On the wooden-planked porch of an Ostrom Avenue home, a small group of students blows puffs of cigarette smoke into the freezing air, their happy banter bringing the otherwise silent street to life. In the huddle of knit beanies, worn jeans and black and khaki-colored coats stands Mateo Diaz, 21, house resident and the night’s host. He emerges from a dissipating cloud — dressed in his own black beanie, flannel-lined denim jacket, black jeans and black leather combat boots — and heads down the porch’s stairs, directing party-ready guests toward the back door. In Diaz’s dimly lit, musty basement, students sip the contents of their red plastic cups, dance around the pipes of a hot-water heater and chant the lyrics of a hip-hop song that makes the walls and low ceiling vibrate: somebody come get her, ‘cause she’s dancing like a stripper.
For $5 at the door, Diaz’s friends have the opportunity to drink unlimited beer and buy liquor shots of their choosing: $2 green Jell-O in white plastic Dixie cups or $3 Patron straight from the bottle. For $5 at the door, they’re donating to a cause, too: Diaz’s $5,975 chest reconstruction surgery.
Diaz, a transgender man, works multiple jobs while studying at Syracuse University to afford his chest procedure. Between the surgery and travel and recovery costs, Diaz must pay a total of $7,715. And because insurance will not cover any of the procedure, Diaz must pay $7,715 out of pocket.
Unaffordable costs
While the transgender community has gained increased social recognition thanks to the likes of celebrity figures like Caitlyn Jenner [16] and Laverne Cox [17], transgender individuals like Diaz struggle to achieve acceptance at a more basic (and arguably more necessary) level: with their health care. According to the Transgender Law and Policy Institute [18], hormone therapy costs about $100 a month and surgeries can cost upwards of $100,000, depending on the type.
In 1989, Medicare adopted a National Coverage Determination categorically excluding what it called "Transsexual Surgery" from Medicare coverage, regardless of a person's individual medical conditions and needs. This meant that for years Medicare did not cover sex reassignment surgery for transgender people due to a decades-old policy that categorized such treatment as experimental, not necessary.
“There was a point where people considered this treatment to be cosmetic,” said Ma’ayan Anafi, Policy Counsel at the National Center for Transgender Equality [19]. “In the past decade, the medical community has reexamined that and said ‘wait, that’s not actually true.’ These treatments can be life-saving for people and are absolutely medically necessary for certain individuals.”
In 2014, Transgender Medicare Exclusion was repealed, and Medicare began to include preventative care, hormone therapy, and medically necessary reassignment surgeries for transgender individuals. But, medical necessity is subjective, meaning insurance often fails to cover these therapies and procedures. As a result, transgender individuals must finance their hormones and surgeries with cash. Diaz’s party earnings will cover $700 worth of his surgery.
Doctors and Insurance
In April 2014, around the time Diaz began taking testosterone as part of his transition, his friend Rachel “Babyface” Card threw their own party to help pay for top surgery (“their” is Card’s preferred pronoun). Diaz said that before the party, Card took out multiple loans and maxed out their credit cards to afford a procedure by Florida-based plastic surgeon Doctor Charles Garramone [20]. Garramone, who is considered a global authority on female-to-male chest surgery, charges between $6,000 and $6,500 for a breast procedure.
After deciding to go ahead with top surgery, Diaz began a months-long process of finding the right doctor — someone who was both affordable and talented. He considered Garramone, but nixed the idea when he learned Garramone does not take insurance.
“He’s one of those doctors that’s like ‘I know I’m so good that people are going to come to me anyway. I don’t need to take insurance. What’s the point?’” Diaz said.
Surgeons who disallow insurance payments on surgeries reap multiple benefits, like bypassing pre-approval steps mandated by insurance companies, receiving payment up front from patients, charging higher rates for procedures regardless of insurance reimbursement policies, and paying lower overhead costs because they don’t need staff to deal with insurance companies.
Even when medical institutions take a transgender individual’s insurance, the insurance company itself may still opt to exclude certain healthcare from its coverage.
“These exclusions are not based on medical science,” said Anafi. “They’re not based on the consensus of the medical community and Department of Health and Human Services recognizes that. These exclusions are discriminatory and illegal.”
The World Professional Association for Transgender Health [21] (WPATH) has set in place what Anafi says is the most commonly accepted protocol for medical professionals who deal with transgender healthcare. While WPATH outlines various forms of treatment and the criteria that determine whether they should be considered medically necessary, insurance companies including Medicaid and Medicare tend to ignore the organization’s suggestions.
While conducting online research, Diaz found surgeons who were more affordable than Garramone, but lost enthusiasm for the affordable options when he read reviews and saw photographs of their work.
“Other surgeons take insurance because they have found it to be a new market to make money out of, but they have the worst results ever,” he said. “People’s chests are just—they’re horrible. But of course these [transgender] guys are all happy because it’s literally a weight lifted off of your chest, and they don’t care what it looks like as long as they have a flat chest.”
Dr. Jordan Deschamps-Braly [22], a San Fransisco-based plastic surgeon specializing in facial feminization surgery, sees merit in Diaz’s observations.
