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Gender-affirming medical care delayed by the pandemic

Even before the pandemic, there were not enough gender-affirming medical care providers to meet patient demand. When elective surgeries were temporarily banned as hospital resources focused on an influx of COVID-19 patients, many trans and nonbinary Oregonians had their gender-affirming surgeries delayed even further. While these surgeries, along with other gender-affirming treatments, were deemed “elective” because they could be planned for a specific time, they’re also urgent and even life-saving care for people experiencing gender dysphoria.

We hear from Annaliese McDermond, a trans woman whose gender-affirming surgery had to be rescheduled during the pandemic, and Amy Penkin, clinical program manager for OHSU’s Transgender Health Program.

This transcript was created by a computer and edited by a volunteer.

This is Think Out Loud on OPB. I’m Allison Frost in for Dave Miller. One of the enormous effects of the COVID-19 pandemic was that hospitals were overwhelmed with patients, and in many places, the resources needed for health care staff were simply not there. Early on in Oregon, Governor Kate Brown ordered a hold on elective surgeries. That category encompasses all surgeries that are not considered emergencies. And for some transgender patients seeking gender-affirming surgery, the delays had a big impact on their mental and physical health. Other gender care services were also affected by the pandemic. Joining us to share more about all this is Amy Penkin, Clinical Program Manager for OHSU Transgender Health Program, and Annaliese McDermond, a woman who has received that care. Amy and Anna. Welcome to you both.

McDermond/Penkin: Thank you.

Frost: Starting with you, Anna. Where were you in your transition when the lockdown began in March of 2020?

Annaliese McDermond: When the lockdown began in March of 2020, I had undergone breast augmentation surgery at OHSU about a year before that, maybe two years. I had finished my social transition (changed my name), but I was awaiting [for] a consultation appointment for getting a vaginoplasty with OHSU. I have been waiting at least two years for that appointment.

[There are] long lines to even talk to a surgeon about doing that surgery, let alone actually receiving it.

Frost: How long had you been thinking about it before you scheduled the appointment that you eventually had to wait two years for?

McDermond: The truth of the matter is, on and off all of my life. But I’ve been out for about five years now, and I’ve been thinking about it essentially since the start. I decided to come out publicly and live the life that I always wanted to and never could.

Frost: What was it like for you to live day to day between the choice to have surgery and the time after which you didn’t for a while know when that was going to be, right?

McDermond: For me, I’m generally a pretty structured and methodical person, so not being in control of that process and just having to wait was was quite disturbing. Having to live day to day with a body that I wasn’t feeling comfortable in. It goes down to things like the things that you wear every day and what you feel like you’re able to wear. What your able [or] you’re not...  how you’re going to look in that because of your genital configuration, and that affects your life and makes you disappointed and sad. A lot of times, when you look at your wardrobe or somebody else wearing something, [you] remember what you can’t do yet.

Frost: What did it mean to you when you learned that your surgery had actually been scheduled? Do you remember where you were and how you felt?

McDermond: I remember when I got the voicemail message even just moving up. I was originally scheduled with another surgeon at OHSU, who originally, when I first started waiting, [it] was my understanding, was the only surgeon that could do that surgery. OHSU hired another surgeon. I was able to get in with her which saved me about a year wait time. I wouldn’t have even gotten the consult with the other surgeon until this past April. Just getting that message saying that I was going to have the consult and it was going to happen in a couple of months was just… I came home and hugged my wife, and it was a wonderful, wonderful experience. I cried a lot of tears that I wouldn’t have cried before I transitioned.

Frost: Amy Penkin is a Clinical Program Manager for OHSU’s Transgender Health Program. And I want to ask you, how does Anna’s story resonate? Does it reflect what you’ve experienced with other patients?

Amy Penkin: Yes, but first, Anna, thank you so much for sharing your story today. There’s so much of your story that sounds very familiar to me with the hundreds of patients who have been seeking this type of care for quite a long time... long before OHSU even started delivering this care. So yes, it’s very familiar to me, both the highs and the lows of this process.

Frost: More broadly, how has the pandemic affected medical care for trans and non-binary people at OHSU?

