LGBTQ

How Transgender People in the South Are Helping Each Other Get Health Care

Facing discrimination, trans people in Tennessee and Kentucky have developed a buddy system for doctor’s visits.

Photo Credit: Elvira Koneva / Shutterstock

This article has been updated to reflect the Trump Administration's announcement to defend health care workers who deny transgender patients medical care on religious grounds.

RJ Robles was sick, and unsure what to do. Robles had suffered from excruciating stomach pain for two days, and they knew it wasn’t something they ate. But, Robles said, “I found myself, just like any other trans person, avoiding the ER.”
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It was nighttime, in Nashville, Tennessee, where Robles (who goes by they/them pronouns) had moved from Chicago for school. Even though they were hesitant to brave at the hospital, they texted Kale Edmiston, founder of the Trans Buddy program at Vanderbilt University. Kale met RJ at the hospital, “and just held my hand throughout the whole night at the ER and was super present with me, let the nurses know about my trans status and identity.”

Edmiston told the nurses and doctors what Robles’ pronouns were, and pushed the doctor to listen carefully to Robles and take their condition seriously. Edmiston, who describes himself as “pragmatic and stubborn,” stayed at the hospital all night, making sure doctors were respectful and patient with Robles. The attempt to preempt a transphobic encounter helped. Robles was eventually sent home, doped up on painkillers (Edmiston drove them), and referred to a specialist who diagnosed them with irritable bowel syndrome.

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Robles says they avoid emergency rooms for the same reasons a lot of transgender people do: there’s the cost, first off. But there’s also the potential for confrontation, discrimination, or abuse. According to a 2012 survey, in Tennessee, nearly one in three transgender people has been denied medical care due to their gender identity. And around one in four has put off visiting a doctor when they were sick or injured, for fear of discrimination.

And on Thursday morning, the Trump administration reinforced the likelihood of discrimination: it announced the creation of a new unit with the Department of Health and Human Services (HHS) that will specifically support medical workers who decline to provide care to transgender people on supposedly religious grounds (the office will also aid workers who decline to be involved in abortions).

That decision by HHS has been in the headlines, but discrimination against trans people in health care is already common, with few protections in place in most states.

“A lot of trans folks unfortunately have had negative experiences in hospital settings,” Robles said. “We carry traumas in our bodies.”’

The lack of trans-sensitive health care, and the likelihood of facing discrimination, is what led Edmiston to start Trans Buddy in 2013. Transgender people can call a hotline and get a trained “‘buddy” to answer their questions, refer them to a trans-friendly provider, or accompany them when seeing a doctor. People call from home, but also from the hospital or the psych ward.

The health buddy program is an extension of something trans people and rural southern people have done for each other for a long time: formed grassroots networks of support to fill a void of formal resources.

“I grew up in rural Appalachia,” said Edmiston. “There’s a really long tradition in the South and in Appalachia of people taking care of each other because there’s not much else. This is very much in the spirit of that.”

A buddy system for doctor’s visits

Edmiston started Trans Buddy almost by accident. He says it began when a rumor spread among trans folks in Nashville that someone knew someone who knew a trans doctor. The trouble is, that doctor was him—and he wasn’t a medical doctor, but a PhD student in neuroscience at Vanderbilt. He didn’t even have the “Dr.” in front of his name yet (now he does, and he’s working on a postdoc in Pittsburgh). Still, friends and then friends-of-friends began contacting him for medical advice, reluctant to go to a professional.

“People were grasping at whatever they could,” he said. “People were texting me, like, do you think I need to go to the doctor? And what I started doing was just going to appointments with people.”

He quickly became overwhelmed. Trans people were texting and calling him from all over Nashville, and then all over the state. He spent mornings, evenings, and nights in the ER and the psych ward with strangers, both youth and adults. One time, Edmiston got a call from a couple in a rural part of Tennessee. One of them had a complication following a gender-affirming surgery. He told Edmiston he’d tried to find treatment at three different hospitals in his area and been turned away; the hospitals simply said they couldn’t treat a trans person. Edmiston called a nurse friend of his, and the two spent the entire night at the hospital with this pair of strangers, helping them get care. That, he says, is when he realized that this task was too big for him to do alone.

“I naively thought, if I just train a bunch of people to do this, it will be less work for me,” he said, laughing. He got a few friends involved and started training volunteers to make referrals, do advocacy in the hospital, and teach providers on the fly about trans bodies and etiquette—everything from asking for someone’s pronouns, to respecting their privacy, to supporting their decision to take hormones. Since then, Edmiston says Trans Buddy has served a few hundred people, the majority of whom were isolated from other trans people before they called."

“Making the decision to seek care as a trans person is a huge act of strength and we’re happy to facilitate that in any way, just to lower that threshold for getting in the door,” Edmiston said.

Trans Buddy is now officially housed at Vanderbilt University Medical Center as a part of the Program for LGBTI Health, and RJ Robles, who started out as a volunteer, is the director. Robles says trans people of color are especially likely to have their needs undermined or questioned in doctor’s offices or psych wards. “White providers make these decisions without understanding the intersectionality of transphobia and racism. There’s a huge lack of understanding around issues that trans folks of color particularly face.”

Trans buddy, Kentucky edition

The first people to replicate the Trans Buddy model started in Nashville were right next door, in Kentucky. Oliver Hall, who uses they and them pronouns, is the Trans Health Coordinator at the Kentucky Health Justice Network (KHJN), which started its own program called Trans Health Advocates in August of 2016, inspired by the Nashville model. Hall works on the program full time, developing trainings for physicians about how to work with trans patients. The need is just as great as in Tennessee; in a 2014 survey of trans people in Kentucky, almost a third said they’d been refused treatment due to “perceived gender and/or sexual identity,” and one in five said their current provider wasn’t competent in trans care. Many traveled long distances to get to people who could help them.

