COLUMBIA — When Shane Stinson came out as a transgender man, insurance was the least of his worries.
But he soon realized he'd misjudged its importance. There were ambiguities about what insurance would cover, like the benchmark tests before hormone therapy begins, the syringes and needles necessary for injecting hormones, and the hormones themselves. Add to that a lack of transgender-specific knowledge among insurance agents, and the result is that transgender people can be blindsided by the cost of medical coverage.
And it may be prohibitively expensive. Stinson eventually was able to afford it, but said the unknown aspects were a major source of anxiety for him.
For all the hassle it causes, insurance is only one piece of the puzzle. There's the question of the quality of the coverage itself. Does the doctor know enough to be helpful? Does the doctor have a friendly and open demeanor? Will the doctor use the patient's preferred name, or the name given at birth?
All of these "routine" aspects of going to the doctor become much trickier when a person is transgender — due in part to both a lack of knowledge and transphobia, the discrimination many transgender people experience when seeking health care. That can be a barrier to people getting the services they need.
According to Injustice at Every Turn, a 2011 report of the National Transgender Discrimination Survey, 28 percent of transgender patients reported avoiding medical treatment when they were sick or injured due to anti-trans bias and disrespect. In addition, 33 percent put off or did not seek preventive care.
At MU, the situation for transgender patients is improving, according to Amanda Swenson, a professor at the MU School of Medicine and a physician at MU Health Care's South Providence Family Medicine clinic who specializes in transgender care.
"It's not easy for trans patients to find a caring provider, but I think that in Columbia we're pretty fortunate," she said. "There are people that you could see who do know what they're talking about here. The university is really trying to foster this and make sure that it’s more inclusive. And the Student Health Center is doing amazing things in transforming the experience of transgender patients."
At MU's Student Health Center, where students can get hormone replacement therapy, the patient intake form includes a "preferred name" line, though new electronic medical record systems make it harder to use and access, said Heather Eastman-Mueller, the Student Health Center curriculum coordinator.
When nurses call patients in the waiting room, they are supposed to use the patient's last name to avoid gendering by the use of the given name, Eastman-Mueller said. Then the health care provider can ask the patient for the preferred name and pronouns.
It's a big deal to be identified appropriately. Cole Young, 19, a student at MU who has been receiving testosterone through the Student Health Center, recalls the endocrinologist who misgendered him by pronoun and referred to him as a girl.
"And I know he has done that to other trans patients as well," Young said. "But he is one of the only endocrinologists in the area I know that would prescribe hormones."
The conversation could have gone better. Young told the doctor that he'd been living as a man for a year, "and he said, 'That qualifies,' and walked out, then sent in some med student to come talk to me for the rest of the time.
"So that was an interesting experience," Young said.
At that point, Young had already been refused treatment by a doctor who didn't want a transgender person as a patient, he said.
Educated to a 'T'
And still, Columbia is better than most places. Word of mouth is slowly spreading to the rest of mid-Missouri that friendlier transgender health care is available here, Swenson said.
"We have several physicians in town who feel comfortable providing transgender care," Swenson said. "So we have patients from a 200-mile radius around us who come to us for treatment, and we also have some great specialists who help with our patients."
Barriers still exist, Swenson said, but there's been "a lot of improvement in Columbia."
One of the providers of transgender health care in Columbia is David Tager, a psychotherapist who specializes in serving the LGBTQ community.
In fall 2010, Tager received three calls within two months from transgender patients asking for assistance with medical needs that weren't being met. Tager said he had always been "connected to the LGB community," but after seeing this lack of services he began to educate himself on the "T" of LGBTQ — transgender issues. He brought his concerns to two fellow psychologists, Erika Patterson and Jessica Semler, and the Transgender Health Network, or T-Net, was born.
T-Net aims to connect mid-Missouri patients with transgender-friendly medical providers through an online database. Physicians, mental health professionals, social workers and nurses can sign a statement consenting to having their name on T-Net's roster and committing to being "personally and professionally supportive and dedicated to informing (themselves) on gender identity, gender expression and transgender issues," according to T-Net's website. Through this, Tager hopes, the number of hurdles transgender patients face can be minimized.
