Amid COVID-19, non-essential healthcare has been delayed, causing many transgender patients to lose access to gender-affirming care like hormone therapy, surgeries, and more. And this isn’t a new problem — healthcare discrimination has disproportionately affected trans people for a long time. Defining Safe spoke to Northwestern students Sadd Sadd, Erique Zhang, and Michael Ann DeVito about their experiences with accessing gender-affirming healthcare during the pandemic. We also chatted with Dr. Kevin Hatfield, who has provided gender-affirming healthcare for decades and has one of the largest trans clienteles in his region.
Resources for Transgender Students:
The Trevor Project
Human Rights Campaign
Trans Youth Equality Foundation
Transgender Legal Defense and Education Fund
ALEX CHUN: From the Daily Northwestern, I’m Alex Chun.
MOLLY LUBBERS: And I’m Molly Lubbers. This is Defining Safe, a podcast about marginalized communities at Northwestern.
ALEX CHUN: Amid COVID-19, some medical care is being categorized as “elective” or “essential,” due to an increased strain on hospitals and short supply of resources readily available.
REPORTER: Non-essential care and elective surgeries will temporarily be put on hold as the province directs efforts toward battling COVID-19.
ALEX CHUN: And this cutback of “non-essential care” is disproportionately affecting trans people.
MOLLY LUBBERS: The issue didn’t begin here. Trans people have long faced healthcare discrimination and barriers preventing equal access.
DEMOCRACYNOW REPORTER: Here in New York, and most other states, a transgender person with Medicaid cannot obtain coverage for hormone therapy which non-transgender women routinely obtain in the form of birth control.
MOLLY LUBBERS: And there’s another threat to care right now. Under the Trump administration, the health department has recently indicated they may strip trans-inclusive protections from Section 1557 of the Affordable Care Act, which currently protects patients from discrimination on the basis of their gender identity.
CBS REPORTER: The Department of Health and Human Services announced it plans to remove gender identity from the class of protected people shielded under the basis of sex.
ALEX CHUN: So, we looked into how the pandemic has affected Northwestern students’ access to gender-affirming healthcare. And before we begin, a content warning: this episode discusses mental health, suicide, healthcare discrimination and transphobia.
SADD SADD: My name is Sadd Sadd… just that name twice. I am a first-year at Northwestern. I am currently studying Communication Studies and art theory and practice. I go by he/him pronouns, and I’m currently living with my parents and brother in Atlanta, Georgia.
MOLLY LUBBERS: Sadd, like many Northwestern students, is back at home, but the COVID-19 pandemic interrupted more than his studies. This summer, he planned to get a gender-affirming surgery.
ALEX CHUN: However, on March 14, U.S. Surgeon General Jerome Adams tweeted that hospitals should consider halting elective surgeries during the pandemic. His tweet explained that elective surgeries may increase COVID-19 exposure, pull from personal protective equipment stores and increase burden on personnel who may be needed for the COVID-19 response.
MOLLY LUBBERS: So, what is considered an elective surgery? Well, for a surgery to be deemed “elective,” it doesn’t necessarily have to be optional, but rather, able to be scheduled in advance. When surgeries began to be categorized as elective versus essential and then prioritized as such, Sadd knew it would impact him.
SADD SADD: Although I really do need top surgery, at the end of the day, I could get it whenever. I really do hate my breast tissue, but like, it’s not gonna kill me. So I sort of knew that if states are running low on hospital beds, and there’s less resources, that’s probably going to get pushed back. I don’t want to say, “Oh, it’s unfair that I can’t get this surgery now.” It is fair, but it just sucks.
ALEX CHUN: But delaying surgery comes with its own risks, too. Studies have emphasized the importance of gender-affirming surgery in improving mental health for trans individuals. The 2015 U.S. Transgender Survey found that trans people experience psychological distress at a rate of eight times higher than the [general] U.S. population. The survey also found that four out of every ten trans individuals have attempted suicide at least once.
