By Deepa Bharath, USC Center for Health Journalism Collaborative

The possibility of becoming sick keeps Jennifer Leyva up at night.

The 38-year-old transgender woman doesn't have health insurance. Since she began her transition about five years ago, she's bought female hormones at street corners, swap meets and stores that sell them under the counter.

She's taken on odd jobs and even performed sex work to cover the cost of hormones and laser hair removal, which could all add up to thousands of dollars.

"I was in my 30s when I began my transition," she said. "It's not easy to turn a manly man into a woman. When you want something so bad, you don't care what you risk."

While transgender Californians such as Leyva face the same concerns as the rest of the uninsured population around how to pay for routine medical care or hospitalization if they get sick or are injured, the health care challenges often go far deeper for this community. 

Hormonal therapies used in gender transitions can run thousands of dollars, not to mention the exorbitant costs for sex-reassignment and cosmetic surgeries. The need for mental health and therapeutic services tends to be particularly high among the transgender community as well, given the emotional issues and social stigmas they routinely encounter. 

Transitioning is the process of permanently adopting the physical characteristics of the gender one identifies with as opposed to those associated with one’s birth sex. Some limit this process to social transitioning, which involves changing their name, preferred pronouns and appearance. 

Others choose to transition medically as well by opting for hormone treatments, sex-reassignment surgeries and cosmetic procedures such as breast implants. Some may also choose to undergo additional surgeries such as a hysterectomy to remove female reproductive organs, and phalloplasty, which is a procedure to construct a penis using skin from other parts of the body.

The transition process can vary from person to person depending on how much they want to change, said Khloe Perez-Rios, 30, of Rancho Cucamonga, a transgender woman who leads a support group for other transgender women in Long Beach.

“For some, it’s a lifelong process,” she said. “Many are happy once they reach a stage where they are comfortable. That’s really what it’s about — to be comfortable in your own skin.”

Lack of access and care

Although estimates vary, national studies show that transgender adults are more likely to be without health insurance than the population as a whole, complicating efforts to provide the trans community with the medical services they need and desire. About 14 percent of transgender adults were uninsured in 2015 compared with 11 percent in general in the United States, according to the U.S. Transgender Survey by the National Center for Transgender Equality, a Washington D.C.-based advocacy group for transgender people.

Transgender people are unable to obtain health insurance for a variety of reasons, including unemployment and lack of housing, said Maddi Behrouzmand-Stratton, program manager at the Gender Health Center in Sacramento, who prefers to use the pronoun "they."

Transgender people tend to distrust insurance because of discrimination they may have experienced in health care settings. Many don't even know whether they are eligible for Medi-Cal or health care subsidies, they said.

Even for those who have access to free or low-cost health care through Medi-Cal or the Affordable Care Act, getting information on care and services they qualify for can be challenging because of stigma and discrimination, Behrouzmand-Stratton said.

“The front desk might call them by their legal name, or providers might tell them they don't want to work with them or won't give them a referral for hormones. All of this can be really damaging (emotionally)."

Indeed, one in four respondents to the 2015 national transgender survey reported experiencing problems with their insurance related to their transgender status over the preceding year, including insurers refusing to change their name and/or gender in their records or being denied coverage for services often considered gender-specific. Nearly one-quarter reported that they avoided seeking health care out of fear of being mistreated as a transgender person.

Free services for the uninsured

In the Greater Los Angeles area, a majority of uninsured transgender people tend to be undocumented and therefore ineligible for coverage through Medi-Cal or the Affordable Care Act, said Jim Mangia, CEO of St. John's Well Child and Family Center in Los Angeles, which houses a health program at 23rd and Flower streets for the transgender community, run entirely by transgender people.

The clinic provides hormone therapy and primary care to about 2,500 transgender patients each month, about half of whom lack health insurance because they are undocumented, said Mangia, who is gay.

"I've always been close to the transgender community," he said. "But what pushed me to start this program is the fact that these people have nowhere else to go. They were buying horse hormones at swap meets and getting really, really sick from it."

Jim Mangia, CEO of St. John’s Well Child and Family Center, at the Los Angeles health center. Mangia has a close relationship with the transgender community and St. Johns is the largest provider of transgender health services in California.Photo by Sarah Reingewirtz, Pasadena Star-News/SCNG

Hormone therapy should be administered by a physician on a case-by-case basis, and self-administering hormones or buying unverified drugs off the street can result in serious side effects and health problems, Mangia said.

He said his clinic doesn't charge uninsured patients for the hormones, which typically cost a few hundred dollars per dose. The clinic counts on federal money and philanthropy to fund the transgender program, he said.

Mangia's patients are not just Angelenos. They come from Long Beach, Orange County, San Diego, Riverside, Bakersfield and from as far away as Las Vegas.

Fear and hate

Leyva is a regular at the clinic. She qualifies for Medi-Cal because her application for asylum was approved two years ago. But, she said, her attorney advised her against applying for the government-funded health insurance program out of fear that the Trump administration may decide to deny legal permanent residency to people who depend on public assistance — the so-called “public charge” rule.  

