SARAH: This is At the Core of Care. A podcast where people share their stories about nurses and their creative efforts to better meet the health and healthcare needs of patients, families, and communities.
I’m Sarah Hexem Hubbard, executive director of the Pennsylvania Action Coalition and the National Nurse-Led Care Consortium.
As part of our Access to Care series, we’re bringing you special coverage about equitable access to health care.
On this episode, Part 1, we’re going to hear an in-depth healthcare consumer panel focused on personal experiences within the LGBTQ community. Adrian Shanker moderated the discussion and is the founder and executive director of the Bradbury-Sullivan LGBT Community Center in Allentown, Pennsylvania. He’s also the editor of the book, Bodies and Barriers: Queer Activists on Health.
And then on Part 2, Adrian will join me for a broader conversation on health equity with Dr. Rachel Levine, the Assistant Secretary for Health of the United States Department of Health and Human Services.
Right now, let’s turn it over to Adrian Shanker for the panel discussion he led during our virtual 2021 Pennsylvania Healthcare Mosaic Conference.
ADRIAN: Thank you so much, Sarah, and to the whole team at Pennsylvania Action Coalition, and National Nurse-Led Care Consortium for hosting this amazing conference. Opportunities for nurses and other healthcare professionals to learn strategies for improving care is really essential to LGBT health outcomes in Pennsylvania and beyond. So, thank you all for being here to attend this session today at the Pennsylvania Healthcare Mosaic conference, by way of access, I'm Adrian Shanker, he him his pronouns. And I'm a white man with a purple shirt in front of a purple virtual background. And, and I'm from Allentown, Pennsylvania on unseeded Lenape land. As we're working toward health equity for LGBTQ people, we should also recognize that we do so in a space where indigenous community health is, has also not achieved the unmet dream of health equity.
And I'm here today with Alisa Bowman, and Preston Heldibridle. And Alisa is a parent of a trans child, and also a school board member, and also somebody who is an advocate for trans youth of all ages, and the trans community in general. And Alisa is also the author, co-author of Raising the trans child as well. And Preston is from rural Pennsylvania. And Preston is also a state policy associate for Pennsylvania Youth Congress and is an advocate in Harrisburg, and across the state for issues of importance to LGBTQ plus youth, especially for trans and non-binary youth. So, so glad that you're both with us today. And you're both amazing advocates, and, and have really powerful stories to tell. So before we kind of get into the stories, I just want to frame with it the purpose of this session at the conferences, because it's so different from the rest of the sessions at the at the Pennsylvania Healthcare Mosaic Conference, and that in this session, we're really going to be focused on the the lived experiences of LGBTQ people when it comes to accessing health care.
That's why it's a healthcare consumer panel. All of us are healthcare consumers, even healthcare providers also at points in their life, also need health care for themselves. And that, you know, Dr. Rachel Levine, former Secretary of Health in Pennsylvania, often said that, you know, as a physician, she provided care for transgender people. And as a transgender woman, she received health care from all kinds of health care providers during her life. So that's an example of somebody who received care as a health care consumer and provided care. As a health care provider. I'm asking you as as nurses and other health care professionals listening today to understand that this session is focused on the experiences, the lived experiences of our LGBTQ patient population, and also that when you've heard from one LGBTQ person, you've heard one person's story and experience that all of us are different. We all have our different stories, histories, experiences, comfort levels, positive or negative reactions from providers in the past. And so our experiences are not meant to be a replacement for everybody or even representative of our entire communities experience. So it's important to remember that it's also important to remember that if the goal is patient-centered care, then the goal has to be to listen to your patients. But the goal is not to ask your patients to teach you about LGB about themselves and their bodies. And that's really part of the purpose of this panel is that in this session, Alisa, Preston, and I are happy to speak openly and candidly about our experiences, and to also answer your questions in a way that might be, you know, more appropriate than asking questions to your patients directly. And so that's part of the value of having this healthcare consumer panel at this conference as well. And you, you can ask questions in the chat. And I'm sorry, through the through Q&A feature, and Sarah will be moderating those those questions at the end.
