Moog is sitting in front of a camera in their mom’s living room.
The camera is sitting on stacks of storage containers, the walls are beige. There’s a framed mirror on the back wall. They take a breath and hit record, not realizing the shot is just slightly out of focus. They begin.
“I’m here to ask a huge favor.”
Moog, who only identifies themselves online by their first name, is filming themselves in their mom’s living room because they have a problem; a $6,000 problem.
They want to get straight to the point, because it’s a lot of money! But it takes time to explain a $6,000 problem. So this video, which was originally supposed to be a short plea that they never even wanted to make, will run exactly 10 minutes.
“I hate asking people for things,” Moog says into the camera. “I don’t like the fact that I can’t provide for myself. That’s my one thing I’ve always wanted to do is provide for myself.”
But here is Moog, with their pleading brown eyes, sitting in this dining room, filming this out-of-focus video, attempting to find a solution to this high-cost problem.
Moog, the 17-year-old with close-cropped brown hair and a round face, is agender. But after puberty, they developed massive breasts. GG-breasts, to be specific. “Which is huge and unfortunate, for someone who wants to pass as neutral,” Moog tells the camera.
What Moog is describing is called gender dysphoria, which arises when there’s conflict between the gender assigned to someone at birth and the gender (or lack thereof) with which someone identifies. To combat their gender dysphoria, Moog had been binding for about three years, and taking testosterone treatment for six months when they posted the video to YouTube and Tumblr in March 2015.
The testosterone, when combined with the binding and other mental health therapy, started to turn things around for Moog. Then, they started to have panic attacks. Full-on-call-911-while-you-pass-out-at-the-kitchen-table panic attacks. Moog’s hormone therapist hypothesized the long-term binding had trained Moog’s chest muscles to not fully expand. The testosterone treatment exacerbated this because its intended effect (increased muscle mass) created an unanticipated side effect (making it harder to breathe).
Their doctors agreed a breast-reduction surgery would be the best and quickest solution to get Moog breathing normally again. The procedure and other adjacent costs would be at least $11,000 — not counting the costs of blood work, an EKG or a mammogram. Moog, and their mother, didn’t have this much money. Their insurance plan required a year of hormone therapy first, but Moog felt they didn’t have another six months.
A possible solution suggested by their mother? Stop binding. But “as anyone with dysphoria knows,” a slide in the video reads, “you can’t just stop binding.” So, here’s Moog, asking the Internet to donate money to their PayPal link. The surgery is their shot at a better life. Everyone wants to not have to actively think about breathing, right? Can you help?
The internet is supposedly the great equalizer. We crowdsource for unnecessary cinematic sort-of sequels (and completely necessary ones), potato salad and to find missing persons after an earthquake. Why not for something like health care, that makes the person feel like a fully realized human being?
Moog’s approach to the problem — crowdfunding — is no longer a novel approach to raising money for medical care. It’s the most popular category on GoFundMe and YouCaring, two major crowdfunding websites. In fact, YouCaring told me that medical fundraisers comprise 40 percent of their crowdfunding drives, and more than 150,000 people have used their fundraising service to fund medical expenses.
But as the nation continues to recognize, at a painfully slow rate, that nonbinary, agender and transgender Americans are fully realized people deserving of medically necessary health care, it is a revolutionary act to open the financial battles of your health care to the public. Too bad revolution tends to be expensive.
More Americans than ever have health insurance (sincere thanks, Obama!), but insurance remains a multi-billion dollar industry that’s barely navigable to laypersons with medical procedures like transition-related surgeries and psychotherapies only performed by certain number of doctors. Which says nothing of what’s to come of transgender health care access as the Trump administration makes moves to cripple Obamacare.
In 2017, the public support for transgender people is growing. Last August, nonpartisan independent research organization PRRI found that 72 percent of Americans favor LGBT nondiscrimination laws. Organizers of the Women’s March on Washington pointed out the struggles facing transgender Americans as a specific reason to march. But what good is support for if they can’t afford treatment?
“This is my last resort, asking people for money,” Moog says.
Health care always comes back to money. Transition-related health care is multi-faceted and medically necessary, according to the World Professional Association for Transgender Health, an organization that works to promote high quality, evidence-based care for gender-nonconforming people around the world. As conservatives continue their crusade against transgender bathroom use and non-discrimination ordinances, in addition to everyday transphobia, the question becomes how do we adequately provide health care for our trans and gender-nonconforming citizens? Because, of course, in the year of our Lord two thousand seventeen, we’re still debating the basic humanity of a segment of the population.
