Transgender Americans Just Lost Health Protections. Now What?

CORINNE LEWIS: On June 12th, the Trump administration eliminated federal protections against discrimination in health care for trans people. This is effectively bringing us back to a time where trans people could be denied care or access to services because of the fact that they’re trans.

SHANOOR SEERVAI: Hi, everyone. Welcome to The Dose. That was Corinne Lewis, on a new revision to the Affordable Care Act which makes it more difficult for transgender Americans to get the health care they need. On today’s show, we’re talking about how getting rid of these protections for trans people is particularly worrying in the face of the COVID-19 pandemic.

Corinne is on our delivery system reform team at the Commonwealth Fund, and she’s joining me with our colleagues Mekdes Tsega and Yaphet Getachew.

So Corinne, tell me a little bit more about this new rule. What does it do?

CORINNE LEWIS: Sure. The Affordable Care Act had section 1557, which prohibits discrimination in health care based on race, color, national origin, disability, and sex. In 2016, the Obama administration interpreted that section 1557 to also mean that people that were trans were protected from discrimination in health care because of their gender identity. This meant that health care providers and insurance companies that accepted federal funding, which is essentially all of them, were not able to deny access to coverage, services, and care to trans people in a way that they would for trans people. Period.

So now what the Trump administration did is reversed that rule, so essentially they eliminated all of those protections against discrimination in health care at the federal level.

I personally think that the timing of this rule is also what is particularly devastating about it. The protections for trans people were eliminated by the administration on June 12th, so not only is that Pride Month, being June, but it also marked the fourth anniversary of the Pulse nightclub shooting, which of course was the mass shooting at a gay bar in Florida.

I think it’s also interesting that a few days after this rule was finalized by the Trump administration, the Supreme Court ruled that LGBT people are protected from employment discrimination. So again, it’s just really interesting timing, I think for me personally as a gay person, it feels like we’re constantly taking these steps forward, especially in regards to sexual orientation, but then for the trans people in my community and for gender identity, it feels like we’re taking these steps backwards.

SHANOOR SEERVAI: Now let’s focus on the health issue. What does this new Trump administration rule mean for the health care of transgender people? Yaphet?

YAPHET GETACHEW: What the 2016 rule did, as Corinne mentioned, was protect trans people when trying to access various different types of health care. It meant that you couldn’t be denied access to health services or facilities based on your gender identity, you couldn’t be denied coverage for transition-related services and more. And this rule was made because this stuff had been happening, trans people had been denied care, denied coverage, for so many trans and non-trans related procedures.

SHANOOR SEERVAI: So we had this brief period in which transgender people were protected by the health care law, and now we have this new rule that doesn’t protect them anymore. So let’s focus on the health care issue. What does the new rule mean for the health care of transgender people?

YAPHET GETACHEW: So basically, all of these covered entities, which are hospitals, insurers, and other health care entities that received federal financial assistance no longer are required to actually treat trans people in a way that’s consistent with their gender identity. That means they can deny access to health services or facilities, they can exclude them from coverage, and also deny coverage for transition-related services. And this is going to be widespread. The Office of Civil Rights estimates that of the 137,000 entities that this rule covered, over half of them are expected to actually revise the rule and stop prohibiting discrimination under this rule. So this will nationwide and will have large effect on the trans population’s access to health care.

CORINNE LEWIS: And just to add to that, it’s not just that trans people can be denied care in line with their gender identity, it’s also the opposite. So they could be denied care because of other health care needs. So for example, in the case of a trans man with ovarian cancer, the plan or provider could actually deny care for cancer because of the fact that that person is trans.

SHANOOR SEERVAI: Right. I mean, in the example you’ve just given us, it means that somebody who has cancer could be denied treatment for their cancer by a health care provider.

YAPHET GETACHEW: Yes, and trans people in surveys do say that they are. Some 30 percent of trans people say that they have negative experience with providers, that includes refusal of care, and it leads to them not wanting to get it, let alone even getting to the point where they’re denied it. There was one focus group of trans men in New York City that showed that 70 percent of them refused to go to the emergency room because of historical discrimination and fear of further discrimination when they got there. These have wide-ranging effects.

