Beyond the Byline: Transgender community faces healthcare access hurdles

Beyond the Byline: Transgender community faces healthcare access hurdles

Alex Kacik: Hello, and welcome to Modern Healthcare’s Beyond the Byline where we offer a behind the scenes look into our reporting. I’m Alex Kacik. I write about hospital operations. And today I’m talking with safety and quality reporter, Lisa Gillespie to talk about healthcare access for the LGBTQ community, specifically those who identify as transgender. Thanks for joining me, Lisa.

Lisa Gillespie: Yeah, sure thing.

Alex Kacik: So Lisa, you have a feature coming out next week. That’s taking a look at gender affirming care. Please tell me about Rachel E. who was featured in the lead of your story?

Lisa Gillespie: Yeah, so Rachel is 60. She’s a transgender woman. She grew up in a rural part of North Carolina and during her twenties, I mean, in college, she said she figured out that she was a transgender woman, but had been assigned male at birth. And at the time I, this was the eighties, right? So there had been some, some progress in the seventies of like academic medical centers, opening transgender inclusive care, and doing, starting do surgeries and whatnot. But the eighties when one advocate described it to me as a dead period, basically for the transgender community. In 1981, I think Medicare put out a coverage determination that they wouldn’t cover “sex assignment, sex reassignment surgeries.” And that really had a, you know, a chilling effect, like all the other insurers followed their lead. Anyway. So it was, you know, not, not a great time to figure that out.

And so it wasn’t until maybe like early 2000s that she looked into getting counseling because she wanted to talk to somebody about it because she was super depressed. She described herself as like very shy, not super talkative. Didn’t really have a lot of friends. And so she, she wanted help. And so she looked for therapists. Couldn’t really find one at that time, you know, even like 20 years ago, right? And this is not that long ago. There just weren’t resources. There weren’t providers really providing this stuff.

So fast forward 2016, she was working at a company. Here’s one of her coworkers kind of joking with another coworker about how they’re going to start covering gender affirming services for transgender individuals. Rachel’s like shocked. And she had no idea. And so she went back into the policy and read it, and she described that as the like ‘light bulb moment.’ As this like moment where her whole life changed and she could start getting, you know, the healthcare services that she needed.

And so since then, she’s gone through a bunch of procedures to, you know, confirm that, you know, she’s a woman. So she’s pretty happy in her life now and super bubbly and like loves her doctors and the hospital providers and her surgeon, like I’ve never met somebody that talked so positively about them before.

Alex Kacik: And she went through Novant Health, right? And in, in North Carolina, and I’m wondering, you know, you mentioned, you know, not all types of providers catering to these types of services. So I’m just curious, when you look at access to this type of care, what’d you find in your reporting is the transgender community, you know, tried to find some of these related surgeries and care and if they were successful.

Lisa Gillespie: Yeah. So there’s definitely been a really big shift and access to care for these folks. And I’m not just talking about like, like, you know, general surgeries, you know, or like a mastectomies or, you know, these stuff that we think of traditionally to, you know, change one’s appearance to, you know, more be affirmative to how they feel as a gender. I’m talking about like going in for an annual physical or like getting a colonoscopy. Like really simple things that I think, you know, people with insurance usually take for granted. But there’s historically just not been a lot of providers out there that have been inclusive. Like, I mean, if you think about transgender folks in the media, usually it’s like a laughing stock. People are not nice to them.

And you know, this extends to the medical community. So they’ve really been iced out of access for very long time. And that has resulted in healthcare disparities that exist for this population. But that kind of opened up in the past few years because insurance started covering this stuff. And the reason insurance started covering this stuff is because back in 2010, the Affordable Care Act passed. Obviously we know, and that included a section that barred discrimination of healthcare coverage on the basis of sex, right? And so at that time, it was a really big win. Advocates were pushing for that, but it didn’t really clarify that that included transgender people.

So like while that was a really big win on the ground and didn’t have too much of an effect. And so, you know, and, and with any law regulations have to be put in place to codify the thing. And so advocates, you know, figured it would take a couple years. At least for the regs to come out that would specify those and making sure it’s covered these services.

So they started working as states on a piecemeal to get state laws, you know, discrimination laws to include transgender folks. And that’s kind of how a lot of progress happened. And then in 2016, the Obama administration issued regs that said, okay, like this, you know, discrimination thing, you can’t deny coverage to transgender people and you have to cover gender confirming affirming care. And previously the programs that existed were really out of pocket, very expensive. I think the cheapest vaginoplasty that’s someone told me, like in the U S that you could get out of pockets, like $20,000, which is, I mean, they were like, it’s the cheapest one. It’s great. It’s $20,000. And I was like, “Are you kidding?” I was told that the surgeries, you know, most health systems will charge like $60K. So they’re big money makers. 

Alex Kacik: Yeah. And, you know, just in terms of the access issues, I know Catholic Health Systems continue to get bigger, you know, across the country. And they prohibit a lot of these types of services as well as ones related to abortion and others. So I imagine that compounds the issue with Novant, you know, some of the executives were saying that not only is this, you know, not a financial opportunity, but it’s part of their diversity and inclusion initiatives. And, you know, it’s something that they could point to where they said that they increased access to, you know, a marginalized population. So I imagine this there’s, there’s multiple layers to the decision-making here. 

Lisa Gillespie: I talked to the chief diversity inclusion officer at Novant, Tanya Blackmon, who was great. And she really wanted to talk about the DEI stuff. I was the one that kind of brought up the finance piece. She liked, she was a little bit. I mean, she understood why I was asking, but she really was all Gung ho about this as a DEI issue. And, you know, she has a seat at the table with the CEO and like all the other executives and she, she was approached by a doctor back in, like, I think it was five or so years ago who was providing these services, like hormone replacement therapy and just like, you know, inclusive primary care who wanted to expand basically the practice and also make their EHR more inclusive. And so she has really championed it at the system.

