“It’s this sort of dread that hangs over me,” says D. “The fact that medical care — even if I can pay for it — might just simply be denied me.”
As a software engineer, D., who has asked to be identified by her first initial to avoid harassment, has stable circumstances and access to reasonably good health insurance. And yet, as a transgender woman in the United States, when she sought gender-affirming care later in life, she soon ran up against barriers that discourage and restrict access to this essential medical treatment.
Living as a trans person in the U.S. means moving through the world with a gnawing and ineradicable anxiety: to know that lifesaving health care might very well be denied you. “Therapy can’t do a lot for it, because it’s exogenous,” D. told Truthout. “It is not a problem with your perception of reality. It is reality actually being shitty.”
This is, as D. said, the grim reality for much of the U.S. trans community. Despite advances in the availability of transition treatments in recent years, accessing gender-affirming care has always demanded that patients overcome major hurdles and wend their way through labyrinthine bureaucratic processes, seemingly designed to discourage those in need and further immiserate one of the nation’s most dispossessed populations.
And for many — especially trans patients who are also people of color, are living in poverty or are members of other marginalized groups — the trials involved in accessing gender-affirming care only compound the depredations already inflicted on them by socioeconomic injustice and the for-profit health system.
Gender-affirming care is a medical necessity, as has been assiduously attested to by experts (among them the American Medical Association, the American Academy of Pediatrics, the Endocrine Society, as well as many others). Yet for the 1.6 million trans people in the U.S., the process of actually receiving that care — even with insurance — can be a grueling undertaking. Exclusionary obstacles present themselves at every step of the process, with the result that far too many people in need are filtered out, unable to clamber over one wall or another.
D. told Truthout that from a young age, she “was fully aware that I was trans. It was not in dispute.” But for a variety of reasons — from fear of social disapproval and career consequences to the daunting expense and logistical difficulty — “I had basically internalized that I was not going to transition,” she said. “I was just suppressing it.” She existed in this psychologically torturous state for two decades.
Socioeconomic circumstances prove to be, in the first instance, major determinative factors in a person’s possibility of transition. In part due to an unemployment rate that runs triple the national average, the trans community is disproportionately likely to be unhoused. (One-third of trans adults have been at some point in their lives). If living on the streets, they’re often excluded from shelters. They are not infrequently denied rentals by landlords and turned down for jobs.
They face continual violence, high rates of poverty, suicidality, workplace discrimination, substance abuse disorders, and other mental and physical health struggles. Trans minors are regularly made homeless by disapproving parents. A quarter of trans people 18 and older make under $20,000 a year. These disadvantaging factors are especially salient for trans people of color, who live at the intersection of multiple vectors of injustice.
Between a once-ubiquitous misconception that persisted for far too long in the medical establishment (as late as 2019) and the current inundation of right-wing propaganda, it’s worth reiterating that being trans is not a mental illness. Rather, the inability to live as one’s real gender, in a forced state of gender dysphoria, causes immense strain, producing or aggravating mental illnesses. As a 2016 review of existing medical literature stated that, “although the levels of psychopathology and psychiatric disorders in trans people attending services at the time of assessment are higher than in the [cisgender] population, they do improve following gender-confirming medical intervention, in many cases reaching normative values.”
In other words, trans people suffer unduly not from their transness, but from a society that, by deeming them less-than, forces them to live in a state of dysphoria. Despite gains in visibility and acceptance, the trans community has been subjected to a vicious culture-war backlash as the reactionary right has seized upon the fact of their existence and warped it into a threat, with horrifying legislation following in red states soon after.
These factors have acted in combination to leave, at present, roughly 13 percent of trans people without health insurance. (After the Affordable Care Act’s passage, trans insurance rates had actually risen to 17.4 percent — only to fall to a new low of 8.3 percent in 2016.) The uninsured contingent has no recourse to gender-affirming care, to say nothing of other essential medical treatment. They have the latter in common with the 27.2 million people in the U.S. who went uninsured in 2021.
Insured or not, trans people’s interactions with the health care system can be off-putting, to say the least. According to respondents to a 2015 survey by the National Center for Transgender Equality, “One-third (33%) of those who saw a health care provider in the past year reported having at least one negative experience related to being transgender, with higher rates for people of color and people with disabilities.”
