Transgender Health Care in Santa Barbara

W

hen Aspen was about to leave his house to go to work, it elicited feelings of dread and despair. He couldn’t just roll out of bed, throw on a pair of jeans and a T-shirt, and be ready to go like other guys. 

He agonized over the way people might perceive him once he walked out the front door. If he didn’t get his appearance just right, he might get mistaken for a woman. That all changed when he began receiving treatment at the Santa Barbara Neighborhood Clinics (SBNC) four months ago.

Aspen is a 23-year-old transgender man, meaning his designated sex at birth was female. He came out with his true identity at 17 but said he’s known who he was since elementary school. 

“I’ve always thought of myself as having a man brain,” Aspen said. At 18, he began taking testosterone at SBNC to develop male characteristics such as facial hair and a deeper voice. 

After a year of receiving hormones at the clinic, he moved to Arizona to be with his girlfriend and found that it would be too expensive to continue treatment there. During the two and a half years he did not receive testosterone, he said, he was constantly worried that he would not be able to pass as a man. “The difference in my mood has been drastic since I moved back to Santa Barbara” and began taking hormones again, he said. 

As part of their mission to meet the needs of underserved people, SBNC began treating transgender and nonbinary patients of all ages at their Isla Vista clinic. It is the only medical facility between San Francisco and Santa Paula to do so, providing primary care, hormonal care, reproductive care, and surgical referrals for children and adults. Without the SBNC, Aspen and others throughout Santa Barbara County would not have access to the hormones they need to be their true selves.

An Emerging Community

Christine Jorgensen became an international celebrity when she traveled to Denmark in 1951 to undergo a series of gender-affirming surgeries. Assigned male at birth, she publicly discussed her experience as a transgender woman, the first time a transgender person was featured in mainstream media. Jorgensen’s activism slowly opened the door for transgender people. 

Society’s gradual acceptance has paved the way for other gender variations to surface, most commonly nonbinary individuals who don’t identify as either male or female. Nonbinary people typically use the pronouns “they”/“them” rather than “he”/“him” or “she”/“her.”

As long as negative stigmas continue to exist around transgender, including nonbinary, people, it’s impossible to know for sure how many there are in the United States. What is known, however, is that the numbers of those willing to identify as transgender are rising, thus increasing the need for medical services.

Up until 2016, the widely accepted number came from a 2011 study by The Williams Institute ​— ​a sexual orientation and gender identity think tank at the UCLA School of Law ​— ​that estimated roughly 700,000 American adults identified as transgender. In 2016, using a much larger federal database, the institute’s estimate doubled to 1.4 million adults. 

In a seperate, 2017 report, The Williams Institute added that about 150,000 American youth ages 13-17 identified as transgender.

“I don’t think there are more of us now than when I was young,” said Gen LeDuc, a 57-year-old transgender woman who receives services at the Isla Vista clinic. “I think the internet has allowed more people to learn about themselves to the point they can publicly come out.”

LeDuc, assigned male at birth, grew up with several brothers and knew from the time she was a small child that she was the “odd one out.” There was no information readily available about trans people during her youth, so it wasn’t until she was 25 that she knew she was transgender. Until then, she said, she was convinced there was “nobody else like me in the world.”

She finally found “people like myself” when she stumbled across a magazine in a porn shop that had a little ad for a group of crossdressers, “or whatever the term was at the time,” she said. When she called the number listed in the ad, she was told about a meeting in Orange County. “The group was called the Powder Puffs. Everyone met at a hotel and changed into feminine clothes. It was the first space where I could talk about [being trans].”

Max Rorty, the behavioral health collaborative care manager for the Neighborhood Clinics, said the Isla Vista clinic sees about 10-15 transgender patients a week. Providing adequate care for the transgender population, particularly for young people, is crucial in light of data showing the grim outcomes for those who cannot find access to information and treatment. 