I want to just share a little bit from my own story, to start and then I'm going to turn I'm going to go to Alisa and then Preston. So, from my own experience, I ended up being becoming interested in talking about healthcare, consumer experiences, because of two things that happened in my life at the same time. First, I was a graduate student at George Washington University and their LGBT health policy program. And I couldn't believe that in the amazing amount of literature published about LGBT health, there was very little that was published by LGBT people telling our own stories. Almost all of it made us look like guinea pigs, people researching us, people looking at us, people evaluating us, there was very little about our own authentic voices telling us stories. And the second thing is that my mom has pre-skin cancer, and I'm 33. So, I didn't have a dermatologist as most people in their 20s and 30s don't have a dermatologist unless they've had skin-related health care challenges in the past. So, I asked for referrals to a dermatologist and, and I and everybody in my community recommended the same dermatologist. So, I made an appointment. And eight months later, I got in and and then from the minute I walked into the clinic, to the moment I left, I knew that the care that was being provided wasn't care for patients like me, the intake form was overly restrictive. There was a debate on fox news in the waiting room about gay rights. The magazines were very clear that I was not their target audience. And the actual clinical experience made me not want to return for the doctor-recommended follow-up. And I made another appointment an hour away with an LGBTQ-friendly dermatologist. But most people, most LGBTQ people, that geographic barrier to care needing to travel an hour for another medical appointment, being able to access private transportation to do so being able to take another day off work to do so might be too great a barrier to overcome. So that's just from my own story, my own experience about why I why I think it's so important that we center a conversation around health disparities and health inequities inpatient experiences. So Alisa, and the experiences we're talking about are published in this book, Bodies and Barriers, Queer Activists on how Alisa, you wrote that when you learned your second grader was transgender, you found yourself explaining who your child was over and over again, to a long list of people and you say you cite your parents, husbands, parents, siblings, extended family, teachers, administrators, friends, parents, of child's friends, and so on. And then you say that one person you didn't bother to tell was your child's pediatrician. I'm wondering if you can talk a little bit about what made you feel you know, in your heart, what made you feel that it wasn't it didn't feel right to come out to your child's pediatrician, you know, for your family and for your your child. And, and what that process was like for you and your family to to negotiate what it would be like to look for a different pediatrician instead.
ALISA: Sure, I do want to say that I've talked to a lot of men as the moderator of a support group for parents of transgender kids. This is actually a pretty common tale. It's not necessarily always a doctor that got ghosted, some hairstylist, a whole range of other people, we just stopped showing up and fix someone new. Therefore, we don't have to tell the story for the 200 and 50th time to someone that we don't know how they're going to react. But for the pediatrician, it was mostly that is, you know, they had taken care of my son from infancy. But as he had grown, it was starting to become very obvious that they were that he was different. And I would go to these well-child visits over and over again, but the nobody ever brought up or broach the topic with me. It was almost as if they were trying to talk around it or not mention it at all. And so, when I finally realized what was going on and thought about going back to this practice, I thought, Well, clearly they're uncomfortable with it, or they would have actually known how to talk to me about it. And there are some other signs that they might not be the best practice for me. You know, one year, during an election, there were political signs in the waiting room, which is probably never a good idea to do when you have a practice that may include people from the party that you're not supporting. And so, I just didn't go back there. And instead, I consulted a lot of people and asked, like, where should I go. And at that time, Philadelphia was where I should go, which was probably an hour and a half away. In Philadelphia, I would say that at the Moscone Center, we got better care than I'd personally ever gotten for myself, to the point where I would have rather gone there for care for myself. But that said, I, I'm sorry, I'm going way off topic. So, I'll wrap up. But one of the things I have noticed is that in LGBTQ practices, so places where people specialize and care for that community, they overperform they're wonderful places, tend to, from my experience, anyway, offer more time, listen more deeply, have better their staff is highly trained. And the whole office environment is extremely welcoming and comfortable. And then what I've also noticed is practices that don't specialize in care for LGBTQ people. When I go in for care for myself to one of those practices, I'm treated in a completely different way than when I bring my son in to the same place. And I've seen that discrepancy to the point that it, it honestly haunts me, I wouldn't have known about the differences if I wasn't raising this child.