Negative experiences ranged from providers that were unaware of trans peoples’ particular needs, up to and including being “refused treatment, verbally harassed, or physically or sexually assaulted.” These traumatic outcomes were more common “for [trans] people of color and [trans] people with disabilities.” In addition, “23% of respondents did not see a doctor when they needed to because of fear of being mistreated as a transgender person, and 33% did not see a doctor when needed because they could not afford it.”
Claims Denied Are Lives Denied
Trans people who, like D., do have insurance still must clear quite a few obstacles on their way to receiving proper care. Among health insurers, coverage of trans care is uneven at best. Though some policies do outright deny care (which can amount to unlawful discrimination), oftentimes, insurance policies simply do not clarify whether or not they cover gender-affirming surgeries or procedures. There’s a systemic lag of sorts in catching up with the modern understanding of trans needs. In many cases, policyholder requests for transition care are not denied because care is explicitly excluded but rather due to a lack of clear language and specificity in policies.
This ambiguity remains commonplace across large parts of the country: 26 states have no legal protections requiring that private health insurers provide trans care. Of course, the opposite is often true, wherein states allow, or even mandate, exclusionary policies. Such unabashed bigotry is proliferating as the anti-trans backlash facilitates increasingly onerous restrictions — like the chilling proposed legislation in Missouri, which would effectively ban all new gender-affirming care patients, children and adults alike.
That said, this new wave of hatred is in some respects an illusory phenomenon, driven by media and politicians angling to mobilize their base. That’s not to say that real bigotry doesn’t exist on the ground — but 70 percent of both Democrats and Republicans say they oppose anti-trans laws. Average people, it seems, are likely repulsed by the right’s grotesque campaign.
Regardless, it is the elite that hold power, and as such, a series of explicitly bigoted bills have been added to the unjust regulations already on the books. Arkansas, for instance, “specifically permits insurers to refuse gender-confirmation care,” reports Thomson Reuters, while “Ohio allows providers to deny care and insurers to refuse payment when the services violate their ‘conscience’ or ‘religious beliefs.’” (A remarkable exception can be found in Colorado, which in 2021 required private policies to cover gender-affirming care; other states have also passed or plan to provide various protections.)
But on a national scale, such scattershot policies allow for the systematic deprivation of medical treatment to persist. Research from the Center for American Progress found that 46 percent of trans people surveyed (and, notably, 56 percent of respondents of color) said that they were denied gender-affirming care by an insurer in 2020. Thirty-four percent reported that in the same period, “a health insurance company refused to change their records to reflect their current name or gender.” Frustrations around name changes, medical records, and related matters are a regular occurrence and can make for discouraging battles of their own.
Other practical difficulties notwithstanding, attaining pre-authorization for an insurance claim for transition procedures means assembling quite a bit of documentation. Prospective patients are also required to write request letters to the insurance company — letters in which they must not only explain their need for the procedure, but in some cases also advocate for themselves by pointedly reminding insurance providers of discrimination law and civil rights.
In a rational system, a doctor’s diagnosis and prescription would be enough to sanction coverage of treatment. In the world of U.S. private insurance, patients are made to beg — and if that fails, fight — so that profit-driven companies might deign to aid them.
D. eventually found herself in a position where she had a reliable income, living situation and workplace insurance. The decisive moment would come when the Supreme Court reversed a Trump-era restraint on the ACA in 2020, meaning that D.’s insurance would now be required to cover a transition option. This led her to conclude, after 20 years of waiting, that her transition was finally possible.
But securing tentative insurance coverage is only the first phase. The World Professional Association for Transgender Health (WPATH) is an organization that issues the WPATH Standards of Care, which are the most commonplace treatment protocols employed by clinicians. In the U.S., most transition treatment programs adhere to these guidelines.
Until September 2022, the WPATH Standards of Care stipulated that patients gain “Real Life Experience,” or RLE, living fully “out” as their identified gender for at least one year to be eligible for genital surgery. Past editions of the Standards of Care had also required participation in employment, education or community volunteering. Attempting to live “out” before transition can be “impractical, undesirable and even dangerous,” as a paper published in the AMA Journal of Ethics explained in criticizing the policy. D., fortunately, began her transition after the RLE requirement had been lifted.
The “informed consent” model of care is an alternative pathway that decenters the dominant role of medical professionals in favor of a collaborative relationship between doctor and patient. More recent Standards of Care editions make greater use of this model, doing away with RLE and some pre-transition requirements, including some of the requisite referral letters. However, WPATH does still advise mental health screenings and psychotherapy before transition, though the exact stipulations can vary case by case. The appropriateness of ordaining therapeutic preconditions is still a matter of debate.
