Transgender Health Care at its Best is Still Pretty Bad
This is what the system looks like when it’s working.
By Milo Wissig
Last year I decided to have a hysterectomy.
I don’t want to bog down this story explaining why I wanted the surgery, or the mechanics of how various configurations of reproductive organs and hormones work together. It was something I’d known for years I was going to do eventually, but no rush, because the procedure involves internal organs that don’t affect my life much unless something goes wrong.
The possibility of something going wrong had become more of a worry. There have been intermittent shortages of testosterone. There was constant talk of the US government trying to restrict access to health care for trans people, and access to abortion. Having a uterus was a liability. I thought of Robert Eads, the subject of the 2001 documentary Southern Comfort, a trans man who died of ovarian cancer after over a dozen doctors refused to treat him because he was transgender.
These details are relevant to the story: I’m a trans man, my pronouns are he/him, and I’ve been legally male in the state of New York for maybe eight years now.
I live in New York City, where I have access to an LGBT health center that can connect me with a wide network of trans-friendly doctors and services. If it becomes legal to deny me care on the basis that I am trans, in a non-emergency situation it is very likely that I will still be able to find someone to help me. If I lived somewhere more remote, or more conservative, the transphobic doctor might be the only one in town. I’ve heard trans people out in the country talk about five-hour drives seeking medical care.
I assume the situation for cis (non-trans) people in those parts of the country isn’t great either. Access to medical care in the US is pretty bleak, and when cis people see us demanding the right to transition-related care it can make us look entitled. Many people lack access to basic health care, while medical transition is commonly thought to be frivolous or cosmetic. It makes it look like we’re asking for more than everybody else gets.
Even in the best possible circumstances, and as a college-educated white man with fairly stable housing in a major city I’m just about as privileged as you can get, there are situations outside my control. The LGBT clinic I go to isn’t a hospital. They do primary care but provide no emergency services, and there isn’t any way for me to request a trans-friendly ambulance. Perhaps the most well-known case of medical neglect due to trans status, Tyra Hunter died in 1995 because paramedics were too busy mocking her to give her proper treatment.
Doctors and EMTs are responsible for the care of everyone, they’re trained, so it’s upsetting to think of them as capable of discriminatory practices. But every once in a while you run into one who treats you like a jailbroken phone; medical transition violates the warranty on your body and makes it ineligible for repair. Or who simply thinks of you as subhuman: assumes that transgender people belong to an underworld of undesirables, already effectively dead to polite society, and will not be missed when we disappear. This is not the person you want to meet by chance when you are dying. The hospital that was built in Central Park to take COVID-19 patients (which of course, did not yet exist when this story takes place) is run by a church that makes its doctors sign an anti-LGBT pledge.
Even when discrimination is illegal, it still worries me, because the ability to sue doesn’t do me much good if I’m dead.
The story I’m about to tell you is one where everything works out in the end.
That’s something I want to emphasize because it may sound at some points like a series of complaints. To an extent, it is. It’s a list of things that could have gone wrong but didn’t, because I always had somebody to back me up. In an ideal world, I would have both a lack of obstacles and an army of advocates on my side, but most trans people have neither.
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I had just gotten back on Medicaid and figured I wouldn’t be able to afford the surgery on regular insurance, so I decided it was time to finally do it. I asked my primary care doctor how to proceed during an appointment, and he sent me upstairs to talk to a case manager. The receptionists seemed confused and acted like I wasn’t allowed to be up there, and I later realized that the office was simply closed for the day and that they for some reason failed to articulate that to me.
The world of transition-related care and legal documents revolves around letters.
They are a relic of an archaic system that pretended to decide if medical transition was the right choice based on psychological evaluation, but more often did so based on stereotypes and aesthetics: trans women were often told they weren’t ready for hormones because they were seen wearing jeans. The frameworks used to decide who was “really trans” were built around the ability to pass as cis, then gradually molded into something resembling psychology as trans people fought for inclusion and agency in our own care. But the process of evaluating a person to decide whether they should be allowed to transition will always be rooted in a bunch of creeps deciding whether a woman is a woman based on how pretty she is. It’s a long story, but nobody who’s ever tried to restrict our bodily autonomy has truly had our best interests at heart. Modern trans health care uses an informed-consent model to access care. But insurance companies don’t believe in informed consent.
