By Orion Rummler and Kate Sosin, originally published by The 19th with funding from A-Mark Foundation See the original article at https://19thnews.org/2023/06/everything-to-know-about-gender-affirming-care/
As misinformation about gender-affirming care has grown more rampant, The 19th has sought answers to some common questions.
Political efforts to ban gender-affirming care for transgender people have escalated in the United States. Hundreds of bills have been introduced since January 2020, and Republican governors and attorneys general have pushed for investigations into hospitals and issued edicts to restrict medical care.
Meanwhile, misinformation about what gender-affirming care is — and is not — has grown more rampant and has been increasingly weaponized. Transgender Americans feel like their health care is being used in a political tug-of-war as state lawmakers, members of Congress, super PACs and news outlets mischaracterize medical services that have existed for decades.
So what is gender-affirming care, exactly? And why is it important?
The 19th spoke with health care professionals who provide gender-affirming care to adults and adolescents — as well as trans young adults who were comfortable sharing their experiences — to answer those questions.
What is gender-affirming care?
Gender-affirming care is generally understood to be medical care that many transgender and nonbinary people need as part of their gender transition. More broadly, gender-affirming care is any kind of medical care that people get to bring their bodies into more comfortable alignment with their sense of gender (think of IUDs, erectile dysfunction medication, laser hair removal and breast reduction surgeries).
Jerrica Kirkley, co-founder and chief medical officer at the transgender health company Plume, describes it this way: “Gender-affirming care is any care that is delivered with both cultural and clinical competency which is informed by the lived experience of trans and nonbinary people.”
Kirkley adds that all doctors can provide gender-affirming care and that all patients can benefit from it.
Still, most people are taught to think about gender-affirming care as transgender-specific care. Such care, which is not one-size-fits-all, takes on many forms: consultations with a primary care doctor, an endocrinologist or therapist, filling prescriptions for hormone replacement therapy, scheduling follow-up visits for lab work to monitor blood levels, meeting with surgeons referred by a doctor and more.
Do all trans people get the same care?
Every trans and nonbinary person is different, and will generally make a specialized plan for care with their doctors. Not all transgender people want or need any physical changes as part of their transition. Many trans people live full lives without seeking hormones or surgery and only socially transition, using a new name, new pronouns, or changing outfits or hairstyles to better match their gender expression or identity.
Some trans people are unable to access gender-affirming care because they cannot afford it — institutional barriers keep many trans people in poverty. Others are not able to pursue gender-affirming care due to preexisting medical conditions. For some, being trans or nonbinary is more about their relationship with themselves or the world around them. They might want counseling or no gender-affirming care at all. There are endless ways people live outside the binary.
An individual’s gender transition is extremely personal. From a person’s stage of life, to whether or not they experience gender dysphoria, to what kind of physical changes they need or want to achieve, to how they identify, gender-affirming care is an individualized process that draws from decades of established medical guidelines and practice.
What is gender dysphoria?
Gender dysphoria is the sense of discomfort or anxiety a person feels when their physical gender feels out of sync with their gender identity.
Many, but not all, transgender people experience gender dysphoria. The psychological and emotional distress can lead to severe negative impacts in day-to-day life, even heightening anxiety, depression and self-harm. What triggers gender dysphoria in one trans person may not trigger someone else.
For many trans people, gender dysphoria is only alleviated through medically transitioning. Taking hormones or getting gender-affirming surgery allows them to live and to be perceived by others as the gender they truly are. This also allows trans people to exist without being harassed or othered, which can look like being able to walk safely down the street.
This is part of why gender-affirming care is described as “life saving” by many trans people. Access to gender-affirming care has been linked to lower odds of suicidality and depression in transgender youth, while gender-affirming surgeries lower psychological distress for adults. A 2021 survey by the Trevor Project, an LGBTQ+ youth crisis organization, found that among trans kids 18 and under, a year of hormone therapy correlated with 40 percent lower odds in recent depression or attempting suicide.
Trans people take other steps to alleviate gender dysphoria without medically transitioning or while receiving gender-affirming care, including chest binding and tucking, or by wearing affirming clothes or new hairstyles. Being misgendered, or not being able to wear affirming clothes, can be extremely dysphoric for many trans people.
What does gender-affirming care look like for kids?