ADRIAN: Thanks, Alisa. Preston, you you write about safe binding practices for trans masculine youth. First, I'm wondering if you can share, you know, what is binding for healthcare professionals who may not be as familiar with the term. And but specifically, you talk about, you know, how you had to wait months to get a binder of your own. And in the meantime, relied on. He wrote numerous to sports bras and numerous layers of shirts and tank tops. But when you were finally able to buy a binder, it was wonderful, as you wrote. So, I'm wondering if you can talk about the experience, like what does wonderful mean? Like what is the difference for for both mental and physical health? What What did that experience transform for you or feel like for you, that might be useful for healthcare workers to understand?
PRESTON: Absolutely, I think that medical assistant devices for trans people like binders are so underlooked that it's not even something that I considered something that healthcare professionals would even talk to their patients about. So what binding is it see where when you when usually trans masculine people wear a device, similar to that of like a tank top or a sports bra, and it compresses the chest area, the goal usually isn't completely flattened on the chest, because for a lot of people, that's just not possible. But it's to give it a more traditionally masculine shape. So that both you know, externally, you are more likely to be perceived, not as, you know, assist female, and also internally, that wonderful feeling I was talking about. When I wrote my chapter, I really had no idea how much anxiety and dysphoria I was carrying, before I got a binder and started wearing one. It was just so present throughout my entire life. And I noticed that when I put it on, and I would go out, I wouldn't feel like everyone was judging me or staring at me. And me personally, I tend to shy away from talking about my experiences with dysphoria because it's just so pathologized in you know, our culture. But really, even though I constantly still get misgendered and it doesn't really bothered me as much anymore. Just the way it makes me feel personally, without even the perception of other people coming into play. It's really changed my life so much, much. It's just a huge burden, literally lifted off my chest. Yeah, it's just being able to go about life without that added stress and anxiety. And feeling like there's a spotlight on you all the time.
ADRIAN: Thanks, Preston, you also wrote about how, for some trans masculine youth, the challenge to accessing a binder is the cost. And that there are unsafe, less safe practices, physically less safe practices, that some people turn to, you know, such as duct tape, or things like that, because it's what people can access. I'm wondering if you can speak a little bit to, you know, the cost and the, you know, the, the challenges that people not being able to afford, especially youth, and not being able to afford, what they need to keep themselves safe, mentally and physically.
PRESTON: Yeah, so binders generally run for a good binder, the most reputable brand is from gctv, they run usually around 35 to $45, which, you know, to someone who's working full time might not be that much money. But especially to someone who doesn't have the ability to have their own income, like many youth don't have that opportunity, you know, that can send them set them back months and years. And that's not even taking into consideration, you know, parental pressures. And because that feeling of relief, when you are able to bind this so profound, were likely to seek alternative methods of getting that relief. Some alternative methods of binding are, you know, keeping the chest stone, or you know, as I did wearing layers of you know, bras and tank tops. And both of those methods, really constricts the chest and make it hard to breathe. It can, you know, make you overheat. I know one when I was, you know, doing that layering method, I almost passed out in a park because I couldn't get enough, you know, air and it was hot out. And those are those are short term consequences. But in the long term, it can damage tissue in the chest and even make someone ineligible for top surgery down the line if they choose to go that route. And so it's important to understand and be able to communicate, you know, to patients that you see that there is a way to go about finding in a healthy manner. And there's a way to go by it that to go about it that will lead to get a lead to health consequences.
ADRIAN: And just for folks that are listening that may not be familiar with the term top surgery, said it's a type of gender affirming surgery that you may be most familiar with, if you think about it as a double mastectomy. So Alisa, you also talk about costs. So at one point, you talk about the cost of puberty blockers or other kind of gender affirming care for your son. And so as a follow up to what Preston just talked about, in terms of cost for for binders, and and this situation is also a little different as you're speaking as a parent. And so, first, I want to recognize that I wish that every LGBTQ youth in the country had a parent like Alisa. Because what a world of difference it makes when LGBTQ, especially trans youth have parental support, and you know, the love that Alisa that you show for your family, but also the advocacy that you show to your health care providers. On behalf of your family, so I'm wondering if you can speak to the cost barrier for for our family as well.
