Health

When costs prohibit gender reassignment surgery, some raise funds online

Expensive procedures that many insurance companies see as cosmetic leave many looking for creative financing

Nixon VanJustice has seen people from around the world contribute to his online campaign.
Nixon VanJustice has seen people from around the world contribute to his online campaign.
Courtesy Nixon VanJustice

On days when it’s hard to look in the mirror, Nixon VanJustice thinks about the people who have donated money online for his surgery.

Nine months since starting an Internet campaign to fund reconstructive chest surgery, 25 donations have come in totaling almost $4,000. Some people have donated multiple times. A handful of donors are anonymous. Donations have even come in internationally from places like Singapore and Iran.

“There are days that no matter what I do, I look in the mirror, and it’s depressing. It’s the feeling that my body is different than what it should be,” VanJustice said. “On those days, I can see that all over the world, people who don’t know me, they’re willing to help me get there.”

For most transgender individuals like VanJustice, who identifies as a transgender man, the price tag of hormone therapy and surgical operations, coupled with the lack of insurance coverage, can leave them with few options and in a nearly permanent state of anguish. Facing this financial barrier to transitioning — and with nowhere else to turn — some are looking for help online.

Where ignorance lies

Shane Stinson, a transgender man from St. Louis, is employing a method similar to VanJustice’s: an online fundraising campaign. Stinson came out to his family and friends a year ago and was met with what he described as a surprising amount of support. His parents were with him 100 percent; they just couldn’t offer any financial help for the testosterone therapy and operation to remove his breast tissue.

Shane Stinson said he feels like he needs money to validate his identity.
Shane Stinson said he feels frustrated because transgender people need to have money to validate their identity.
Courtesy Rob Lindsey

He looked to his insurance company and found not only no financial support but no understanding.

“The way that I’ve felt is helpless,” Stinson said of his experience in navigating his insurance policy. “Because my needs are less of an issue because you don’t want to take the time to understand it.”

“The majority of private and public insurance companies have discriminatory exclusions to our health care, even though the medical community has said it is medically necessary,” said Dru Levasseur, a lawyer with the LGBT advocacy organization Lambda Legal.

“Someone has to do something.”

A few changes have been made in policy, at least regarding public insurance. At the end of May, the Obama administration lifted the 33-year ban on gender reassignment surgery coverage through Medicare. While Medicare covers people 65 or older or on disability, the decision is expected to influence other insurance providers to cover transgender-related surgeries. The Affordable Care Act prohibits discrimination based on gender identity, but some in the transgender community have taken issue with the fact that the law leaves defining discrimination to individual states.

But in the meantime, Stinson, like many, is left feeling that a medical transition is something only the wealthy can undertake.

“If you are not affluent or don’t have the resources to pull from, a medical transition is nearly impossible,” he said. “The fact you have to have money to feel validated in your identity …”

He trailed off, unable to find the words.

The vast majority of the medical community has come out in support of the removal of financial barriers to transgender health needs. The American Medical Association’s policy is that the “AMA supports public and private health insurance coverage for treatment of gender identity disorder as recommended by the patient’s physician.”

Those last words are key, Levasseur said. Gender identity disorder, commonly called gender dysphoria these days, has no set manifestation. The identity and subsequent needs vary from individual to individual. Stinson needs hormone treatment and reconstructive surgery on his chest to feel validated. Another transgender man might have other needs entirely.

“There’s this idea that there is the magical formula to transition,” Levasseur said. “It is an individualized process, and that’s the doctor’s determination of medical necessity.”

The problem is that many insurers, private and public, have long considered these operations cosmetic.

“That is where the ignorance lies,” Levasseur said. “In the meantime, people are really suffering,”

He went on to describe hearing stories of attempted self-castrations after some individuals felt they have run out of options. A 2014 survey found that transgender individuals report an attempted suicide rate of 41 percent.