A 2018 American Academy of Pediatrics study of adolescents ages 11–19 reported more than 50 percent of transgender boys, 42 percent of all nonbinary teens, and 30 percent of transgender girls have attempted suicide. These numbers are more than double the national rate for adolescent suicide ​— ​14 percent ​— ​including cisgender (non-transgender) adolescents.

Many transgender people suffer from gender dysphoria, a heightened state of distress caused by one’s physical body not matching their gender identity. The American Medical Association (AMA) said in 2008 that when people are left untreated, it can cause “distress, dysfunction, debilitating depression and, for some people without access to appropriate medical care and treatment, suicidality and death.”

“Being trans in and of itself doesn’t require mental-health care,” Rorty explained. “But oftentimes when a trans person isn’t allowed to be themselves or they are denied health care that helps them get there, they start to develop depression and other issues. The extreme stress from hiding your identity can start to wear on you.”

Hormone Therapy

Medical transitions are defined as the treatments transgender individuals undergo to affirm their gender. These are different than social transitions, such as coming out to friends and family, changing one’s name and pronouns, and dressing to match the gender with which they identify.

Medical transitions include various types of surgeries and hormone therapies, although none are necessary to be transgender ​— ​some people are content with transitioning only socially. For those who do seek a medical transition, the care is specific to them. Hormone therapy is the most commonly chosen.

“Hormones are extremely tailored to the individual,” said Physician Assistant Ana Sofia DeVaney, who administers hormone therapy at the Isla Vista clinic. “There are injectables, pellets, patches, and gels. Some people receive it once a week, some more. Some do it for life, some just for a little while to get to a certain point and are happy staying there.”

Aspen’s treatment involves a weekly shot of testosterone. LeDuc’s treatment is entirely different. She wears estrogen patches, which are replaced biweekly, and takes testosterone blockers. Each individual’s body has different hormone levels to begin with and each individual may have a different goal for their appearance, so no two treatment regimens look exactly alike. 

DeVaney said hormone therapy isn’t taught in medical school, which is why so many doctors are uncomfortable with providing that care. Until she came across a patient who came out to her as transgender, she hadn’t looked into it, either. 

“[The medical field] is an ever-changing industry,” DeVaney said. “I got myself informed. I went to a few conferences on it and thought, ‘Oh, I can do this.’ I tell practitioners on the fence that if you can prescribe birth control pills, you can do this, too.”

The long-term effect of hormone therapy is unknown, as no studies have been conducted on long-term transgender health. But as a physician assistant, DeVaney believes the benefits of the treatment outweigh the potential risks, particularly those of suicide and depression.

Dr. Charles Fenzi, CEO and chief medical officer of the SBNC, agrees. “The risks are probably about the same as with birth control,” Fenzi said. “[Hormone therapy] might pose a slight risk of blood clots and liver-enzyme elevation, but we won’t ever really know without studies.”

Although Planned Parenthood and a few private-practice doctors provide gender-affirming hormone treatment in Santa Barbara, the SBNC in Isla Vista is the only provider for miles that administers the treatment to transgender minors.

Trans Youth

Lisa’s Place, a Santa Barbara–based transgender support group, holds a weekly space for young people to meet and explore their identities in a nonjudgmental atmosphere. 

For Christopher, a 17-year-old transgender boy, his biggest dilemma now is that he needs parental consent to begin a medical transition. He feels like his life is “on pause.”

“I just want my life to finally start. I know life will have its downs, but I’m just looking forward to the ups.”

For Christopher, beginning testosterone is exactly that: a new start. He has been to the SBNC for a consultation, but his dad and stepmom, although supportive of his social transition, are worried about permitting him to begin a medical one.

“It really challenges your idea of who you are,” said his father, Dominic. “I’ve always considered myself to be open-minded and progressive. I support Christopher; I really do. I just struggle with signing off on the permanent changes to his body. There is always a fear of fucking up. I don’t want him to become one of those statistics, but I also don’t want him to come to me in five years and hate me for letting him do this.”

