From "genderqueer" to "gender-affirming care," the newest terminology in the LGBTQ+ community does much more than slap a new label on an old idea. The words we're now using to identify patients and their health care needs show that the goals of care providers are becoming more closely aligned with the needs of transgender and gender-nonconforming people.
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The best part? Gender-affirming care isn't just helping a small fraction of the population; it's making health care better for everyone.
What Is Gender-Affirming Care?
Gender-affirming care describes an array of health services that alleviate the suffering associated with gender dysphoria, defined in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as clinically significant distress or impairment related to a strong desire to be of another gender.
But gender-affirming care is more than hormones and surgery. "At its core, it's about seeing the whole person, affirming them exactly as they are," J. Aleah Nesteby, nurse practitioner, former director of LGBTQ services for Cooley-Dickinson Hospital and a clinician and educator with Transhealth Northampton, tells LIVESTRONG.com.
Gender-affirming care isn't just a new way to say "sex change." And that's important, because how trans and gender-nonconforming people's identities and experiences are named and described reflect our broader cultural values of diversity, equity of access and consent.
While language like "sex reassignment" or "gender-confirmation surgery" used to be accepted, today it is recognized that sex assignments at birth are an unscientific guess at best, and that only the individual can confirm their own gender. We don't know everything there is to know about gender, but we know it is evident in early childhood, and no amount of therapy or conditioning can change a person's innate sense of their gender, according to a landmark article in the March 2006 issue of the OAH Magazine of History.
Gender-affirming care allows a patient to change their sex characteristics, bringing their minds and bodies into greater alignment, while continuing to receive a lifetime of competent care from providers who recognize that the challenges people who are trans and gender-nonconforming or nonbinary (TGNC) face are not just medical, but social. This type of care goes far beyond treating dysphoria to acknowledge the physical differences of postoperative bodies and the stress of living with transphobia.
More than 50 years after the first gender clinic (that is, a center that provides transition-related services) opened its doors, gender-affirming care is no longer experimental. The June 2017 issue of The Journal of Sex and Marital Therapy describes it as the best, most effective treatment for gender dysphoria.
The authors behind a March-April 2021 paper in The International Brazilian Journal of Urology agree, adding that gender-affirming care enjoys a very high rate of patient satisfaction. According to the most recent World Professional Association for Transgender Health (WPATH) Standards of Care (SoC), published in 2012, satisfaction rates range from 87 to 97 percent and regrets are rare, topping out at just 1.5 percent.
Who Needs Gender-Affirming Care?
As we mentioned, gender-affirming care directly benefits people with gender dysphoria. About 44 million people worldwide have a diagnosis of gender dysphoria, according to The International Brazilian Journal of Urology paper mentioned above. But estimates like these likely underreport the true figures, according to WPATH.
In previous editions of the DSM, the desire to be of another gender was described as a disease doctors were meant to cure; but today, we embrace a diversity of gender identities as healthy and normal. Still, gender dysphoria can cause distress or impairment, and a person with the condition may want to change their body's primary and/or secondary sex characteristics through hormones, surgery and other procedures.
In the U.S., there are about 1 million TGNC people, a number that is expected to continue rising, according to the January 2017 issue of the American Journal of Public Health. But not everyone who is TGNC wants or needs gender-affirming services.
That's because a diagnosis of gender dysphoria is completely separate from a person's gender identity or sexual orientation. Transgender people, for example, have a gender identity or expression that's different from the sex they were assigned at birth. But that doesn't automatically mean they want to change their sex characteristics, or that this difference causes them the stress or impairment marked by gender dysphoria.
Similarly, people who do not feel strictly like a man or a woman all the time might identify as nonbinary, gender-nonconforming, genderqueer or with another label to describe their gender. Nonbinary people (also called "enby" or "enbies") are a fast-growing demographic, making up about 35 percent of the trans community, according to the June 2019 issue of Translational Andrology and Urology. Like men and women, enbies can be straight, gay, bisexual, asexual or identify with another sexual orientation. And like other trans people, enbies may seek gender-affirming care, or they may not.
For people who do want gender-affirming services, though, this approach to treating gender dysphoria has been overwhelmingly successful, and has been the standard of care for more than 30 years.
Gender-Affirming Care Is Patient-Centered Care
The first U.S. gender clinics only accepted patients who would complete a social, legal and medical transition that resulted in a perfect binary: a heterosexual man or woman who "passed" as such in society, and who retained no reproductive capacities associated with the sex assigned to them at birth.
