Note: This transcript has been created with a combination of machine ears and human eyes. There may be small differences between this document and the audio version, which is one of many reasons we encourage you to listen to the episode!

DG: The Trump administration has sparked a feeling familiar to the transgender community: fear. 

News clip: The Trump administration has now finalized a rule that will erase protections for transgender patients against discrimination by doctors, hospitals and health insurance companies.

DG: Anti-discrimination policies have made it possible for many transgender Americans to access care in a way that was unheard of just a decade ago.

Now, as the federal government removes some of these legal protections, we look at the fight to secure health care for trans Americans and the impact these policies have had on helping people get the care they need.

From the Annenberg Studio at the University of Pennsylvania, I’m Dan Gorenstein and this is Tradeoffs.

A toxic minefield. 

That’s one way to describe the U.S. health care system for many of the estimated 1.4 million transgender Americans.

Kellan Baker: We don’t treat your kind here. We don’t work with transgender people. We don’t even want to talk to you.

DG: Seeking care has often meant facing ignorance, invisibility and contempt.

KB: Oh the time that they tried to give me a pregnancy test. Oh, the time that they kept calling me she despite the beard. Oh the time that they said well you have to come at a later time because our patients don’t want to see you in the waiting room. It’s the ongoing drip, drip, drip. It’s a lot of things that feel small, but add up to a lot. 

DG: Kellan Baker knows this from his own experience as a transgender man.

Kellan also studies transgender health and discrimination as a health services researcher at Johns Hopkins.

He says until the Affordable Care Act, many insurance companies treated being transgender as a pre-existing condition. 

KB: A health insurance company would look at somebody and say, “OK, well, you’re transgender. And so we don’t cover people like you.” That was something that was common practice.

DG: A 2011 national survey found that transgender people were more likely to be uninsured than the general public, and that Black trans people were twice as likely to be uninsured compared to whites.

Even when trans folks got coverage at work or through Medicaid, the plans often explicitly excluded coverage for hormone therapy or gender-affirming surgeries, like chest reconstruction.

Insurers and employers often considered this care “cosmetic” and not “medically necessary.”

Are treatments and surgeries that help a person match their body and their gender identity necessary?

That question strikes at the heart of legal and policy debates around transgender care that began in the 1970s.

KB: The judges who were asked to weigh in on the question of whether California’s Medicaid, for example, should cover gender affirming surgery, their response was, “There is no way in which this care can be characterized as cosmetic. This is medically necessary for the health of the plaintiff.”

DG: The New York Supreme Court said pretty much the same in its 1979 ruling against private insurer Aetna.

But those legal victories proved the exception.

Under the Reagan administration, federal health officials declared what they called “transsexual surgery” to be experimental, effectively banning coverage of the service under Medicare.

Most state Medicaid programs and private insurers adopted similar policies.

KB: For 30 years, there was really nothing. Insurance wasn’t covering, so no one was getting paid. So the only people doing it were the handful of surgeons who worked with people who could pay out of pocket.

DG: It turns out the people who did get hormone treatments and surgeries helped build the case that this care was medically necessary.

Dozens of studies dating to the early ‘90s have looked at the effects of gender-affirming care.

KB: The consensus in the literature is very much that gender affirming care helps transgender people whether that’s, for example, decreased depression, improved anxiety, improved quality of life. 

DG: In 2008, major medical organizations like the American Medical Association and the American Psychological Association began declaring this care medically necessary.

Kellan says advocates armed themselves with this data, and used it to lobby the newly-elected Obama administration that the time had come to end the policy debate on medically necessary care.

KB: People had spent years organizing, building, getting ready, and when Obama came in and signaled that the federal government was again engaged on health disparities and health equity, LGBT health advocates, trans health advocates were ready.

DG: Which brings us to the Affordable Care Act…

President Barack Obama: Today after all the votes have been tallied, health insurance reform becomes law in the United States of America.

DG: The ACA outlawed the common practice of denying care for pre-existing conditions.

And lawmakers tucked in a brief, bland sounding provision called Section 1557. 

