TOBIN: Have you thought about what you would do if you got closer to the date of the surgery and you got the bill...and it’s more than what you’ve saved up? Like, what would you do?
BRYNN: Oh man, honestly at this point I have...I have borrowed so much from the Bank of Mom and Dad that I wouldn't want to borrow any more from my older relatives. But I think that really drives the point, just like, there's some uncertainty if I have to end up not being able to pay for it and have to push the surgery to next year.
[THEME MUSIC STARTS]
VOX 1: From WNYC Studios, this is Nancy.
VOX 2: With your hosts, Tobin Low and Kathy Tu.
[THEME MUSIC ENDS]
TOBIN: And we’re back!
KATHY: Did you miss us?
TOBIN: This is a new thing for us, Kath...being in the feed so often.
KATHY: But with good reason! We are continuing on with our Queer Money Matters...our series all about how queer people handle money and finances in an economy that wasn’t built for us. Tobin, what’s the topic of today’s episode?
TOBIN: Hoo boy, this one is a doozy.
KATHY: OK, what is it?
TOBIN: Today, we are talking healthcare.
TOBIN: So obviously healthcare is a big ole topic...and when it comes to money, there’s a lot to think about.
KATHY: Sure...like if you gotta pay for health insurance...if you have hospital bills you gotta cover...if your health insurance is gonna cover the costs of those hospital bills. It’s just a lot to worry about.
TOBIN: Exactly. And the good news for queer folks is that the passage of the Affordable Care Act put in a bunch of protections against LGBTQ discrimination by insurance companies. And there’s research that shows that there was an increase in health care access for some gay and bisexual folks after the Supreme Court legalized same-sex marriage.
KATHY: Yes! Good news!
KATHY: Ha, there’s a turn.
TOBIN: Yes...so for some queer people, there’s also data that shows even getting into the doctor’s office can be a barrier. In a 2015 survey, one third of transgender folks reported some kind of negative experience with a healthcare provider that related to them being trans.
KATHY: That’s horrible, Tobin.
TOBIN: Yeah. And to get some context on what that means in terms of money... I called up the folks behind that survey...the National Center for Transgender Equality...and spoke to their director of policy...Harper Jean Tobin.
Tobin: I guess the first thing I’ll say is...I love your last name.
HARPER JEAN: Well, thanks Tobin. I think you have a great first name.
TOBIN: Harper Jean says that discrimination from health care providers means trans folks often have to go out of their way to find doctors who have been trained to know how to care for trans patients even on the most basic level
HARPER JEAN: Trans people often have to travel an hour or more just to find a doctor they can see. That’s a real hurdle if you live in a rural area, and more trouble finding a provider means you’re even more likely to face high out of network costs or deductibles.
TOBIN: And if you’re a trans person who needs transition related care or surgery, it can be really complicated to figure out where to go, and how you’ll pay for it. Now, Harper Jean says the good news is that with those ACA protections in place, and the expansion of Medicaid in some states, more people have access to insurance than ever before. But not everyone.
HARPER JEAN: So many people that I know have had to drop-out of school to deal with medical expenses. Take out an extra mortgage…
KATHY: That’s just wild that people have to go to those lengths.
TOBIN: And just because you have insurance...it doesn't mean it won't be expensive. Every insurance policy is different.. and it can be really complicated to figured out what's covered and what's not. Someone who’s learned that lesson recently is Brynn Mahsman.
BRYNN: Yeah I'm pretty much the stereotype transgender woman programmer. [LAUGHS]
TOBIN: Brynn lives in Austin, Texas… she moved there last year for a job designing casino games. It’s her first full-time job in a while… and she depleted her savings in the move.
TOBIN: Is there something in your budget that you're worried about or struggle with in terms of money?
BRYNN: I'm still kind of living paycheck to paycheck. But I mean within the space of a few months I should be out of that.
TOBIN: Brynn is scheduled for bottom surgery in October, and she’s figuring out right now how she’s going to pay for it. The good news is she has insurance through her job and she thinks it’ll cover most of the costs of her surgery. But what exactly "most" means is still unclear…
BRYNN: What they told me was 75 percent of eligible expenses after the deductible…$1250.
KATHY: Wait, I’m confused...how does that actually break down?
TOBIN: So first she has to pay her deductible…
TOBIN: and then after that whatever’s left, her insurance company pays
BRYNN: 75 percent of eligible expenses.
KATHY: OK...so what does that mean? How big will that bill be after the 75%?
TOBIN: Well, Brynn can’t get a clear answer. She won’t actually know how much money she has to pay out of pocket until the insurance company decides if her surgery is “medically necessary” about 60 days before her scheduled surgery. And that makes her nervous.
BRYNN: It’s a snafu really...umm…[SIGHS] Like talking to you right now. It does feel like, oh yeah I should know this number but in the last month I've been variously on the phone with the insurance company and my provider and it's not yet clear.
TOBIN: Another concern that Brynn has is that even though she cleared all the hurdles of finding a surgeon who knows how to do this procedure and also takes her insurance...that surgeon is in New York...So because of travel and lodging...she knows she’s going to have to pay a bunch of money out of pocket, regardless.