When I had top surgery, (trans people casually refer to surgery on the chest or breasts as “top” and genital surgery as “bottom”) I didn’t get any letters. Insurance coverage of trans surgeries was rare at the time, and I made a point of finding a surgeon who believed in the informed consent model. I was incredibly privileged to have the support of my family, who paid for the surgery out of pocket. My surgery was initially scheduled for a year from when I made the appointment, but I was able to reduce the wait to six months by snapping up someone else’s canceled spot. It was on the winter solstice, and I spent my birthday and Christmas recovering in San Francisco, drinking hotel wine and eating crab and walking in the redwood forest with surgical drains in my chest.
Until very recently, it wouldn’t have been the insurance companies that required the letters, but the surgeons themselves. I would have been getting approval simply to have the surgery and would have had to pay the price of a decent car for it. Upfront. No credit. Bottom surgery generally costs the price of an extremely nice car or a small house.
My clinic using an informed consent model didn’t allow me to have surgery on-demand; it simply felt that way because the major hoops I had to jump through were things I had already done long ago. The letters had to confirm that I’d been taking hormones for at least a year, and I’d been on them about a decade. For other trans people, many who can’t or don’t want to take hormones at all, this is a serious roadblock.
My insurance company required three letters: one from my primary doctor, one from a psychiatrist, and one from a psychologist. Since my clinic believes in informed consent, it didn’t require me to go through months of therapy to get those letters, but I did have to make appointments and meet with them and then make sure the letters were addressed to the correct surgeon. Every time I found a new surgeon who I was sure would do the surgery, I had to have the letters written again.
This was a problem because I wound up talking to five surgeons before actually finding one who could operate on me.
A hysterectomy is a pretty routine surgery. There are tons of surgeons who know how to do it. Compared to trans-specific surgeries that can have waitlists years long, hystos are basically on-demand. So I thought I’d be able to ask for a recommendation, get a consultation, do whatever pre-surgery testing they had to do, and everything would be ready to go.
Cis women are typically told that they have to be married, have had children already, have their husband’s approval to get any kind of sterilizing procedure like this done. The fact that I have a path toward doing this at all means I’ve been given greater bodily autonomy than a lot of cis women get, in this particular instance. I hope it is understood that taking autonomy away from trans people is not what needs to be done to make things fair.
I called the clinic and asked them to refer me to a surgeon. I waited several weeks for a call back, realized they had forgotten my request and called again. There was some confusion over the phone over what kind of surgeon I needed: a cosmetic surgeon, a gynecologist, or a urologist. I was confused by the fact that they did not know, and gradually became deeply familiar with the fact that the receptionists are not doctors. Eventually, they set up an appointment for me.
I went into the urologist’s office and told him what I was there for, and learned that I had been sent to him for a consultation for an orchiectomy; for the unfamiliar, the receptionist had somehow misheard my request to have my uterus removed as a request to have my testicles removed. For the even less familiar, I do not have those.
I went back to the clinic in person for all further communication and insisted on talking to case managers; who knows what kind of surgery I could get signed up for by mistake if I kept trying to go through receptionists. I got contact information for a hospital that had a dedicated program for trans surgery.
The surgeon in that program was the one I’d been told did all the hysterectomies for trans masc people in New York. Friends assumed I was going to see her when I told them I was planning the surgery, but she hadn’t come up in the list of surgeons who took my insurance. The case manager insisted that she did take it. The situation turned out to be more complex: after I set up an appointment for a consultation, the hospital called me back to tell me that while the main hospital accepted my insurance, surgeries on trans patients were done in a special trans wing of the hospital, which didn’t take my insurance.
In other words, they had an entire section of the hospital set up to provide care to trans people, and they were denying care to a trans person because of it.
