UI student's medical experience raises questions about transgender care in Iowa
Zeke Swim sits on a soft black couch sipping deeply from his coffee. The 20-year-old University of Iowa psychology and sociology student has a partner, gets good grades, and is involved in his community. But life was not always so comfortable for him.
Swim is a transgender male — a person who was born female but has sometimes undergone steps to physically alter her body through hormonal treatment and possible surgery and identifies as a male. He has been undergoing hormone therapy for almost seven years — since he was 15.
But in July 2010, the onset of unexpected abdominal pain and vaginal bleeding caused him to seek medical attention. Swim's subsequent treatment — a seven-month ordeal that, he says, consisted of 15 emergency-room visits, 78 vials of blood drawn, and one major surgery — led him to make some stark realizations about the current treatment of transgender patients in local hospitals:
Some doctors and hospital staff don't know how to treat a patient who doesn't exactly fit into the gender description of female or male. And as at least two University of Iowa Hospitals and Clinics doctors confirm that the medical world may be behind the times, the UIHC is taking steps to better serve the transgender community.
Current state of care
On Feb. 18, 2011, William Davis, a UIHC reproductive endocrinologist, performed surgery on Swim to try to alleviate bleeding and abdominal pain. The laparoscopic hysterectomy and bilateral salpingo-oopherectomy — which consists of the complete removal of the uterus, fallopian tubes, cervix, and ovaries through the vagina — resolved Swim's symptoms.
Swim said he believed the side effects that led to his surgery were not typical for someone who is going through the transitioning process from female to male but can occur.
Davis spoke to The Daily Iowan generally about UIHC doctors and staff, noting that they are not always educated to care for transgender people going through difficult medical situations.
"There aren't very many of us," said Davis, who has more than 40 years of experience treating the transgender population. "My take on observing other physicians is that they would not touch the issue with a 10-foot pole."
And while he said he didn't receive any transgender training during medical school and residencies, he has advocated for visiting professionals on fellowships to have an open dialogue about transgender care with medical professionals at the UIHC.
"Back then in medical school, the term [transgender] was never mentioned; homosexuality was never mentioned," he said.
Davis said he is focused on creating an environment for current medical students that is more socially diverse, and he makes a conscious effort to get medical students involved when transgender patients go to the hospital. He believes, he said, that the education is improving.
Katie Larson Ode, a UIHC pediatric endocrinologist, said the facility's medical professionals are not always properly trained because transgender-specific curriculum in medical school hasn't been implemented until lately at any institutions that she's aware of.
"[Transgender health care] has only been part of the curriculum in medical education very recently," she wrote in an email. "It is generally touched on very briefly. Personally, I had one day in medical school [at the University of Wisconsin-Madison], where we discussed care for transgender patients."
During the second year of classes, UI medical students are introduced to transgender medical care in one required lecture, said Hans House, a UI clinical associate professor of emergency medicine. The lecture consists of the psychology of taking care of transgender patients and the medicine behind the transgender process.
But he said this one lecture is the only formal training built into the curriculum.
While some in the UI Carver College of Medicine are attempting to better educate the upcoming crop of new doctors, Swim said, there were difficulties he experienced with current doctors and medical staff that frustrated him.
"There were a lot of doctors that told me it wasn't their specialty; they didn't deal with trans patients; they didn't know what to do," he said. "I understand there are a lot of doctors who went through medical school and haven't learned anything about trans care, but you have to be prepared, and your patient shouldn't have to teach you about their body."
UIHC officials declined to comment directly on Swim's treatment, but said they are committed to improving the care given to transgender patients.
Transgender care beyond Iowa
Issues concerning health care for the transgender community are not unique to Iowa.
A national survey conducted in 2011 by the National Center for Transgender Equality and the National Gay and Lesbian Task Force has raised concerns regarding the state of care available.