For very young kids, gender-affirming care typically means medical care that honors a transgender person’s identity. Sometimes that just means getting to see a doctor who will use their right pronouns and name. Other times, it can be seeing a therapist who can help them sort through their feelings about gender.
The World Professional Association for Transgender Health (WPATH) recommends that medical professionals follow different care models depending on the age of their patients. Trans kids and teens generally receive different care than adults.
For kids entering adolescence, doctors can prescribe puberty blockers, which temporarily delay the hormones that cause kids to go through puberty. This treatment can be a critical “pause” button to give trans youth more time to figure out their gender identity or to socially transition. This treatment intervenes before puberty causes bodily changes that may require surgery in the future and alleviates acute gender dysphoria.
Most significantly, blockers have been shown to dramatically reduce depression and suicidality in trans and nonbinary teens.
What does treatment with puberty blockers entail?
These are the same treatments increasingly prescribed to cisgender children experiencing early puberty, which studies show has increased since the COVD-19 pandemic. The exact age to start puberty blockers as part of gender-affirming care varies but should align with the first signs of puberty, according to WPATH guidelines. Puberty blockers should only be taken by youth who have already started puberty, and not by prepubescent youth, according to WPATH.
Puberty blockers are a typical step for minors receiving gender-affirming care, and those youth go through an intentionally lengthy process to access care. Brittany Bruggeman, a pediatric endocrinologist who treats trans youth at the University of Florida’s youth gender program, said that a typical patient has been thinking about their gender identity for years before they come to her.
One of the risks is decreased bone density, which is monitored very closely, as well as calcium and vitamin D levels, before and after blockers are prescribed, Bruggeman said. Weight-bearing exercise, which requires moving against gravity, and diet optimization are also recommended and discussed over time. While none of Bruggeman’s patients have experienced issues with bone density while on puberty blockers, discussing all risks is a routine step for comprehensive treatment, she said.
Lupron, a puberty blocker, has additional extremely rare side effects, Bruggeman said. It can cause idiopathic intracranial hypertension, or increased pressure in the brain, which is treatable and reversible if prescription is stopped. She informs patients of warning signs to look out for: headache, nausea, vomiting, vision changes. It’s also important for families to be aware that there can be some social consequences of not going through early puberty at the same time as their peers, she said.
Some patients experiencing gender incongruence, or who have a different gender identity than their sex assigned at birth, don’t think that bodily changes will affect how they view themselves. For those patients, medical intervention may not be needed, Bruggeman said. She also does not recommend puberty blockers for trans youth who have already gone through the majority of their puberty.
With patients with significant gender dysphoria, Bruggeman talks with them about what changes will help them align with their gender identity, what they can expect on medical treatment, and what risks and benefits will arise from those treatments. A first visit is an hour-long discussion, occasionally followed by baseline blood work in order to make sure everything is okay, Bruggeman said. She’ll speak with the patient’s mental health provider to get their thoughts on the patient as well, then help create a plan of action for the patient with a broader medical team.
“Politically, I don’t think people always understand how detailed these visits really are and how much we really do our due diligence in providing all the information necessary to make a good decision,” Bruggeman said.
Puberty blockers are typically used until patients get to an age where they can think about taking hormones, she said.
What is hormone replacement therapy?
Many Americans think of hormone replacement therapy as an option for replacing estrogen in people going through menopause. For trans people, similar therapy — of using hormones to bring a person closer to their identified gender physically — is widely accepted as an effective course of treatment for gender dysphoria.
Many trans men, transmasculine people, nonbinary people and other trans people take testosterone through hormone replacement therapy. Many trans women, transfeminine people, nonbinary people and other trans people take estrogen. In both cases, doctors work closely with their patient to determine what the best hormone dose is, and monitor emotional responses, as well as physical ones, after a dose is initially prescribed.
There are several ways to take testosterone, depending on a patient’s needs and preferences, including weekly injections or a topical gel. Doses vary depending on what amount is ideal and safe for a particular patient. Testosterone has several permanent and impermanent effects, which are explained to patients before they begin the process. Permanent side effects, which are typically sought by patients, include facial hair and a deeper voice. Reversible side effects, which are also typically desired by patients, include fat redistribution and no more menstrual cycles.
One potential harmful side effect of testosterone is an increased risk of blood clots or strokes due to a higher red blood cell count or thicker blood.
