When Dr. Nicole Nisly met her first transgender patient, she didn’t know what to say. It’s common among healthcare providers. What name should I use? How should I refer to them? Should I ask? Her patient was a trans woman who had transitioned 10 years prior, and Nisly could feel the tension in the air. She was unprepared.
For trans people, that unease is instantly recognizable, and it comes in different flavors, ranging from well-intentioned curiosity to outright disgust. Around a third of trans people reported having at least one negative encounter with a healthcare provider because they were trans, including verbal harassment, refusal of treatment or having to teach their provider about trans people to receive care. A fourth said they didn’t see a doctor when needed because of fear of mistreatment, a survey by the National Center for Trans Equality (NCTE) found.
“We’ve had a few providers that just say, ‘We’re not going to take care of an LGBTQ patient,’” said Bridgette Hintermeister, a registered nurse at LGBTQ Clinic at the University of Iowa Hospitals and Clinics (UIHC). “That is one of the areas of discrimination that we see. They don’t feel comfortable, and they don’t want to learn.”
But Nisly resolved that next time, she’d be prepared. In November 2011, she went to a seminar led by a student group called TransCollaborations. The group, consisting of mostly gender nonconforming people, shared their stories about interacting with the healthcare community.
The students said that hospitals were often inhospitable towards them. Between the lack of properly trained physicians to staff that didn’t use the correct name or pronouns, to the general pricks and thorns of an unequipped healthcare system, they had to regularly out themselves just to find a clinic willing to help them.
While listening to their stories, Nisly, then the chief diversity officer for the University of Iowa, thought about her own discomfort and lack of training.
“There was a great opportunity to kind of really transform the healthcare based on their feedback, and I felt like we needed to do something,” she said.
At the seminar, she met Dr. Katie Imborek, who was finishing her residency at UI. Imborek had founded a medical student LGBTQ group. Together they began work on what eventually became the LGBTQ Clinic.
Beginning as a one-night-a-week service, the LGBTQ Clinic now serves between 13,000 and 15,000 people, around 70 percent of which are transgender or gender nonconforming patients, Nisly estimated.
The clinic provides treatment for chronic diseases including depression and anxiety, contraceptives, HIV testing and prevention, immunizations, family medicine, internal medicine, obstetrics and gynecology, urology, dermatology, urgent care and sexually transmitted infection (STI) testing and treatment.
For trans patients specifically, the clinic offers hormone replacement therapy (HRT), laser hair removal, physical therapy, social work, speech therapy and gender-affirming surgeries. Those include bottom surgeries like zero- or full-depth vaginoplasty (the construction or repair of a vagina), orchiectomy (removal of testicles), hysterectomy (removal of the uterus), oophorectomy (removal of ovaries); top surgeries, such as breast augmentation or masculine chest reconstruction; and other surgeries including facial feminization and tracheal shaves.
The clinic also has pediatric endocrinologists and family medicine physicians who see transgender and gender nonconforming children and adolescents, and can provide puberty blockers.
“We’re here to create a welcoming safe space, where people can thrive and get good healthcare,” Nisly said.
Charlie Esker is one of Nisly’s patients. Originally from Cedar Rapids, Esker majored in integrated studio art and minored in psychology at Iowa State University. They want to pursue an art career, working mostly with acrylic paints and chalk pastels, but they could see a future in education.
“I would consider myself an artist,” they said, “That’s my passion.”
In junior year of college, Esker realized that they were nonbinary.
“I identify as nonbinary, but definitely more on the femme side,” they said. “I definitely present feminine all the time. I mean, except maybe when I wake up right in the morning, or go to the gym, or throw on sweatpants when I’m really lazy.”
Through their art, Esker is re-illustrating how we perceive trans people. In college, they created “larger than life” portraits of trans bodies using roofing paper and chalk pastels. They wanted to counter the stereotypical portrayal of trans bodies as inherently sexual, or conversely gross and disgusting.
