Health

The Organization That Wants to Make Gender Affirmation Surgery Easier

Because even with insurance coverage, the out-of-pocket costs can total in the thousands.
December 9, 2016, 5:00pm
Photo: Hillary Fox / Stocksy

As a child, Rhys Harper often dreamed that he was peeing standing up. He would wake to find himself wanting to go back to sleep to continue the fantasy. At the time, he didn't understand what it meant or that more than two decades later, those recurring dreams would become a hard-fought reality. Harper was assigned female at birth and was raised as a girl, though he always knew something wasn't quite right. But it was Oklahoma in the 90s, so the idea of doing anything about it was far-fetched. It wasn't until Harper was 26 and living in Syracuse, New York, that he realized he was transgender and he wanted to pursue living as his true self. In May 2012, at the age of 29, he started taking testosterone, and in January 2013 he underwent a double mastectomy (also known as top surgery) to create a more masculine physique.

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Not long after healing from that surgery, Harper was teaching swimming lessons at a local YMCA and would make a mad dash for the single bathroom stall to change. One day, standing in the harshly lit bathroom stall, he realized he wanted to go one step further. He wanted to pursue gender confirmation surgery—a phalloplasty—to get a penis. "Why would I deny myself the chance to be the most happy I can be?" he says.

But Harper's health insurance didn't cover such procedures and the price tag was well out of reach: It can cost upwards of $140,000, not including related costs such as travel, lodging, food and medical equipment once you leave the hospital. In December 2014, Harper moved to Little Rock, Arkansas, and started a new job at a company whose insurance just happened to cover transition-related health care. He researched doctors and found Loren Schechter, a plastic surgeon in Chicago who performed phalloplasty surgeries.

A few recent changes in policy have led to an increase in the number of transgender men seeking gender confirmation surgery: Most insurance didn't cover it until now, and cities and states (as well as Medicare and Medicaid) have removed exclusions in their plans for transition-related health care. For the first time, many trans people are able to access treatment that the American Medical Association has deemed to be medically necessary care. That includes therapy, hormones and sometimes even surgery.

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After that, though, patients are often left with a pricey path of healing with no support. Even if insurance covers phalloplasty surgery, there are many expenses that make it difficult for often already marginalized trans people to be able to take advantage of the procedure.

On May 31 of this year, Harper went under the knife for the first part of phalloplasty surgery. Healing has not been easy. He was tethered to a bed in the ICU for five days and then moved to a regular floor in the hospital for another week. He returned to the hospital a few days after leaving with a painful fungal infection in the groin incision. In total, he's had 16 surgeries over a period of six years with a lot of complications that are still unresolved. While on this challenging journey, Harper had an epiphany: With all the hidden costs before and after the surgeries, including transportation to the hospital (which often includes airfare) and a secure place to recover, gender-affirmation surgery was only available to the select group of people with sufficient financial (and emotional) support.

"I had a bad experience, and through that realized I want to help people," he says. "It's so hard, especially for trans people who are so vulnerable. I've had to advocate for myself every single time, including pain management. I can't imagine being a trans who doesn't have education, resources, or social skills to know how to advocate for themselves." So was born Harper's brainchild for an inclusive resource for trans people seeking surgery so that their transportation, post-hospital recovery stay, and in some cases, the most important piece—moral support from peers who are going through or who have gone through the same thing—would be covered.

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Dubbed "Rhys's Place," and launched in partnership with Harper's friends, Tony Zosherafatain and Jake Eisinger, both of whom underwent gender confirmation surgery at the same time as Harper did, the organization is now in its initial fundraising stage. Harper hopes to raise at least six months of rent for the space, which he plans to open in New York City in the summer of 2017. A Go Fund Me campaign has $2,500 raised as of October of this year.

The resource is a first of its kind, aiming to provide a place for trans men to stay when they're recovering, medical equipment, food, and even transportation to and from the airport. Even with insurance coverage, the out-of-pocket costs can total in the thousands. People are already reaching out to relay that they have surgery booked this fall and to see if Rhys's Place is open yet.

While there is no other resource available quite like Rhys's Place aims to be, there are some organizations that help trans people pay for surgery when it's not covered by insurance. The Annual Transgender Surgery Fund, My Transition Funding, and the Jim Collins Foundation are small, volunteer-run non-profits that do this.

"There is more awareness about healthcare for transgender people, but most are not being served by the marketplace," says Austin H. Johnson, a trans man and volunteer who manages the communications for the Jim Collins Foundations. The foundation fills that gap by providing partial or full grants to trans applicants to cover the medical costs associated with their surgery. They receive upwards of 300 applications per year and have allocated 14 grants so far.

"At 44, I have seen my body blossom into the woman I know I am," says 2016 Grant Recipient Katrina Dawn Stewart in testimony to the Jim Collins Foundation. "By helping me become whole, they allow me to re-dedicate my energies to change where I am, where change is most needed."

For Harper's friend and Rhys's place co-founder Zosherafatain, gender confirmation surgery was about finding meaningful romantic relationships. For three years, he put off dating because he didn't feel comfortable with his body. The surgery was "necessary in the sense that it's like a heart transplant," Zosherafatain says. "To me, having a penis honestly is almost as vital as having a heart."