Dominick Evans, a disability activist and filmmaker, began transitioning in 2003, but he didn’t start hormones until 2011. It wasn’t for lack of interest: He was repeatedly denied access to care due to a labyrinthine series of medical and legal requirements. Many trans people are familiar with these hurdles, which can include obtaining a clinical diagnosis, undergoing counseling, getting multiple recommendation letters, and battling with insurance companies over coverage.
“I wasn’t able to get to a mental-health professional in my county until 2009,” Evans told Rewire.News. “I couldn’t find a doctor willing to prescribe hormones … without a letter” from such a professional, “and the accessible transportation would not take me to the doctor outside my county.”
That landscape is starting to change, though. The rigid standards of care that made it so difficult for Evans to get the treatment he needed are evolving, and a new model is starting to emerge as an alternative: informed consent.
When you go to the doctor’s office because you have a cough, you don’t need a note from a psychiatrist to get an inhaler. Instead, your doctor performs an examination, takes your medical history, discusses treatment options with you, and prescribes an appropriate medication.
Proponents of the informed consent model, like Ruben Hopwood, the Transgender Health Program coordinator at Fenway Health in Boston, say this is how transition services, such as hormone replacement therapy, should be provided too.
Hopwood described informed consent to Rewire.News as “access to medical treatment and care, individualized and appropriate to that person, without the [prerequisite] requirement of a mental health professional’s evaluation to access medical care.”
Understanding the circuitous path that has led to the rise of the informed consent model starts in 1979, when the World Professional Association for Transgender Health (WPATH) published its first edition of the Standards of Care. The health-care community came to use the standards as a guiding text for providing services. So did insurance companies, which can ultimately determine whether someone is able to receive care by offering, or denying, coverage. Some, for example, refuse to pay for care when a patient doesn’t have a diagnosis of gender dysphoria. There’s no legal requirement that medical providers must follow the WPATH guidelines, but their widespread adoption and standardization has made them the de facto rules of the ballgame.
The Standards of Care, now in its seventh edition (published in 2011), initially placed a strong emphasis on the role of mental health professionals. Rather than taking trans patients at their word, providers were advised, they should instead require extensive mental health screening to confirm that patients truly had gender dysphoria, paired with evidence of successful social transition or “real-life experience,” before considering whether patients should receive access to medical transition. The guidelines were heavily influenced by Dr. Harry Benjamin, a pioneer in transgender care, and were sometimes called the “Benjamin Standards.”
It’s also worth noting that although WPATH may have established itself as the world’s expert on transgender care and have trans representation included in its membership, the organization’s leadership seems to stress academic credentials over lived experience. This was seen at the 2017 USPATH conference, when trans activists challenged the inclusion of Kenneth Zucker, a proponent of “gender reparative therapy” for trans kids. Even “stakeholder” members of the Standards of Care, version eight, committee didn’t need to be transgender.
According to these guidelines, in order to access transition care, patients had to demonstrate “eligibility and readiness” determined by a third party, receiving referral letters from a mental health professional—sometimes two, depending on the specific care sought. Treatments that could result in sterilization, for example, required a second letter to confirm that a patient had been evaluated and fully understood the consequences of the procedure or treatment. By contrast, cis patients opting for sterilization or receiving medical treatments that cause sterility—like a hysterectomy for uterine cancer—also require informed consent, but not psychiatric approval unless a primary care provider feels counseling is advisable in a specific case.
“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. But the [Standards of Care] 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,” a team of physicians wrote in the AMA Journal of Ethics in 2016.
For trans people, this level of “gatekeeping” can be a source of frustration. Patients like Evans may wait months or years to get referrals, complicated by tangles with insurance companies and transphobic attitudes from care providers. The trans community has infamously high rates of mental health conditions, but researchers also know that access to transition care can alleviate these symptoms, highlighting that the stakes of being denied access to transition services can be quite serious.
Enter informed consent, which Hopwood notes is actually part of the current WPATH guidelines, even though they still emphasize the role of mental health professionals. At Fenway, mental health services may be part of a patient’s treatment plan, but they aren’t required, nor are they the starting point; instead, care providers may refer a patient if counseling might be merited. For example, Hopwood said, patients with schizophrenia, bipolar disorder, or other mental health conditions known to be associated with psychosis may be asked to meet with a mental health provider and establish a relationship so that if complications develop as they start taking hormones, they’ll be able to quickly access care.