During the beginning of our first interview, Moog asks me straight-up, “Sorry to ask, but are you cis?” Yes, I nod. “Well, then I’m not sure you can understand.” And it’s true, so Moog continues. “I didn’t realize how desperate you have to be to ask strangers for money,” they told me.
When Moog posted the video to Tumblr, they had about 22,000 followers, give or take. “I felt confident enough to ask them for help,” they told me, because the followers (built from the blog’s then-firm devotion to web series “Carmilla” and the TV show The 100) felt like friends. In two days, they had raised $1,000. After just six days and a few larger donations, Moog raised more than $6,000. “It was such a surreal feeling. I was looking at the number in my PayPal,” Moog says. It didn’t quite sink in that the surgery was now entirely possible, but they kept looking at the total in the PayPal account. “It was still $6,000.”
I should point out that Moog’s story is a bit different than other persons, in that they used a personal PayPal for their fundraiser. Most others used a more formalized system with GoFundMe or YouCaring. Regardless of the medium, the end result is the same: money for the care you need.
“It was just a complete shock. I was trying to write out a thank-you post and I had to stop,” they say. “I cried very hard when the funds were raised. I didn’t know how to comprehend what people had done for me.”
Moog’s surgery was three days after their high school graduation. In an update video weeks after the procedure, Moog talks about the immediate aftermath of the surgery (lots of tears), being on so many painkillers, being unable to bathe themselves and the months of swelling ahead.
“In about three months, I’ll give another update on how I’m doing. But for now, I dunno, I’m satisfied with the job [the doctor] did on top,” they say.
Medical transition, if that’s the journey a person wants to pursue, can encompass a number of procedures and therapies, not to mention legal processes. Surgery isn’t the only way to achieve wellness, explains L. Elaine Dutton, manager of Trans Care Services at the Mazzoni Center. The Center, which has, for the past 35 years, focused on LGBT health care for the Philadelphia community, practices the idea of whole body health. “There is not a singular narrative when it comes to this so it really depends on what their goals are,” Dutton tells me.
The necessary medical care can include hormone replacement therapy, mastectomy, phalloplasty, vaginoplasty as well as psychotherapy. And these things are not cheap. A study authored by Dr. William V. Padula of Johns Hopkins Bloomberg School of Public Health in the Journal of General Internal Medicine in October 2015 estimated that costs for medically necessary gender confirmation surgeries were between $10,308 to $22,025, depending on the use of hormone replacement therapies. Dutton concurred, adding that these costs also depend on the surgeon and their fee. Psychotherapy, another important part of transition-related health care, can also be pricey; she estimates at $120 to $150 per hour.
“This is not just a medical thing,” she says. “There are a lot of social and emotional components. We recognize how important it is to provide support.” That’s why the center also offers legal services for name and identification document changes.
One of the people being treated at the center is Gossamer, a biracial artist from a town about 30 miles outside of Scranton. Gossamer and I connected after I found their fundraiser on GoFundMe; they also asked to only be identified by their first name. As an artist, they’re trying to make something closer to a Kickstarter. If you donate to their fund, you get a book of Gossamer’s art.
Art is an anchoring influence in their life, so offering a bit of art felt a natural part of a journey that started back in 2012. That’s when they graduated from art school in Massachusetts and returned to Pennsylvania to “reorganize my mental health, because I finally had the time.”
After psychotherapy and changes in medicine, Gossamer told a therapist (and then their family) that they were non-binary in March 2014. A diagnosis of gender dysphoria came in April. “I didn’t feel like I was completely from one gender to another so that was another complicated issue in a world where everything is male or female. Everything is binary,” they say.
So, in November 2014, they created a fundraiser for top surgery. “I need to put it out there for myself and remind myself this isn’t something I should put off anymore. Because I need to feel better about the body I’m in so I need to take steps even though it feels almost impossible because of the medical expense,” they tell me.
But they waited a while to begin hormone therapy. Gossamer stresses the year-long wait before the therapy was because they wanted to be sure this is what would help. “You don’t have to go through every change to be validated as a transgender person. It took me a while to realize this is a legitimate thing that helps people if they’re able to transition and be more comfortable in their body. I just never ever considered that that was what was causing me distress.”
