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For LGBTQ Patients, High-Quality Care In A Welcoming Environment

2020; Project HOPE; Volume: 39; Issue: 5 Linguagem: Inglês

10.1377/hlthaff.2020.00345

2694-233X

David Tüller,

Reproductive Health and Technologies

Leading To HealthHealth Equity Health AffairsVol. 39, No. 5: Substance Use, Surprise Billing & More For LGBTQ Patients, High-Quality Care In A Welcoming EnvironmentDavid Tuller AffiliationsThis article is part of a series on transforming health systems published with support from The Robert Wood Johnson Foundation. This is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt, and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. David Tuller ([email protected]) is a senior fellow in public health and journalism at the Center for Global Public Health at the University of California Berkeley.PUBLISHED:May 2020Open Accesshttps://doi.org/10.1377/hlthaff.2020.00345AboutSectionsView PDFPermissions ShareShare onFacebookTwitterLinked InRedditEmail ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsDownload Exhibits AbstractOutside major urban centers, LGBTQ patients often travel hours to find trusted clinicians. One Iowa clinic has created a safe space just down the road.TOPICSClinicsHealth care providersAccess to careNursesCommunity health centersCancer patientsPatient safetyPatient testingHealth disparitiesHelping: Kyle Christiason, a family practice physician, helped open the UnityPoint Health Prairie Parkway LGBTQ clinic in January 2018. His efforts have had ripple effects beyond the provision of health care in the Cedar Falls–Waterloo region of Iowa where it is based.Photograph by Greg BrownSix years ago, when Kyle and Jennifer Christiason’s firstborn child was in ninth grade, he came out to them as a transgender male. Kyle and Jennifer quickly realized that they did not know where to turn for medical guidance in their rural Iowa community. Although Kyle was a family practice physician and Jennifer a nurse at UnityPoint Health, a regional medical provider, they had little personal or professional experience in dealing with the health care needs of people with nontraditional gender and sexual identities.As they reached out to colleagues and conducted research, Kyle and Jennifer learned how few options were available for transgender patients like their son, Ben, in the vicinity of their home in Cedar Falls, a town of around 40,000 in the northeastern section of Iowa. “We spent probably a year seeking help,” recalled Kyle, a broad-shouldered man of fifty, with open features and an empathetic presence. “My physician colleagues couldn’t direct me. My insurance sent me to a sex therapist who had never had a trans patient. In other words, nobody knew what to do. I didn’t know what to do as a physician, or as a parent, to support my child.”When Ben was in tenth grade, Kyle and Jennifer took him to a sexual health center at the University of Minnesota—a three-and-a-half-hour drive away. They trusted the clinicians at the center, who seemed to understand not only Ben’s health needs but his parents’ own challenges and confusion. “A provider there said, ‘Your questions are all normal, we hear that all the time,’” Kyle said. That reassurance, he added, was “the most meaningful thing anyone has ever said to me as a helpless, scared parent.” Under the care of the Minnesota team, Ben began taking testosterone; he is now a thriving twenty-two-year-old college student.Although Kyle and Jennifer were ultimately successful in finding appropriate care for Ben, they recognized that many other lesbian, gay, bisexual, transgender, and queer (LGBTQ) people and their families in their region must be facing similar questions. Given their own family’s experience, they recognized that transgender patients in particular often could not find a health care provider who understood their issues. For example, providers rarely if ever asked what gender pronouns patients preferred. Spurred by this awareness, the couple spearheaded an effort to fill the gap.In January 2018, after a couple of years of thinking, research, and planning, the UnityPoint Health Prairie Parkway LGBTQ clinic opened its doors. UnityPoint’s Prairie Parkway facility is an ambulatory medical center offering primary and some specialty care in Cedar Falls. In the first year the new clinic attracted more than 150 patients—a large number for a modest-size market. The clinic currently functions on two Wednesday evenings a month, and about 70 percent of the patients are transgender. Last year the ABIM Foundation cited the clinic as one of eight innovative efforts around the country that “have helped build or rebuild trust in various aspects of the health care system.”1That description rings true to clinic patients such as Albie Nicol, a twenty-year-old transgender male who is studying religion and English at the University of Northern Iowa, also located in Cedar Falls. He made his first appointment to visit the clinic shortly after it opened. “From the minute I walked in the door I felt valued,” he said. “A nurse came out and said ‘Hi,’ and she mentioned her pronouns and [said], ‘I was wondering what pronouns I can use to refer to you.’ It was so shocking to me. I felt safe, I felt important, and I felt like I was a person rather than just another patient.”A History Of Limited AccessPublic health experts have long recognized that people with nontraditional sexual and gender identities experience significant health disparities. “Compared to their heterosexual counterparts, LGBTQ patients have higher rates of anal cancer, asthma, cardiovascular disease, obesity, substance abuse, cigarette smoking, and suicide,” noted a 2019 article on LGBTQ-related bias in BMC Medical Education.2 “Sexual minority women report fewer lifetime Pap tests, transgender youth have less access to health care, and LGBTQ individuals are more likely to delay or avoid necessary medical care compared to heterosexual individuals.”Along with such disparities, LGBTQ people have long confronted systemic discrimination in health care settings. Many report being uncomfortable discussing health and sexual concerns openly with medical providers and feeling dismissed or ridiculed when they do. In New York, San Francisco, Chicago, and other large cities, members of these communities have for years been able to access health care in specialized clinics—a trend that began in the 1970s and gained ground with the AIDS epidemic in the following decade.By the mid-1980s, according to a 2017 historical overview published in PLoS One, “the National Gay Task Force listed over 100 clinics and medical service programs and over 300 counseling and mental health programs, with services ranging from testing and treatment for sexually transmitted infection to counseling and care for substance users, that were openly LGBT friendly and accepting.”3 These days, many major research universities and teaching hospitals cater to sexual and gender minorities at specialized medical clinics.That means LGBTQ patients who live in or near major metropolitan areas often have multiple options for seeking culturally sensitive and competent providers. One of the oldest such venues, Boston’s Fenway Health, was founded in 1971 and currently provides medical services to thousands of LGBTQ patients. Kenneth Mayer, cochair of the Fenway Institute, the center’s research arm, said that patients in many other parts of the country face a much different environment.“In rural areas where people have fewer choices, there’s a greater need,” Mayer said. “Clinicians aren’t really encouraged to talk about sex or sexuality. It’s going to be hit or miss, where some communities will still be very traditional and nonaffirming and nonsupportive. But if there’s a local champion, there can be overnight change.”‘Meeting A Need’UnityPoint Health is a large regional health care system—a network of dozens of hospitals and scores of medical clinics and other facilities in Iowa, western Illinois, and southern Wisconsin, with around 35,000 employees. The UnityPoint system provides health care to about one in three Iowa residents. In addition to the Prairie Parkway medical center and other facilities, the local area is served by UnityPoint’s Allen Hospital, in Waterloo, which is next door to Cedar Falls and also has around 40,000 residents.Pam Delagardelle, president and CEO of UnityPoint Health’s Waterloo-area operations, said she had no hesitation once Kyle and Jennifer approached her about exploring how to expand services for LGBTQ patients at Prairie Parkway, which also falls in her administrative domain. She has known the Christiasons a long time and was aware of the family’s efforts to find the right health care for Ben. So their interest in addressing the problem resonated with her, she recalled. “When they came forward with this idea and discussed the gap in care for this particular group of people, it was a quick answer: yes, we need to do something about that,” she said.Kyle and Jennifer contacted potential allies in the community and held focus groups with LGBTQ patients to learn more about their experiences and interactions with the health care system. Many patients reported feeling disrespected and dismissed, Kyle said. Although the University of Iowa in Iowa City, eighty-two miles from Waterloo, had opened a sexual health clinic serving the LGBTQ community a few years earlier, demand was so great that patients reported having to wait more than a year for an appointment. “Except for a couple of solo practitioners, that was the only place to get culturally competent care in Iowa,” Kyle said. This information-gathering process, he added, “led to the vision to create a dedicated, physical space, with culturally competent or sensitive team members.”A key ally from outside UnityHealth was Emily Harsch, the LGBTQ student services coordinator at the University of Northern Iowa. Around the time Kyle and Jennifer were considering how to proceed, Harsch was struggling to find local options for students seeking medical care. “I was spending a great deal of time tracking down providers for my students, people I could trust to have my students go to for mental health care and physical health care,” Harsch said. “My goal was that there should be at least one provider I could send people to, at least one person I could trust.”Harsch helped UnityPoint develop sensitivity training for staff members at an existing women’s clinic, which was already seeing some LGBTQ patients, and later for those slated to work at the planned new venue. “It’s like LGBTQ 101, and skill