Retention of reproductive capacity is a human rights issue. In the past, certain areas of the country and some clinics and private practices had policies that required transgender people be sterilized before they were issued corrected documentation of their sex or access to gender-affirming care. These policies are now recognized as a serious breach of human rights.
But obstacles to getting corrected legal documents still exist in some states, and there are medical providers who still insist on sterilization before performing reconstructive genital surgery. Yet patients are pushing back, and finding surgeons who will work with them to achieve outcomes that treat symptoms without sacrificing fertility.
James, who first sought gender-affirming care in 2001, wanted to keep his options open. (Several of the people LIVESTRONG.com interviewed for this story asked to be identified by their first names only for privacy reasons.) Now married, he and his wife are using reciprocal in-vitro fertilization (IVF) to grow their family. In this process, an egg from James is harvested and fertilized using donor sperm; the resulting zygote is implanted in his wife's uterus. James has already gone through one successful round of egg retrieval. If all goes well, his wife will experience a normal, healthy pregnancy, and both parents will have a biological connection with their child.
IVF technology has been available for more than 40 years; the innovation is in putting a high priority on James' desired outcomes from gender-affirming treatment. Under the model of care most doctors used to be trained in, medical experts would assess James, diagnose him and decide how to treat him, all without asking him what he wants.
In the informed consent model, on the other hand — which is the backbone of gender-affirming care — communication between patient and physician is intended to allow the patient to make educated choices about their care. This approach isn't just for TGNC patients: Informed consent increases patient satisfaction across the board. "Over time, most of the prescribing world has caught up to the informed consent model, and now it's seen as the standard of care," Nesteby says.
"Fifteen years ago when I entered practice, the bar was so low for providers in terms of who was considered good and trans competent," Nesteby says. "Now, expectations have changed. Patients, especially younger people, expect providers to talk to them about their options, including what's outside the typical standards of care."
Joshua Tenpenny's experience with gender-affirming care illustrates this point. Tenpenny is a massage therapist who lives as a man and identifies as nonbinary. When he sought genital surgery years ago, he wanted a nonbinary outcome — neither male nor female — so he looked for a surgeon who was open to an experimental approach, he tells LIVESTRONG.com.
The initial procedure was not entirely successful, and the surgeon was reluctant to perform a revision, but Tenpenny says he may try again in the future with another provider to achieve the results he envisioned. All procedures come with risks of complications and failure, and despite the outcome, Tenpenny found that not being confined to a small menu of options for bottom surgery has been an empowering experience.
The History of Gender-Affirming Care in the U.S.
The concept of gender-affirming care first reached most Americans in 1952 when Christine Jorgensen's transition from male to female made headlines. The first gender clinic in the U.S. opened in 1966 at Johns Hopkins. Backed by the most influential professionals in transgender care, the Harry Benjamin International Gender Dysphoria Association — today the World Professional Association for Transgender Health (WPATH) — became the standard-bearer in the early 1980s.
But through the '80s and early '90s, seeking gender-affirming care continued to be an isolating experience, with cruel barriers like the "real-life test," in which people with gender dysphoria were only allowed to access hormones and surgery after six months, a year or longer living successfully in the target gender. For trans people who did not pass, the dangers of the real-life test ranged from harassment, unemployment and homelessness to violence and death.
Today, trans people are rewriting the standards for their own care. The WPATH Standards of Care, which have been broadly adopted worldwide, are in their seventh edition. Authors of the most recent version and the current board of WPATH include trans professionals: people who have a TGNC identity as well as cultural competency and expertise in the medical care of TGNC people. Even more significantly, stakeholders in gender-affirming care — TGNC people, their families and their caregivers — are changing health care for the better, making it easier to access and using informed consent to customize treatment to a patient's individual needs.
These changes are allowing people like Ian, who identifies as nonbinary, to receive the care they want. "When I first learned that the Standards of Care had been updated to include nonbinary people back in 2013, I made an appointment at Fenway Health in Boston in the hope of starting HRT [hormone replacement therapy]," Ian recalls. "I'd known that I was genderqueer and wanted to go on T since 2001, but I hadn't been willing to lie about my identity by pretending to be binary trans to obtain it."