Gossamer waited until July 2015 to start hormone therapy after seeing another friend’s happiness following treatment. “I have to do this for myself. I can’t just feel uncomfortable just because my identity is so confusing to other people. I can’t let that keep me from being happy in my body.”
Their art is another incentive to potentially put their fundraiser above others. (Seriously, even a cursory glance into online medical fundraising will make your head spin from the sheer amount of need.) “Everyone in the world has expenses to take care of,” they tell me. “I don’t know if I’ll get the money I need.”
Gossamer is optimistic about it all. “I need to at least make [the surgery] a concrete thing that other people know I’m serious about it.”
In 21 months, Gossamer has raised $590 of $7,020 goal. They had a top-surgery in October, which they fronted on credit. They’re healing well and now looking to pay down debt after a “minuscule” refund. Their goal is now $4,000 and have raised $685.
Scrolling through pages of GoFundMe and YouCaring makes it painfully obvious that there isn’t enough money to bridge the gap, both for these persons seeking funds and for us to donate to each one. So, how do you pick which people (many of whom are so young!) to donate to? What’s the best way to make your dollars go the furthest?
If there’s one person who can navigate this landscape, it’s Dr. Maggie Moon, a medical ethicist for the Johns Hopkins Berman Institute of Bioethics. We establish early in our conversation that fundraising for bills, medical, rent or otherwise, isn’t a new phenomena. Think of a congregation’s bake sale for a family with an unexpected death or pooling resources among friends when someone is laid off. The internet has just injected technology into the situation and widened the net of potential donors — and the pool of those in need.
Moon says much of internet fundraising at the moment is comparable to panhandling. “It’s just a really sophisticated way to do panhandling,” she says. Moon recognizes how loaded this term is, because of our reliance on capitalism and favoritism of middle-class values. But she stresses that panhandling is not a bad thing — this particular type is just simply the easiest (and quickest) way to connect with people.
So much of this issue is tied up in economic privilege before you even get to the part about actually paying for the health care: Have you found yourself in a safe enough space to evaluate just what care you need to feel whole? Have you found a doctor who understands your needs? Can you get to their office easily? Do you have access to the internet regularly? Do you have the time to devote to a successful (or even just a halfway successful) campaign?
Though fundraising for medical costs isn’t new, the internet’s formalization of fundraising starts to raise questions. “I do really worry about a new health disparity (that) will be either created or exacerbated by too much use of crowdsourcing,” she tells me. Because only certain people have access to the internet and only so many of those people know how to most effectively sell their story. “People who have access to the internet, people who have enough education to tell a good story, people who have an internal sense on how to market themselves, they are not necessarily the people who are at greatest risk.”
If this trend of transgender citizens turning to the internet increases, Moon says we have to start taking a hard look at how the health care system is addressing transgender care, just like they would if this happened for any other health care need. But this examination might not come in time for those who see zero dollars contributed to their cause. “What if your story was up there and no one was giving you money?” Moon asks me. “Wouldn’t that just entrench the horror of the whole thing?”
Transgender and nonbinary persons aren’t seeking help for these health care costs on a whim. This is life and death. “People who decide to undergo transgender surgery aren’t doing this for fun,” Moon says. “They’re doing it because they don’t see any other way out.”
Cere, who asked to be identified by her first name only, is one of those people who is also looking for a way out. She’s a 27-year-old married Texas woman who launched a campaign on GoFundMe. We first talk over the phone in the summer of 2016. Her goal is to raise $12,000 to change the gender on her identification and for fees associated with gender confirmation surgery.
But after 18 months, her campaign raised $410 — the same amount she had raised just five months before. For the first three weeks of her campaign, her mother was the only donor. “She gave me $50,” she told me. The rest is from a recurring donation from a friend.
She’s six hours short of her degree, is unemployed, has diabetes and lives in the Bible Belt. She’s only lived publicly as a woman for about a year. These aren’t excuses for why she hasn’t moved forward in her health care. Cere tells me these things so there’s no question that I understand that sometimes medical transition cannot be the top priority; survival is.
“I’m so terrified, especially in this state, I will get turned down for health care, even for things that have nothing to do with my gender identity, because of my gender identity,” she says. “I’m legitimately terrified of walking in and being turned away.”
Regulation the Obama administration passed forbids insurers from denying coverage because of gender identity, the Washington Post reports, but the regulation doesn’t mandate approval for coverage of services. According to the Movement Advancement Project, 37 states still have no legislation “providing LGBT inclusive insurance protections.” Texas is one of them.