If the rule does go into effect, it cannot be applied retroactively, and legal challenges could stop enforcement for some time. But that has not stopped many attorneys from incorrectly advising their clients to take an unnecessary step that can lead to dangerous health consequences.

"I don't know how the law is going to change, and I don't want it to affect my green card," Leyva said. "I'm afraid to even go to a (federally qualified health clinic for underserved populations) because I'm worried about my immigration status. I pray to God every day that I don't fall sick."

Many of the patients who visit Mangia's clinic and a handful of others in the region are immigrants from Central America and Latin America. Miah Andrade said she fled Honduras because she was the target of violence and hate crimes.

"I ran away because I wanted to come to a place where I am free to walk down the street," she said. "Back home, I would be called demeaning names, and that wasn't the worst of it. In our culture, there is no word for 'transgender.' People would just refer to me as a man who is trying to dress like a woman. It was traumatic."

Andrade, now 24, said she started her transition back in Honduras when she was 19. Here, she faces different challenges. Her biggest concern right now is how to get surgeries such as breast augmentation and sexual reassignment.

She hasn’t been able to get Medi-Cal because she is still undocumented, but new state legislation will expand eligibility to undocumented residents up to age 25.

Medi-Cal covers hormone treatment, gender-reassignment surgery and other procedures that are considered “medically necessary.” Typically, cosmetic procedures such as breast augmentation are not covered by Medi-Cal.

Miah Andrade, 24, of Los Angeles, left, talks with Transgeneros Unidas Program Director Khloe Perez-Rios, at the Bienstar Human Services office in Long Beach on Wednesday, June 19, 2019.Photo by Kevin Sullivan, Orange County Register/SCNG

But for the uninsured like Andrade, the lack of access to surgical procedures is a constant source of stress.

"Not being able to get the surgeries I need to transition fully, that affects my state of mind," Andrade said. "I worry all the time about falling sick or being hospitalized and not having the money to pay for it. I know a lot of girls here. We're in the same fight."

CiCi Lopez came to the United States about 23 years ago from Puerto Vallarta, Mexico. She couldn’t find stable employment, she believes, because of her gender identity. Lopez is undocumented and uninsured.

"I was homeless for a while," she said. "Now I live in a motel, and I'm struggling to pay rent."

A lifelong process

Lopez began her transition at age 16 when she was in Mexico, where it wasn’t easy being transgender, she said. Men would call her names as she walked down the street. People would throw stones at her.

"My family was supportive," she said. "But I left Mexico because I didn't want my parents to suffer seeing me like that."

The biggest issue for her now, Lopez said, is to pay for a doctor or medical services. The hormones she got off the street affected her nervous system and skin pigmentation, she said, holding out her hands that still have white patches. She stopped taking them.

"People think transitioning is a short-term thing," Lopez said. "For most of us, it is a lifelong process. We are all at different stages of the transition."

Rachel Pozos, 36, of Santa Ana, said she stopped taking hormones because they were making her sick. And she says she is happy where she is in her transition. Pozos did pay out of pocket for her surgeries — $3,400 for breast implants and $5,000 for laser hair removal.

"I got those things because I don't want to be bullied," she said.

Mental and emotional struggles

Transgender people also struggle to get mental health services, said Dr. Kristen Vierregger, who specializes in transgender hormone therapy. Ninety percent of patients who visit her Buena Park clinic, Metamorphosis Medical Center, are transgender, and about 10 percent of those are uninsured, Vierregger said.

Vierregger said she helps uninsured patients who pay out of pocket by keeping consultation rates low.

"I've seen that transgender people's mental health really improves when they are able to access the health care they need -- be it hormones or surgeries," she said. "I try to put myself in their shoes. If modifying my body was out of the question because I can't afford it, why wouldn't I be depressed? Patients suffer in very real ways when they cannot access the care they need to feel good in their bodies."

Depression is the most common mental health issue for transgender people, and it’s mostly triggered by stigma and prejudice, she said.

"When they are out in public and people don't recognize them correctly, that can be debilitating. Every social interaction is informed by that anxiety. Self harm is common among those who feel their body is betraying them. If despair is acute, suicidal ideation occurs."

The Trump administration has proposed rolling back an Obama-era regulation clarifying that the Affordable Care Act’s prohibition against health care discrimination on the basis of sex includes gender identity. That could prove devastating for this vulnerable and marginalized community, Vierregger said.

Medical intervention such as hormones and surgeries can be "truly lifesaving" for transgender patients, she said.

"I know people don't look at it quite this way. But, this is a life-and-death issue."

Sammy Caiola of Capital Public Radio contributed to this report.

This project results from an innovative reporting venture – the USC Center for Health Journalism News Collaborative – which involves print and broadcast outlets across California, all reporting together on the state’s uninsured.

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