“These standards are based in the concept of nonmaleficence — first, do no harm — and are meant to ensure that gender-affirming medical treatments are not undertaken recklessly,” the AMA Journal of Ethics paper’s authors wrote. “But the [Standards of Dare] bespeak a professional discomfort with, and a degree of uncertainty concerning, treatment for gender dysphoria, as well as a cultural unease with issues of gender identity diversity.”
The WPATH has been subject to enormous amounts of criticism. Some has issued from concerned trans advocates, but anti-trans online attacks and the reams of web pages that denounce WPATH are traceable to both right-wing transphobes and “trans-exclusionary radical feminists,” directed at so-called “gender ideology” and “gender activists.” Fearmongering narratives, particularly around gender-affirming care for the young, have been legitimized and propagated by mainstream journalism and commentators among liberals and the center-right.
Laundering these notions in the respectable press only makes them available as ideological tools, to be taken up by fringe reactionaries — sometimes quite directly, as when New York Times pieces “skeptical” of youth transition treatment protocols were cited to support anti-trans dictates. A New York Times piece was brought up in court in Missouri to evidence the need for an “emergency” gender-affirming care ban; similar events have occurred on at least three other occasions.
It’s only relatively recently that the discursive climate has shifted to this more hostile tone. And just as the current public narratives around transness and gender nonconformity are rife with reactionary fears and misinformation, cultural unease inflects some medical and clerical professionals’ attitudes and actions toward patients who are on their gender transition journey.
Of course, plenty of professionals, perhaps especially those who specialize in working with trans and gender non-conforming people, are empathetic individuals sensitive to trans people’s particular needs. Yet in dealing with insurance agencies, doctors, functionaries of the medical establishment, therapists, pharmacists, and more, trans people have faced everything from unnecessary inconveniences to bigotry and outright violence.
A Question of “Necessity”
Before any procedure could take place, D. still needed to attend psychotherapy, per WPATH’s Standards of Care, and obtain referral letters. Seeking out and booking appointments with professionals, from therapeutic to surgical, is another tedious process. Niche practitioners and trans specialists who are competent and covered by insurance might be unavailable, geographically distant or nonexistent. This is especially so for trans people in red states and/or outside of metropolitan areas.
Quite a bit of research is required to assess, as a layperson, a surgeon or practitioner’s skill and success rate; inevitably, hopefulness about achieving transition is tempered with uncertainty. When it comes to permanent, life-changing procedures, says D., “It’s not just access — it’s access that makes you comfortable that you’re going to have a good result. It’s a terrifying thing, to put this major thing in somebody’s hands when they don’t have any reviews…. That’s an obstacle.”
Securing therapy sessions also proved a challenge, D. told Truthout. “I did have to shop around. It’s hard, near wherever you are, finding somebody that actually has experience with trans people.” She also described spending long hours poring over information online and traveling long distances to meet a new primary care physician so that she could begin hormone therapy.
The demands of complicated paperwork, geographical distance, and other factors can preclude people who lack certain assets or abilities from transitioning: English-language skills or a facility with technology, for instance, as well as privileges like a vehicle and/or driver’s license, computer ownership or internet access. (Many who decide to live as their preferred gender also underestimate the true expense of replacing an entire wardrobe, D. points out.)
Finally, in the case that a person seeking to transition has everything from the relative privilege of employment and housing, adequate income, accepting social circumstances, and not only an insurance policy but an insurance policy that covers trans care — if they have all this and the confidence to pursue transition and to advocate for themselves along the way — barriers to a full transition still remain.
Whether or not a given procedure has been determined to be a medical necessity (either in the broad consensus, or by a specific doctor for a specific patient) is often irrelevant to insurance coverage. Contentious questions of what is necessary and what is merely “cosmetic” arise when patients pursue more thorough treatments to change their appearance.
To the extent that gender-affirming care procedures are covered by insurance, they’re often limited to “top” and “bottom” surgeries: chest surgeries like breast augmentation or mastectomy, and procedures like hysterectomy, vaginoplasty or phalloplasty, respectively. Hormone treatment regimes are also generally covered. But those who feel that achieving an effective transition requires further work are often left to pay out of pocket.