ALISA: Yeah, so um, any of these, I've since learned any of these medicines are basically injectables. So, you know, puberty blockers, they come, they need to be injected. And there's only a few different companies that make the medicine that they basically patent the the syringe, the medicine itself that dates all the way back to the 1950s. And so can't be anyway, it could be generic if it wasn't for the syringe part of it. Because of that. It's super expensive. There's a few different forms one can be implanted in the arm. My son had that last year, done last for one year and I believe when I looked at all of the costs, it was $45,000 There's also shots that are the last maybe a month or two, I can't remember because it's been a while since we've done those, but at the time, it was, I think six or $7,000 a shot. So you would get this shot in the mail mail order, you'd keep it in your fridge, and you would treat it as if it was like the most delicate thing in your house. You know, and if you weren't going to use one, you're just looking at this thing. And knowing that cost $6,000, it has to go into a body, you know, when we first started doing blockers, was many years ago, a lot has changed for the better since then. But it was almost never that insurance covered them, which meant that people were paying out of pocket. And if you can imagine, you know, your child's going to be on something that costs at the time was about 30,000 a year now it's even more for several years, and you're a middle class family, you kind of realize that that's impossible. But you're going to go into debt doing this. And actually, even with insurance covering it, I was on many different payment plans at different times. So at some point, more and more insurers started covering this. And so now I think the main barrier, even if you have insurance, or these high deductible plans, like for a while I was on a plan where my deductible was, I think it was $8,000. So every single year I maxed out at 8000 in January because of this medicine. And you know, I learned how to work the system and learn how to go on interest free payment plans, because every hospital and pharmacy will let you do that. I don't know if people know that. And you just pay what you can pay until you have it paid off. Sometimes I was just paying $15 a month, knowing that I'm going to be paying that for a very long time. But there's also other organizations that will help. There are some places like the Mazzoni Center in Philadelphia, which has a program that if you get into that they can help you get medicines for a lot less. So what might cost $6,000 you can get for about $30.
ADRIAN: Thank you, Alisa and I want to share I know there was another presentation about the 2020 Pennsylvania LGBT health needs assessment. But I will put the link to the report in the chat for folks as well. And I want to just say quickly that the 2020 clean LGBT health needs assessment confirmed that one in five LGBTQ Pennsylvanians are in medical assistance. So one in five is a very high number. It's an indicator of higher poverty rates in the LGBT community. And so that's just something to be aware of, for your patience. Alisa, you also talked about when you found a new clinic for your son, you wrote, as soon as I walked into the clinic, I knew we were home. Can you talk about what made you feel like a clinic was so affirming that you could describe it as home? Because there's a lot of healthcare professionals that are listening in today? probably thinking, I want to be the one that provides the best care. Right? So what what did it feel like when it was when it felt like home?
ALISA: I've actually found a few clinics like this now, and they all do different things, but some of them are visual, whether it's a rainbow sticker, or a one that I go to now has posters, or like framed art on the walls of the transgender women, for example. And or they all do on the intake form asking your pronouns or asking about information that places that are not affirming don't even bother to ask. And the front office staff is so well trained, that they never mess up someone's name or pronouns. I've gone to places that do get the intake form, correct, because maybe they've heard that they're supposed to ask these questions, but then nobody ever looks at it. So you fill out the form, you say what the pronouns are, and then you go to the front office staff and they still use the wrong pronouns or the wrong name or whatever. And I guess the other thing is that they understand all of this is hard for me to summarize, but the people who are treating the patient, know all of the different questions to ask. They understand the different health needs, and then they're not always there's things that they don't do. For example, I know a place isn't affirming if my son presents with something like an ear infection, and their first thought is It must be his puberty blockers. And I've had this happen before, like, it's, it's amazing to me I know places and affirming when their first thought is, it must be a side effect from this medicine that I don't believe in, for example. So, you know affirming places don't do that. And they also kind of know the psychology involved. So like, they might immediately understand if there's repeated bladder infections that it might be because of dehydration. Whereas somebody who's not affirming and doesn't know the all of the psychosocial factors may not immediately understand why dehydration is a thing, if that makes sense.