Because Christopher will be 18 in a few months, Dominic said he’ll have to wait until then. Dominic’s hesitation is normal for parents of transgender kids and teens. Fenzi said a large part of his job at SBNC is educating the parents, because the kids have usually done their research already. 

“It’s important for the parents to recognize their child isn’t happy,” Fenzi said. “There’s a huge risk for depression. That’s where [Max Rorty] comes in. She is an amazing mediator for the confused parents and the hurting kids.”

For prepubescent children and their parents who come to the clinic seeking help, there is a middle-ground treatment. This solution, Rorty said, can usually help ease parents’ worries. The clinic can prescribe hormone blockers that prevent the body from entering puberty. A child who was assigned one sex at birth will not reach puberty in that gender while taking the blockers, thus giving the family time to consider the options. 

It’s like a “pause” button. The parents and child can take an extra year or two to decide if a medical transition is the right option. This is particularly important because puberty is a traumatic time for children who feel disconnected from their bodies. It often results in dangerous bouts of gender dysphoria and depression. When young patients stop taking hormone blockers, either their bodies will enter puberty at the sex assigned at birth or they can begin a program of hormone therapy.

LeDuc, who didn’t begin her medical transition until age 51, said that the opportunity to have taken testosterone blockers prepuberty would have “been life changing.” Instead, she not only required hormone therapy to “pass” as a woman but had to undergo facial feminization surgery. 

Aspen’s mother, Ellen, agreed with LeDuc and decided to find a doctor who would prescribe hormones to her child. Although Aspen didn’t begin hormone treatment until he was 18, his older, transgender sister, Jackie, began at 15 with Ellen’s consent. The family is remarkably rare ​— ​two transgender children born to the same mother. 

 The children’s parents were both determined to “do anything to make sure the kids are happy. So we investigated to see what we could do. It wasn’t hard to accept with Jackie, but I’ll be honest, it was much harder with Aspen,” Ellen said. “I’m okay with it now, but at the time I felt angry that I couldn’t have one normal kid.

“There was like, one book about it, and there were no support groups for parents of transgender kids,” Ellen continued. “There was maybe one doctor in L.A. prescribing at the time, and they wouldn’t give Jackie hormones because of her age.” Less than 10 years later, Ellen said, she is grateful that SBNC can give Aspen a smoother experience than Jackie had. 

The SBNC are only a beginning, though. The Santa Barbara Transgender Advocacy Network (SBTAN) lists the Isla Vista clinic as the only “trans-approved” youth clinic in the county. But this isn’t enough to meet the community’s needs.

Kathy Abad, parent of an adult transgender child and who sits on the SBTAN executive board, said, “We are in a crisis here in Santa Barbara as we only have S.B. Neighborhood Clinics and Planned Parenthood offering these services. … The only option is to pay out of pocket.”

Dr. Johanna Olson-Kennedy, a nationally renowned expert in transgender care for children and young adults, regularly holds two-day symposiums for doctors and clinicians looking to learn about trans youth care.

“As more youth are presenting to physician’s offices for care related to gender dysphoria, it is more critical than ever that primary care providers have an understanding of the needs of transgender and gender nonbinary children, adolescents, and young adults,” Olson-Kennedy said.

The next area Transyouth Care symposium will be held at UCSB in January.

Gender-Affirming Surgery

One of the most common misconceptions about medical transitions is that transgender and nonbinary individuals must undergo “bottom surgery” ​— ​also known as genital surgery ​— ​to transition fully. In fact, 14 percent of trans women and 72 percent of trans men said they don’t ever want full genital construction surgery, according to the 2011 National Transgender Discrimination survey.

“People have this obsession with thinking it’s about genitals, but most of the trans clients I see could care less about it,” Rorty said. “They care about how they are perceived in the world, not about what’s in their pants.”

The Isla Vista SBNC provides referrals for “top surgery.” For transgender men like Aspen and Christopher, the surgery involves removing the breasts and reconstructing the tissue to resemble a male chest. This is a more common surgery because the appearance of breasts can be the reason a transgender person can be misidentified in social situations; however, it can cost upward of $9,000.

