With open enrollment for the Affordable Care Act having just recently closed for 2017, many have healthcare at the forefront of their minds. For those in the queer community, once you have made it through the Labyrinth – insurance providers and Medicaid eligibility; bronze, gold, silver or platinum (are we talking Mariah Carey album sales here?) health plans; and premiums, deductibles and co-pays – you’re still not done. You still have to fight your way through the Goblin City to find a physician who will not only provide the best care but do so in a way that recognizes and respects the full spectrum of humanity. And should you need a specialist, just wash, rinse, feather and repeat until your hair looks like Jareth’s.
Enter the eQuality Project – an interdisciplinary effort at the University of Louisville established to ensure that individuals who are lesbian, gay, bisexual, transgender, gender-nonconforming or born with differences of sex development (DSD) receive the best possible healthcare. It includes the School of Medicine’s Office of Undergraduate Medical Education, the Health Sciences Center’s Office of Diversity and Inclusion and the UofL LGBT Center.
The eQuality Project is nothing short of groundbreaking in the world of academic medicine, particularly in terms of patient care. In 2014, the Association of American Medical Colleges (AAMC) developed and published competencies to ensure physicians are trained to provide equitable care for LGBTQ and DSD individuals. UofL’s School of Medicine is the first medical school in the country to incorporate these competencies, and they have striven to elevate them to an unprecedented level.
LGBTQ and DSD individuals face a disproportionate number of obstacles when seeking even the most basic medical care. From inadequate intake forms to often mortifying experiences with staff and medical professionals, visiting a doctor becomes a less than ideal experience. Because of this, many LGBTQ and DSD people will avoid seeking medical care for longer or altogether, compounding health issues that are not caught through early detection.
Sam Universe recalls one such experience: “A few years ago, I went to a clinic for a pap-smear. At the time, I was on birth control and a pap smear was required yearly. Each time I get one, I have to mentally prepare for days ahead of time. I recover for days after. Having it done in an environment where I feel safe and respected is crucial for my emotional health.
“When I arrived for my appointment, I was happy to see a gender line for ‘other’ on the paper they handed me at the reception desk. However, when I filled in ‘gender-fluid’ and handed it back to the receptionist, it quickly became apparent that no one on staff knew how to handle this information.
“The receptionist, who’d been all smiles up to this point, closed the sliding glass window, looked to another office staff member, looked back at me with huge eyes and then actually covered the side of their face with my file to hide from view while they talked to each other. They continued to stand there talking about me in front of me with the occasional side-eye in my direction for what felt like forever but was probably about two full minutes before the window slid open and I was told, ‘Ma’am, please have a seat and we’ll call you when we’re ready.’ The people in the waiting room were staring. I was blushing.
“That was the last time I marked my gender fluidity on paper at a doctor’s office. Because it didn’t stop there. It wasn’t just office staff. It was everyone I encountered. I became a spectacle.
“The nurse said, ‘Step on the scale for me miss – or, I mean, erm…’ and their eyes went to the floor, never meeting mine again. The doctor impatiently flipped through my chart and said with a huff, ‘You’re…it says here…gender-fluid’?’ before giving me an uncomfortable once over and saying something problematic that I’ve since blocked from my memory to the effect of, ‘But you’ve got female parts, right?’ This is the tone that was set before I, someone with a sexual trauma background, laid down, spread my legs wide and let a stranger put their fingers inside of me while some bored-looking person stood in the corner and watched. The worst part is, they made me feel like I deserved it. They made me feel like I was less than human.
“Thankfully, I didn’t let that push me too far into the closet. In fact, I’ve since become more public with my transness and shifted my identity from fluid to male. This isn’t the only bad experience I’ve had at the hands of healthcare professionals as a result of my transness, but it’s the one that sticks out the most. Identifying as male seems easier for cis people to wrap their heads around than identifying outside of the binary. I still get treated like a spectacle, but it’s often with a judgmental air of ‘whatever floats your boat’ rather than flat-out hostility or trivialization. Before, people treated me like I wasn’t even a person. Now, they just treat me like a person who isn’t worth their respect.”
The relationship someone has with their physician is an intimate one and involves a great deal of trust. If that trust is broken, it can be legitimately traumatizing. This alone shows how great a need there is for LGBTQ competency training in medical fields. Add in that LGBTQ populations experience higher rates of substance abuse and mental illness, higher cancer rates and higher smoking rates, and the gravity of the issue becomes even more apparent.
Stacie Steinbock is the director of the satellite office of the LGBT Center located on the Health Sciences Center campus at UofL. She and other faculty members began advocating in 2014 – during the same time period that the AAMC was developing its competencies – to include LGBTQ-supportive content in the curriculum at the School of Medicine. During that time, staff at the office conceived of an LGBT Health Certificate.