ADRIAN: Preston, I wanted to change kind of directions a little bit. At one point, you wrote that for some in the trans community, the words of medical professionals may not mean much unless backed up by a fellow trans person. Can you talk a little bit about where in your either experience or perception, trans youth are looking to get information about things like binding or trans care in general? Are they are they looking for from their health care professionals? Are they going to Tik Tok and YouTube? Can you can you just share so that health professionals might understand? like where are trans youth getting most of their healthcare information from?
PRESTON: In my experience, and I'll people I know and talk to social media is the number one resource for anything trans-health-related, which is unfortunate, because they're looking for information from other trans people. Because we're often the best informed on our issues. But even with all we know, and all the information we've gathered, and all our expertise on ourselves, we're not healthcare providers, we're not medical professionals. And especially when, you know, they're looking as teenagers, and they're looking towards, you know, people older than them, a lot of LGBT elders, so to speak, are only in their, you know, their millennials, they're under 13 themselves. And that's not to dunk on, you know, youth but, you know, again, why not medical professionals, and we're giving our best advice and giving along warnings, like, you know, we're not medical professionals, please talk to a doctor as well, please go to such and such official, you know, health care website. But when you're a teenager, and you're just looking for information, often the experiences we've had, whether it was a negative experience or any health care providers, we know just don't don't know anything about trans bodies or trans psychology or anything like that. We're not going to trust that they have our because they don't have our best interests at heart, but that they they don't know our needs, and they don't know what's available for us. And so yeah, Twitter, Tumblr, Tik Tok, YouTube, I would say more so than any, quote, reputable medical website, even that's where young people are going for information.
ADRIAN: And just to follow up on that, Preston, what would what would it look like for you? Or what would you imagine it might look like? If, if your health care providers were either knowledgeable or trusted to provide information about safe binding practices? or answer questions about for example, like sexual health for trans masculine youth or questions about, you know, like questions that you might have around hormone therapy or, or puberty blockers or stuff like that, what would it look like for pediatric care professionals? Especially to be able to to answer those questions? What would that have been different for you? Or for what what might you expect it look like in more of like a utopian space where healthcare is truly equitable?
PRESTON: Yeah, I think for one, a lot of younger youth might find words to describe their experience sooner. I know growing up, I was never asked anything about gender or gender identity, or anything of the like, ever. And then also just, I think it would cut down on the amount of misinformation going around that can be, you know, damaging to someone's health if they if they stumble across that. I think that it would encourage a lot of LGBT people and trans youth in particular to You know, be a lot of us don't consider health care and necessity. And a lot of us can't consider health care and necessity. And part of that is we haven't had that rapport and trust built up. I think we would be more likely to be healthcare consumers. If we knew that even for something that wasn't gender-related, that we had someone who really was familiar with, you know, the unique issues that we face. You know, going into care if that makes sense.
ADRIAN: Thanks, Preston. And Alisa, in a minute, I'm going to ask you the same question, but I want to, I want to read something you wrote. So you wrote my transgender son and ever behaved presented himself or carried himself like a typical girl. By second grade, his short hair was nearly buzzed, and he worked highs and only allowed me to shop for him in the boys section of the department store. his hobbies centered on watching World Wrestling Entertainment, memorizing Pokemon characters and playing Bakugan and kickball. His transness was on full display, and loudly noticeable to just about anyone who had the slightest inkling of the science of gender diversity. during several doctor visits. I've even mentioned telling signs how my child refuses to go to the bathroom at school, for example, there have been plenty of openings yet our pediatrician never once asked us questions about our son's gender, nor suggested that our child might be trans. It was akin to treating a child with high blood sugar, and never once saying anything to child's parents about type one diabetes. So I want to ask you the same question, what would it look like? If it was different? What would it look like? Like? If If, if you were asked or your child was asked? Or if healthcare was treated equitably? For for trans masculine youth?