Estrogen can be taken through pills, patches and injectables — and is commonly taken alongside testosterone blockers. Like with testosterone, the rate of physical changes depends on the dosage taken and what kind of method is used, which is all discussed with a patient’s doctor. Estrogen has many reversible effects, which are sought after by many trans women and others taking the hormone, such as: softened skin, breast growth, thinner body hair, and redistribution of body fat. Unlike testosterone, taking estrogen does not affect a patient’s voice.
Doctors follow different rules when prescribing hormones to trans minors and to trans adults. For example, at Whitman-Walker, a D.C.-based health care provider serving LGBTQ+ people, transgender adults seeking hormone therapy will receive care through an informed consent model: They are told about the risks and benefits by a health care provider and then make their own decision. For a minor to receive hormone therapy treatment at one of their clinics, however, Whitman-Walker requires a mental health assessment as well as parental or guardian consent.
This follows WPATH guidelines, which note that counseling, mental health assessments and allowing trans youth to explore their gender are important. The group now suggests that there are compelling reasons for some minors to begin hormones younger than 16. Starting younger may be especially important for adolescents who have been on puberty blockers in order to begin the onset of puberty.
Are trans adults and trans minors getting the same surgeries?
No. Most transgender youth receiving gender-affirming care will not undergo surgery as a minor. Some major clinics that offer comprehensive gender-affirming care for youth simply do not offer surgery services or will only make referrals to outside gender-affirming surgeons.
WPATH previously recommended that patients be at least 16 years old before undergoing top surgery, or male chest reconstruction — which can be especially beneficial to alleviate dysphoria in trans boys in ways that hormone therapy on its own cannot achieve. Now, the group does not provide a set age recommendation, stating that data is limited on the optimal timing for initiating surgical treatments in adolescents.
Other guidelines are clear: When providing gender-affirming treatment to adolescents, WPATH advises doctors to ensure that the youth has expressed sustained gender incongruence, that they have the emotional and cognitive maturity to provide informed consent, that mental health concerns have been addressed, and that the youth is informed of reproductive health effects. Adolescent patients should be on hormone therapy for at least 12 months before undergoing surgery, unless hormone therapy is not needed or medically contraindicated.
Surgeries are common parts of gender-affirming care received by adults. Some trans men, transmasculine or nonbinary people will get top surgery in order to alleviate gender dysphoria and to stop chest binding. Some transfeminine people, nonbinary people or trans women will get bottom surgery or vaginoplasty for similar reasons.
Many trans people never receive surgery. Individual patients have different goals and there is no set order in which any trans person may seek certain surgeries.
For some surgeries, it is recommended that adults wait until physical changes from hormone therapy are able to develop. For example, the UCSF Gender Affirming Health Program recommends waiting a year after starting hormone therapy to consider facial feminization surgery because estrogen will naturally redistribute fat in a person’s face.
Loren Schechter — director of gender affirmation surgery at Rush University Medical Center, WPATH treasurer and professor of surgery and urology — has been performing gender-affirming surgery for over 20 years. Patients undergoing a genital surgery navigate a long process, including meeting with a pelvic floor physical therapist before and after surgery, discussing aftercare and expectations around sexual function and any reproductive concerns, and receiving a behavioral health assessment.
Schechter said that he has performed a genital surgery on under 0.5 percent of the adolescent patients that he has ever seen. The kind of adolescent patient that Schechter would consider for a genital surgery would be someone in their late teens — someone who has socially transitioned and has been on hormones for several years, and is in a supportive environment where they can be taken care of by family after the operation.
“There are times, albeit rare, that we would consider performing the procedure. For example, when someone graduates high school, before starting college,” he said. That patient is already beginning the next stage of their life — and starting college comfortable in their own body is important, he said.
Such a procedure for minors is exceedingly rare — and yet, most of the categorial bans on gender-affirming care passed in states portray those outlier cases as more widespread than they actually are.
Is gender-affirming care new? How did it come about?
Scientists have found evidence of gender-affirming treatments dating back thousands of years across cultures and continents, though that care has varied widely across generations from prosthetics to surgeries and, more recently, hormones, which were synthesized in the 1930s.
“Gender-affirming care really has been around as long as trans people have been around, which is as long as humans have been around,” Kirkley said.
Gender-affirming surgery is in no way new, Schechter said, and has been done for almost 100 years. Specialized health care for transgender adolescents began in the 1980s, according to WPATH. That’s when a few specialized gender clinics for youth were developed around the world that served relatively small numbers of children and adolescents.