But I accepted that and moved on; I’d find someone else. The clinic hooked me up with an automated service that matched me with random gynecologists, made appointments with them for me, and texted me the details. This whole scenario put me on edge because I was pretty sure none of these doctors had been screened beforehand for whether they were trans-friendly, and a gynecologist’s office is an incredibly gendered space. I was afraid that if I walked in unannounced, someone would not be happy that there was a man there. There was an extent that I’d be willing to put up with being misgendered, traumatized, or humiliated to receive the medical care I needed, as well, but given the option, I wouldn’t trust a doctor who openly disrespected me with my unconscious body.
So after an appointment was made for me, I called the office and told the receptionist who I was and what I was there for and asked if that was alright. She said that was fine, that they see transgender people there, and everything seemed alright. I got a call back a week later, a few hours before the consultation, telling me that the surgeon had canceled the appointment because she doesn’t do hysterectomies for the purposes of gender confirmation; only for reasons like cancer or cysts. I was told to call a program that specialized in trans patients: one I already knew didn’t take my insurance. I contacted legal resources to find out if this constituted discrimination. I was, though pretty distraught, only inconvenienced because I was sure I could find someone. But I felt I was setting a bad precedent if I didn’t say anything. I was told I could file a complaint online. I ultimately never acted on it, because I was too busy dealing with the surgery.
The system matched me with another surgeon, and I went through the same process, but the appointment wasn’t cancelled. Instead, I arrived at the office to find that the windows were boarded up. It was an abandoned building. I wondered if I’d been pranked. But there was a note on the door, saying the office had moved to a new location. The automated system had given me the old address. I walked about half a mile to the real office.
It was the women’s health section of a doctor’s office. Going in made me feel like an invader. As a man, I don’t want to intrude into a space for women, but there is sometimes no other way to access the resources I need. The walls were covered in posters designed in various ways to be affirming to womanhood. A large television was tuned to Dr. Oz, at one point switching to a show that seemed to be about using Miley Cyrus as a framework to doubt the existence of bisexuality. But the intake form I filled out asked me detailed questions about my pronouns and gender that didn’t simply assume that I was a woman, and I didn’t catch anyone in the waiting room giving me any strange looks.
The doctors themselves turned out to be great. They were clearly experienced with trans patients and knew exactly how to talk to a trans man respectfully about his body. But the surgeon my appointment had been scheduled with told me that he did not personally know how to do the laparoscopic surgery that was appropriate for this operation and that the doctor who did was not in the office that day, so I would have to make another appointment and come back another day when she was there.
So, finally, a few weeks later, I met the fifth surgeon, we discussed the mechanics of the surgery, everything was cool, and she told me all I had to do was get an ultrasound to make sure everything was where she expected it to be once they got in there.
I expected this to be an uncomfortable experience, but relatively simple to arrange. I was wrong.
Between every conversation I had with a doctor, I returned in person to the LGBT health centre and spoke with a case manager. The current case manager suggested I go to the radiology lab just a block away, and that I ought to just walk in and ask if they could do the lab right then. I had a printout of the referral the gynaecologist had written for me, and brought it to the front desk.
The receptionist told me that because of my insurance, they could only accept a referral from my primary care provider and that the procedure had to be pre-authorized by my insurance before they could even book an appointment. I went back to the clinic and asked the receptionists at the referrals department to send a message to my doctor with a copy of the original referral, asking for him to essentially make a copy with his name on it. I waited for weeks and it never came. When I finally asked what had happened, I was told that my doctor didn’t understand why he had to write a referral for me when I already had one from the gynaecologist. I asked them to send a second message, fully explaining the situation.
I began to receive letters in the mail telling me that my insurance had rejected coverage of a breast ultrasound. If you’ve forgotten me mentioning it, I do not have those.
I finally called the gynaecologist and explained the situation, and she told me that the insurance authorization was something she could do with the referral she’d already written: my PCP didn’t have to write a new one. After making a few phone calls, I got authorization codes for the two ultrasounds I was having and was able to relay them to the radiology centre. They approved the appointment. The test itself, needless to say, feels pretty weird: imagine the technician is playing Mario Kart on a monitor behind you, and the joystick is a dildo wrapped in crunchy plastic. It feels a lot bigger than it is.