“These exclusions will be a dark point in LGBT history,” Levasseur said.

Finding the money

Because each experience and set of needs is so individual, it’s difficult to pinpoint how much a medical transition can cost. Levasseur said he usually tells people it can cost $7,000 to $90,000 — an astronomical range.

For Stinson, it was a more manageable number but a big one for a college student nonetheless: about $7,000. As soon as he came out, he got a job to start paying for his testosterone therapy. He expected the surgery bill to be in the thousands, but what surprised him most were the additional costs.

Stinson will have the operation in Florida and will have to pay for gas to drive there and back from Missouri, lodging for his recovery, as well as the expenses of his girlfriend and parents, who will accompany him on the trip. He’ll have to pay for medical items needed during his recovery as well as antibiotics.

“You have to be able to have a chair to sit in, you know?” Stinson said. “And if my family is coming, they need a place to stay too.”

He needed $7,000 and was starting at zero.

“It was really overwhelming,” he said.

VanJustice shared a similar experience.

“My first reaction was to freak out, to be honest, because I’m struggling to pay off my student loans,” he said. “I’m struggling to pay my rent. I’m struggling to pay [for] my car. I’m struggling to get by, day by day, and here I have this surgery I need to have, and this doctor is telling it’s going to be $10,000, so I freaked out.”

VanJustice did the math: It would take him more than eight years to save the money for his surgery alone. Stinson, 21, assumed he’d have to save money well into his 30s for his.

But it went faster than Stinson thought when, about six months ago, a friend of his set up a page on GoFundMe.com — a website that allows users to raise money online. It turns out that crowdfunding, for Stinson, was a viable solution. Donations came from friends, family and strangers — from Missouri and beyond.

In five months he raised nearly $5,000. With the donations from a benefit show he hosted in April, he met his goal years ahead of schedule.

“I was lucky,” Stinson said. “And a lot of people don’t have that luck.”

A step too far for some

For Emily Sylvia Colvin, who hasn’t started raising money yet, creating an online fundraiser for her transition is a step she’s reluctant to take. Asking for money is enough of a hurdle, but doing so for something so personal in such a public way makes it even harder.

Emily Sylvia Colvin says she's worried about scrutiny and criticism that could come with putting her fundraising effort online.
Emily Sylvia Colvin says she’s worried about scrutiny and criticism that could come with putting her fundraising effort online.
Courtesy Emily Sylvia Colvin

“There’s a lot of anxiety because of the view of surgery being cosmetic,” she said. “There are also other political groups on any side of the political spectrum that are not in support of trans people and attack these kinds of things. I’m afraid to put myself out there that far at this point in my life.”

For VanJustice, waiting eight years to save the money alone was a “non-option.” He has seen friends in the transgender community fundraise with concerts, auctions, bake sales and other creative means, but nothing has fully funded a transition. However, he saw that he could get on Tumblr, a blogging platform, at any time and find someone’s GoFundMe page.

GoFundMe and Indiegogo have become common platforms for people’s funds that later get spread through other social media sites, such as Tumblr or Facebook.

In 2013 a Boston-based fraternity used Indiegogo to raise over $21,000 dollars for a brother’s top surgery. The campaign was up for only two months and relied on social media to spread.

VanJustice has not met his fundraising goal yet, but said he has seen the capability of online crowdsourcing.

“I have friends of friends who started sharing my fundraising page, and people I’ve never met started sharing,” he said. “Through the magic of social media, people on the other side of the world have donated.”

While successful, that’s a process that activists like Levasseur say shouldn’t even be necessary.

“This is not something foundations should pay for,” he said. “This is not something people should crowdfund to pay for — medical care their doctor says is medically necessary.”

But until further changes are made, people like VanJustice, Colvin and Stinson are left with few options except to seek help from others.

“How do I, as one man — Shane — try to fight the Obama administration?” Stinson said. “Or the insurance company? On my own? You can’t.”

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