MOLLY LUBBERS: There’s a lot of factors that explain the huge disparity in those statistics. Bullying, family rejection, gender dysphoria and discrimination are just a few things that trans people may face. But there is no single trans experience, and Sadd had his own journey.
SADD SADD: So I had a really difficult time sort of figuring out my gender identity. I was a super masculine kid in elementary school, and then when I got to middle school, I just sort of really didn’t like that people didn’t like who I was. So I decided in middle school that I would just entirely change myself and become the most feminine person I could possibly be — and I achieved that. My hair must have been down to like my middle back, and I straightened it every day. And I wore floral skirts, and I wore makeup every day. And I had a boyfriend who’s now one of my best friends. It felt like I was dressing up in drag, really. I knew it wasn’t myself. And so that sort of caused me to spiral into this pretty deep depression. And I was having these like suicidal ideologies and this kind of stuff, and it just was not going well for me at all. And I really wanted it to, I really wanted to be able to live that life as female, and as that traditional image of a female. But that just wasn’t my reality because I knew I would never really be happy in that way. I knew I wouldn’t make it past high school and I wouldn’t make it into college if I had stayed female.
ALEX CHUN: Like in Sadd’s experience with top surgery, receiving gender affirming healthcare — or knowing you’ll get it in the future — can help. A study published in the American Journal of Psychiatry found that after gender-affirming surgery, the likelihood of being treated for a mood or anxiety disorder was reduced by 8 percent for each year following the surgery. So, there’s evidence that these procedures can majorly improve people’s lives. But since these surgeries have been deemed elective and not essential, people can’t necessarily access them right now.
SADD SADD: Transgender surgeries are a tricky subject, because people view them in a whole range of ways. Like some people, you know, who aren’t as supportive of transgender people will say that they’re, you know, not necessary or that transgender surgeries are just mutilations of a transgender person’s body, which is obviously not accurate. And so I think that when transgender surgeries are deemed as elective, that brings up a lot of negative connotations for trans people. But in reality, like, nobody truly elects to have a transgender surgery. I don’t think anyone would want to pay upwards of $10,000 for a surgery.
ALEX CHUN: Gender-affirming healthcare can come with a high cost associated with it, creating a huge barrier for many transgender people. And the pandemic made these problems worse. Just last month, the Department of Labor reported that over 30 million Americans have lost their jobs during the pandemic. Back in 2015, according to the U.S. Transgender Survey, the unemployment rate for transgender people was three times higher than the general U.S. population. There isn’t much data yet on the effect of the pandemic on trans employment rates, but the existing disparities could be exacerbated.
MOLLY LUBBERS: Some people save for years before being able to afford gender-affirmation surgery. That includes Sadd, who figured out most of his transition-related healthcare independently. He plans on paying for the surgery without financial support from his parents.
SADD SADD: My parents are accepting people. Like, I don’t want anyone to think that my parents aren’t good people and that my parents don’t respect me, because they really do now. They’re accepting, but they’re not supportive. So I sort of embarked on my medical transition on my own. I waited until I was 18 to start testosterone, and I pay for that all myself. They always told me that they never really wanted a financial part in it. I worked in restaurants ever since I was 15, 16 until I came to Northwestern. That’s how I have the money to pay for top surgery.
MOLLY LUBBERS: Even if you can afford it, it can be hard to find a good healthcare provider. Though Sadd currently has a private doctor with experience in trans healthcare, he’s had negative experiences with medical professionals in the past.
SADD SADD: It’s just a really awkward experience to go to the doctor. For me, too, like, I don’t have a first name. My legal first name is female. I just go by my last name twice. It’s always so awkward to go to the doctor and have them call out that first name that I have. And then I’m like, “It’s me.” And then they’re like, “Oh, that’s awkward.” And then, I don’t know, a lot of trans people have experience getting asked questions that are totally unnecessary and inappropriate when going to doctor’s appointments. Like, one time I went to a routine checkup and the nurse was asking me why I was sacrificing my womb by taking hormone replacement therapy. And I was just like, “I am not — I have no plans on getting pregnant. I don’t know why this is important to you.” Or like, why? Like, I’m just here for a checkup. I don’t know why this is happening.