KB: Which prohibited discrimination on the basis of, among other factors, sex.

DG: This might seem small, maybe even obvious that it should be illegal to discriminate in health care based on sex.

But it was groundbreaking.

KB: This is the first clear binding legal provision, the first clear indication from the federal government that transgender people have the right to access health care.

DG: Section 1557 was historic and the first of several major policy reforms.

Medicare removed its ban on gender-affirming surgery.

And some states also started making changes.

KB: A number of insurance commissioners took a look at their own existing state laws, and said, you know, we have enough to go on here to clarify for insurance carriers that they cannot discriminate against transgender people.

DG: If an insurance plan covered a procedure for one person, say a mastectomy for a woman with breast cancer, the policy had to also cover the same procedure for a trans person as part of their transition.

When Melvin Whitehead moved to Illinois, he wasn’t thinking about insurance protections.

He had landed a job out of grad school as a librarian at a community college outside Chicago.

Melvin Whitehead: I was the only openly trans staff or faculty, to my knowledge, at the college, and so I became an adviser for their LGBT student organization.

DG: Melvin was taking testosterone when he started his job.

Facial hair grew in, the shape of his body shifted — welcome changes. 

MW: At that point, I had trepidations around surgically altering my body. And even though I had breasts and I didn’t like them, the idea of doing away with them just seemed very, I wasn’t ready. 

DG: Melvin spent weekends up in Chicago with other trans men, many who had their chests surgically altered, what’s known as top surgery.

MW: I had lots of questions. I always have lots of questions. And the more I did that, the more I could see this as a reality for myself and noticing how happier they felt. I think I reached the point where the idea of surgically altering my body didn’t seem like a bad thing or didn’t seem like a daunting, intimidating thing. It seemed like it’d be pretty liberatory.

DG: Over the next few years, Melvin watched, quietly gathered information, processed. 

He allowed himself to glimpse a future when his body matched how he felt. 

MW: I got to the point where the dysphoria I was feeling was such that it was restricting my life not to have the surgery. 

DG: By the fall of 2014, he was ready.

He met with a surgeon who sent off a pre-authorization request to his insurer.

MW: Then on October 17, I get this letter from Blue Cross Blue Shield saying that no coverage was available for the procedure because there is an exclusion for cosmetic procedures. I remember distinctly breaking my pen that I was holding after reading the letter. I don’t break things, so this was like, I was so full of rage. It just felt like a slap in the face, like it felt like it was denigrating my experience, who I was. Like cosmetic, this isn’t just some cosmetic surgery. I’m not having a tummy tuck, like this is like so core to who I am.

DG: Without the surgery, Melvin had to wear painful chest binders to flatten his chest. 

He worried as a gay man that the men he dated would reject him because of his body.

MW: I can’t move freely. I can’t breathe freely. I can’t date freely. I can’t, like, do all these things freely. And so it was holding me back by not having the surgery.

DG: That night, a total whirlwind, Melvin called other insurance companies and heard the same thing — his top surgery was considered cosmetic.

MW: It was so disconnected from my experience. These people making these decisions don’t even know what it’s like to be trans.

DG: Melvin then turned to a friend, a trans man and LGBT health advocate who explained that in Illinois, it was illegal for insurers to discriminate against trans people.

MW: He was like, “I’ll help you with your appeals letter.” I was like, “Great, thank you.”

DG: Melvin drafted his appeal. He sent it off a week later.

MW: I felt I had handled my business, you know, like I was adulting, like to the tee. And I was kind of proud of myself for sticking it to them. I had this long letter there, like, you know, they didn’t know they were dealing with a librarian and I had sources and citations.

DG: He included letters from his doctors.

He cited the research and expert medical opinion that top surgery was necessary. 

He quoted the Illinois regulations that protected trans folks from coverage discrimination.

MW: I was going to win. [laughs] Well, yeah, that wasn’t, that’s not what happened.

DG: Blue Cross Blue Shield of Illinois denied his appeal, restating that his double mastectomy was considered cosmetic.

The insurer advised Melvin to take it up with the state department of insurance. 