Still, past versions of the SoC continue to influence the law, health insurance practices and guidelines developed by health care providers. Levi Diamond, a 43-year-old trans man, was recently told by surgeons that they would not perform top surgery on him (to alter the appearance of his chest) until he had lived a year in the male role. The current SoC criteria for mastectomy and creation of a male chest in transmasculine patients make no mention of a real-life test, but some providers crafted their own guidelines years ago, based on older versions of these standards, and have not updated their policies to reflect advances in care.
Similarly, Katy sought gender-affirming care after learning she was born with Klinefelter syndrome, a chromosomal difference of sexual development. Genetically XXY, people with Klinefelter syndrome are assigned male at birth. The signs of having an XXY karyotype — versus the more common XY for boys — can be subtle and difficult to discern, and those with Klinefelter syndrome are frequently unaware of their genetic difference from XY men and boys.
After a karyotype test confirmed her doctor's diagnosis, Katy was referred to an endocrinologist. Male hormones are often prescribed to treat symptoms of Klinefelter syndrome, but Katy asked for a prescription for estrogen. Disregarding her request and focusing on her intersex diagnosis, Katy's endocrinologist prescribed her testosterone. By doing so, he exemplified the bias many trans people encounter in seeking care, and the limits of the "pathology" model of care.
After nine months on testosterone, Katy was more certain than ever that male hormones were not for her. Years later, she found a more patient-affirming health care provider and began feminizing hormone therapy, a decision she knew was right within days of beginning treatment. Now 50, Katy has had four gender-affirming surgeries.
Innovations in Gender-Affirming Care
Both acknowledgment by the medical profession that gender-affirming care is medically necessary and laws preventing discrimination against TGNC people have led to an increase in gender-affirming services, according to a February 2018 article in The Washington Post. Coverage by health insurance has created greater access to care, which has also driven demand. The growing market has led more professionals to specialize in gender-affirming services, and more procedures have led to improvements, making treatments safer. Surgical results are also more aesthetic and more functional.
The typical order in which gender-affirming care is applied — mental health services before HRT, then chest surgery, and finally, lower surgery — has not changed, but protocols have evolved, and the sequence is more flexible in patient-affirming care models that use informed consent and harm reduction.
Usually, someone with gender dysphoria begins gender-affirming care with a mental health professional who diagnoses them and helps them decide on priorities and address concerns related to the next phase of treatment. Patients may be referred for hormone therapy in coordination with mental health treatment, or they may be assessed and prescribed by a physician.
It's a common misconception that gender-affirming care must be handled by a specialist. "A lot of people think you need to see an endocrinologist to be on hormones," Nesteby says. "It's not necessary for every person. A lot of cases can be managed in primary care." She compares HRT to diabetes care, which is typically handled by primary care providers.
About 80 percent of TGNC people will seek HRT, according to Jerrica Kirkley, MD, co-founder and chief medical officer of Plume, which provides gender-affirming care using telemedicine in 33 U.S. states. HRT in TGNC patients usually involves administering estrogen, testosterone and/or hormone blockers to achieve blood levels typical among cisgender people.
In the late 1960s, transgender patients were warned their surgical outcomes from what's collectively called "lower surgery" or "bottom surgery" would not resemble the genitals of cisgender women and men. For trans women, a vagina that could be penetrated by a penis was considered the only functional goal of surgery. By contrast, in the November 2013 issue of Sexual and Relationship Therapy, researchers note that patient satisfaction is now a well-accepted tool for measuring whether a health care service has been successful.
By the late 1980s, surgeons offered vulvoplasty — creation of the labia and clitoris — and were able to preserve sensation in the new structures. In recent years, the surgical results of transfeminine vaginoplasty closely resemble the cultural ideal, and 80 percent of trans women surveyed were orgasmic following lower surgery, The Journal of Sexual Medicine reported in February 2017. In Plastic and Reconstructive Surgery in June 2018, it was reported that 94 percent of one surgeon's patients, treated over a 15-year period, were pleased with the results overall and would repeat the procedure.
Bottom surgery for trans men has also come a long way. There are two general categories: metoidioplasty and phalloplasty. The former takes advantage of the physical changes caused by testosterone therapy, which include the growth of the clitoris (the analogous organ to the penis). This larger clitoris becomes a penis that retains sexual function and sensitivity but may be too short for penetration. The latter creates a penis using a graft taken from the forearm, thigh or abdomen, which looks and functions like that of a cisgender man but doesn't always retain sensation.