“It’s really just a celebration of trans bodies portrayed in a way that is divine,” they said.
Esker wants to take their transition slow. They came out four years ago but didn’t consider medically transitioning until two years ago. They have their third appointment with Nisly this month.
Originally, they visited a clinic in Ames in 2021 to start transitioning. But the process there was “rushed.” The provider didn’t ask about Esker’s transition goals and didn’t provide many options or information.
After graduation, they moved back to Cedar Rapids to care for their grandmother, who has Alzheimer’s. Instead of continuing care at the Ames Clinic, they came to the LGBTQ Clinic.
“I was given a lot more resources, like physical packets of information on how to legally change your name, how to change documents like driver’s license, how to advocate for yourself in the workplace,” they said. “A lot of those things come into holistic care for people, especially for trans people. And so the difference from the Ames clinic to the Iowa City clinic was like night and day.”
Simple courtesies, like asking for correct names and pronouns, came as a relief. Esker talked with Nisly about what feminizing effects they wanted from HRT, the timeline for physical changes and regular blood work.
“My goal is to just be a little bit more happy in terms of my, like, physical outward appearance,” they said. “It’s the main reason I sought trans healthcare.”
After their conversation, Nisly prescribed them estradiol patches. The Ames clinic never told Esker that patches, instead of oral medication, was even an option. In three months, Nisly will check their hormone levels, and Esker will decide to increase or decrease the dosage, or keep the levels constant.
“She was amazing. Like the clinic itself there, sitting in the lobby, just the feeling was so much different than the Ames one,” they said.
Building a new LGBTQ Clinic, the first of its kind in Iowa, took a year’s worth of planning. Nisly approached then-UI President Sally Mason with a plan and received her full support. She reached out to deans and department chairs, fellow colleagues and most importantly, to the LGBTQ community itself.
“We realized very quickly that, you know, being a physician is not enough of a tool for you to create something like that,” Nisly said. “We need, really, the patients’ input and their lived experiences to help frame what a clinic should be like.”
They created focus groups of LGBTQ patients and reached out to national LGBTQ groups, asking questions like:
What would your ideal clinic for LGBTQ-identified people look like? Help us imagine a program where you would feel safe and comfortable participating.
What unique services and programs are lacking at ours and other typical medical institution? What do you need for your health care that we do not currently offer?
What are the barriers to your care at our institution? How would you change or remove them, if you had the power and resources?
“It became clear that it was not just medical care, but we really needed structural change. And we also needed some help from other professions,” Nisly said. “We begin using our connections to kind of create basically a team, you know, a little village around our concept of trying to develop the LGBTQ Clinic.”
The clinic looks at patients holistically, addressing their mental and social needs as well as their physical ones. While the clinic is open to everyone in the LGBTQ community, trans people face more barriers to healthcare, so they designed the clinic around those needs.
For example, around 40 percent of trans people have attempted suicide in their lifetime — nearly nine times the national rate in the U.S. of 4.6 percent, the NCTE survey found.
This may be because 40 percent had neutral or unsupportive families (which increases the likelihood of suicide); 47 percent had been sexually assaulted in their lifetime; 46 percent had been verbally harassed; 9 percent had been physically attacked; 30 percent have experienced homelessness at some point in their lifetime; 77 percent have faced discrimination in K-12 education; 15 percent were unemployed (three times higher than the national rate); 27 percent were fired, denied a promotion or not hired because of the gender identity or expression; 58 percent who interacted with law enforcement experienced mistreatment; and so on. For BIPOC trans people and those with disabilities, these numbers increase. And Republican state lawmakers perpetually pursue anti-trans legislation.
The Iowa Civil Rights Commission received 30 complaints relating to gender identity in FY 2020, according to their annual report. Nationwide, 227 people were victims of gender identity hate crimes in 2019, the Federal Bureau of Investigation shows. In 2021, at least 47 trans and gender nonconforming people were killed, the deadliest year so far according to the Human Rights Campaign.