Penkin: I would say, broadly, we’ve seen some ways in which the pandemic spurred some innovation and creativity that improved access in some areas. But we also saw through the pandemic the restrictions and access that worsened over time. For example, I think a lot of health care really relied on seeing individuals in person, in clinics, to deliver care. A movement towards virtual care, telehealth, and digital health really accelerated as a result of the pandemic. Folks that struggle to get into care because they lived far away and required to take time off, or had transportation barriers to getting into the clinics for visits, suddenly had opportunities to meet by video or by telephone in ways that we hadn’t made available before. So that was extremely helpful in some areas of our care. But those types of services that must be done in person... obviously you can’t deliver a surgery by video... those were significantly more impacted. As you mentioned with the Governor’s order, eliminating elective surgeries and again, defining elective as anything that is not an emergency. I think the use of elective really is unfortunate. [It’s] a trigger word for so many people who would interpret that as meaning not medically necessary or not lifesaving when, in fact, we know gender-affirming surgery is medically necessary and life saving. So in that regard, the pandemic slowed down access to our operating rooms for our patients who were needing surgery.

Frost: I was going to ask you about that term and if there’s any movement to refer to those surgeries as medically necessary non-emergency surgery or something like that?

Penkin: The language that we use within our Transgender Health Program and OHSU is that gender-affirming surgery is medically necessary and life saving surgery. We don’t opt for the language of elective, but we understand within our industry, and within the way Governor’s order is written, there is a terminology that’s used for elective and non-elective which really would suggest that which is emergent versus that which is pre-scheduled.

Frost: How available are gender-affirming genital surgeries in Oregon pre-pandemic, or as we are coming out of the pandemic?

Penkin: I would say pre-pandemic, the reality has been for gender-affirming surgery before 2015, [was that] there was one option in the state of Oregon for gender-affirming surgery by a surgeon who was delivering care within a private practice setting, with almost no insurance plans covering that type of surgery. Since 2015, we’ve seen more and more insurance coverage for gender-affirming surgery and correspondingly a growth in demand, and not a proportionate growth in access. So the care that we are delivering at OHSU, starting in 2015, is one of the few health systems in Oregon that does a comprehensive gender service. In some ways, we’re making up for the lack of availability in every other area of the state and we’re so pleased to see more of our health system partners expanding their programs, both in Oregon and in other states around the country. This is deeply needed, because we’re making up for decades of this care not being available. So there’s a deep systemic problem that preceded the pandemic, which the pandemic exacerbated because what was already considered a lack of resource, that one resource we had got was slowed down by their restrictions. So it made long wait times even longer.

Frost: From your perspective, is there something that you would like to see happen that would make an impact in that systemic problem beyond what’s happening at OHSU?

Penkin: I think the changes that we recommend that we are attempting to implement ourselves and that what we’re seeing emerging across the country, first and foremost, is to have a greater pool of trained, qualified and competent surgeons. So this has to happen through medical education and residency, as well as fellowships when people complete their residencies. When our surgeons were getting started, there were very few options for them to seek additional training. They really had to travel internationally to access the exposure and training. Now what we’re seeing is more medical schools introducing gender-affirming care into their curriculum, more residencies that are providing exposure to residents for this training, and now more fellowships. OHSU started a training fellowship this last year, both in plastic surgery and in urology (that is a cross-training) and gender-affirming surgery. It’s this type of systemic approach, it’s not just at OHSU, but across the country, that will create more trained qualified competent surgeons who can deliver this care. I would point out, though, the importance of not just training surgeons to deliver the care, but really thinking much more broadly across health care about designing programs that are truly responsive to the needs of the communities that are seeking the care. You can’t just open a clinic in an operating room without really thinking about the entire system of care to be inclusive, to be welcoming, to be thoughtful about the needs of patients coming to healthcare systems that have historically excluded them and have historically harmed them. So it’s not enough just to give a surgeon a scalpel. It’s as much creating the facilities, the environment, the culture that is safe, that is trauma informed, that is welcoming and prepared to begin to heal the harms that have been done for decades and more.

Frost: Anna, back to you. When you learned that there would be a pandemic-related delay to your surgery, how did that impact you?