building, and how to be an ally,” said Harsch, twenty-six, who identifies as queer and has been working at the office since she was a student. “We did a lot of work with them [UnityPoint] to make sure the core staff was really trained in LGBTQ competence. What does it mean to be gay versus bisexual? What does it mean if they use ‘they’ pronouns?”The decision to open the LGBTQ clinic triggered some controversy among more conservative members of the community. In particular, Delagardelle said, she received complaints from some local pastors who objected to its presence in the area. “A handful of people reached out and expressed their displeasure,” she said. “My response is that we are here to improve the health of the community we serve, and this absolutely fits with our mission.”The clinic is not just a feel-good project; it is now busy enough to be self-sustaining.But the clinic is not just a feel-good project. Although it required an initial investment, Kyle said, it is now busy enough to be self-sustaining. And it has brought in new customers. According to Delagardelle, a third of those who attended the clinic in the first year were not already UnityPoint patients. “The demand is reassuring in that we are meeting a need,” she said. “We didn’t realize how many people we would attract to our system.”The opening of the clinic has had ripple effects beyond the provision of health care in the Cedar Falls–Waterloo area. Last April UnityPoint opened a second LGBTQ clinic in its Des Moines medical center, and discussions are under way about a third in Peoria, Illinois. At the moment, Kyle and colleagues are developing a sensitivity training module for other members of the UnityPoint workforce based on what they already provide to clinic staff—an opportunity that reflects his and Jennifer’s broader hopes. “This has gotten enough traction that we’re now getting asked to prepare some kind of education that will be systemwide,” he said. “We just feel that a central part of our role is to create a space for community dialogue where we can just normalize this conversation.”‘The Most Important Thing’On a cold Wednesday evening in mid-December, more than a dozen patients arrived for scheduled appointments at the LGBTQ clinic, which is located on the second floor of the Prairie Parkway medical center. Most were transgender, perhaps because members of this population can face even more discrimination in health care than other gender and sexual minorities. “I think there’s a little better medical and cultural competence for lesbian and gay care than for trans care,” Kyle said.One attendee that evening, a fifty-two-year-old patient sporting a heart-shaped pendant and an array of bracelets and rings, said that she had started hormone replacement therapy only the previous May. Assigned male at birth, she spent more than twenty years in the military, serving multiple tours in Iraq as a tank crew member. After retiring a few years ago, she decided that it was time to grapple with her gender identity. She has a liver condition and was worried about possible negative effects from hormone treatment. But she was fearful of discussing the issue with her doctors at the Department of Veterans Affairs (VA).“I didn’t want to just blurt it out to the VA, ‘By the way, I’m trans,’” she said. “I didn’t know how I was going to be treated, what their attitude was.” Her therapist referred her to the UnityPoint clinic, where she learned that she could take hormones despite her liver condition.The first time she attended the clinic, she recalled, she was dressed “like a guy” in jeans and a T-shirt. For subsequent appointments, she added, “I’ve been presenting as my authentic self.” At that point, only a couple of close friends knew about her transition. She was planning to tell her mother and brother the following week, and she had no idea how they would react.Another patient, a soft-spoken transgender boy of sixteen, said that he had been dissatisfied with his health care before coming to the clinic. “My previous doctor disregarded the situation and said it would probably go away in time,” he said. “I was disappointed she wasn’t taking me seriously.”He had been coming to the Prairie Parkway clinic for a year and a half. His mother, who accompanied him, said that she had learned about the clinic through a news article. “I thought, ‘Perfect timing!’” she said of her reaction upon reading the article. “The clinic has been wonderful. Otherwise I was going to have to open up the phone book and call doctors and see if they’d be willing to work with him.”A transgender girl of sixteen also came with her mother. They had previously checked out the University of Iowa clinic but were discouraged by the long wait for appointments. “Now that this is open, kids can get in quickly,” the mother said.The girl, with long brown hair and a mischievous smile, spoke in a self-confident, nonchalant manner. She said she had understood who she was by the time she was seven and had wanted to explain to her mom and dad. “I would tell them [her parents] on and off that I think I’m a girl, and then I’d say, ‘No, no,’” she said. “I was trying to come out, but I would back off.” She is currently on puberty-blocking drugs and estrogen.Her mother, a psychotherapist who had worked with other kids with