D., for instance, has not been able receive gender-affirming care beyond top and bottom surgeries and hormones. “With my current insurance, electrolysis [for hair removal] is one of the things listed under the large, ‘potentially cosmetic’ section,” she noted. “That [also] includes facial feminization surgery, that involves body sculpting, fat transfer things, stuff like that.”
It’s possible to request coverage of these additional treatments — though insurers will not relent easily. “If it’s on the ‘potentially cosmetic’ list, you have to submit documentation that suggests why this is medically necessary — generally speaking, it’ll be therapists’ attestations, and maybe a thing from the surgeon,” D. said.
But it’s almost as if the system demands proof of one’s dedication, since the first request is almost always immediately denied, D. said. “That’s just what happens. They will never approve it the first time. You have to expect to be denied, and then go back and start the appeals process. Submit the same documentation, then more documentation, and then keep trying and trying and trying.”
Attempting to have further procedures covered, along with almost all aspects of dealing with insurance and trying to receive care of any kind, demands tremendous amounts of effort, and the determination to confront ponderous and unsympathetic bureaucracies. Yet at least for a few trans people in the U.S., it has not always been this way. Before the transphobic backlash, during an era of burgeoning acceptance, when trans characters and actors were appearing on popular television shows, some major companies — Starbucks, Microsoft and Amazon among them — had made a show of offering extensive trans coverage.
D. had “considered getting a second job at Starbucks, or doing warehouse stuff for Amazon, just so I could get that insurance that would actually cover electrolysis and facial feminization. I have a living wage, but I can’t afford $40,000 out of pocket for facial surgery.”
Non-negligible numbers of trans people ended up working at Starbucks — yet the on-the-ground realities proved to be less rosy than the ad spots. (Starbucks eventually gave the game away that their commitment was more about public relations than moral obligations when they threatened to rescind trans health care at locations that unionized.) The corporate world cannot be relied upon to furnish social health care; the instant that care priorities conflict with those of profit, the former will be sacrificed.
Lifelines in a Callous System
Trans people have been done an incalculable disservice by the farcically exploitative private insurance system, and the consequences can be just as fatal as a terminal illness. (Per Consumer Reports, a National Center for Transgender Equality survey found that, “The attempted suicide rate among transgender people […] was a shocking 40 percent, compared with less than 1 percent of the rest of the population.”)
The challenge of obtaining care, while witnessing parts of the country erupt in vicious transphobic hatred, takes its toll. As D. put it, “When I first transitioned, things were so much better. It was like the world was finally waking up and growing up…. Then the reactive pushback came, and continued to get worse and worse and worse.”
The health care disparities that trans people must cope with can be exaggerated as a result of their particular needs and social position. But similar effects can be seen among low-income households and the working class, people of color, and other disenfranchised populations. If a trans person shares these other identities, their challenges may multiply commensurately. But regardless of the patient, it is unconscionable that U.S. residents are subjected to such suffering: Consider the estimated 1 million medical bankruptcies in 2015, or those whose attempts to avoid health care costs ultimately cost them their lives.
There is, however, a lifeline: Though state-to-state its policy coverage is still a patchwork, the low-income health program Medicaid, after its expansion under the ACA, has become a critical path — the only path, for many people in need of transition — to receive gender-affirming care. With a total of 276,000 trans people enrolled across 25 state Medicaid programs plus D.C. that explicitly cover trans procedures, a full 60 percent (164,000) of the trans people on Medicaid have protected access to gender-affirming care.
Though 14 states pointedly exclude trans health care, and 18 remain ambivalent, with no clarification on the matter, federal statues and constitutional law have ensured some level of care provision. Such high-level civil rights strictures have facilitated court challenges to care bans, as research from the University of California, Los Angeles’s Williams Institute has documented.
Of course, current services must be vastly expanded to meet the entire population’s needs; a Medicare for All, you might call it. This is far from a utopian pipe dream, as the manifold examples of humane health care systems in developed countries throw into relief the absurd cruelties inflicted on the U.S. public. There is no shortage of evidence or counterexamples. The denial of adequate health care to the U.S. public is no less than social murder. It is a grievous state of affairs, and one that need not persist — but for the profit incentives of private corporations and the state’s subservience to capital.
Asked how her life would change if universal health care were to become a reality in the U.S., D. told Truthout that, “It would be like … I can breathe again, and it feels so good…. It’s like the world is different. And if this happened, I guess it would be.”
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