I had already scheduled the surgery at this point, and in fact had already gone to the hospital for the pre-op appointment, which meant I had to have the surgery within a month. I was afraid I was going to have to do all that again because it was taking so long to get approval for the ultrasound. It had actually been several months. I wondered if my insurance company was making it so hard to get an ultrasound because it’s a prerequisite to abortion in some states — just in case I was trying to get an abortion, they’d make sure I had to wait a few extra months for it.
The surgery was in a regular hospital in Brooklyn.
This is only notable because when I had top surgery, it was at 450 Sutter St in San Francisco, not a hospital at all but a skyscraper whose lobby is gilded floor-to-ceiling with faux-Maya carved glyphs like the queue of a Disney ride. That surgeon, in his office (a different building), sat on an oversized purple plush Lakers throne surrounded by life-sized chrome statues of torpedo-breasted women and countless tracings of the same photo of a dachshund that he kept beneath the glass of his desk. But this was just an ordinary hospital.
For the most part, the details of the surgery itself aren’t important to the narrative; it went well. While I was waiting to go into the OR an anaesthesiologist asked, “Are you sure he has a uterus?” and my surgeon muttered, “Who the hell is this guy?”
My surgeon did a good job of advocating for me while I was in the hospital. She shouldn’t have had to. I didn’t find out that she had prescribed me actual opioids and the nurses were just giving me Tylenol until she came into the room and asked if I was getting my meds and I said I didn’t know what I was supposed to be getting.
My friend visited and took a selfie with me.
A couple of friends visited me in the hospital. I had to stay there overnight. I was given a nice private room, with a private bathroom, in the transplant section of the hospital. The food was pretty good, mostly because I hadn’t been allowed to eat for most of the first day. My friends weren’t allowed to bring flowers into the room because they’re not sterile, so I got shown a picture of a nice bouquet that was supposed to be for me.
I stayed with a close friend after the surgery, so he could help take care of me during recovery. But I was wary of staying too long, because a few years before, in another, incredibly traumatic situation, he let me stay with him and his former partner became intensely jealous. I felt like I was ruining his relationship if I asked for either a place to stay or emotional support. Things have changed, but I have been afraid of taking up too much space ever since. To care for someone after surgery is a large favor, and the feeling that I could not possibly ask anyone for such a thing was one of the reasons I had put off the operation.
A while after I went home I received a bill from the radiology lab for $900.
I called my insurance company and asked them why I had been sent a bill when I had gone so far out of my way to get pre-approval for the procedures. The insurance representative told me that the radiology lab was out of network.
I was shocked. Why would they have approved everything in advance only to tell me they’re out of network months after the fact? I gave them my insurance information and they had plenty of time to process it. They refused to make the appointment until after they did. How could they take that back months later?
I became afraid that, if I was being billed for the ultrasound, the hospital might try to put me on the hook for the cost of the surgery, too. If they could just retroactively revoke approval for a procedure that I had already had, who knows how much they might expect me to pay. I was afraid that I’d made a mistake somehow, that I would just be told that as a patient I should have had a better knowledge of the minutiae of insurance policy than the people whose jobs it is to work with it.
After discussing the issue with a case manager again, expressing fears that if I marched into the lab to tell them I wasn’t going to pay my bill they might call the cops, I returned to the radiology lab and asked them to look into the bill. After a bit of a wait, someone sent up a piece of paper from the back revealing that they weren’t out of network at all. My claim had been rejected because the gender of the procedure didn’t match the gender on my ID.
This surprised me not only because the insurance representative had lied to me over the phone about why I had been rejected, but because the same company had approved the hysterectomy with absolutely no problem. And because the nature of the rejection lies in denying that I had a uterus when I had a procedure that resulted in pictures of it.
