Inside the battle for trans care in New York

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Trans activist Brooke Cerda in The Center in Manhattan. (WNV/Aaron Cantú)

After over 30 years of running from her home, her family and herself, trans activist Brooke Cerda speaks with the conviction of someone who has found her reason for being.

On Valentine’s Day, she and I were standing atop the frozen sidewalks in front of 90 Church Street in Manhattan’s financial district, where dozens of protesters waving heart emblazoned-signs were demanding access to fair, holistic health care for New York’s transgender population. Their call to action: an appearance by New York State Health Commissioner Nirav Shah, who is a vocal proponent of excluding transition-related care and coverage from the state’s Medicaid. When a 2011 proposal to overhaul Medicaid recommended that the program cover “transgender surgery/hormone replacement therapy and treatment,” Shah told the New York Post, “any proposal to have gender reassignment surgery funded by Medicaid would be rejected.”

Now, those most hurt by the commissioner’s intransigence have taken their demands to the streets. “A lot of people are scared that trans health care is going to bankrupt us,” said Cerda. “They think it’s going to take the economy down the drain. But that’s ridiculous. I tell them: ‘Someone is born with a cleft lip, wouldn’t you take care of it?’ It’s a similar thing [cost-wise],” Cerda says.

In other states where Medicaid covers transition surgery, the benefits of the coverage have far outweighed the costs, even in the eyes of state agencies. In California, the economic impact of such coverage was found to be “immaterial,” and in a 2012 report the state’s Department of Insurance concluded that, “the benefits of eliminating discrimination far exceed costs.”

In New York, the battle for trans care is a small piece of a broader nationwide struggle to bring down one of the last remaining walls of state-sanctioned discrimination. In recent years, as the transgender community has gained prominence in the national spotlight — a phenomenon that came belatedly, after it became normal to see gay white men on prime-time television — trans activists have grown increasingly vocal in asserting their basic rights, particularly to full medical coverage.

And at the forefront of this movement are people like Cerda, who have been riding — and now leading — this wave of change.

Identity and appearance

A drifter turned educator and activist through her involvement with New York City’s militant transgender movement, Cerda now facilitates a support group for queer and transgender New Yorkers. She also founded and leads a group of her own: The Transgender/Cisgender Coalition, a New York-based alliance organization that confronts pressing issues for transgender women of color.

A week after the protest, Cerda and I sat in the hallway of The Center, a hub of resources and support for the LGBTQ community in New York City. She is noticeably tired from the new depression medication she’s just started taking, but she still speaks to me animatedly about her past.

She was born and raised in Guadalajara, Mexico, but moved to Chicago — without proper documentation — at the age of 23, when the emotional abuse of her home became too much to bear. In Chicago, she lived with her aunt, who tried to impose the same gender-normative ideas on Cerda while she was still presenting as a man. As a result, Cerda lasted less than a year in that house before moving to New York City in the early 90s, alone, without a plan except to continue running from everything she had already known.

“I moved because I wanted to be anonymous,” she explained. “But then I started imploding with depression and anxiety, and I realized it’s impossible to live without social support.”

Twenty years ago, there was still little support for transgender and gender non-conforming New Yorkers — especially in the area of health care, save for a handful of centers offering free HIV testing. This issue has only begun to change within the last decade, as care providers took it upon themselves to educate themselves on the forms of care that best serve the transgender population. The Community Healthcare Network in Jamaica, Queens, for example, established a transgender program in 2003 after providers noticed a dearth of assistance for transgender sex workers in the Jackson Heights area. Jessica Contreras, who lived in the area at the time, led the process of outreach that eventually brought a number of transgender patients to the network for their primary health needs, HIV testing and counseling.

The most common thing new patients demand, Contreras quickly learned, is hormone therapy. According to Contreras, a large majority of her clients in need of transition-related care have already resorted to illicit means of securing hormones by they time they showed up to the network.

“Getting hormones is life sustaining thing [for transgender people], and so many issues come about from them not being able to [get] proper care [by] getting hormones,” said Contreras. “They tend to use black market hormones… and as result a lot of them have issues like blood clots and chronic strokes when they finally do see a doctor.”

Hormones are undoubtedly important for some, but not all, transgender patients. But according to Cerda it’s also the bare minimum a community center can do. If medical centers want to demonstrate real solidarity with the transgender community, she said, they need to advocate for an end to the Medicaid policy that bars coverage of transition-related surgery.

“What about surgery?” asked Cerda. “What we need is surgery.”

She explained that actual surgery is the only thing that can truly align people’s appearances with their identities, but without medical coverage it’s often prohibitively expensive. Yet, without the surgery, even basic daily activities can be traumatic experiences. “It’s torture. Going to the beach is torture. And so is church and the gym,” she said. “It’s so fucking obvious when people stare at you… It’s aggression.”

A turning tide

When Cerda landed in Manhattan, she was still presenting as a gay man. She tried to embed herself in the fledging gay rights movement, but it wasn’t an easy fit.