McDermond: Well, I kind of had two delays go on related to the pandemic and my personal journey. One was just the initial delay in the consult, since we had to switch it to a video visit and do that in telemedicine. Unfortunately that video visit only goes so far as to determining whether somebody is a good candidate for surgery and how to move forward. You really have to see the surgeon so they can at least quickly examine you and make sure that everything’s okay to move forward with surgery. It was kind of exciting to actually have the video consult, but also disappointing knowing that there was just uncertainty after that. I can talk to the surgeon and we can talk about what we’re going to do, and I can [to] emphasize the surgeon how I’m ready to go. There [are] a lot of prerequisites that you have to do, such as electrolysis in the genital area to make sure you don’t have any unwanted hair when you’re done, and things like that that sometimes take years to prepare, that I had already done and and prepared for. Then to have everything kind of up in the air again was disconcerting and frustrating and stressful. I finally ended up getting a physical consult in like the June timeframe and getting on the surgery schedule, which was exciting and something that I was looking forward to. But what happened because of the pandemic and again, this is not OHSU’s fault, they’re just trying to treat patients as they can, is that on the eve of my surgery, my wife and I rented a hotel room in downtown Portland so that we could stay there the night because we live in Lebanon and to be able to report for the surgery on time, which takes about eight hours. I was called the night before by the surgeon saying that the surgery was called off the next day because there wouldn’t be any room in the hospital for me to recover. That was pretty devastating for me, having to go to bed that night, thinking that I was going to have the surgery tomorrow and suddenly not. Again, the uncertainty that goes into that because at that point in time, I didn’t know when the surgery was going to go off at all. It could be another six months until they could have gotten it scheduled at that point in time. The drive home to Lebanon was pretty long that day.

Frost: I can only imagine. How long were you in the dark about that? How long did you, in fact, have to wait?

McDermond: Luckily, due to my really dedicated surgical team... and I can’t say enough about the surgical team at OHSU, they’re amazing people... within three or four days we were back on the schedule, but only because my surgeons gave up a chunk of their Labor Day weekend in order to come in and do my surgery. Nobody really, except trans girls that have been waiting for three years, wants to have their surgery on the Saturday of Labor Day weekend. So that means that the operating rooms are relatively available. My surgical team gave up their time in order to come and work that day, which was just amazing.

Frost: On top of that, I understand that this was during the time when huge wildfires were sweeping across the state. That was just last September. How did that impact you?

McDermond: We live in Lebanon, which is near Corvallis for people, if they don’t know, so further south in the valley. We were literally in the hospital room wondering whether we’re going to have a house to come back to. The smoke was so thick in Portland that you could literally smell it from the hospital room inside the hospital at OHSU. Both the Holiday Farm and the Sandy Canyon fires were to the north and south of our house. So it was a stressful time and one that was made more stressful by Covid because I was not allowed to have any guests but my wife because the hospital was on lockdown, and I was lucky to be able to have her. We had a question before the surgery whether that was even going to be permissible for my wife to come in there. So part of the stress around Covid was waiting and the prospect of having to recover for five days in a hospital room without any of my support system.

Frost: This program started in 2015 and has grown. Amy, how much would you like to see it grow and how quickly?

Penkin: As far as growth, I think where my interest right now is that we grow in our capacity to respond to the existing patients. We won’t turn anybody away. We will continue to accept referrals. But we recognize that the wait times are significant depending on which service someone is seeking. Some are in greater demand or have fewer resources to deliver those. So we are hopeful for a really system wide proportionate growth to respond to the ongoing and increasing demand for this service.

Frost: Anna I want to ask you, what is it like for you to be on the other side of this experience that you have waited so so long for?

McDemond: It’s even difficult for me to put in words. I’ve struggled with depression and suicide and a bunch of other things like that. Any of my family or friends will tell you that I am a markedly changed person because of my transition, of which this surgery was a large part of it. Certainly not the only part, but a large part of it. And I’m really the best version of Anna that I’ve ever been.

Frost: Do you have any advice for other transgender folks out there who are waiting for surgeries?

McDermond: I know it’s a long, long wait sometimes and frustrating because for some of us that are especially older, we’ve been waiting 45 years to even come out and start our journey. But it will be awesome when you get there and hold on. I think this kind of dovetails into the whole ‘it gets better’ campaign. It does get better and you can get there, and you will get there, and especially for Oregonians, we have a great resource that will help you get there.

Frost: Thank you so much for sharing your story with us, Anna.

McDermond: No problem. I’m very happy to be on. Thank you for having me.

Frost: Annaliese McDermond has received gender care and gender-affirming surgery. She’s also a DevOps Engineer at Flex Radio Systems. Amy Penkin also has joined us and she is a Clinical Program Manager for OHSU’s Transgender Health Program. They joined us to discuss how patients have been affected in the pandemic. Thanks again to both of you.

McDermond/Penkin: Thank you.

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Copyright 2021 Oregon Public Broadcasting

Julie Sabatier