“I think about top surgery nonstop, all day, every day,” Aspen said. “If I walk past a fancy car, I think about how I wish I could steal it and sell it to pay for my surgery, or other random fantasies.”

To conceal his breasts, Aspen wears a tight-fitted vest called a binder. The binder compresses his breasts to give the illusion of a male chest, but it is extremely uncomfortable. 

“I hate wearing it,” Aspen said. “I have to do breathing exercises every night when I take it off. I can’t leave my house without it … but it feels like a prison.”

Christopher also wishes to undergo top surgery. “I just want to walk into a room and have people assume I’m a guy. Even though the binders help with that, they still hurt.”

For transgender women, top surgery is often not needed because the estrogen in their hormone therapy causes their bodies to develop breasts. 

Although LeDuc didn’t require top surgery for her transition, she said she recently had a consultation for bottom surgery. The SBNC does not yet offer referrals for bottom surgery, but Rorty said they hope to meet that need in the future. 

“The current Trump administration is threatening to take away access to trans health care,” LeDuc explained. “With bottom surgery, I will have my testicles removed and no longer require the weekly [testosterone blockers] from SBNC. It’s more of a security issue for me.”

General and Reproductive Care

Even if a transgender patient never medically transitions, their primary care providers still require training to properly treat them. 

According to the 2015 U.S. Transgender Survey (USTS), 33 percent of transgender Americans said they had had at least one negative experience with a health-care provider in the past year, including being refused treatment, verbal harassment, physical or sexual assault, and/or having to educate the providers about how to give appropriate care. 

Fin, a nonbinary person who uses the pronouns “they”/“them,” has personally experienced discrimination in health care.

“The most common issue is getting misgendered and misnamed,” Fin said. “It should be such an easy fix. When doctors constantly get it wrong, transgender and nonbinary people feel unwelcomed and uncared for. … It’s like a mosquito bite. If you’re bitten once, it’s annoying. If you’re bitten over and over again, it becomes unbearable.”

All new patients at the SBNC are required on the registration form to provide their assigned sex at birth, gender identity, sexual orientation, and preferred pronouns. Patient medical charts are updated with the information so doctors and nurses can avoid confusion; all clinic bathrooms are gender-neutral; and the whole staff wear nametags with their preferred pronouns.

Melissa Alvarez, a patient navigator who works at the front desk in the Isla Vista clinic, said, “I am the first person they talk to when they come here. If I don’t respect them, they won’t want to see the doctor.”

And if patients don’t experience respect at the beginning, how, they ask, can they bear the burden of explaining their identities to their doctors? For nonbinary people, it can be even more difficult.

“Once, when I went to get my first pap smear in nearly 10 years,” Fin said, “I emailed the doctor ahead of time to let her know I’m nonbinary to avoid awkwardness. During the pap smear, however, she told me that it’s a ‘shame’ I want to get rid of my large breasts because another woman would have really appreciated them. I shouldn’t have to teach doctors how wrong that is.”

Even more critical from a medical point of view is the need for doctors to understand the specific needs of transgender patients. “If you’re a trans woman with a prostate, you still need to be screened for prostate cancer,” Fenzi said. “Whether or not you are regularly taking estrogen, you still are at risk. If you’re a trans man, even one who had top surgery and is on testosterone, you still are at risk for breast cancer and need to be screened for that, too.”

That’s the biggest point when it comes to transgender health care: Those patients require the same care cisgender people do. According to the 2015 USTS, only 27 percent of American transgender men had had a pap smear or were screened for cervical cancer in the previous year, despite the fact that the vast majority of them have a cervix. For comparison, 43 percent of cisgender women had had a pap smear in the same year. 

The staff at the Isla Vista Neighborhood Clinic are serving a most grateful group of patients. “They have always taken care of me,” Aspen said. “I love them.”