ALISA: Yeah. Well, I think, one, the there might be literature in the waiting room about gender, right. And then the intake forms, obviously, would include all of the options, and the front office staff would be welcoming and friendly to everyone, including people who are different. That's probably one of the main things that I've noticed, because I have had the experience of having one person treat me and then the same person treat me and my child and, and getting a completely different experience. And when people are uncomfortable, they're less friendly, whether they're trying to be or not. And, and so welcoming, and friendly, and being truly inquisitive, and willing to learn. I haven't asked all of my son's providers to know everything, because I know some of them are desperately trying to learn, that's completely fine. If they're trying to make the whole profession better by teaching themselves. The ones that are hard hardest, are the ones who are not trying to learn or who or who have hubris and think that they know everything when they don't. So, um, I think the welcoming practices. It's such a platitude, but really, the main thing is that they treat all people like human beings, and really want to help heal and learn everything they can and are willing to say, I don't know, and they don't know. But they make their entire practice welcoming. And I think when you do that, from your demeanor to your literature, to what art you put on the wall, to how your staff treats people. People feel it, and there is a different feeling that I get. For example, if I go to a center that is I'm sorry, I can't think of the word I'm looking for, but friendly to LGBTQ people versus one that's not trying to be it's a completely different feeling.
ADRIAN: So in a moment, I want to ask both of you a question about geography and transportation as a barrier to care. But first, I want to just remind folks that if you have questions for Preston, or Alisa, or for me, you can put it in the Q&A, which should be at the bottom of your zoom box. And we'll make sure we have time for questions towards the end. And this is an appropriate time to ask questions that you may not want to ask to your patients directly. So if there's a question you've wanted to ask, we're at a conference and this is appropriate. So I also just want to frame this question for healthcare professionals that are listening that we talked about transportation and public health as a social determinant of one's health. And in Pennsylvania, we have 67 counties. And we also have a telehealth law that is complicated to get care across county lines, because of insurance barriers with the telehealth expansion. But for both Preston and Alisa, you both experienced geography as a barrier to your carry that you either wanted to receive either for you or in Alisa's case for your son, that and so I'm wondering if we can speak about this kind of, kind of collectively, you know about. So Alisa, in your family situation, it's not that there weren't any pediatricians in the county where you live, it's that you were looking for a pediatrician that had kind of unique expertise, medical and cultural and working with Trent with with the trans youth population, right. And for Preston, you, you talk about growing up in a rural community, and living in in a part of Pennsylvania, where maybe there aren't trans care specialists, and in that county, or at least in close distance, where a youth doesn't have access to private transportation may not be able to access the care that they need, particularly if they're reliant on parental support. So I'm wondering if you can, if you can both speak to this possibly together, or separate just about transportation and what the challenges for transportation are, or have been for, for you, for you, and or for other transmasculine
ALISA: Preston, do you want to go first?
PRESTON: Sure, I can go first. Um, I'm going to start by saying there's a reason I had a choice between choosing whether to pursue hormone therapy, or to acquire a vehicle and the vehicle was absolutely feel overwhelming necessity. It's so hard to do anything, when you when you can't, you don't have freedom of movement. Even you know, trying to get to, you know, the doctor's office, when I was still living with my parents, most of my parents are disabled. And so driving, our doctor's office was over an hour away. And so anything less than, you know, someone's, you know, dying or, or, you know, in dire need of care. You know, otherwise, we could only go in once a year. And there was no way for, for me to take that into my own hands. I couldn't walk even if I wanted to there, you know, the way our road systems are designed, you would run into a freeway, there was no public transportation I can take. And this is the way it is for, you know, it was that way for many of my friends, too. They couldn't access any any medical care if they needed it, unless their parents would take them. And a lot of times with, you know, their jobs or their family situation, it wasn't, it wasn't. It wasn't possible. And even after I moved out, I still faced the same barriers. If I if I had to go to the doctors, even for just something simple, like a vaccine for work, it would take, you know, four or five hours out of my day. So yeah, I'm not I'm not sure what more I can say to that. But it's, I would say it is almost the number one determine other than financial, for a lot of young people, you know, barrier to medical care.
ADRIAN: And then we layer on top of that. Now you need a specialist that might not exist even an hour away. How many hours do you have to drive to find a pediatric endocrinologist with specialty and working with the trans patient population from your rural county, right? Alisa, do you want to answer as well?