SHANOOR SEERVAI: So if we zoom out a little bit, Yaphet, and we think about how many people are impacted, how many Americans identify as trans?

YAPHET GETACHEW: It’s hard to get an exact number, but we can estimate from some federal surveys that it’s about 1.7 million Americans identify as transgender or gender nonconforming in the United States.

SHANOOR SEERVAI: And what’s it like? I imagine that they face discrimination at every level, but tell us a little more about it.

YAPHET GETACHEW: Trans people in the U.S., and in general minorities in the U.S., face discrimination at every single level. There are barriers to their access to education, housing, employment, health care, some legal and illegal, but yet it continues to happen in the United States. And the way that that discrimination and systematic oppression works has denied them access to the same opportunities that many other Americans get, and actually makes them more likely to be low income, homeless, and have poor physical and mental health. And nearly all of these issues are compounded and even worse for trans people of color.

SHANOOR SEERVAI: Yeah, what’s it like for a trans person of color trying to seek care? Even if it’s a routine check-up.

YAPHET GETACHEW: Trans people face one burden in the United States, people of color face a burden as well, and those issues again are compounded when combined. Trans people report being verbally or physically harassed when they’re trying to access care, they report being refused care, they report also having health care professionals that don’t understand what being transgender means and having to teach them about their care. And this actually leads to trans people, like I said, one, just not going in to get care, or two, not disclosing that they’re trans when they’re trying to get care, which is critical, actually, to a lot of health care treatments. So it creates a system in which their health is not being prioritized and the health care system isn’t functioning in a way that is best for them.

CORINNE LEWIS: Yeah, just to underscore what Yaphet was saying, I think especially for trans people there’s an incredible mistrust in a lot of institutions, but especially health care, and I think that’s an issue that’s amplified for trans people of color because of historic racism in the health care system as well.

And I often think about if you’re a trans person that has been either outright denied care, or when you did seek care were discriminated against or harassed in the way that we know happens from the data and research, why would you go to the health care system? They’re not meeting your needs, and it’s actually in a lot of ways a place of danger. And what this rule has done is sent the signal that the federal government will not protect you if that does happen.

SHANOOR SEERVAI: Right, so just so I understand, there was this brief period when the federal government actually did protect you and say that health care providers cannot deny you care, but now we’ve gone back on that, and we’ve gone back at that at a time when we’re facing this huge health crisis. We’re in the middle of the COVID-19 pandemic. How does this decision by the Trump administration make things even more dangerous for trans people who need health care?

MEKDES TSEGA: This ruling is particularly concerning for this population because they were already experiencing discrimination and harassment when seeking medical treatment prior to the pandemic, as we’ve talked about. According to a report from the National Center for Transgender Equality that we cite in the blog, 28 percent of transgender people report avoiding care altogether because of stigmatization and harassment. What this final rule does is it heightens the perception that providers will not care for them and will discriminate against them.

Now we’re in the middle of this pandemic and there’s this highly contagious disease spreading across the country and the world, and transgender people may be reluctant to get testing or treatment for COVID, which means that their health is at risk and the health of other Americans is also at risk.

We don’t know many trans people have contracted or died of COVID, as there continues to be this issue around missing data. However, we do know that transgender people are more likely to have underlying conditions like HIV or cancer, and are more likely to be homeless and low income, making them particularly vulnerable to COVID. These factors, in combination with hospital capacity challenges and now weakened legal protections are more likely to result in trans people either avoiding care or being turned away for seeking care.

YAPHET GETACHEW: Throughout this pandemic, we’ve seen policymakers, delivery system leaders, public health officials, and so many people who are trying to combat the pandemic doing everything they can to try and increase access. That means helping to pay for testing, that means increasing the number of health care sites around the country, trying to ensure that people aren’t worried about not accessing care. And this rule, particularly at this time, just goes completely against that. And it’s surprising that it would come out when it looks like everything in the health care system is pointing in doing things in the opposite direction.