MW: I don’t know what letter J is in the alphabet, but that’s how many appendices I added. It was up to Appendix J. This was like a lengthy letter. So I felt like I had written a research paper to these people.

DG: For the next several months, Melvin traded letters, emails, phone calls and faxes with the insurance department and Blue Cross.

MW: Then on April 2, 2015, I get another letter from Blue Cross Blue Shield. And they denied me again, but now they had four reasons why they were denying me.

DG: The letter all but laid out what Melvin had to do to prove his surgery was medically necessary. 

He grit his teeth. He cursed. And he did what he had to do.

MW: We trans folks go through so much in our day to day lives. Many of us dealing with discrimination. Many of us dealing with suicidal thoughts. Many of us dealing with gender dysphoria and all of the pain associated with that. So when you have the medical industrial complex or whatever, the medical system say, well, you need to jump through this hoop, this hoop, this hoop, this hoop before you can get access to this medically necessary treatment for you to live your full self, it’s an extreme burden on folks who are already burdened.

DG: After a year and a half, the insurance company approved Melvin’s surgery.

He still remembers holding that approval letter — it was the middle of the day.

He realized his surgery had taken a back seat to the process, the law, the fight.

MW: I could, like, let my defenses down. That’s what it felt like. I didn’t have to keep fighting anymore. Now I could actually think about the surgery.

DG: As long and tortuous as Melvin’s process was, his insurer covered his top surgery because he lived in one of the few states with explicit health care protections for trans people. 

In much of the rest of the country, even with the ACA and Section 1557, a denial from the insurance company almost certainly marked the the end of the road.

MW: It felt very unfair just to happen to be in a state where I could get this covered, law was on my side. I felt kind of bad about that, like, well, why isn’t this elsewhere?

DG: The protections of the ACA, Section 1557 and state policies represented progress, but too many cases still required lengthy appeals, legal help and patience. 

And those were the lucky ones. 

In May 2016 — the same month that Melvin finally got his surgery — the Obama administration saw the need to strengthen the existing protections. 

Katie Keith: After much study, you saw the Obama administration explicitly define sex nondiscrimination under Section 1557 to include gender identity.

DG: Katie Keith is a health law professor at Georgetown University and an expert on the ACA and its impacts on the LGBT community.

KK: Those protections, we would argue, were there since the beginning. But what you needed the 2016 rule for was to clarify those protections and make them really, really explicit so that the insurance companies and the health care providers knew exactly what the rules of the road were.

DG: The new rule stressed that it was illegal for hospitals and doctors to deny care to transgender patients.

And that insurers could no longer sell policies that categorically denied coverage for any and all services related to transgender care. 

These exclusions, says Katie, were part of the standard package that many insurance companies sold to employers. 

She says by making it clear these exclusions were prohibited, the Obama administration was leveling the playing field.

KK: Folks still are going to have to fight and jump through a bunch of hoops, but at least there’s that option, whereas before, you didn’t even have that fighting chance.

DG: Conservative states and health care providers quickly challenged the move, arguing enhanced protections would “require Plaintiffs to perform and provide insurance coverage for gender transitions…contrary to their religious beliefs and medical judgment.”

On New Year’s Eve 2016, just a few weeks before Donald Trump took office, a federal judge stopped the government from enforcing the changes.

And the new president was in no hurry to fight back.

This June, the administration made it official, erasing the explicit protection of transgender people.

The ACLU’s Taylor Brown says transgender people who live in states that never passed additional legal safeguards could lose access to care. 

Taylor Brown: Theoretically, what this means is that health insurers can reinstate blanket exclusions. So that means anything associated with the treatment of gender dysphoria, and that means they can not provide therapy, hormones, and then, of course, surgery.

DG: It’s also possible that doctors and hospitals in those states could now turn people away. 

The Department of Health and Human Services says it expects half of the nearly 300,000 insurers, hospitals and physician practices covered by the rule to change their policies.

But seven experts on transgender health we spoke to for this story are skeptical.

The ACA still prohibits sex discrimination, and several courts have ruled that applies to transgender people.