Early in the clinic’s history, Nisly had a patient who came to the appointment with a suicide plan in their purse.
“The patient I remember was very nervous, and in the beginning I noticed that our patients often were. They looked scared, or they were crying, and they were very nervous,” she said. “I think their previous encounter with healthcare had been so negative that it informed how they came to clinics.”
After the appointment, the patient told Nisly about what was in their purse.
“They told me that, ‘I have my suicide plan here, and I’m ripping it up because I have hope.’ So that was amazing. That was something that stayed with me all those years,” she said.
To treat patients holistically, Nisly and Imborek began building a network by contacting people from other medical departments or other professions. They talked with Professor Jacob Priest at the College of Education, and he created a clinic that provides free mental health support to LGBTQ patients at no cost. The clinic provides care including letters of support for HRT and gender affirming surgeries, and support for families.
They contacted the Information Technology Services (ITS) department to change the online system to provide more genders beyond man and woman, to create an option for a preferred name, and so on.
They met with general counsel for UIHC to create a policy that requires use of an individual’s preferred name. In cooperation with the President’s Office, they implemented a bathroom program, so that single bathrooms on campus became gender neutral.
For trans patients, they created new normative data, which establishes a baseline distribution of results for a particular population. They changed UIHC policy so when trans patients had to share a room with another patient, that room matched their gender identity instead of their legal gender.
“Everybody really needs to create a welcoming space, and I think it has become a cultural change and shift that has many, many, many, many people that were part of that,” Nisly said. “It took an entire village.”
The LGBTQ Clinic continued to expand, partnering with other departments at UIHC, like urology, to provide gender-affirming surgeries. Other clinics formed, like the HIV pre-exposure prophylaxis clinic and the anal dysplasia clinic.
During these institutional changes, the team often had to justify the time and resources spent in service of a minority population.
Since the United States Census Bureau does not ask about sexual orientation or gender identity, it’s difficult to know how many LGBTQ people live in the country. The Williams Institute estimated there are 1.3 million trans people in the U.S., with nearly 250,000 living in the Midwest and 7,400 in Iowa. They estimate there are 13 million LGBTQ people living in the U.S. with 106,000 in Iowa. Many patients drive hours, or come from adjacent states, to visit the LGBTQ Clinic, Nisly said.
The team explained that both LGBTQ and cis, straight patients generally appreciated questions about sexual orientation, behavior, gender identity, and the option for preferred names.
“In many occasions, we learned how universally diverse sexuality is, regardless of one’s identity as straight or LGB. If we had chosen to stereotype patients based on presumed identity and withheld the expanded questionnaires, many of this important health care information would have been missed,” the team wrote in an article published in the Clinical Obstetrics and Gynecology journal in 2018.
Nisly also called Professor Len Sandler at the College of Law. He’d previously worked with her on disability issues. Sandler has always represented marginalized people, from abused and neglected adolescents to migrant workers. He came to Iowa to open a law clinic for people with HIV/AIDS.
“I also grew up in a family that always cherished helping people. You do good. You do justice,” he said. “Our job was to put us out of business.”
When Nisly calls, Sandler knows to ask what she wants, by when and in what form.
“Nicole is somebody you don’t say no to,” he said. “She’s a ferocious advocate. She’s just a lightning rod for people.”
She said that her trans patients face complex, expensive and often unnecessary legal hurdles while changing their identity. Wouldn’t it be nice if there was a law clinic that helped trans people change their legal name, change the gender on their driver’s license, birth certificate and passport, and update their Social Security information?
In 2013, Sandler created the Rainbow Health Clinic. UI law students, under his supervision, help patients at the LGBTQ Clinic traverse the legal landscape of healthcare, transportation, estate planning and so on.
“We provide that service, and it’s no cost. We don’t charge our clients,” he said. “Basically, free lawyers.”
The law clinic also helps fight discriminatory bills, laws or policies at the state level, assisting advocacy organizations and litigators like the American Civil Liberties Union in drafting proposed legislation and producing a self-help guide to changing legal identity documents.