Of the 6,450 transgender respondents, 19 percent reported being refused care because of their transgender status, 28 percent noted some type of verbal harassment in a medical facility, and approximately 50 percent reported having to teach the medical providers about transgender care in some way.
But some national experts say changing these trends may not be as difficult as many medical professionals would think.
"My feeling is that you really need to get primary physicians trained everywhere," said Jessi Humphreys, an investigator for the Stanford, Calif., LGBT medical education and research group MERG. "There's really nothing different that transgender patients need when being treated."
Humphreys pointed to Lyon-Martin Health Services in San Francisco as a clinic that provides quality transgender care.
She noted that intake forms have a variety of gender-identification options, health providers have been trained in transgender care, and physicians ask patients about full gender and sexual history as simple ways that Lyon-Martin uses to create an inviting environment for the transgender population.
That is something numerous experts have echoed.
"Transgender medicine is very simple; hormones are very simple," said Kara Desiderio, the head project manager of Project HEALTH , a San Francisco-based group that advocates say improved health-care access for the transgender population. "It's really not a lot to learn; you just really need someone that cares."
And yet, transgender people and medical professionals say they are still seeing problems that could be easily addressed.
"Health-care providers are noticing that they are not serving their trans patients as well as they could," Desiderio said. "Having options on the intake form to identify gender is something that doesn't take a lot of change."
Ultimately, an estimated 2 to 5 percent of the world's population is transgender, according to the Transgender Law and Policy Institutes. And experts say doctors need to be aware of how to treat the transgender population.
"[Physicians] need to know about how [their patients] have come to this realization," said Graham McMahon, an associate professor of medicine at Harvard University. "How have they dealt with it? What kind of supports do they have? And of course, you want to talk to them about their interest in awareness."
Looking to the future
Almost fourteen months and one successful surgery later, Swim is comfortable. But his frustrating experience has led him to promote a dialogue among local medical professionals and the Iowa City trangender community regarding problems that may arise during care.
Swim is a leading member of TransCollaborations — a UI student organization that advocates for increased awareness of and better treatment of the transgender population.
In November, the group held its first discussion with medical professionals titled "Intersections of Boxes and Bodies: A Dialogue Between Health-Care Providers and Trans-identified Individuals."
"I thought that it was a pretty good discussion; I had really hoped there had been more doctors who had come to it," Swim said.
Ode, who attended the workshop in November, said she hopes more discussion and training sessions will occur among the transgender population and medical professionals as a way to educate all hospital staff.
"I think, more importantly, though, even though the doctors are under-educated, our allied staff [RNs, MAs, secretaries, etc.] are generally not trained at all, which is a real problem for our patients," Ode wrote in an email.
During the discussion in November, health professionals and transgender members of the community broke off into groups to speak about individual concerns they had about health care. After the individual discussions, the two groups came together and listed concerns they had, such as informed consent, adjusted intake forms, and furthering the cultural competency training to encompass the transgender community.
After the discussion, one medical professional who attended the talk said what she heard inspired her to make changes that will affect local hospitals and clinics.
"That experience motivated me to talk to our clinic directors and University of Iowa Health Care leadership to develop an LGBT-friendly and culturally competent electronic medical-record registration process and clinic," said Nicole Nisly, a clinical professor of internal medicine.
Changes began six months ago, she said, and they include revised intake forms at the Iowa River Landing clinic — which is scheduled to open in October — that will include gender-inclusive language, and bringing LGBT Safe Zone training to UI clinics.
The officials welcome feedback from the LGBT community.
TransCollaborations is not done speaking with the medical community. In fact, it has a large symposium scheduled for May.
Swim said he hopes more UIHC medical professionals will attend, and they can focus on what physicians can do to make a visit with a transgender patient more comfortable rather than talking about sweeping hospital-wide changes.
"I realize that [hospitals] have a lot of issues with transgender health care, because it' s such a seemingly new topic, but it's not," he said. "There have always been trans people, and there will always be more."
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