Shunning Medical Hoops, Transgender Patients Turn to ‘Informed Consent’ Model
In Kai Devlin’s first year on testosterone, he saw five doctors—including one who insisted on manually examining his genitals before renewing his prescription, and another who refused to treat transgender patients because he “didn’t agree with it.” Devlin initially sought hormones using the conventional route, asking a long-term therapist for a recommendation letter which he then gave to an endocrinologist; every new doctor required another long attempt to “prove” his transgender identification.
Finally, the 24-year-old trans man visited Chicago’s Howard Brown Clinic. Instead of requiring a lengthy qualification process, Devlin was processed in Howard Brown’s two-year-old Transgender Hormone Informed Consent program: After a full physical, a meeting with an advocate, and an overview of the side effects of taking hormones, Devlin was given a prescription.
“If a person is walked through the positive and negative effects with a counselor and/or physician, then they have a right to make their own medical decisions,” Devlin wrote in an e-mail. “I think informed consent is one of the best things available.”
Devlin is one of many transgender patients using alternative clinics to access hormone therapy, a common step in medical transition.
While much media attention is paid to gender confirmation surgery, it’s hormone replacement therapy that often makes the largest difference in the lives of transpeople. Patients frequently report that hormone therapy makes their body feel more comfortable or more like home—more importantly to many, hormones masculinize or feminize the body, helping trans people be read correctly as their gender.
But accessing these hormones can be very difficult, even for patients who are assertive and aware of what they want. Doctors often follow outdated standards, requiring a pathological diagnosis, extended counseling, or even a dangerous “real life experience” period in which non-passing individuals must live in their preferred gender role. Rather than jump through these seemingly endless and expensive hoops, trans people sometimes turn to dangerous black-market alternatives.
Fortunately, there’s an increasingly popular alternative: clinics like Howard Brown, which offer transgender patients hormone prescriptions using an “informed consent” model that centers a patient’s autonomous choice.
Clients at many of these clinics [PDF] can acquire a prescription for hormones after basic laboratory tests, a consultation about hormonal effects, and signing a waiver stating that they know the risks of treatment.
“When we're working with clients as therapists, the goal is to help people self-realize. We want to allow space for that when it comes to people realizing themselves in the context of their gender,” Talcott Broadhead, a licensed social worker in Olympia, Wash., told Campus Progress.
Broadhead works under an umbrella called Informed Consent for Access to Transgender Health, and educates both patients and medical professionals, including those who don’t have access to a clinic.
Today, transgender patients are often forced to receive a diagnosis of “Gender Identity Disorder” in order to receive care.
The Diagnostic and Statistical Manual of Mental DisordersFourth Edition lists the criteria as, “a stated desire to be the other sex, frequent passing as the other sex, desire to live or be treated as the other sex, or the conviction that he or she has the typical feelings and reactions of the other sex,” along with “preoccupation with getting rid of primary and secondary sex characteristics (e.g., request for hormones, surgery, or other procedures to physically alter sexual characteristics to simulate the other sex) or belief that he or she was born the wrong sex.”
But a Gender Identity Disorder diagnosis can be considered a pre-existing condition, raising health care premiums for transgender people who go the old-fashioned route.
Worse, the criteria don’t fit everyone—and represent a seriously outdated view of transgender identity, which the medical interpretation has struggled with over the last five decades.
As transgender advocate Julia Serano describes in her book Whipping Girl, transgender women were initially required to conform to very specific gender roles—or even judged as candidates for surgery based on their heteronormative attractiveness.
With the pathologizing of transgender identities came a very strict protocol for healthcare providers serving transgender patients, one that centered a gatekeeper model that often included hefty amounts of transphobia.
“Many trans people had to formulate a story to tell the doctors at that time to get their needs met,” said A. Canelli, a Seattle-based counselor who works with Broadhead. “They found that if you go to a surgeon and say, ‘I was born in the wrong body,’ you would get the care you needed.”
Even today, Canelli sees people in self-advocacy workshops who try to force themselves into that narrative—even though it doesn’t fit many, or even most, people who seek transition-related care.
This mischaracterization of the transgender experience has had far-reaching consequences. As the myth took on a life of its own, transgender people desperately tried to conform to it in order to access necessary care. This often included lying about their preferences or feelings, Canelli said, earning trans patients a reputation for untruthfulness or difficulty.
The informed consent model offers an alternative to all that: A healthcare model that allows patients to make decisions about their care, starting with the assumptions that being transgender is not a mental illness and that a person’s experience of their identity should guide their transition.
While informed consent clinics don’t force patients into extensive therapy before prescribing hormones, they frequently require basic medical testing and a consultation. Laboratory tests establish a patient’s hormonal baseline, but also check for liver function and other physiological factors that can be affected by hormone therapy—going over all the possible effects and side effects of the hormones give patients the chance to make decisions about their own health care.
Transgender people who choose to take hormones take either testosterone or estrogen combined with an anti-androgen, depending on the changes they desire.
Female-assigned people who take testosterone can have facial and body hair growth, a deepening of the voice, and a redistribution of fat, among other effects. Male-assigned people who take estrogen experience breast growth, a softening of face shape and features, and a reconfiguring of body fat into a “female” distribution, along with other changes. Many of these sets of changes are fully desired and welcomed by transitioning people; others take lower doses of hormones or stop them completely after a short period of time, finding comfort in simply looking more androgynous.
In other words, it’s all about autonomy and patient-directed care—and about treating transgender patients like any other patients.
“Informed consent is implied in every medical procedure anyway,” Canelli said. “Any time you go to a doctor, you're already giving informed consent when you walk in the door. Trans people have that extra barrier—which I'm going to call transphobia.”
The definitive World Professional Association for Transgender Health’s Standards of Care were revised last year to explicitly include the informed consent model.
“The difference between the Informed Consent Model and [the new standards of care] is that the [new standards of care put] greater emphasis on the important role that mental health professionals can play in alleviating gender dysphoria and facilitating changes in gender role and psychosocial adjustment,” the new standards read.
But not all transgender people want to pursue long-term counseling. Many simply can’t afford it: A National Center for Transgender Equality study from 2009 [PDF] found that the percentage of trans people living in poverty is twice as high as the national average.
While most insurance companies won’t cover transgender medicine, some transgender patients report that informed consent clinics are willing to work around these limitations. The Howard Brown clinic, for instance, provides a diagnosis of “Endocrine Disorder” on patients’ medical charts, which de-pathologizes trans identity and skirts insurers’ refusal to cover transition-related expenses.
That’s what informed consent comes down to: A model of care that avoids forcing patients into long, unnecessary therapy, and instead sees a transgender identity as an individual experience.
“One of the foundations of ICATH is that we're starting to not only strip the medical community of [the standard] narrative, but give room for people's true experience of transgender identity to emerge honestly for the good of all, to reject the idea that we need to fit into one of the clever pathologies,” Broadhead said.
It is this honest identity that charts the transition journey for each transgender person. In rejecting inflexible standards of care, trans people are claiming their ability to navigate their personal journey on their own, without having to prove their identity to any gatekeepers.
Shay O'Reilly is a reporter with Campus Progress. Follow him on Twitter @shaygabriel.