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Trans patients share what it’s like to seek health care: ‘Treated without any humanity’

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A few weeks ago, River Smith visited his primary care doctor in the Tampa Bay, Florida, area because he needed a new prescription for testosterone and the estrogen blocker he took as part of his gender-affirming care. That’s when he learned some news that upset him.

“They weren’t prescribing any medication,” the 40-year-old tells TODAY.com. “With the laws just passing … they were waiting for the Florida medical board to come up with their plan of action.”

In May, Florida Gov. Ron DeSantis signed a law that made headlines for banning trans children from receiving gender-affirming care. But the new legislation also added restrictions for trans adults, such as requiring trans patients to sign an “informed consent” form to access gender-affirming care, and that all transitioning care be provided in person and overseen by a physician, per the Associated Press .

These changes have created barriers for trans patients as many see nurse practitioners and use telehealth, the AP reported. The Florida Board of Medicine and Board of Osteopathic Medicine voted in June to temporarily allow gender-affirming care in certain circumstances but have an upcoming vote in order to enforce the new law.

While many people think of gender-affirming care as medical procedures, such as hormones and surgery, it includes “anything that affirms someone’s gender identity,” Dr. Juanita Kay Hodax, co-director of the Gender Clinic at Seattle Children’s, previously told TODAY .com Using a patient’s preferred name and pronouns or helping them through their social transition are also examples, she says.

Leading medical organizations such as the American Academy of Pediatrics, American Medical Association, the Endocrine Society and the American Psychiatric Association are all in favor of providing gender-affirming care. The AMA in particular calls such care “medically necessary.”

In recent weeks, Smith says he’s heard online from trans and nonbinary people from across his state struggling to get their prescriptions and other care. When Smith couldn’t receive his medications, he scrambled to find a solution. Then a new panic settled in: He had a hysterectomy scheduled for July and was worried it would no longer happen.

“I reached out to my surgeon,” he says. “I expressed my concerns.”

Smith’s doctor assured him the surgery would still take place and even helped him access testosterone and an estrogen blocker so he would have enough medication for the next few months.

Still, Smith fears that one day he won’t be able to get his medication.

“What am I supposed to do?” he says. “I’m putting my trust that everything’s going to be OK. Of course, in the back of my mind, I’m still (wondering) how the laws are playing out.”

What it’s like accessing care

At least 19 states have laws restricting gender-affirming care, most of them targeting minors, according to the Human Rights Campaign. But trans people say that even in states without legal barriers, finding a comprehensive and respectful health care provider remains challenging.

“I find myself having to do a lot of my own homework and making sure that I’m getting what I need,” Allie, 28, a trans woman, who lives in Brooklyn and requested her last name not be used for her safety, tells TODAY.com. “Even the doctors (who provide) hormones … they’re not as on top of the research.”

“There are a couple of doctors that I found that I really love who are collaborative and open to ideas and understand science,” she continued. “Then there are other doctors who (aren’t).”

Allie goes to a community health center for primary care, where doctors prescribe her hormones. But sometimes she feels like just a number.

“There is one doctor there who essentially is just trying to cycle patients through,” she says. “He switched me from injectable estrogen to pills because he didn’t want to test me as often.”

She didn’t feel the new hormones “aligned with the kind of transition I wanted.”

“The results yielded from both are very different,” she added. “There’s just a lot of mental gymnastics that goes into understanding the motivations of your doctors.”

Seeking medical care for an injury or cold that often feels dehumanizing, Allie says.

“I dread going to the doctor so much, outside of transition-related doctor appointments,” she says. “I’m going to basically be treated without any humanity and just with a total lack of respect for both the name that I use and just for me as a person.”

Rebecca Ammons, 57, a trans woman who lives in Tacoma, Washington, calls seeing a new provider “the most nerve-wracking experience” because it’s hard to know if the staff will harbor transphobic views, use the wrong pronouns or call her by her deadname (her birth name, which she stopped using as part of her transition).

Recently, she visited the eye doctor for new glasses, and the intake information asked for all the medications she takes. Ammons understood they wanted to make sure her prescriptions weren’t impacting her eye health. But she is worried that if she is listed that she takes estrogen and a medication for an enlarged prostate, then the provider will automatically know she is a trans woman — and that will change how the staff view and treat her.

“I don’t care whether I’m being clocked or identified as trans,” she tells TODAY.com. “(I’m worried about) what kind of attitude am I going to face? There’s a certain level of anxiety and fear that I have to work through in order to be able to go in and say, ‘I deserve to have these services and be welcomed.’”

This fear sometimes prevents Ammons from seeking necessary medical care. She had a failed root canal and needed a new dentist. Yet, she’s worried that when disclosing her medical history, she’s opening herself up for questions or judgments.

“The medical notes about me as I’m getting referrals, I’ve come across even recently some really offensive terms,” she says. “I don’t care whether or not someone agrees with my decisions. … Treat me with the same respect that you would expect to be treated.”

