or obese.
- Transgender individuals have a high prevalence of HIV/STDs, victimization, mental health issues and suicide.
- LGB adults have more than twice the risk for cardiovascular disease.
- Elderly LGBT individuals face additional barriers to health care because of isolation and a lack of social services and culturally competent providers.
“My motivation for becoming a doctor was that bad experience. I’d never want anyone to feel that way again.”
— Carl Streed Jr.