nontraditional identities, said that her child had always been “cute as a bug’s ear” but troubled. “You could just tell there was inner turmoil,” she said. “Now I’ve got this happy kid I can do stuff with [who] is happy in her own skin, and I think that’s the most important thing. Her dad and I support her 100 percent.”Brent Buhr, one of the doctors working at Prairie Parkway that evening, was a founder of the region’s annual LGBTQ Pride event. Unlike most of those staffing the clinic, he is not a UnityPoint employee: He works at another health center in the area. He said that the opening of the clinic represented a significant step in making the community more hospitable to residents who might otherwise have trouble finding acceptable care. Many LGBTQ patients outside of major cities have heightened anxieties about possible breaches of medical confidentiality, Buhr said, so building trust through respectful treatment has been key to the clinic’s success. “People are very concerned about privacy,” he said. “In a smaller community, they know each other. I think those issues are a little more intense in a smaller community.”Beyond Health CareOne afternoon the week before Christmas, more than a dozen local religious leaders and LGBTQ advocates, including the Christiasons and Albie Nicol, the student and clinic patient, gathered in a large but cozy meeting space at the United Church of Christ in Cedar Falls. The group meets regularly to share reflections and mutual counsel on issues related to the LGBTQ community. As those present settled around a couple of tables, Kyle recalled how providers at the clinic became increasingly aware that health care was only one domain in which the LGBTQ population confronted societal obstacles.“We found that a certain subset of our patients articulated a persistent barrier to their whole wellness,” he said. “The institution of their faith had also rejected them, and we didn’t know what to do about that.” An ongoing series of get-togethers between clergy and advocates arose out of an effort to address these spiritual needs. Johnny Janssen, associate pastor of Cedar Heights Community Presbyterian Church, explained why he felt it was important to attend. “I need all the reminders and lessons I can get on how to be a better ally as a white, privileged male,” said Janssen, who smiled broadly while wearing an impressive set of antlers on his head.As members of the group consumed bowls of chili or nibbled on cookies, pretzels, and other snacks, they discussed the approaching holidays and how both churches and families could create a more welcoming environment for LGBTQ people. Jennifer suggested that religious leaders consider not only their own attitudes but also whether those of their spiritual traditions are welcoming. “Can they be leaders?” she asked about LGBTQ congregants. “Can they receive the sacraments?”The group also discussed the challenges confronting parents when their children come out, especially when the announcement is accompanied by a request to use different gender pronouns or names. Nicol explained that transgender children often have as much difficulty empathizing with their parents’ perspectives as the other way around. “There has to be some give and take,” he said. “It’s hard to understand why your parent is grieving when you’re trying to celebrate this new life that you’re creating.” It can take parents time to get used to these changes, Jennifer added. “If a parent says, ‘I just keep screwing up,’ just remind them that they just need to say ‘I’m sorry’ when they make that mistake and move on,” she said.The presence of the UnityPoint clinic represents a public statement of support for people who are different.Scott Lothe, the pastor at St. Timothy’s United Methodist Church, recalled previous complaints from some religious conservatives about the gay-straight alliance at a local middle school. Given that history, he said, the presence of the UnityPoint clinic represented a public statement of support for people who are different. “Having the clinic here as a centerpiece of the community, saying we’re going to take the needs of this community seriously, that means a lot,” he said. “Other groups—schools, churches, community organizations—take the lead from that.”NOTES1 ABIM Foundation. Eight organizations named winners of Trust Practice Challenge [Internet]. Philadelphia (PA): The Foundation; 2019 [cited 2020 Apr 6]. Available from: https://abimfoundation.org/what-we-do/rebuilding-trust-in-health-care/trust-practice-challenge Google Scholar 2 Morris M, Cooper RL, Ramesh A, Tabatabai M, Arcury TA, Shinn Met al. Training to reduce LGBTQ-related bias among medical, nursing, and dental students and providers: a systematic review. BMC Med Educ. 2019;19(1):325. Crossref, Medline, Google Scholar 3 Martos AJ, Wilson PA, Meyer IH. Lesbian, gay, bisexual, and transgender (LGBT) health services in the United States: origins, evolution, and contemporary landscape. PLoS One. 2017;12(7):e0180544. Crossref, Medline, Google Scholar Loading Comments... Please enable JavaScript to view the comments powered by Disqus. DetailsExhibitsReferencesRelated Article Metrics History Published online 4 May 2020 InformationThis open access article is distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license.PDF download