Alex Kacik: I’m trying to put myself in their shoes a bit where, you know, not only a lot of times, do you find coverage issues with, you know, these gender affirming procedures, but, you know, if you can’t get basic things like, you know, annual checkups and other routine procedure. I mean, that’s just got to compound any existing health problems and, and like, you know, the mental, any type of mental health coverage or what have you. Yeah. It seems like, you know, there’s, you know, kind of basic human right issue here. And in your reporting, you mentioned, you know, some of the kind of provisions within, you know, these, these health plan policies changing from a cosmetic procedure to one that’s medically necessary. Could you speak more about that and how that’s changed the coverage paradigm?

Lisa Gillespie: You know, if you wanted to go to a plastic surgeon, right? And have your breast enhanced, right? Like your insurance company, unless it was like for a medical reason, they’re gonna make that cosmetic. They’re not going to pay for it.

So historically there are a set of standards from WPATH, which is the world health, but it’s like this international organization that creates the standards of care for transgender folks. And that’s what a lot of health insurers follow in terms of what they cover. But the, like the version that, that is most reason is like more than 10-years-old, right? And so you can imagine, I mean, this, like this care paradigm is changing pretty quickly all the time. So some of those standards are kind of outdated and haven’t been updated. They’re supposed to be updated next year. So long story short, you know, while you have the gender confirming surgeries covered and that kind of stuff, there’s all these things that go into transitioning that are not covered generally, like hair removal is one.

If you’re transitioning to a woman, you’ll probably still have, you know, beard hair coming in, you know, and electrolysis, or like removal can be super duper expensive. I think that was. Rachel told me that that has been far on like the most expensive out-of-pocket thing that she’s had to pay for. And it’s like a really big, stressful thing, right? Because like, if she, like she said to me, “You know, I look, I am a woman.” She is a woman. “But like sometimes, you know, I have this like five o’clock shadow, right? Sometimes.” And that is stressful, right? 

So increasingly insurers are covering so many things, but it’s still like a fight I’ve heard from advocates and patients to get some of these services that aren’t in those standards of care as medically necessary, right? So, and just be like hair removal, there’s facial feminization surgeries. If you’re a transgender woman. Rachel’s facing some hair loss, right? So she’s like stressed out all the time about having to buy like wig. So there’s just like all these things that you don’t really think about that go into transitioning that still aren’t covered, that, you know, can, can really play into your mental health and how you feel about yourself.

So anyway, so there should be some updates coming out.

Alex Kacik: Yeah. And I’m wondering just in terms of, you know, if, if there are access issues and you’re not getting certain services coverage? It sounds like the federally qualified health clinics and Planned Parenthood have been able to fill some of those, those gaps?

Lisa Gillespie: A sizeable portion of the transgender folks don’t have health insurance because they struggle with employment. They struggle with employment because of discrimination. Because of all the reasons that I stated, you know, before they struggle with that.

And so a lot of folks don’t have insurance. So they ended up at places like Planned Parenthood or federally qualified health centers. And the care there can really range the gamut like Planned Parenthood South Atlantic, which is in North Carolina, West Virginia, Virginia and some other states. They just started opening up hormone replacement therapy, I think two years ago. And I was told by the, the director there that when they started doing that, there, there was a clinic in West Virginia that was like always not meeting their budget every, every year. Like we’re really struggling financially, not getting patients in when they started offering the hormone replacement. Like their numbers went from, you know, bad to amazing, like they’re beating their budget every month because there is, you know, a population of transgender folks in West Virginia that want these services and don’t have anywhere else to go and they’re lower costs there. So, and then there’s federally qualified health centers that do some more things.

Alex Kacik: Sure. In, since you’re the safety and quality reporter, I’m curious just how outcomes are measured when it comes to this community? You know, you have surveys and patient satisfaction scores and things like that. But I imagine it typically in this space, like, you know, it takes some time for the metrics and how care is measured to catch up to how care has progressed. So, yeah. What’s the standard there and how, how they’re tracking this?

Lisa Gillespie: Not really tracked. There is no standard. I mean, there’s like the standards of care from WPATH. But in terms of like ideal outcomes or anything like that, no one really has created that. If health systems, I mean, like Novant has some stuff that they track, but it’s all internal, right? There’s no, there’s nobody in a similar way that like hospitals in general, you know, are attract on this stuff. So, yeah, there’s no measurement.

That was an interesting question that I asked people and I actually got a lot of responses because like, there’s a need for that, right? There’s a need for people to know, like, where are the best surgeons that do these things? Because like, it’s one thing to have more access, to have more providers providing these things, right? But like, if it’s a crappy outcome, right? Like a, for whatever reason, then, you know, what is, what is sort of the value? So yeah, that, that seems to be the next frontier. This area is still relatively new. So, you know.

Alex Kacik: And you know, when you don’t have the outcomes associated with, it’s hard to make the business case for it and being able to benchmark progress. So I imagine it’s still one impediment and that could change kind of the dynamic if they’re able to categorize, you know, these statistics better.

Well, Lisa, thank you so much for your reporting and for sharing your experience with us.

Lisa Gillespie: Yeah, thank you.

Alex Kacik: All right. And thank you all for listening and stay tuned for the story that we’ll publish in next week’s magazine online on August 17th.

If you’d like to subscribe and support our work, there’s a link in the show notes. You can subscribe to Beyond the Byline on Spotify or wherever you listen to your podcasts. You can stay connected with our work by following Lisa and I at Modern Healthcare on Twitter and LinkedIn. We appreciate your support.

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Marie Maynes
Marie Maynes is a Sports enthusiast and writes for the Sports section of ANH.