“As more insurance companies cover this stuff, more people are starting to dabble in it and we’re seeing a lot of problems,” Deschamps-Braly said. “I don’t mean that doctors should be restricted, per se, but it creates a lot of problems in terms of surgery for people.”
Deschamps-Braly performs facial surgery — a procedure often requested by male-to-female transgender patients — once or twice a week. He says each procedure takes 12 to 13 hours, and he performs 50 to 100 such surgeries each year. When demand for transgender procedures cannot be met by highly specialized surgeons (Deschamps-Braly was taught by Dr. John Ousterhout, who is considered a pioneer of facial feminization surgery), transgender people in need of surgery end up seeking doctors they can afford and who have appointments available. Unfortunately, these doctors may not be the most experienced professionals.
While Diaz decided hormone injections and surgery were necessary for his transition, a proper transition cannot be defined by one particular method. The lack of a standard definition for the word ‘transition’ and the minimal insurance coverage offered to transgender individuals has impeded the existence of mandated medical training in transgender-specific health care. According to Dr. Karen Teelin [23], who works in the general pediatric department at Upstate University Hospital in Syracuse, transgender hormone therapy is a fairly new field for endocrinologists, let alone doctors of internal medicine or medical students. Teelin, like Deschamps-Braly, received highly specialized training from endocrinologist Irene Sylvan, an early leader in the transgender endocrinology field.
“When she retired less than a year ago, I inherited her patients because the other endocrinologists are swamped with other issues, and I don’t think any of them had an interest,” Teelin said. “[Dr. Sylvan] trained me over the last year she was here and she is still in touch with me through email if I have any questions. I’m lucky I have a direct line to her. We all read the literature. It is tough because most medical students get very little or no training at all.”
Chosen Family
Diaz’s biological parents, Christian pastors who live in California, have not supported him financially or emotionally during his transition. In fact, both have been outspoken about their beliefs: Diaz needs to repent for his sins and he will go to hell for the person he has become.
“It sucks,” he said matter-of-factly. “That’s the best way I can define it. It is what is it.”
To fill the void, Diaz surrounds himself with what he calls his chosen family.
“They are pretty much the people here at the [LGBT] resource center, my really close friends here, definitely my uncle and my cousins in New York — they live in Long Island — my puppy and my mentors who are friends who have stepped up to that role in my life,” Diaz said.
As he speaks, Ace, his black labrador mix puppy, runs in circles around the oak-colored coffee table in the center of Syracuse University’s LGBT Resource Center [24]. When Ace captures a plastic cup and begins to gnaw it to bits, Diaz grabs the four-month-old pup with his caramel-colored hands and hoists the dog onto his lap.
“What do you think you’re doing? Stop that,” Diaz scolded, a silver hoop piercing moving subtly on his bottom lip.
Ace stares up at Diaz, and Diaz stares down into big, brown puppy eyes, laughing to himself.
The Right Doctor
Originally, Diaz booked his top surgery for December 15. After a long search, including insurance troubles and wariness about the quality of procedures, he found a plastic surgeon who fits his needs: Dr. Russell Sassani [25] in Fort Lauderdale, Florida. Diaz spoke extensively with Sassani’s staff and has also Skyped with the doctor to get a feel for the office environment. Diaz says he felt Sassani’s staff was more welcoming than Garramone’s, the first doctor he researched.
“You don’t want to wake up from your surgery and have someone be like ‘get the f*ck out,’ you know?,” said Diaz. “You want someone who is going to be there and make you feel okay because this is such a big thing.”
By December 15, Diaz received a loan rejection; he did not have any credit established and was under 21, the age requirement for a CareCredit credit card. Desperate for a solution, he rescheduled surgery for mid-March and applied to multiple transgender surgery funds and scholarships. He was awarded $2,300 by the Point 5cc Transgender Surgery Fund [26] and following his 21st birthday in January, he opened up multiple credit cards and was approved for CareCredit. After his fundraising party, scholarship award, $1,600 in loans, Diaz can finally afford surgery.
Aftermath
Following a short recovery in Florida, Diaz returns home with scars and soreness on his chest. His prescription paid medication induces drowsiness, but he is fully aware of his new financial situation.
“I am so f*cked.” Diaz breathed in, then yawned. “All my accounts are at zero, I have three credit cards that are maxed out, and if it wasn’t for my boyfriend who has a full-time job...”
One week following his surgery, Diaz stands in suit and tie on Goldstein Auditorium’s wooden-planked stage. He is performing in the second annual Mr. Burgundy and Grey Pageant For Gentlemen [27], a contest hosted by one of the school’s Latin sororities. To his knowledge, Diaz is the first transgender man to compete in this national pageant, which was established in 1975. He dances alongside the other contestants, he sings a song for his late grandmother, and he comes in second place. If he won, he would have donated the prize money to the Point 5cc Transgender Surgery Fund.
Now, Diaz must ignore the soreness in his chest and go back to his two desk jobs. He is $1,600 in debt from surgery and pays for college by himself.
He is also $5,975 closer to being the man he wants to be.