As acceptance for transgender people and access to care has increased, more trans and nonbinary people have sought out trans-affirming medical care or socially transitioned. And though gender-affirming care isn’t new, what is new is that within the past few decades, it has received recognition as its own multidisciplinary field, Schechter said.
Why is there a scarcity of doctors providing gender-affirming care?
There are many barriers, including where clinics are physically based in the United States; in rural areas, trans patients have to travel farther to find care. Another is a lack of awareness and knowledge among the medical community of how to care for transgender patients at all.
Dr. Alex Dworak, a family medicine doctor based in Omaha, is one of the few providers of gender-affirming care for transgender adults and minors in Nebraska. Some of his patients travel from one to three hours away. The sparseness of medical access in areas like his is not because providing gender-affirming care is challenging, he said — in fact, far from it.
“This is not hard medicine, but very few of us in the medical community are prepared to provide it. I personally got zero training about this. None whatsoever in my residency — [in] medical school, we didn’t even talk about trans people being real. And for the first several years of being an attending physician and a teacher, I wasn’t prepared to help anybody,” he said.
Now, on top of his duties taking care of diabetes patients, providing other routine care and working at a local HIV clinic, Dworak works to train students and residents about gender-affirming care. Creating treatment plans for gender-affirming care is simpler than managing diabetes, which he frequently does with patients in Nebraska, or managing high blood pressure, he said. Guidelines for managing hormone treatment are straightforward compared to managing other medications.
“The main barriers are inside physicians’ heads. It’s the biases that we bring into it,” he said. “We do much more challenging things all day, every day, and don’t give it a second thought.”
What happens if trans people are kept from accessing gender-affirming care?
Outside of the recent wave of bans and restrictions, gender-affirming care is already expensive for many trans people. Without insurance, it can be impossible to save up enough to get surgery or to stay on hormones long-term.
Nathan Peters, a 26-year-old queer trans man living in Orlando, has had conversations with his roommates about being afraid of losing access to hormone therapy as statehouses move to restrict gender-affirming care for adults. While some physical changes created from taking testosterone are permanent, other changes aren’t — and going backward would take its toll.
Dysphoria would return, and the effects of disrupting his hormone regulation include destabilizing his emotions. Being able to walk through life with other people perceiving him correctly — as a man — means that he doesn’t have to fight for safety and recognition every day. Losing the changes brought by testosterone would be devastating, he said.
Looking into “completely unsafe” black-market testosterone has crossed his mind if the treatment is restricted for adults, Peters said. He knows that, no matter what, nobody can take his identity away from him. But being forced off the treatment would return him to a place where the way he seems himself is no longer aligned with how others see him.
“Being able to see yourself in the mirror the way you see yourself in your head, and the way you feel, is very affirming. And when you take away that affirmation, it makes the days just harder and harder,” he said.
Jenny Besse, a pediatric nurse practitioner in endocrinology and gender-affirming care in Atlanta, pointed out that state bans on gender-affirming care implement unclear rules for medical health professionals. The laws also create arbitrary deadlines that foster a rushed atmosphere for medical care. Doctors want to see as many patients as they can before gender-affirming care bans go into effect, and families are filled with urgency to get treatment quickly while medical personnel are trying to follow guidelines that stress a slower pace.
“This legislation creates what feels a lot like a deadline,” she said. “And the thing is that gender-affirming care for young people is not supposed to be rushed. And it’s best when it happens safely over time, when families have the time and the space and the support that they need.”
How can I support my family member or friend who is going through medical stages of their transition?
Medical transition can be a beautiful, complicated, exciting and scary time. Coming into a body that feels more like their own can be exhilarating. It also can come with fears of rejection from a world that punishes gender nonconformity. You will be a great ally if you do a little work to learn how to mirror what feels good for your friend or family member. Here are some ideas:
Read up on trans body neutrality and positivity.
This will look a little different from the body positivity many people have been taught. Think about the phrase, “All bodies are beautiful.” Some trans people simply don’t feel that for themselves. This article can help people explore body neutrality and how to follow a loved one’s lead in talking or not commenting on someone’s body.
Support a friend going through gender-affirming surgery with some easy and thoughtful gifts — like a meal, electrolyte drinks, a streaming subscription, a plant, arnica gel for aches and pains, or a foam roller to help stretch upper back muscles during recovery.