SHANOOR SEERVAI: Right, I mean, why would you make it more difficult for somebody to get tested when the number one thing we need to figure out, how many people have COVID-19, is to make sure that people with symptoms can get tested?

YAPHET GETACHEW: It’s been a big issue from the beginning. People have talked about how we need to provide coverage and protections for people, particularly who are low income, so that they aren’t worried about going in to get COVID-19 treatment when it’s needed. And this won’t support that, this will actually do harm to it, be it in a legal way or in at least a perceived way because of fear of discrimination when a trans person might go into a facility.

SHANOOR SEERVAI: I feel like at a time when we should be encouraging people to get tested, because the only way we’re going to beat this pandemic is if people are getting tested, it doesn’t make sense that trans people are being discouraged from seeking health care. But more generally, do we know how many trans Americans have COVID-19 relative to the rest of the population?

MEKDES TSEGA: No, we actually don’t have that data. There’s actually an issue with collecting data on transgender individuals in general.

YAPHET GETACHEW: Mekdes is totally right. There is a lack of data about LGBT people in general in the United States. About 10 years ago, in 2011, the Institute of Medicine highlighted this as a big issue and said that we need more research, more data, more surveys to include trans people and trans populations because of differing health needs, as we’re seeing.

Since then, trans people have been included in more national surveys and more federal government research. The biggest one is probably the BRFSS survey, which is the Behavioral Risk Factor Surveillance System, which is the largest national survey about health-related needs, and it’s done by phone. And there’s now actually an optional module where certain states can actually choose to ask a question about gender identity or sexual orientation.

Since 2014, when this was added as an optional module, 37 states, I believe, have used it at least once. However, this data is not consistent and still about a quarter of states don’t use it at all, and don’t use it every single year, and it’s just one survey. We need the data to be more comprehensive. We cannot try and address any kind of health needs for any minority population without understanding what the needs are and what the disparities are. This has become a big issue right now in the COVID pandemic, because at the beginning, we didn’t have data on what was happening in black and brown communities, we couldn’t quantify the disparities that were being reported to us anecdotally, and so there was a huge push in order to get demographic data for COVID-19 testing, deaths, and so much more.

And this is the same exact reason and logic why we need it for all different types of minorities, including gender minorities.

SHANOOR SEERVAI: I mean, that makes sense, because when we did start looking at the COVID-19 data based on race, we found that if you’re a person of color, you’re more likely to get COVID-19 and you’re more likely to be hospitalized and you’re more likely to die. So it’s really important to know what’s happening in, as you say, all minority communities.

YAPHET GETACHEW: And it’s galvanized communities to have that data. People see it. When people, for example, see that, going outside of COVID-19, that black women have higher rates of dying during childbirth, there’s an increased pressure on both policymakers and providers to understand what the problem is, why it exists, and how they can change it, and we need that same energy when it comes to issues regarding transgender health. We need to understand what the problems are, which we hear anecdotally and from small community surveys and from the various organizations that do trans advocacy, we hear those issues on the ground and we just need large surveys and large research institutions to think about and prioritize those issues so that action can be taken to try and address them.

CORINNE LEWIS: And just to add to that, I think it is really important that we have data itself, but it’s also important that we bring trans people to the table in designing research and being involved in the research process, so that included developing research questions, actually asking trans people what outcomes should be measured, and including them in design of studies.

SHANOOR SEERVAI: That makes a lot of sense. Since we’ve been talking about disparities and we’ve been talking about trans people in the context of the COVID-19 pandemic, there is another big national issue that we’re facing right now, which is nationwide protests against racism and police brutality. You alluded to this a little bit, Yaphet, but trans people of color really face high levels of discrimination. Let’s talk about that.

CORINNE LEWIS: Yeah, so as we talked about earlier, trans people of color are far too often the victims of violence, harassment and discrimination. Like Yaphet said, they’re not just dealing with transphobia that exists in the world, they’re also experience racism. The murder rate of trans women of color in particular is incredibly high, and a lot of times this violence is actually at the hands of the police. Just look at the Tony McDade story.