In an article in the May 2021 issue of The Journal of Sexual Medicine on patient satisfaction with transmasculine lower surgery, two-thirds were satisfied with the appearance of their genitals after surgery, but only one-third were satisfied with sexual function. However, 82 percent were happy with the effects of the operation on their masculinity.
Chest or "top surgery," sought by up to a quarter of people with gender dysphoria, has been about twice as common as lower surgery among patients seeking gender-affirming care, according to the Translational Andrology and Urology article. Today, there are methods available to retain greater sensation and result in less scarring for chests of all sizes.
Besides "top" and "bottom" surgeries, other procedures for masculinizing or feminizing the appearance to reduce gender dysphoria include facial feminization surgery (FFS), which is a category of aesthetic procedures including hairline correction, rhinoplasty and jaw reduction. Hair removal, nipple tattoos, vocal training, facial masculinization surgery, liposuction and other cosmetic procedures may also help treat gender dysphoria.
Hair removal has emerged as a critical gap in access to care for people using health insurance to pay for lower surgery. It is medically necessary preoperative treatment, delivered by a licensed professional. In a catch-22, though, hair removal has traditionally been offered in clinics that do not accept health insurance, because their services have not been covered in the past. "No one was credentialed to get covered by insurance," Nesteby explains. "Now you have this necessary service, but people are still having to pay out of pocket. That's been an access issue we only realized after insurance started covering surgery."
How to Access Gender-Affirming Care
The people who responded to interview requests for this article reported starting their search for gender-affirming care with a primary care physician, or through a clinic for underserved sexual minorities. Callen Lorde in New York City, Lyon Martin in San Francisco and Tapestry in Greenfield, Massachusetts, all came up in interviews. "I had an excellent experience with the Equality Health Center in Concord, New Hampshire," Ian says. "EHC offers informed consent as an access protocol for HRT. This fit well with my personal goals and preferences."
A major hurdle in accessing gender-affirming care is that, often, finding one educated and trans-competent provider isn't enough, because TGNC people need a lifetime of treatment.
For example, if a patient has surgery at a center hundreds of miles away, then experiences a complication after returning home, local emergency medical service providers must understand the treatment the patient has received and how his body differs from their expectations in order to properly care for him.
Similarly, trans women who have had vaginoplasty need urological and gynecological services that are different from the care appropriate for a cisgender man or woman. Yet both patients and physicians have reported a lack of provider competence, per an August 2021 paper in the Journal of Gynecologic Surgery.
Using a clinic whose mission is to serve the transgender community does not guarantee competent care either. In fact, one interview subject treated by a big-city provider focusing on the TGNC community routinely felt they mismanaged a common side effect of HRT, causing him distress when his dysphoric symptoms returned. Rather, gender-affirming care can come from small towns, family doctors and providers who don't specialize in TGNC care.
But it takes more than good intentions to provide appropriate care: It requires ongoing medical and cultural competency training. Many patients rely on word of mouth, transgender community message boards and online directories to find competent providers. A directory of transgender-aware care providers is available through the WPATH Global Education Institute, which offers a 50-hour training program to its members. (Patients can search for WPATH members who are care professionals here.)
"Gender-affirming services have evolved quite a bit in the last 50 years, but there's still a great lack of access," Dr. Kirkley says. "Primary care is improving, but there is no standardized curriculum of gender-affirming care in medical schools, nursing schools and public health programs. We still have a long way to go."
More recently, in the age of COVID-19, telemedicine is helping to close another gap in access: geography.
"Virtual care has changed the dynamics of all health care dramatically," Dr. Kirkley says. Insurance began to routinely cover telemedicine during the novel coronavirus pandemic, making trans-aware providers available to patients who would not have otherwise been able to access their services. "Before COVID there was a lot of doubt [that telemedicine is effective], but [the shutdown] has really validated the model. As an innovation in health care delivery, it has enabled Plume and other providers to provide gender-affirming care."
Still, the changes that have come with gender-affirming care benefit more than the TGNC community. People in all walks of life can appreciate the greater access telemedicine brings and the revolution in patient-centered care.
"I think that one of the benefits that cisgender, heterosexual people don't see about gender-affirming care or trans visibility is that it helps everybody," Nesteby says. "It's not only trans people who suffer from rigid boxes we put people in. When we don't force people into binaries, everybody wins."
Is This an Emergency?
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