The American health care system is a bloated, bureaucratic mess. Period. And the system is even worse when you’re trans. Trans people often face denials for many medically necessary parts of transgender health care. And worse, many people don’t know that denials are simply an insurance company’s way of making you work to get the coverage you deserve.
Noah Lewis, the newly appointed Trans Health Project director at the Transgender Legal Defense & Education Fund, wants to change that. To do so, he’ll be training trans people and trans care providers, as well as working with insurance companies. He spoke to TheBody about some of his plans in his new role.
Mathew Rodriguez: Can you tell us your name and a little bit about what you do?
Noah Lewis: My name is Noah Lewis, and I’m the Trans Health Project director at the Transgender Legal Defense & Education Fund. We just announced that today. So I’ve been doing this work really for 10 years, but for the past three years I’ve been doing it at Transcend, which is an organization I founded specifically to focus on trans health care access. And now I’m going to TLDEF, because it’s a larger organization.
MR: What is the aim of the project—what problem is it looking to solve?
NL: TLDEF has a long history of impact litigation, and the community in general, the LGBT movement, tends to focus on litigation and maybe legislation, but those victories don’t necessarily translate into change on the ground. It doesn’t happen automatically. So we’re focusing on expanding access to trans health care by enforcing existing legal protections and doing that in a systematic way. So one thing we’re doing is public education. We’ll be launching a website to educate people about their rights and how to challenge insurance and denials and exclusions, and I’ll be doing webinars. And then I also will be training other advocates, so other attorneys and other organizations can do this work themselves and get people connected to legal help when they are facing denials. And I will also do legal services in the form of coaching people and answering their questions when they get a denial—they can call and find out what’s my next step.
And we will also be doing alternative dispute resolution, which is working directly with employers and insurance companies on removing these exclusions—as well as policy advocacy.
MR: You mentioned existing legal frameworks or existing legal protections that people maybe don’t know that they can take advantage of. Can you talk a little bit about those and what they are?
NL: Yeah, there’s been a lot of confusion with the attempts of the current administration to roll back actions for trans people. So, specifically, they have attacked the regulations under the Affordable Care Act, which is Section 1557, the non-discrimination provision that prohibits sex and disability discrimination in health care. Those protections still exist, because that’s still a law. That’s a statute that was passed by Congress, and it applies to pretty much all health care providers and insurance companies. There’s also protections under employment discrimination law such as Title VII, [in] which we have a sex discrimination [protection], or the Americans with Disabilities Act, which prohibits disability discrimination.
I could go on and on. There’s education, there’s Title IX, there’s state and local protections, there’s health care–specific protections, and if you have something like Medicaid and Medicare, those have their own protections. So there’s no shortage of protections. It’s just that people don’t know that they have their rights. And it can be a challenge to find an attorney who is knowledgeable in this area.
MR: So, for a lot of people, they have employer health insurance. If someone was discriminated by their employer-offered health insurance, would that count under Title VII?
NL: Yes. We are waiting for the big ruling from the Supreme Court. The EEOC v. Harris Funeral Homes case, though, was heard in October—we’ll get a decision probably in June. And that is around the question of, “Are trans people protected under sex? Are they protected under the category of sex for Title VII purposes?” So even if we get a negative ruling there, it would be a very narrow ruling or wouldn’t necessarily rule out still using Title VII in the health care context. And there are still other protections that apply. So people, you know, the take-home message for people is still, if you get a denial, reach out for legal help, because you—nobody should be getting denied coverage for trans-related health care.
MR: A lot of people don’t understand insurance at all. And they don’t know who their advocates are when they get a denial for something, you know. So can you talk a little bit about if there’s a trans person who’s reading this, what are the avenues that a trans person has if they do get denial for trans-related coverage?
NL: There are two main types of denials. One is when there’s a blanket exclusion for all trans-related care. And then the other one is if they’re saying that your specific procedure is not medically necessary. So that’s like facial surgeries. Breast augmentations are often labeled “cosmetic” by the insurance companies. In those cases, you’re appealing with the insurance company, and ultimately, you would get to an external appeal, which is a neutral third party that can evaluate those. And they very frequently overturn those denials. And so it’s very important to appeal all the way through the end. And if you have that blanket denial, you can go to your human resources department as an initial step and ask them to remove it. Let them know you’re having a problem, see if they’ll remove it.
If not, that’s when you reach out to the Trans Health Project or perhaps your local trans organization, or your local legal-aid organization. And that’s the kind of network that we’re trying to build to make sure all those organizations have competency in this.
MR: One thing that you said before that I also want to go back to is, a lot of your work is going to be teaching people how to advocate for themselves, but then also working with insurance companies. Can you talk about what you envision for your work with insurance companies and what it might entail?
NL: Yeah. Insurance companies all have a document, like a medical policy, on what they consider to be medically necessary and what you have to do in order to get coverage. And a lot of those don’t align with the current standards of care, with what the World Professional Association for Transgender Health, or WPATH, says is medically necessary and should be covered. So we can go to them directly, and we are, that’s what we are doing right now. And we will be building coalitions to put pressure on them to make sure that their standards align with the medical standards. And if not, they are liable under the law for denying medically necessary care that should be covered. And we can pursue litigation if our initial approaches don’t work.
MR: When it comes to working with and approaching insurance companies, do you have to approach them individually, or is there like an overarching body that they make their standards off of that you can approach?
NL: There is a trade organization for health insurance, and that is an area I’m starting to focus more on. I’m reaching out to the more industry-side entities to try to talk to them directly. And that’s something new that the Trans Health Project is doing.
MR: What is something that you would say most people don’t know about getting a denial from an insurance company?
NL: That it’s almost their business practice—and in fact, Aetna got sued over this. They are making all these denials that they know are not fair or accurate, and they’re trying to wear you down. So you just stop. But if you keep going, they will oftentimes overturn. So the denial is not the end. It’s really the beginning of your fight for coverage.
MR: So really, from hearing what you’re saying, it’s really like this two-pronged approach where it’s empowering people to keep going in the process, while also telling insurance companies to not put people, specifically trans people, through the recurrence.
NL: Yeah. It’s very emotionally draining to do this and to get that denial letter. Numerous people, I asked them, “Do you have a copy of your denial letter?” And they say, “I tore it up. I was so frustrated. I tore it up.” And I got into this work because when I was a law student at Harvard, they had an exclusion in their student health plan, and I did have to fight for that to be removed.
So I do know how exhausting it is. And if you don’t think that there’s a light at the end of the tunnel, you might not even try, because why put yourself through all of that? It was not going to work. So that is part of my message, because plenty of people have contacted me—and I just tell them, “You should try to fight it,” and then they’ll email back later and say it worked. And I didn’t have to do anything other than give them the direction and give them some sample documents, and they did it on their own.
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