ALEX CHUN: All transgender people have individual experiences when it comes to healthcare. But graduate student Erique Zhang also has faced some ignorance from their doctors. They’ve been on hormone replacement therapy for two years.
ERIQUE ZHANG: When I started questioning my gender, it was very much about, like, I wanted to look a certain way. And so HRT was the route that I chose to go through to, like, achieve the body shape and the facial features that I wanted. I think it just helped to lessen my gender dysphoria.
MOLLY LUBBERS: And since they started HRT, they’ve had a lot of different providers. Most recently, when Northwestern University Health Services began providing HRT, Erique switched over because it was free. In some ways, though, they felt they were choosing a slightly less competent doctor so that they did not have to pay out of pocket. While their doctor seemed willing to learn how to treat trans patients, they didn’t feel like he was an expert.
ERIQUE ZHANG: The first time I went, I kind of felt like he was treating it as an experiment, like a learning process for him. And so I was like, OK, well, luckily, I’m not concerned about myself, because again, my dosage has been stable, my hormone levels have been stable. But it’s a little bit more concerning that if there was somebody who was newer to hormones who didn’t have the experience…
My understanding is he took it upon himself to get the training to do that. No one directed him to. He understood that there is a gap in the services that Northwestern provided and so he wanted to fill that. And so he is like doing this because it’s something he thinks is the right thing to do, which I appreciate, but it feels like it’s been a slow process in terms of getting even one doctor in the entirety of NUHS to know how to read hormone levels.
MOLLY LUBBERS: A third of transgender respondents in the 2015 U.S. Transgender Survey reported having a negative experience with a medical provider within the past year. That can mean denied treatment, verbal, physical, or sexual harassment, or needing to teach providers to give adequate care.
ALEX CHUN: When Northwestern moved to remote classes, Erique moved to New York. There, they had to figure out getting their refills in a different state. Although Erique had been getting hormones from Northwestern, they were only receiving a three-month supply at a time, despite requesting to get a six-month supply.
MOLLY LUBBERS: New York has a law that complicates transferring refills from one pharmacy to another. Northwestern had Erique’s remaining authorized refills, but only one refill can be transferred at a time. The patient also has to expressly request a transfer.
ERIQUE ZHANG: That meant that I was just losing refills. I didn’t know any of this. Otherwise, I would have been more proactive about contacting my provider at NUHS. Eventually that all got sorted out, but it’s still a little bit of a problem that my doctor at NUHS only gave a three-month supply for like three refills.
MOLLY LUBBERS: In general, access to gender-affirmation care is way different depending on the state that you live in. Even without the pandemic, some places have laws that provide better access to treatment. But multiple states exclude transition-related care from Medicaid. Over 20 don’t explicitly require insurance providers to cover gender-affirming care.
ALEX CHUN: So with the added factor of COVID-19, it can be even more difficult to get healthcare. While at least 30 states have resumed elective surgeries, that doesn’t mean that every elective surgery is readily available. The American Hospital Association released guidelines and recommendations for hospitals planning to resume some elective surgeries. They recommended that hospitals should establish a prioritization policy committee taking into consideration individual surgeries’ urgency, COVID-19 testing and PPE accessibility. It’s unclear when each state will allow surgeries to go forward.
MOLLY LUBBERS: Take somewhere like Washington state, for example. Family physician Dr. Kevin Hatfield practices in what he calls the “Seattle bubble,” a city known for its relative ease in getting gender-affirming care. Two of his patients have already received gender-affirmation surgeries since the restrictions in his state were lifted. But that’s just not the reality everywhere.
And surgeries aren’t all that’s affected. Northwestern PhD candidate Michael Ann DeVito had set up laser hair removal treatments to get rid of her facial hair, but that’s on hold for now.