“I was still presenting as a boy,” Cerda explained. “I didn’t see any [transgender person] who was dignified. I saw a lot of drag queens. People laughed at them… it was more like a spectacle.”

According to many trans people, advocates and health professionals, this engineered invisibility of transgender people circa 1993 was part of a broader type of structural violence that functioned by excluding a class of people from the basic things necessary for a dignified, healthy life.  Scholar and physician Paul Farmer writes that any institutional “offense to human dignity” falling along the lines of social inequality is a form of violence, a definition that encompasses the interlocking network of discrimination in housing, employment and healthcare that transgender people encounter daily.

This sort of violence is especially salient in the trans community, where the rate of poverty is four times the national average and 19 percent of the population has no health insurance. In fact, the exclusion of trans care is the most common form of discrimination in health care, and one that flies in the face of recommendations by all seven of the most influential professional medical associations, including the American Medical Association.

“Like we always say, my body is not a democracy,” she said. “Telling somebody what they can and can’t do with their body is violence.”

However, the tide seems to be turning in other areas of the country, where states are increasingly including trans coverage in health care plans. The San Francisco-based Transgender Law Center has been in operation for over a decade, but only recently has client advocate Danny Kirchoff witnessed a change in how states handle insurance policy for transition-related care.

“It’s been the last couple of years that [the law] has changed to specifically say denial of transition-related care is discriminatory,” he said.

He explained that the tipping point was when lawmakers realized that it’s plainly unfair for certain procedures to be covered for cisgender persons, such as gynecological exams, while these same procedures are denied to transgender people in the middle of their transition, on the grounds that such procedures are cosmetic or experimental. And California isn’t alone. Vermont, Colorado, Oregon, and Washington, D.C., have also outlawed blanket insurance discrimination. Kirchoff attributes the shift to tireless advocacy and the increasing awareness of medical professionals about transgender health needs.

“Things have moved so much since I got here in 2009,” he said. “People are now understanding the issues and listening to transgender people.”

Toward holistic care 

But while some insurance and medical professionals are listening to the transgender community, Cerda knows firsthand that these people don’t seem to live in New York. About three years ago, she began to confront her true gender identity in earnest after befriending other trans activists. The next step was beginning to take testosterone blockers this past April after months of second-guessing. But she doubts how far she can take the process because of the prohibitive costs.

“If I could get confirmation [sex reassignment surgery], that’d be great. But there’s no way I can afford it,” she said. The cost for male-to-female surgery can run up to $24,000 and the cost for female-to-male care hovers around $50,000.

Sometimes this surgery is partially covered by private insurance. “I just found that my friend Vanessa got a bill for $11,000 for her [transition] surgery. And that’s because part of her bill was covered by her employers.” But for those like Cerda who rely on Medicaid the battle continues.

For now, Cerda is planning to make due with the few drugs she can get covered and to and pay for the rest of her treatment out of pocket. She also has to contend with doctors who are ignorant of trans-related health issues — a problem affecting a substantial number of transgender people. “The other day my doctor asked me, ‘How much were you told is maximum estrogen that you can have?’” she recounted. “I said, ‘Well I don’t know. Five hundred milligrams? Seven hundred?’ I just wanted to say, ‘You’re supposed to know, you’re the doctor!’”

This type of ignorance, particularly on the part of medical health professionals, was an oft-cited concern during a community meeting hosted by the Audre Lorde Project in late March. At the meeting, panelists and attendees testified to how they were often dehumanized by insensitive caregivers at health centers — “treated like something at the zoo,” lamented one person — and how health care for transgender people must mean more than transition-related surgery.

“Trans care needs to be holistic. Not everything has to be focused on the transition,” said panelist Elliot Fukui. Still, other panelists acknowledged that institutional recognition and support for transition-related procedures would be considerable steps toward engendering a broader understanding of health care for trans people.

The Audre Lorde Project itself is a good example of what holistic care can look like. The group, which helped organize the protest against Commissioner Shah, has worked with the Sylvia Rivera Law Project to back successful lawsuits against city agencies for discriminatory policies against trans people. It also offers classes on personal living and trans liberation for transgender people of color. And now it’s aiming to overturning the discriminatory Medicaid provision through advocacy and community educative initiatives.

The organizing continues

Back at The Center, Cerda showed me a giant bulletin board covering a great expanse of the hallway where we were sitting. It was filled with a kaleidoscope of fliers advertising different resources and events: support groups, hobbyist meet-ups, business cards for allied attorneys. She directed my attention to an ad offering to Photoshop the image of clients into pictures of their families.

“I put that one up,” she said. Cerda herself knows what it’s like to be alienated from one’s family — a problem that is far too common in the trans community. “I sent my picture to my family five months ago, but they haven’t commented,” she added. “My niece said to send it again. I guess I’ll send it again.”

But she didn’t have time to dwell. Right after our talk, she was leading the group meeting for male immigrants, and it was a full house. As we walked into the meeting, she hugged and greeted a number of people in the room, all of whom knew her by name.

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