KHJN focuses on empathetic care: “We’re making this cognitive shift for physicians...to see trans patients as the experts on their own experience,” Hall said. Empathetic care means that doctors don’t necessarily have to know everything about trans health care, but they do need to listen more carefully to trans patients, “getting away from that model of detached concern.”

Their trainings also teach cultural competency: basic etiquette like using gender-inclusive language to ask patients about sexual history, checking in with patients about how they want their body parts referred to, and respecting people’s pronouns while avoiding “outing” them (for example, asking pronouns in front of strangers in a waiting room). But Hall says doctors can go through all these steps and still miss the mark with transgender people who need supportive care. “Neither cultural competency nor empathy are enough on their own.”

KHJN recently trained regional leaders from Planned Parenthood who will bring this knowledge to the providers they work with. KHJN is also starting a special fund to help trans people with uninsured costs, from surgeries and hormones, to travel to get to a doctor who accepts trans patients. There’s already a tradition of crowdfunding health care costs in trans communities; this fund, which Hall says aims to raise about $10,000 a year, will help people who don’t have the resources in their own networks.

The South as a battleground for transgender health

A lot of people call the Kentucky program asking insurance questions, which Hall says is tough: none of their volunteers are lawyers or insurance experts, and recent political shifts have made a bad situation worse when it comes to advocating for coverage for trans people.

Before the Affordable Care Act, most health insurance plans didn’t cover gender-related surgeries or hormones for trans people. Hall and others were thrilled when a rule called Section 1557 under the Affordable Care Act was finalized in May 2016, forbidding ACA health plans from discriminating on the basis of sex or gender identity. But the celebration was short-lived: the gender identity and abortion-related portions of the rule were declared unenforceable by a Texas court at the end of 2016, after a Christian religious organization sued HHS. Under President Donald Trump, HHS has indicated its intention to revise the 1557 rule, leaving out protections for gender identity permanently. That means that after a brief window during which transgender people almost had the law on their side in fighting for insurance coverage, it’s back to nothing. The latest HHS announcement pushes things even further in the other direction, suggesting that the Trump administration's health department will go out of its way to protect providers who discriminate against trans patients.

“It’s not ideal, it’s not what any of us would have picked, but it’s where we are,” Hall said. People still need the same things regardless of the political climate, so we just need to be more creative and innovative to make sure that people get the health care that they need."

Even for non-trans people, basic access to health insurance was already an issue across the South, where uninsured rates are generally higher than the rest of the country, even after the Affordable Care Act significantly expanded insurance options.

Uninsured Rate by State

[Source: U.S. Census Bureau]

Kentucky, which expanded Medicaid, has seen significant declines in the numbers of people without insurance, but its Medicaid program doesn’t cover gender-affirming surgeries or hormones. In KHJN’s 2014 survey, one in five trans Kentuckians said they were without insurance. Most who had insurance said their insurance wouldn’t cover trans-related care, and three in five surveyed made under $30,000 a year. In other words, trans Kentuckians are highly likely to be unable to pay for the costs of care.

In Tennessee, an already-bad situation for trans people has gotten worse in recent years as an increasingly conservative legislature has pushed for measures like a 2016 law allowing counselors to decline to work with queer and trans patients, and a “bathroom bill” that died in the last legislative session.

The consequences of a hostile legislative and cultural environment are painfully visible to people in trans communities, and often invisible to those outside. Alice Sattler says she used to be one of the outsiders—until she spent a few years as Kale Edmiston’s roommate while she was going to nursing school in Nashville. Edmiston, with his gentle stubbornness, started pushing her.

“I was constantly hearing these horrible stories of mistreatment, and people not being able to access...really basic care because of being trans,” she said. When Sattler got a job as a nurse-practitioner and midwife at Nashville’s Vine Hill Community Clinic, Edmiston convinced her to start doing trans care, too. She began prescribing hormones to transgender patients, and pretty soon, she had dozens, then hundreds, of patients, coming to her from all over the South.

“It kind of blew my mind,” she said.“I had no idea how few providers there were.”

There aren’t enough providers, and there are also persistent barriers to hormone access. Most doctors require a therapist’s note to give a trans person a hormone prescription. But finding a trans-friendly therapist can be just as difficult and cost prohibitive as finding any other medical professional.

Sattler doesn’t require a therapist's note; she just makes sure her patients understand and want the hormones, and then she prescribes them. It’s called “informed consent,” she says, and it’s “the backbone of medicine,” the approach most doctors take to prescriptions in general. She doesn’t know of anyone else in the state or even the region doing informed consent hormone therapy in a facility that accepts people without insurance.

Even more troubling to Sattler is what happens when she tries to refer her trans patients to other providers: it’s often “a big fucking deal.” Providers will outright decline to see someone who’s trans, even if it’s for an unrelated condition like a dermatological problem, or a tumor. “I don’t know if it’s just a cloak for transphobia. But what I hear from providers is, ‘It’s too complicated.’”

So, it’s understandable that people visit Sattler from as far as North Carolina and Louisiana. Sattler says she sees every day how trans and queer people take care of each other, sharing information and resources through informal networks that stretch across the region. With programs like Trans Buddy and Trans Health Advocates as models, there’s potential for those networks to formalize and push for better trans healthcare access in people’s home communities, so they don’t have to traverse multiple states for appointments with Sattler.

“I feel like I should give people a soda or a beer after a long drive,” she said, laughing ruefully.

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Lewis Wallace is a contributor to Scalawag Magazine.