MICHAEL ANN DEVITO: In the state of Illinois, under the way our insurance works, laser is not a necessary medical procedure. It’s just a fun, cosmetic thing that we trans ladies to do to make us feel better. This is an insane way to classify it, and in a lot of other places it’s seen as medically necessary, but not here. And that means all of that is delayed for me. Things that are key medical services for us are seen as cosmetic by the cisgender medical establishment.
MOLLY LUBBERS: Michael Ann is 34 years old and realized she was trans under a year ago. She’d just begun her transition, and she didn’t want to stop. Even though she said she’s been under a faster timeline than a lot of people, having to suddenly go under quarantine was still difficult.
MICHAEL ANN DEVITO: You keep going because you have to keep going. You keep going because you know eventually this will lift, and you will be able to see people again, and you will be able to experience the world as this person you are now. But for me I got about a month of that, and then this happened. And that hurts, that hurts to get a glimpse at what life can be now that the big problem, the big problem that was affecting everything has been addressed. To get a month of that and then go into isolation is devastating, in a way.
I’m thankful that I don’t appear to be infected. But… being alone as you try to joyously redefine your entire life is a challenge, to say the least, and something that would go much smoother if I wasn’t trying to do it in isolation.
ALEX CHUN: With restrictions to in-person care still happening, many trans people have turned to telehealth services. Before March, telehealth services weren’t feasible for most trans healthcare providers due to a requirement from the Centers for Medicare & Medicaid Services, mandating in-person visits. But on March 30, that rule was temporarily suspended to allow telehealth appointments to be covered by some insurance providers.
MOLLY LUBBERS: Dr. Hatfield said telehealth services were somewhat of a silver lining in the pandemic.
KEVIN HATFIELD: Previously, I had to see patients in person, there was no other way to establish care, I have patients that drive in from three and four hours away. I just, my heart goes out to them for how hard they have to work to make it to those visits. The nice thing is, that even during the whole COVID(-19) crisis, I’ve seen the same number of people calling my office to establish care. That really hasn’t changed. But at this point, depending on what works for them, I can now offer a video meeting for the first visit.
ALEX CHUN: While telehealth doesn’t remove every barrier such as in-person prescription refills or blood work tests, it has allowed for some trans individuals to connect with healthcare providers during state lockdowns. But at the beginning of the lockdowns, Dr. Hatfield got a lot of calls from patients wondering if they’d be able to get care.
KEVIN HATFIELD: COVID really has become a barrier to receiving care for anyone, and it provokes anxiety. People who are not in the gender community have felt that, but people who have dealt with difficulty getting access to hormones, getting access to blockers, getting access to surgery, it just brings up all these other layers of worry and concern. Because they have that experience, it’s so personal to them, and now suddenly, what they have worked so hard to establish feels like it’s been ripped away.
MOLLY LUBBERS: With coronavirus still majorly impacting the U.S., Erique knows they won’t be going to any in-person visits for their HRT anytime soon, and Sadd is forced to wait and see when he can get his surgery. Michael Ann doesn’t know when she’ll be getting her laser treatments. It’s all up in the air. But it feels more like a continuation of a problem than the beginning of one.
MICHAEL ANN DEVITO: I’m significantly delayed because of all of this, and not just because of the way that the pandemic has played out, but the way we’ve been classifying trans healthcare the entire time. It’s easier to write us off in a crisis if you’ve been writing us off for years.
ALEX CHUN: From the Daily Northwestern, I’m Alex Chun.
MOLLY LUBBERS: And I’m Molly Lubbers. Thanks for listening! We’ll see you next time for another episode of Defining Safe.
ALEX CHUN: This episode was reported on and produced by both Molly Lubbers and myself, Alex Chun. The audio editor of the Daily Northwestern is Molly Lubbers. The digital managing editors are Kalen Luciano and Heena Srivastava, and the editor in chief is Marissa Martinez.
Email: [email protected]
Email: [email protected]