"Imagine if somebody trans comes in for health care, how many different obstacles they have to face," Tager said, "and how likely they are to come out either feeling like, 'I'm never going to do that again,' or it has to be an emergency and then they're tearing their hair out because they get treated badly.
"It's important to really create a friendly environment, it's important to be knowledgeable, it’s important to realize that trans people are just individuals," Tager said.
Covering the whole mid-Missouri region, the T-Net roster currently lists 48 providers: 18 medical doctors, 23 mental health specialists and seven additional resources including social service providers and social workers.
Patients teaching doctors
When you go to the doctors' office, you expect your physician to be able to talk with you about your health, answer questions and provide solutions. This is not always the case for transgender patients. In some instances, when doctors are not aware of the health care challenges the transgender community faces, patients find themselves needing to educate their doctors.
To illustrate how frustrating it is for transgender patients to feel like they're responsible for driving conversations with their doctors regarding health care, Stinson uses a flu analogy.
"If you're someone who has the flu, you don't want to be telling the doctor, 'These are the antibiotics you should be prescribing. This is how much an average person is doing it,'" he said. "You're relying on the doctor to give you that information. It can be kind of overwhelming or nerve-wracking (if they don’t give you that information), and you're like, 'OK, I am telling my doctor what to prescribe, and that's not how it works.'"
In fact, according to the Injustice at Every Turn survey, 50 percent of transgender respondents reported having had to do just that — teaching their own doctors about transgender health care.
"Sometimes you're walking into your primary care physician and you're saying, 'I want to start hormone replacement therapy,' and they're like, 'Excuse me, how does that look for someone who's trans?'" Stinson said. "Some doctors have no idea how that looks, what tests you need to run, what dosage, what drug, what brand, how do we code this in the system so that it's covered on insurance — all those kind of tips and tricks."
Stinson is active in transgender health groups on social media, where he shares and picks up tips from other people who have gone through transitions. Patients sometimes have more up-to-date results on the effectiveness of certain drugs than doctors who are not involved in the groups, he said.
"You're constantly educating (the doctor) on the newest information because you're getting a lot of that word-of-mouth, at least in my experience because I'm in a lot of these groups," Stinson said. "I feel like I'm bringing those sort of questions to the table a lot, rather than them saying, 'Oh, so how are you feeling? So you've been feeling more ups and downs; what if we did your shots weekly, that way it’s more consistent.'"
Sometimes, Stinson said, doctors who are not educated on transgender health care will refuse to treat transgender patients or even harass or act violently toward them.
According to the Injustice at Every Turn survey, 28 percent of respondents had been subjected to verbal harassment and 2 percent faced physical violence in doctors' offices. Nineteen percent were denied treatment outright.
Patients who are turned away from doctors may then move to online black markets to purchase hormones, which becomes unsafe due to a lack of both regulation and inability to have regular check-ins with medical professionals.
"For example, I've been on testosterone for two years," Stinson said. "At my one-year mark, my doctor did tests again, to talk to me about what my levels were like. And she told me that my red blood cell count was kind of high, which is a common side effect of testosterone, so she decided to lessen my dosage a little bit, so I didn't get into any further medical problems. I would have never known that, especially if I had been refused health care and had gone to these other markets.”
Likewise with surgeries, Stinson said. If a person's insurance doesn't cover their sex reassignment surgery, the person may turn to unsafe alternatives.
For example, Stinson said, insurance companies will sometimes consider breast augmentation surgery for transgender women as a cosmetic procedure, not a medical need, and will not cover the cost. The women could seek out cheaper and more dangerous ways of getting surgery, such as "pumping parties," secret gatherings where people inject attendees with silicone — sometimes industrial-grade — which can result in serious health complications or death.
What doctors can do
Finding doctors who are knowledgeable and willing to help transgender patients is a major challenge for the transgender community. But for doctors, getting to the point where they can suitably provide care for transgender patients is also difficult, Swenson said.