After giving me this information, no one at the lab seemed to think any action was called for, so I returned to the case manager yet again. I think I spoke with at least fifteen people in person over the matter of insurance alone.
My case manager (I don’t have a specifically assigned case manager, I just see whoever happens to be in) called the insurance company. Considering how the conversation had gone when I had called from home, I thought the authority of having a representative call on my behalf would pressure the company not to engage in discriminatory behaviour.
The insurance rep told us that they would be perfectly willing to pay the radiology lab, but someone from the lab would have to call them directly and ask for the money. She told us the company would work on a resolution to the problem.
I went back to the lab a second time. I felt that the receptionist was about to tell me to call my insurance, so I cut her off: “My insurance company told me that someone from the lab has to call them and talk to them. I’ve already talked to them, and I’ve already been here before.” So, I was ushered through an unfinished room strewn with extra furniture, into the billing offices.
One of the employees in billing had a very long back-and-forth with my insurance and I was ultimately told that the company had no record of ever speaking to me or to my case manager about the issue in the past. I was told that they were working on it and to wait for a call.
After a few weeks and no call, I went back to meet with a case manager to inquire about whether getting a lawyer involved would be called for at this point. She made one more call to the insurance company first.
Finally, after being put on hold for a very long time, we were connected with someone higher up in the company. He was an incredibly arrogant man who seemed to belittle our every problem while simultaneously solving it. He revealed that since our last call, the insurance company had done absolutely nothing. Someone had actually been assigned to deal with the issue, apparently, and just hadn’t done it.
A bunch of questions about my gender followed — whether or not I had transitioned before or after I started the insurance policy, whether the surgery I had was “the one that changed my gender.” The case manager struggled to explain that the premise of the questions was wrong while trying to figure out what information he was actually trying to get, which I believe was whether I had changed my legal gender marker after signing up with that particular insurance company.
We learned that the reason that the ultrasound had been rejected while all other apparently gender-incongruent procedures had been approved without question was that requests for imaging were handled by a different company. There wasn’t any way for that company to look into my records and see that they were questioning whether I had ever had a body part they had agreed to pay to remove.
The person who had been dealing with the case before believed they had no way of dealing with transgender people in their filing system, he told us. That seemed absurd, because a company that deals with the medical needs of millions of people will inevitably have dealt with trans and intersex patients before. The entire field of medicine revolves around the idea that bodies do not always do what we expect them to. But it was simply a matter of the codes used for these procedures for a trans patient, he told us, being obscure. So he’d just find and put in the right codes.
He said a number of mildly offensive things while the case manager got increasingly infuriated. I hoped that he wouldn’t piss her off too much, because despite being a pompous ass, everything he was doing was actually helping. He knew that: being the only person who could help me gave him tremendous power. I think we’re all familiar with people who only seemed to want to help us out so they could lord it over us, and make it impossible for us to call them out on it without seeming ungrateful. I suspect that’s the feeling that drives many people who don’t want free health care or other social services to be available in the US: they’ll have an eternal emotional debt to the government.
He closed with this:
It’s illegal for a medical provider to bill someone on Medicaid.
Even if insurance rejects the claim, the provider has to eat the cost.
So in addition to the insurance company being unable to deal with trans people, the radiology lab itself — the one the LGBT health center had recommended — was being predatory.
I don’t know how they chose to resolve it in the end, but I never saw another bill.
I switched to a different insurance company as soon as I was able; in fact, I may have done so out of frustration with how they handled the surgery before the billing situation even came into the picture.
I consider this story to be an example of the system working because ultimately it gave me the tools I needed to resolve all of the problems within it. For every obstacle, a resource was available to me that helped me overcome it. Ultimately I got what I needed and suffered no lasting negative consequences. I was never in a life-threatening situation and never faced financial ruin, and for that, I am very privileged because that is often not how these things go. The majority of trans people, even when medical discrimination against us is illegal, still don’t have the resources I had. Without legal protections against discrimination, many trans people whose access to care is limited will have nothing at all.
I wrote this story because the Trump administration ruled to remove those protections two days ago.