So, Cere’s health care options are limited. “I would love gender confirmation surgery,” Cere says, but that’s not possible at the moment. The money raised so far? “It’s been going to food.”
Her tiny town outside of Houston also brings its own set of stressors. “I can’t tell you how much I hate being sir-ed. I cannot explain the feeling of being dead inside that gives me,” she says, growing more frustrated as she talks about being misgendered in public. She and her wife stay in most days instead.
“Passing is a very tough subject,” she says. “It’s very troubling to go outside. I don’t go places where they know me by my old identifiers. I prefer to find new places.” Cere pauses, considering the incredibly insular life she’s describing. “It’s kind of like, without moving, trying to find a new town.”
So, she and her wife have each other and their three cats and hope for the best. After all, Cere says, she’s white and therefore her problems don’t feel as extreme as those faced by trans women of color. Most of the trans people killed in 2015 and 2016 were women of color, and trans women of color are disproportionately targeted for violent crime.
“My life isn’t terrible,” Cere says. “Every day I don’t wake up in terrible pain or dead is a great day.”
When Cere and I spoke again at the end of the summer, she had found employment for the first time since coming out. She’s now working as a bus driver, but she has to present in ways that make her uncomfortable and must use her deadname, the practice of calling trans people by the name assigned at birth instead of their chosen name. Because Cere doesn’t present as the “correct” way to be a woman, she’ll have to be uncomfortable at work. A line from her email to me breaks my heart: “But some people say money is money. However it is soul crushing to me.” I wish there was a way to immediately fund her surgeries and build a community where this wouldn’t happen.
“I’m very much a realist. I do hope it’ll all come out the way I want, but I have to live my life no matter how it turns out,” she had told me earlier. “I have to plan it’s never going to happen. If it happens, it happens, that’s great.”
Outside of a miracle hitting her GoFundMe, her only hope is an organization like the Jim Collins Foundation.
The foundation, which was named for the therapist of co-founder Tony Ferriaolo, awards grants for the full cost of trans people’s gender confirmation surgery or surgeries. The first grant for the full cost of a gender confirmation surgery in 2011 went to Drew Lodi.
Since then, the foundation has given out 13 grants to fully cover gender affirmation surgeries. (There’s an average of 200 applications per cycle.) Trans men and women are taking their health care into their own hands, but again there is only so much money to go around. “They’re very expensive expenditures for the foundation and for the people receiving that grant,” foundation board member Ryan Sallans tells me.
It’s incredibly gratifying work, making people’s medical care possible. “When you’re on the calls the day you call the grantee to notify them that they received the grant, the goosebumps you get and the tears in your eyes, makes it worth it,” Sallans told me.
This year the foundation added the Krysallis Anne Hembrough Legacy Fund, which provides matching grants to cover half of the cost associated with procedures. But Sallans estimates that this new grant will only last a few more years.
Remember: Money only goes so far.
Looking at page after page of hundreds of thousands of fundraisers on GoFundMe, YouCaring and Tumblr is a reminder that America’s health care system is broken.
There is a specific subset of the population that needs our help, but the antiquated, yet uniquely American, belief that not everyone deserves health care persists. It’s depressing that single-payer health care was turned down when we debated what exactly would make up the Affordable Care Act. It’s depressing that less than half the country prohibits transgender exclusions in insurance coverage. The need for a single-payer health care system that provides for every American’s medical needs is becoming frantic. Donald Trump signed an executive order to begin dismantling the ACA on his first day in office, and at least a partial appeal is in the works.
The American approach to health care is characterized by a profound lack of empathy for those unable to afford health care. Prioritizing profits made it that way. Moog managed to raise all the necessary money for their medical procedures; Gossamer raised some and went into debt for the procedure anyway. For Cere, medical and legal transitions may never happen. And in America, we’ve decided that’s just the price of doing business.
The internet was supposed to be the great equalizer, but that promise – like the promises of spreading the wealth made by the so-called sharing economy – have fallen flat. People shouldn’t have to rely on the internet to afford medical care. The ability to market yourself shouldn’t determine whether or not you get to be whole.
Ultimately, we can’t rely on the internet to solve everything, despite Silicon Valley’s insistence that they have all the answers. We have to rely on people, which is a scary thought. But people can change. That’s the hope we must cling to.
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