ALISA: Yeah, sure. I do want to say that at least in my area, things have greatly improved since my son was in second grade. So I am no longer driving to Philadelphia because I found great medical people closer I'm sorry, I'm certain words are just not coming to me today. But anyway, when we were driving to Philadelphia, there are two things that I think are important. Like, my husband and I both were, I would I would describe us as like solid middle class. We have the means to be able to drive that far, that's not the problem, I can pay for the gas, I had a car. But when you're going about an hour and a half away to take your child to a doctor's appointment, that's a day off from work. And so, and I happen to have a job at the time where I didn't have sick days, so every day off was one less of my two weeks of vacation. And basically, that's what I did. I'm sorry, I have a dog that's like violently sneezing next to me. So, you know, that's how I spent my free time, which was basically driving to Philadelphia and sitting in waiting rooms and then driving back. And that, but that's also a privilege, like not, not, not all people even have that. But on top of that, it's not, it's possible to take your child that far away for a well visit, it makes it a lot harder when they're sick. And they need care right away, for example, they have pneumonia, and you're looking at driving to Philadelphia, so someone can listen to their lungs, and then you're going to drive somewhere else and fill a prescription, and then you're going to drive all the way home with this very sick child. And, and so, and things like that would happen periodically, which made me realize, you know, it's just not feasible to have the number one doctor in my child's life that far away.
ADRIAN: Thank you both for answering that question. And I want to just take that question one more step, which is telehealth is on everybody's mind during COVID-19. Because, especially at the beginning of COVID, when we were really trying to limit anything in person, unless it was, you know, as Preston described a very dire situation. Much of healthcare in general has moved to telehealth where possible, and I also think that both healthcare consumers like us and health care providers are more comfortable with telehealth today than they were pre COVID. Because it's become, you know, we're all used to the technology a little bit more. And so I'm wondering if, if either of you have had any telehealth experiences? If so, how you feel that that might impact access to gender-affirming care? If not, if you have any thoughts about how it might, and I want to just add that we do know statewide that the telehealth expansion does not allow th I think the most important thing in allowing me to do that was that we had built up rapport and trust, which I hadn't had a chance to do with a with a medical professional before, even in previous, you know, primary or primary care facilities. And I think that's the number one thing because usually when I when I go into any any healthcare setting, I don't feel like I'm supposed to be there. I don't know how to describe it any better than that. And oftentimes, I won't offer that information unless I'm asked about it, and I've never asked about it. So I guess that would lead into the second recommendation would be which would be to not make assumptions. I think especially with young people, asking is always good. You In a confidential manner when when possible? Yeah, I'm sorry, I don't quite. Yeah, I feel like I don't have as much experience on this. But I hope that was somewhat useful.
ADRIAN: Actually, I think what you just said is very useful, which is, you know, in essence, we can sum it up as to treat me You have to know who I am. Right? That we, we can't, we can't have healthcare professionals guessing about our behavioral risks, our identities, frankly, even our body parts, and that it's useful to provide the best care for us to ask the questions that allow you to provide the best care for us, and the disability rights movement. The Disability Rights, the disability rights movement famously says, nothing about us without us. And I would say that the LGBTQ health activist movement might alter that slightly to say, you know, we, we want you to ask us, so that we can tell you what you need to know, because we want to be part of our own healthcare outcomes as well. We know, health care outcomes shouldn't happen without us, they should happen with us. So, with that, I'm going to turn this back over to to Sarah. But first I want to thank Preston, and Alisa for so openly sharing of yourselves and your experiences, your family's experiences, and for healthcare professionals who were listening, and I put my email address in the chatbox. For anyone low vision, I'll verbally just say it's Adrian at Bradbury, Sullivan center.org. And I welcome opportunities to talk further about resources or training for your clinical setting as well. e coverage across county lines for a lot of gender-affirming care. So, we still have that a little bit of a barrier as a barrier. But I'm curious about if either of you have experiences. And just another reminder questions can go into the Q&A chat at the bottom of the zoom box. Alisa, do you want to start this one?
ALISA: Um, I have seen some barriers and I don't know if they're specific to companies. I had first looked into telehealth maybe six months ago and my insurance only allowed it for the grownups on the plan and not for the under 18 person in the house. And I don't know what that was for. I have looked on other plans where I don't believe that's a barrier, but that basically ruled completely ruled it out. I think telehealth is great when you have an acute problem that is very easy to figure out what it is. I'll just speak personally; I think all women know what about bladder infection is and we don't really need to pee in a cup. Like we absolutely know what we have. But then I'm sure there's the healthcare professionals listening could probably come up with lots of examples where you really do need to be seen in person to diagnose and, but you know, for these ones, where it's easy enough to do over the phone, or over a computer. It's it really is a game-changer. The one that I've seen the most is mental health counseling, which I kind of hoped stays as telehealth after the pandemic because it has made that more accessible to way more people than it used to taking it from again, another day off for mom or dad or whoever the caregiver is to allowing it to just come through the computer and be a half hour-long appointment.