One roadblock they encountered was the Iowa Department of Public Health (IDPH), which required surgery as a precondition to changing an individual’s legal gender on birth certificates, driver’s licenses and other documents.
Only a fourth of trans people have had a transition-related surgery, the NCTE reported. The majority of trans people want a surgical procedure, but barriers remain. Fifty-five percent were denied insurance coverage for surgery, 42 percent said their insurance only covered some procedures and 21 percent had coverage for surgery but no providers in their network. A fourth were even denied HRT.
In practice, this policy meant that many trans Iowans couldn’t change their legal gender, despite medically and/or socially transitioning. But the law clinic found that IDPH were not following the letter of the law. To amend a birth certificate, Iowa Code requires a notarized affidavit from a doctor or surgeon stating that an individual’s sex designation has been changed by reason of surgery “or other treatment.”
“After we found that out, then it was easier, and we persuaded the powers that be to make sure that people can get their gender changed on a birth certificate, and then on our passports, driver’s license, Social Security, as well,” Sandler said.
The Iowa Civil Rights Act (ICRA) protects people against discrimination based on sexual orientation and gender identity. While the Republican-led legislature has repeatedly tried to undermine those protections, these attempts have failed, so far.
“When I talk with people around the country, a lot of them are fighting to get laws that Iowa already has, protections that Iowa already has, state civil rights laws and local civil rights laws,” Sandler said. Iowa may not be a blue state, “but we are, I hate to say, progressive on this issue because we are not known as a progressive state any longer.”
“With regard to coverage, Iowa is really lightyears ahead of many states, and in large part because of Nicole and the clinic, and the network they have created around the state,” he continued. “There are many people in the state who still do not accept the concept of gender identity. And we’ll keep fighting bills.”
Sandler said the Rainbow Health Clinic will keep defending against anti-trans legislation in Iowa, including national organizations that create prepackaged bills to ensure state governments don’t support or protect people.
“Unfortunately, because our client community faces different barriers, they need a solution. And if we can do it individually, we do it individually or represent them. If the law doesn’t help them, then we work to change the law and policy,” Sandler said. “But everything starts with Nicole saying, ‘Hello Len, can your students do this? How about this?’”
Iowa’s homegrown bigotry scares Esker, even though they’ve found a pocket of accepting queer friends in Ames. They aren’t perceived as a cisgender woman but also don’t present as a cis man, which makes for uncomfortable encounters in day-to-day life, including job interviews.
“It’s weird to navigate those spaces, especially as somebody who doesn’t present fully femme,” they said. “The queer clinic in Iowa City feels like a haven. It seems like when I’m in there, none of those factors will affect me.”
In a monumental victory for trans Iowans, the Iowa Supreme Court ruled against a state regulation prohibiting Medicaid from covering medically necessary gender-affirming procedures in November 2021, since the policy violated the ICRA.
“We’re working really, really hard to provide access for our Medicaid patients to get their gender-affirming surgeries, but they had to wait years for that,” Nisly said. “To me, that’s a lot of suffering that is unnecessary. And for the legislators, and those that are responsible for those decisions, I don’t think they understand the human scope and the impact on people.”
Nisly worries about having access to immediate care. At the moment, new patients may have to wait between one and three months for an appointment, but those in crisis can get appointments sooner.
“I don’t like for my patients to wait three months to be seen. I really don’t. In particular, if you’re looking for a gender transition, I really would like for things to be more immediate,” she said. “There is a high suicide risk in the community. People are not supported or have access to care. So that is my personal biggest worry.”
Even with the advancements made in the state, barriers remain. Iowa does not have private health insurance nondiscrimination laws or trans inclusive benefits for state employees. The state hasn’t banned health insurance providers from excluding trans-specific care or banned conversion therapy. Oftentimes, providers will deem transition-related surgeries like breast augmentation or facial feminization as not medically necessary.