And even though HHS never enforced the more explicit 2016 changes, many doctors, hospitals and insurers got the message anyway.

KK: It really marked kind of a sea change, I would say.

DG: Georgetown’s Katie Keith says insurers, in particular, have made major changes that she expects are here to stay.

KK: More than 90% consistently of these insurance companies that we’ve looked at have gotten rid of that really nasty, discriminatory language, those categorical transgender exclusions. 

DG: There’s one other reason to question HHS’ claim that providers and insurers will bring back discriminatory policies.

News clip: This is an ABC News Special Report. The Supreme Court has ruled that LGBT Americans are protected by the anti-discirmination laws of this country.
News clip: In a 6-3 decision the justices ruled…
News clip: …protects gay and transgender workers from workplace discrimination.

DG: Three days after the Trump administration’s announcement, the Supreme Court said employers can not fire someone for being transgender. 

Taylor Brown from the ACLU says the ruling could set a precedent that spills over into health care. 

TB: It doesn’t matter the context — discrimination on the basis of sex is wrong. If you can’t discriminate in employment, you shouldn’t be able to turn around and discriminate in health care.

DG: It’s hard to predict what impact the Trump Administration’s rule and the Supreme Court ruling will have on transgender people. 

What’s easier to say is that the U.S. has undergone a historic shift.

A June 2020 poll from the Kaiser Family Foundation found that nearly 90% of people think it should be illegal for insurers or providers to refuse services to transgender people. 

Georgetown’s Katie Keith points out that now more than two dozen professional medical associations agree gender-affirming care is medically necessary.

KK: You are starting to feel this shift in the industry of going, you know, this is a small population, the services aren’t that expensive, why are we discriminating? It doesn’t make actuarial sense, and it doesn’t make sense from a who we are view either.

DG: Today, 24 states plus Washington D.C. have explicit insurance non-discrimination protections.

At least 23 Medicaid programs cover transition-related care.

And two-thirds of Fortune 500 companies offer trans-inclusive health coverage, according to the Human Rights Campaign.

KK: That’s up from no companies in 2002 and is 19 times as many businesses as just 10 years ago when the ACA was passed.

DG: So, what have those changes actually meant for individuals and their health?

Johns Hopkins researcher Kellan Baker says the policies are so new, academics are still gathering data.

He says the best evidence so far come from studies that compare states with different levels of transgender protections.

One study released in JAMA Psychiatry this May found an association between states with explicit insurance protections and lower rates of suicidality among trans people.

KB: States that implemented these policies in 2014 saw suicidality among transgender people decrease by 28%. In 2015, that group of states saw suicidality decrease by 50%. And the group of 2016 states saw suicidality decrease by 39%.

DG: Promising data to be sure, but these protections are far from perfect. 

Many providers still know very little about treating transgender patients.

Others remain actively opposed on religious grounds.

An attorney for the Transgender Legal Defense and Education Fund said he still gets calls every day from people who have been denied coverage for transition-related care.

But the trajectory appears clear. 

More trans people are getting access to care, and more states and courts are stepping up to protect that access.

Wisconsin is the latest state blocking private insurers from discriminating, citing the new Supreme Court ruling.

For Melvin Whitehead, Illinois’ nondiscrimination rules gave him the tools to fight for his top surgery.

MW: I honestly can’t say how far I would’ve taken this if I didn’t have the law. Like I can talk all day long about how this is not cosmetic and how the surgery was gender affirming and medically necessary. But like, you can’t violate the law. It felt powerful in that way. It felt ironclad.  

DG: Without it, Melvin may not have been able to get the surgery that has changed his life.

MW: After my top surgery, a friend of mine had his top surgery and so I was providing care for him. And I’ll never forget, I took out his trash one morning, and I didn’t put my shirt on. And I went outside. It was my first time being outside without my shirt on and just feeling the air hit my chest, I was like, “Oh my God.” It was such exhilarating feeling. And I just felt free. It was really beautiful.

DG: I’m Dan Gorenstein, this is Tradeoffs.