When it comes to police violence especially, I think it’s interesting to remember what happened at Stonewall, right? This cornerstone moment in LGBT history that really started the gay liberation movement was actually an event led by trans people, particularly trans women of color, when they fought back against the police because they were fed up with the constant raids and policing of their communities. So I really think the mistreatment of trans people and particularly trans people of color by institutions including the police and in health care really contributes, again, to this general mistrust of institutions.

SHANOOR SEERVAI: So you’re saying that the two play off each other, if you mistrust the government or the state in the form of the police, you also mistrust health care institutions?

CORINNE LEWIS: Right, exactly. Oftentimes, when you have mistrust of one institution, like the police or the government, it feeds into this mistrust in health care, and vice versa.

SHANOOR SEERVAI: So let’s come back to the problem that we have on our hands right now, which is that health care providers can now discriminate against trans people. But surely there’s going to be some sort of legal challenge to this or something, right?

MEKDES TSEGA: Yeah, so we’ve already seen that happen. Just a few days after the final rule was published, a coalition of LGBTQ clinics and organizations actually filed a suit to block the Trump administration rule that aims to rescind health care protections for transgender people. If not already, it’s very likely that there’ll be others to follow.

SHANOOR SEERVAI: So there’s some hope specifically that something could happen to prevent this rule from having thousands of trans people denied health care, but how can we make these protections more permanent?

MEKDES TSEGA: The reality is that health care protections for transgender people can change by administration through the rulemaking process, which means that transgender people are constantly vulnerable to discrimination on the basis of gender identity. This patchwork of policies and gaps in legal protections that we see for transgender individuals really stems from the fact that the federal government hasn’t explicitly and uniformly defined what sex means in federal law, and what it means when it comes to discrimination against LGBTQ Americans. Because the federal government and the Supreme Court has yet to do this, rulings on sex discrimination have been decided on a case-by-case basis, which leads to inconsistencies and gaps in protection against discrimination.

SHANOOR SEERVAI: So this is what you were talking about earlier, where we have one Supreme Court decision that protects transgender people in the workplace, but then health care providers are now allowed to discriminate against transgender people.

MEKDES TSEGA: Exactly.

SHANOOR SEERVAI: So what would give transgender people a more uniform protection against discrimination?

MEKDES TSEGA: So the way to strengthen protections for transgender people from facing this sort of discrimination is really through some sort of congressional action, specifically through legislation that could be a sweeping measure that would make legal protections more comprehensive and uniform, and ban discrimination in all areas, ranging from housing to health care and in other spaces as well. And this measure has actually been proposed in Congress before. Last year, a group of lawmakers introduced the Equality Act, and the Equality Act would basically amend the Civil Rights Act to explicitly prohibit discrimination based off of sexual orientation and gender identity, and provide consistent nondiscrimination protections for LGBTQ people across all areas, including employment, housing, credit, federally funded programs, and more.

And while the bill passed in the House, it hasn’t been taken up in the Senate, and so it’s just been stalled there.

SHANOOR SEERVAI: Got it. Well, as we’re wrapping up and before I let you all go, do you have any other thoughts, any other ways in which the health care system could be strengthened to protect transgender Americans?

CORINNE LEWIS: I think a lot of this is the responsibility of providers and health systems, too. While this rule is a major setback for trans people at the federal level, I think that there are a lot of opportunities for providers and health systems that are interested in improving care for trans people to learn more. There is ton of research out there that shows that providers are actually often not prepared to talk about issues around gender identity with people, so educating yourself, and if you’re a health system leader, thinking more about training programs to educate providers I think is really important.

YAPHET GETACHEW: I would really recommend looking at trans organizations that have been doing this work for a long time. One of them is the National Center for Transgender Equality. They’re an organization that actually a lot of the research and survey work that we do have about trans people comes from. They’ve been documenting the health disparities for a long time and have been advocating for trans issues and trans equality. So I would very much recommend checking them out as well.

SHANOOR SEERVAI: All right. Well, thank you guys so much for joining me today.

CORINNE LEWIS: Thank you.

YAPHET GETACHEW: Thank you.

MEKDES TSEGA: Thank you.