“I really hate that it’s limited in that way. I don’t think people that made those regulations and laws understand how important those surgeries are to support people in their transition. And it causes suffering, and it is really painful for me to see,” Nisly said.
Hintermeister, a nurse at the LGBTQ Clinic, said they’re currently working through a backlog of patients, getting them letters of support, scheduling surgeries, and so on. The clinic, she said, is helping give patients a voice, so they can advocate for themselves in all areas of their lives.
Hintermeister previously worked in the emergency room for 10 years. Moving to the LGBTQ Clinic was a “learning curve,” but the essential elements of the job never changed.
“Taking care of the actual patient is not any different than taking care of any other patient, you know. You want to respect them,” she said.
The clinic also helps educate medical providers about treating LGBTQ people. For example, the team has presented on the current restrictions that prevent men who have sex with other men from donating blood. Along with other team members, Hintermeister helps educate nursing staff and students, so that everyone is equipped to treat an LGBTQ person.
“Our main goal is to not have LGBTQ clinics. And that all providers — nurses, physicians and surgeons — all feel comfortable and empowered to take care of the population, just as they would for elderly and kids and whatnot,” she said.
Hintermeister has worked at the clinic for almost three years and has never looked back.
“It’s one of my most favorite jobs that I’ve had ever, and the absolute most rewarding. Teaching a brand new patient how to do their own testosterone injections, or how to apply estrogen patches, and they start to cry, and they’re so happy about it,” she said. “Like seriously, it’s the most rewarding thing I’ve ever done. It’s so awesome to see that.”
On Tuesdays and Thursdays, the clinic is open until 9 p.m. to help manage the backlog and allow newer patients to come at a time when there are fewer people. On those days, Nisly is physically tired and exhausted, but the experiences with her patients keep her energized.
“We have these amazing, lovely encounters. They’re so meaningful, and so at the end of the day, instead of feeling exhausted, I feel like my heart is full,” she said.
Nisly remembers working with young adults just starting their gender transition. The parents were concerned and scared. Years later, the same parents would tell her how much happier their child is and that transitioning was the best thing to happen to them.
She loves getting to know her patients over the course of their life. She’ll notice mood changes in her pre-transition trans patients as they develop over the years.
“When they come back a couple years later, when you see sort of the transition fully realized, you know people are glowing, just happy,” she said.
Many of her residents and students have decided to dedicate their professional lives to LGBTQ healthcare because they felt it was the most meaningful experience of their career. Sandler said his law students have often done the same.
“My granddaughter is going, ‘What’s the big deal? Why are people worried about gender identity or sexual orientation or who people marry?’” he said. “I’ve seen in my students where they’re going, ‘Why is this an issue? Why has it happened?’ So that’s what I hope to do, pass it along, and each generation gets better.”
Esker believes that the LGBTQ Clinic provides a vital service for the trans community throughout the region. Cis people routinely have access to gender-affirming healthcare, but without the structural barriers like psychological evaluations and insurance regulations, they said.
“Trans people just want to be happy like everybody else, and I think that having access to places like queer clinics, especially the one in Iowa City that is made for us and by us, it’s really important for trans people to have. It’s lifesaving care for a lot of people,” they said.
Nisly still treats her first trans patient, but now, her initial unease is gone.
“It’s very difficult for me to even relate to how I felt back then,” she said. “The trans community is such an important community in my practice. And I’ve gotten to know them so well over so many years, and so I cannot see the patient in any way other than who they are.”
Her current ease was a skill that she learned from her patients, she said. And through the LGBTQ Clinic, Nisly and Imborek use that experience to educate other healthcare providers.
“So many people have been part of this making this possible and making this happen, including the trans community and the LGBTQ community,” Nisly said. “I think it really shows that people can get together, and radically change and transform healthcare into a much more human and welcome space.”
Adria Carpenter is a multimedia journalist for Little Village. There’s so much more she wanted to write about, but she hopes this brief story will suffice. This article was originally published in Little Village issue 303.