“It was [initially] offered as an optional paracurricular opportunity for students, staff and faculty here,” Steinbock relates. “It was so wildly successful that people both showed up in droves and also filled out our evaluations and said, ‘This is really necessary and it’s necessary in a required curriculum.’ That gave us the opportunity to really pitch this to Amy [Holthouser] and others here in our School of Medicine’s curriculum office.”
Things moved quickly going forward from there. Steinbock assembled a steering committee that included clinicians and educators to develop a plan to get the content into the classrooms. As a result, LGBTQ competencies have been a standard part of the School of Medicine curriculum since fall 2014.
Amy Holthouser, M.D., associate dean for undergraduate medical education and a member of the eQuality steering committee at UofL, elaborates on some of the changes made to the curriculum: “We put the content into any part of the curriculum where it would make sense. So that when we talk about birth control pills for women, for example, or when we talk about post-menopausal hormone replacement, we are also now talking about these hormones in transgender individuals. When we talk about the development of sexual identity and human sexuality or the development of the reproductive system itself, we put all of the content that’s necessary to care for LGBT and DSD patients in so that it’s really integrated into our classroom courses.”
Steinbock adds, “This was a very intentional decision that we made to not have a ‘gay day’ and to not say, ‘This is other weird content we’ll only talk about for one day and then never talk about it again.’ We really thought the most powerful way to teach this would be to normalize it and to say, ‘LGBT and DSD patients are part of your patient population. You will have them as patients.’ And not just a few people will be trained to deliver this content but we have to train faculty across our continuum to be able to talk about these populations inclusively.”
Over 50 hours of the curriculum for first- and second-year medical students at UofL have been changed or tweaked in some way to use inclusive language that addresses the unique needs of LGBTQ and DSD patients with plans to roll out changes to the curriculum for third- and fourth-year students coming in the near future. Not only is the comprehensive nature of these changes monumental but also the method for the development of these changes is wholly groundbreaking.
Steinbock continues, “One of the things the University of Louisville has done that I’m really excited and proud about is that it’s really involved the community in helping to both create and vet curriculum. For example, for the last two years, we’ve held an LGBT Health Summit to which we’ve invited the community where we’re doing faculty development. We’ve offered people to talk back and forth in small groups about LGBT health. It is both a faculty development opportunity to hear from real people about what matters to them and also a chance for the community to have a stake in what we’re teaching and to have a voice.
“Another way we’ve done this is we’ve created a community advisory panel that we call The CAP, and for the last year, they have looked at every single piece of curriculum that we have tweaked or created to give their opinion on it. That has been a vital piece of this project – to have community voices saying, ‘This is what’s real to me and this is what I would like to have emphasized.’ And for people who have had negative experiences, it can be corrective to find a positive way to retell that story and be taken seriously.”
Yet another crucial piece of the eQuality Project that has been used to create curriculum content is the implementation of sessions the committee calls Speed Meetings. In these sessions, members of the community have an opportunity to sit down with 10 medical students and share their stories of barriers they’ve experienced to healthcare. Experiences range from outright discrimination to healthcare providers failing to give appropriate screenings and failing to use appropriate terminology.
While the LGBTQ competencies taught as part of the curriculum at the UofL School of Medicine are not the only ones being taught in the U.S., they are far and away the most comprehensive in the nation. This positions UofL as a national model for LGBTQ inclusion and competency that other schools may look to emulate.
Holthouser says, “One of the great things you get to do when you’re a medical educator and in the medical world is you get to publish what you’re doing. The goal of every medical school is to create and disseminate new ways of doing things that help patients. We’ve been able to present the content, the curriculum, the assessments on the national stage and are being contacted by schools frequently to request information and advice on how to adapt their own curriculums based on what we’ve done here.”
Dr. Jennifer Potter is an associate professor at Harvard University and also works with The Fenway Institute, a national leader in research and education about the health of the LGBTQ community. She also sat on the AAMC committee that worked to develop the recommendations for LGBT competency training in medical schools in 2014, the same published guidelines that kindled the beginning of the eQuality Project at UofL. She also serves as one of a few mentors for the steering committee.
“They are really doing something quite far reaching and unique,” Potter emphasizes. “It truly is a model program, and that they’re doing this in a place that had so little to begin with is truly notable. Nationwide, we know there are on average, at most, about five hours dedicated to LGBT topics, which is very, very little. And what they’re doing is dramatically changing that landscape across the entire curriculum.”
To get involved with the Speed Meetings as a community member,
contact Stacie Steinbock at [email protected]