When patients arrive at Fenway seeking gender-affirming hormones, an initial visit involves taking a medical history, conducting an examination, and discussing what brings the patient to the clinic—if that sounds much like any other medical appointment, Hopwood said, that’s part of the point. Informed consent “is the norm of medical treatment. We’re just applying it to a population where it hasn’t been able to be applied, because of social views and stigma,” he said. “Most of us feel pathologized and overburdened with paternalistic health care systems,” he continued, and Fenway strives to avoid that.
Once a patient is stable on hormones, periodic followups ensure they’re doing well, as with other long-term medications.
Fenway’s standards for connecting patients with surgical care are similar, though Hopwood notes there is a waiting list because access to surgery is in high demand. In the case of bottom surgery, staff also take care to ensure that patients understand the future fertility implications, and are provided with access to a range of information to help them make the choice that works best for them—which could include delaying surgery, storing eggs or sperm, or moving forward.
Hopwood said that Fenway’s increased transparency has made it easier for patients to build trusting relationships and seek treatment with confidence. In more than a decade with the clinic, he’s helped it adopt its detailed informed consent standards and medical protocols to reflect the evolving needs of the transgender community.
One of the most controversial elements of the conversation about informed consent may revolve around transgender youth, with some claiming that trans kids are pushed into transition by overeager parents, doctors, peers, or society. Research suggests gender-affirming care can be tremendously beneficial for adolescent trans health, and in many clinics, the approach taken is one of informed consent. But, Hopwood said, that’s informed consent for the whole family—in part because minors cannot receive transition care without parental approval, and also because the clinic wants to make sure youth are supported in receiving care and understand the implications of transition. “We don’t want to come across as having a vested interest in the outcome,” he said, a sentiment echoed by Dr. Angela Turpin, a pediatric endocrinologist at Children’s Mercy of Kansas City, who manages transgender patients.
“We make it a real point to let kids and families know,” she said, “that they can have gender fluidity” without any medical treatment. For those interested in medical transition, “with surgical and gender-affirming hormone therapy, we can help with that.” Her patients also see mental health professionals as part of a care team that provides children and families with support. Some of her trans patients, like a boy she sees for an unrelated endocrine issue, aren’t interested in any medical or surgical transition, and Children’s Mercy supports them in pursuing social transition only.
Among children who are interested in medical transition, the clinic may recommend hormone blockers like histrelin or leuprorelin as children start to enter puberty—effectively pressing pause. “This buys us a couple of years,” she said, “to let them explore their gender identity further.” These medications, which are fully reversible, aren’t provided unless a family is fully supportive. For bone health, she said, her patients do need to either stop blockers or start hormone replacement therapy eventually: “You build bone until your mid- to late- 20s, so we don’t want to put it off for too long.” And while Children’s Mercy may consider top surgery for children ages 16 and up, it doesn’t offer bottom surgery to people under 18, in part because of the serious implications for future fertility.
Children’s Mercy operates on a highly individualized model heavily influenced by informed consent, but just like at Fenway, which also treats pediatric patients, providers don’t “hand out hormones willy-nilly,” Turpin said. Instead, she said, the focus is on allowing patients to figure out who they are, affirming that “it is OK to do nothing” and that there is a continuum of care available for transgender people of all ages.
For trans people, Hopwood said, informed consent represents autonomy and a departure from stigma, allowing patients to make their own choices about their bodies. The individual nature of this model allows care providers and patients to tailor it to individual needs: Some patients may want therapy, for example, Hopwood said, while at other times, clinicians may put the brakes on treatment if they feel like a patient isn’t able to make thoughtful, informed choices.
Within a health-care model that pathologizes trans patients who want to access care, informed consent allows patients to play a proactive role in their health care. While no one’s throwing out the Benjamin Standards yet, Hopwood said, providers and advocates in clinical settings, along with groups like the Transgender Professional Association for Transgender Health (TPATH), are shifting the conversation about what happens when someone picks up the phone to ask for help. Their work is also pushing WPATH to include trans people in leadership and conference committees, acknowledging that trans members should play an active role in the clinical recommendations that shape their lives.
Ultimately, the goal is one of appropriate care for every trans patient—no matter their gender or where they are in their journey.