ADRIAN: Thanks Alisa, and also for the type of care where people go routinely for the same the same care. So for example, a person that's on that's on prep and needs to have regular doctor visits just to look at, you know, for example, like lab charts and, and to ask some check in questions. Those kinds of services can be also greatly expanded with with telehealth because people can access any lab and have the records sent to the doctor that might be an hour and a half away. Same possibly with hormone hormone levels and you know doing check ins along those lines. So, there may be some Benefits of that area. Preston, do you have any thoughts as well about telehealth?
PRESTON: I don't have any personal experiences with telehealth, but I do know, like Alissa mentioned, it has opened up access to mental health care for many people what I do know. So, I hope that aspect can carry over after COVID is hopefully mitigated.
ADRIAN: Yes, there will be a time after COVID, I am confident of it. Well, I want to just, you know, as we're moving into kind of closing the session, ask you what each one last question. And, and that question is, what's the number one or number one and two things that you wish that you could say, to your healthcare professionals? Or at least this case to your child's health care professionals? What is it that you really want the takeaway to be that, that if healthcare professionals heard something differently, learn something differently, listened differently, that that care might be drastically improved? What is the one thing that you would love to share with healthcare professionals?
ALISA: That's such a deep question. I really think about it, the first thing that popped into my mind might be something that Yoda said and Star Wars, I'm not sure. But it's just don't worry. Just try. You know, if you have a big heart, and I think most people who go into healthcare do lean into your big heart and use that to, to love your patients. And if you start from that place, I firmly believe that though you'll make mistakes, because people do when you don't know enough. As you learn, you will build your practice into a welcoming practice. Perhaps maybe step two, would be connecting with people who are known to be affirming healthcare professionals. They're not hard to find many of them want to train other healthcare professionals, they see that is a goal that, you know, a privilege that they want to use in their careers. So that's probably a very easy way to learn how to be that person. And I think the last thing I would say is to listen more than you talk. I mean, all of these things are good rules for life in general, right, let's like find a role model. Listen. But I think the listening thing, if I think about it, that's probably what healthcare providers that were in unwelcoming spaces, that's what they were not doing. They were not listening. They were jumping to conclusions. And the health care professionals that I found to be affirming and welcoming, listened more than they lectured.
ADRIAN: And Alisa, one one attendee first name, Aaron says, what a beautiful recommendation lean into your big heart. Preston, any thoughts on your end?
PRESTON: Yeah, um, I, I've been uninsured for at least half of my life on and off. So, you know, I have more experience with urgent care facilities than like family doctors. What are they called PCPs primary care practitioners? But I do know that when, when I when I when I did have the opportunity to receive primary care. I've only once in my life disclose that I was trans to medical professional. And it was to a primary care practitioner.
CREDITS
SARAH: Special thanks to Adrian Shanker for moderating the Healthcare Consumer Panel at our 2021 Pennsylvania Healthcare Mosaics conference. And panelists Alisa Bowman and Preston Heldibridle for participating.
And next time on At the Core of Care, we’ll bring you Part 2 of our coverage about equitable access to healthcare. A conversation with Adrian Shanker and Dr. Rachel Levine, the Assistant Secretary for Health of the United States Department of Health and Human Services.
Funding for our special Access to Care series comes from the Center to Champion Nursing in America, which is a joint initiative of the Robert Wood Johnson Foundation, AARP and AARP Foundation.
For more about us and our programs, log onto paactioncoalition.org and nurseledcare.org. And keep in touch with us on social media @PaAction and @NurseLedCare.
At the Core of Care is produced by Stephanie Marudas and Emily Previti of Kouvenda Media and mixed by Brad Linder.
I'm Sarah Hexem Hubbard of the Pennsylvania Action Coalition. Thanks for joining us.