BRYNN: So I don't get help with, for example, the Airbnb that I have to pay for, for four weeks. Another requirement is that I have someone like a friend or family member taking care of me while I'm there for at least three weeks.
TOBIN: Brynn doesn’t know anyone in New York, so she’s going to need to cover that person’s travel costs as well. All told, she might end up being on the hook for thousands of dollars, which is a lot of money for her. And I wanted to know why all of this is so expensive, so I went to ask someone who does this for a living.
ELEVATOR ROBOT VOICE: 7th Floor.
TOBIN: I headed to the upper east side of Manhattan to the hospital where Brynn is getting her surgery in October..Mount Sinai.
ELEVATOR ROBOT VOICE: 8th Floor.
SHAFER: I'm Joshua Shafer. I’m the Executive Director of the Center for Transgender Medicine and Surgery at Mount Sinai.
TOBIN: Dr. Shafer walked me through some of the price tags of various procedures… like top surgery…
SHAFER: From single digit thousands to 10,000, that’s kind of a ballpark.
TOBIN: To the more complicated stuff like bottom surgery.
SHAFER: 50, 75, 100 thousand.
TOBIN: In other words, A LOT OF MONEY. But when I asked Dr. Shafer why the procedures were so expensive, he was like...they’re not.
SHAFER: Just to put things in perspective a little bit…A big heart surgery is going to be 50 60 70,000 dollars and we're talking about a huge fraction of the population is going to require those big heart surgeries and maybe even more than one if they live long enough. So as much as these sound like big numbers in the great scheme of the health care equation these are not very big numbers.
TOBIN: Dr. Shafer says that in his experience, when insurance companies start covering transition related care...they aren’t sweating the costs. But when it comes to deciding which parts of the procedures they’ll cover… they don’t have the expertise to understand everything that’s involved...so patients like Brynn sometimes have to spend a lot of time fighting for coverage.
TOBIN: As for Brynn’s other problem — that she has to spend a bunch of money to travel out of the state for her surgery, Dr. Shafer says, yes, that’s a major issue — and not just when it comes to surgery. He says there are not enough doctors who are trained to provide even basic primary care to trans people in much of the country.
SHAFER: If you talk to medical people who don’t know how to do this, it is a common thing for people to say, “Oh, I think this would be too complicated, I think I’ll never bother.” Which, by the way, I think is very easy to do. It’s very modest training actually. So it’s just...do you want to be mean to people, or not?
TOBIN: Until those gaps are filled...there’s lots of people who are having to shell out lots of their own money for care. And to raise that money, many of them turn to the internet.
KATHY: More specifically: Crowdfunding.
TOBIN: That’s after the break.
KATHY: Dozens of calls to insurance companies, crowdfunding campaigns...
TOBIN: When we asked you for your stories about paying for healthcare as a queer person, a lot of you wrote in to tell us it can be really hard.
JAYCEY: I had to sigh a little bit because basically everything about being a transgender woman is expensive.
KATHY: Over in our Facebook group today, we’re talking about the hurdles queer people face when it comes to accessing healthcare, and the ways you’ve figured out how to overcome them.
TOBIN: Come share your stories, and your advice, with fellow Nancy listeners.
KATHY: Find “Friends of Nancy” on Facebook, or go to nancypodcast.org/facebook.
[BACKGROUND MUSIC STARTS]
TOBIN: So we’ve been talking about health care...specifically for trans folks trying to figure out how they’re going to get the care they need...If you’re lucky enough to have insurance, maybe it covers most of your expenses. But as we heard...there’s a lot of out of pocket costs, too. And if you don’t have insurance, you’re on your own. So, how do you pay? Well, lots of people have turned to a certain solution...crowdfunding.
TOBIN: If you go to GoFundMe.com, you’ll find thousands of pages trying to fund everything from cancer treatment to people with broken bones who need help paying the bills. And if you type in top or bottom surgery...you land on tens of thousands of crowdfunding pages run by trans folks trying to cover costs related to their transition. It’s such a popular method that GoFundMe has an official page all about gender confirmation...they offer tips and tricks on how to run a campaign and feature tons of success stories. So, I want to introduce you to two people who decided to go this route…
YANNICK: I’m Yannick Taylor. I’m a podcaster, musician, singer, blogger.
TOBIN: In 2012, Yannick decided to start the process of transitioning. Like Brynn, who you heard earlier in the episode, Yannick had health insurance, hers was through the ACA. And also like Brynn, the doctor she found who could help her, was in another state. So she turned to GoFundMe to help cover the costs of moving and starting her transition.
YANNICK: I was trying to raise at least fifteen hundred or more.
TOBIN: So she made a page and started her campaign.
YANNICK: I would share a few times a day and hashtag the hell out of it…I would ask close friends and fellow bloggers and fellow podcasters to share it and then I would also mention it in my videos for YouTube when I was vlogging at the time.
TOBIN: But as much as she got love from her family and friends...the money didn’t materialize. She started looking around at other people’s pages to see what she was doing wrong. And she noticed a pattern.