New research and guidelines are constantly evolving, rendering old protocols obsolete. So physicians need to further their education on their own if they want to remain informed about providing for the transgender community.
For Swenson, effective ways to learn have included keeping up with new literature, attending conferences, working with a lot of patients and having a trusted mentor to answer questions and collaborate. It helped that the clinic she was assigned to in her residency in Madison, Wisonsin, had a large transgender population.
"So my mentors and teachers taught me how to best care for someone who is transgender and help them with their gender-affirming hormones," she said. "And then I had my own patients to work with. And then I came here (and) continued that work."
Swenson said she learns a lot from her patients about the typical effects of transgender care. She’ll ask her patients if they know people who have experienced a certain side effect, or she’ll probe into how they're feeling to determine the effectiveness of certain hormone levels. She said this is distinct from relying on patients to dictate their own care.
"I think there's a difference between learning from your patients and having your patients teach you," Swenson said. "I've never said to my patient, 'What do you think we should be doing right now? What medicine do you want to be on?' I try to demonstrate that I am knowledgeable, and I discuss different options for the treatments, the pros and cons, that they have choices, that here’s what we can do. I think it’s important to have the knowledge to be able to speak intelligently about what the treatment is."
Medical professionals, when giving the go-ahead to begin hormone therapy, typically rely on one of two protocols: the informed consent model or the World Professional Association for Transgender Health’s Standards of Care.
The informed consent model calls for the patient and their doctor to have an open conversation about the risks and benefits of hormones, with signed consent forms being enough to clear a patient for hormone therapy.
However, WPATH's guidelines require informed consent plus an evaluation from a mental health professional to proceed. This comes with a diagnosis of gender dysphoria, which involves a person expressing a different gender than the one assigned to them at birth for at least six months and to the point that the dysphoria impairs normal social or occupational functioning, according to the Diagnostic and Statistical Manual of Mental Disorders, the benchmark for psychological diagnoses.
When medical professionals have not had much experience with transgender patients, Tager said, they'll typically begin by relying on the standard WPATH guidelines. But WPATH requires a psychologist, not a physician, to do the evaluations. Tager said some therapists are hesitant to sign the letters approving hormone therapy because their expertise is in giving therapy, not being a gatekeeper for medical treatments they don't necessarily understand.
"I was trying to train people, saying, 'First of all, you can do this.'" Tager said. "There's no risk associated with this, all you're doing is giving the person a chance to tell their story, and addressing if there’s gender dysphoria.
"There are all kinds of fears associated with it (among therapists), but a lot of the fears are really not warranted," Tager said.
Teaching new doctors
Within the past few years, there has been a big push at the MU School of Medicine to better train medical students to care for transgender patients, Swenson said. An updated curriculum integrates sexual and gender minority health information into all four years of the education.
The first two years are primarily bookwork: students studying the sciences and framework necessary for medicine. When Swenson teaches first-year classes, she focuses on terminology and how to comfortably interview transgender patients — taking a medical history, for example.
Later on, students will practice with patient simulations and bringing up certain topics, like reproduction, with transgender patients. Swenson said case studies and lectures relating to sexual and gender minority patients have been added across the board.
During medical school students' third year, they rotate across seven clinical "clerkships," including family and community medicine, obstetrics/gynecology, surgery and psychiatry. In Swenson’s family medicine classes, she delves deeper into medical management of sexual and gender minority patients, from hormone therapy to screening and prevention in primary care. After students graduate from medical school and begin a residency, Swenson will work closely with a few residents who are more passionate about transgender health care.
"The goal is to try to train all medical students early, to feel comfortable, in taking care of someone who's transgender, even if it's just taking care of them in an urgent care setting," Swenson said.
"That's the goal of the medical school … to make sure that they feel included and not excluded from the healthcare system," Swenson said. "And I think that the curriculum that we’re doing now is really helping. I think our next generation of doctors will be more inclusive."
Supervising editor is Katherine Reed.