Ammons, who served as a chaplain in the Army and is now retried, has experience working in hospitals. In some way, this helps her navigate health care systems to receive care. Although when it comes to interpersonal experiences, she often feels uncomfortable and finds herself explaining her body to doctors and nurses.

“I feel I need to prepare (them) for something that’s going to look different,” she said. “I don’t know whether or not they need it, but it becomes this point of stress.”

One of Smith’s most memorable, negative experiences at the doctor involved a nurse, who knew he was trans, telling him about a trans friend of hers who was unable to transition medically.

“She’s like, ‘I’m glad he’s not able to get it and that he has to stay this way. I don’t agree with this,’” Smith recalls. “I was trying to educate her about how someone with gender dysphoria feels. It’s not fun at all.”

Barriers to care

Experiences like Smith’s, Ammons’ and Allie’s align with what Dallas Ducar, CEO of Transhealth, a facility serving trans and gender diverse patients, sees as one of the biggest factors that lead to poor treatment of trans and nonbinary people in health care settings.

“There’s a lack of … understanding of gender-affirming care or even just how to generally treat a transgender individual” among health care workers, Ducar told TODAY.com. “Many, many individuals have a lack of awareness on very basic things, like names and pronouns and just treating people with human dignity.”

Dr. Jerrica Kirkley, founder of gender-affirming telehealth company Plume, adds that “cultural competence” with trans and gender diverse people “is important for all on the health care team, regardless of what their role is.”

“The actual discrimination and bias that occurs could be from the clinician, but there’s so many points in the chain that we have to walk through, from the front desk to maybe even a greeter before that,” she adds.

What’s more, there aren’t enough doctors, nurses and clinics providing gender-affirming care to meet the need, Dr. Blair Peters, assistant professor in the division of plastic and reconstructive surgery at Oregon Health and Science University’s School of Medicine, tells TODAY.com.

“We’re still nowhere near having an adequate number of providers who are well trained for the whole community’s needs,” he says.

This means that, across the US, there are “concentrated centers” where there are experts with experience in gender-affirming care, but such facilities are usually only in large cities and have years long waitlists, Peters says. “There may be one or two providers for an entire region or a state or a county.”

Trans people are also less likely to seek preventive care or visit a doctor when they notice worsening symptoms, Peter explains. And when they do seek treatment, or even when getting routine care, they’re likely to face what is known as “trans broken arm syndrome.”

Ducar describes it as a “phenomenon where the health care provider, consciously or not, assumes that all manner of medical issues are a result of the person being trans, or (they) become so focused on the individual’s identity that the health care provider does not actually proper care for the medical needs. Those biases really impact the ability of the provider to identify any serious condition.”

And trans people of color may face even more barriers due to their race.

“If you think of the plight of a Black, trans woman trying to access health care, there’s so much bias,” Peters says. “There’s often a lot of preconceived notions or judgments … and that’s a really hard thing when you’re also vulnerable … because you have an issue that you need help with.”

Despite the legal and social challenges for trans people seeking health care, experts are hopeful for the future.

Take health insurance. Recently, Kirkley says she’s seen more health insurance companies interested in serving trans patients.

“These companies are actually reaching out and saying, ‘Hey we want to make sure our trans members are taken care of, how do we do that?’ she says. “That was not happening even three years ago.”

Some medical educational programs, such as at Harvard and the University of Louisville, are incorporating LGBTQ health into their curriculum, and Peters has attended to medical students and residents looking for ways to incorporate gender-affirming care in their practice, no matter their specialty.

“There’s so many LGBTQ+, queer, transgender medical students now who are going on to work for the community,” he says. “At the general medical student level, a lot of increased education about LGBTQ+ health issues and gender-affirming care is really medical student-driven. (They’re) saying, ‘Hey, this is really important, and this is part of medicine, and we need to be taught this.’”

Moments of hope

Allie is undergoing facial feminization surgery after finding a surgeon who feels affirming and supportive. She’s excited for the procedure and her new surgeon.

“He is considerate of my needs,” she says. “He has a basic respect for me as a person, which seems like it should be something that all doctors have, but I have found that not to be the case.”

Allie also sees a shift with younger providers being more understanding and supportive.

Ammons says she is “blessed” and “privileged” to have a great doctor in the Veterans Affairs health system. Since first transitioning, she has seen a shift in the care she receives.

“The Veterans Administration has come a really long way,” she says. “The work they continue to do to understand best practices for the trans, nonbinary community (is good).”

When Smith’s stepchildren notice the effects of the gender-affirming care he receives, it makes him happy.

“My kids say, ‘Oh … you’re looking more like a boy,’ and stuff like that just makes me feel better,” he says.

While Smith and his wife have looked into moving states, with shared custody of the children, it’s not easy.

“Another reason why I haven’t quite left Florida yet is because I want to stand up and fight first,” he says. “Even though it’s scary.”

This article was originally published on TODAY.com