YANNICK: I noticed a lot of the white queer and trans people that were crowdfunding, they were getting more notice and getting more activity, more contributions.
TOBIN: And then...the trolls found her.
YANNICK: Got a lot of hate mail. Plenty of times got told to get a job or just stop being lazy or that I'm wasting money, to not change my gender, and things like that.
TOBIN: Yannick’s campaign was not successful.
YANNICK: I made maybe a fourth of what I needed. Yes, it hit my ego a little bit, but it made me more determined to keep going, especially as a trans person of color.
TOBIN: She says she ultimately got the funds for her move through saving money and help from foundations.
JASON: I knew that if I was going to do something like this I wanted to be as, like, strategic about it as possible.
TOBIN: This is Jason. He also fundraised through GoFundMe.
JASON: I’m an engineering student. I’m from Minnesota.
TOBIN: Jason was interested in getting top surgery, and at first thought he would be covered through his family’s insurance. But when he came out to his parents about his gender identity, they did not take it well.
JASON: They were very against me getting the surgery that I was getting and they were basically threatening to take me off of their insurance for the next year, if I used it for the surgery.
TOBIN: So Jason found himself in the same boat as a lot of trans folks...no health insurance, and having to pay out of pocket.
JASON: So I went with what my friend suggested which was to do a GoFundMe.
JASON: So I went to a surgeon who had a out-of-pocket cost for surgery of five thousand nine hundred dollars. And then besides that I estimated that paying for a hotel or an AirBnB and like Ubers or renting a car or something like that would be about 600 dollars. And then about a hundred dollars in miscellaneous costs mostly for like prescriptions to cover pain medications after surgery. So that came to...uh...6600 dollars.
TOBIN: Jason had friends edit what he wrote for his page.
JASON: One thing that a friend recommended to me was to have pictures in it with friends not just pictures of me so that I would like look more relatable. I thought that was a very funny but like insightful thing to say.
TOBIN: But, he says there were aspects of the experience that made him...uncomfortable.
JASON: At the very beginning, that's like the main picture on there is...like a side by side of me when I was really little versus me right now. I knew that that's like a really crowd-pleasing kind of thing, like seeing the before and after, when I was like young and really feminine and then me right now, where I'm like looking more like a guy really masculine. I knew that people like to see that kind of before and after picture. It felt really weird because I knew I was only doing it because, like. all the pictures of trans people on Instagram that are trending are before and after pictures. I know that it sells.
JASON: I'm sure that my race did play a role in how well I did in my GoFundMe. I come from an upper middle class background and also, a white background so a lot of the people I know, or I’m friends with on Facebook, or people who would be like potential donors to my GoFundMe are also upper middle class and also white. So if they saw me GoFundMe and saw what I look like...maybe they're going to relate to me more.
TOBIN: In the end, Jason got the money he needed.
JASON: I exceeded my goal by almost 1000 dollars. It was far, far more successful than I anticipated.
TOBIN: I can imagine GoFundMe featuring Jason as a success story. But the thing is...it doesn’t really feel like a success to me. Jason wouldn’t have need to sell his story if his family just let him use their insurance to pay for the surgery. Brynn and Yannick wouldn’t have to pay those out of pocket costs if there were doctors closer who could perform their procedures. Access to healthcare for trans people has improved a lot in the last few years, but it’s pretty clear there’s a ways to go. There’s still thousands of people out there crowdfunding on GoFundMe.
TOBIN: Now we want to hear your stories -- have you had trouble affording the health care you need because of your identity? How much did you have to save to pay for it? Head to nancypodcast.org/money and let us know.
KATHY: Speaking of saving, next time on the show:
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DAVID: I got this guy who was advising me like I was some Jersey dad with an insurance sales job. And — well intended — but I thought, “This doesn’t work.” And I don’t know if I was out enough to even say, “By the way, I’m gay, and by the way, none of those things you’re talking about are probably going to happen for me.”
KATHY: We’re talking about retirement. It’s the final financial milestone in our series, and because of everything we’ve talked about so far, it’s just harder for queer people to save what they need. No one wants to be poor when they get old. So even if you’re young and think retirement is super far away, you should definitely give it a listen.
TOBIN: [HUFFS GENTLY] Really going for the fear factor there, Kath!
KATHY: [WITH EMPHASIS] Whatever! It! Takes! Tobin! That’s next time on Nancy’s Queer Money Matters.
[BACKGROUND MUSIC STOPS]
[CREDITS MUSIC STARTS]
TOBIN: Alright, credits!
KATHY: Our producers —
TOBIN: Isabel Angell and Alice Wilder.
KATHY: Production fellow —
TOBIN: Temi Fagbenle.
KATHY: Editor —
TOBIN: Stephanie Joyce.
KATHY: Sound designers —
TOBIN: Jeremy Bloom and Jared Paul.
KATHY: Executive Producer —
TOBIN: Paula Szuchman.
KATHY: Special thanks to Tigue who contributed music to this episode.
TOBIN: I’m Tobin Low.
KATHY: I’m Kathy Tu.
TOBIN: And Nancy is a production of WNYC Studios.
[CREDITS MUSIC ENDS]