We are now going to have all of our panelists join us on stage but in addition we are going to have two other panelists from the fine state of Florida where we are currently located who are going to join us. In particular we're going to have Dr. Katani who is a neurologist and epileptologist at Advent Health in Tampa. She is also on the board for the Epilepsy Alliance here in the state of Florida and she's going to talk to us very briefly about some of the issues related to health care access and vulnerable patient populations in the state of Florida. We will also be joined by my friends Naime Velas-Ruiz who is from the University of Miami where she is currently an associate professor. Dr. Velas-Ruiz has an interest in women's issues in epilepsy as well. For those of you who would like to ask a question please come up to the microphone and speak into the microphone. Hi, thank you all so much. I have a question for Dr. Dutton. Whenever you recommend the referral for contraception, essentially to counsel the patients, I mean I'd love to do that. I'm currently in my second year fellowship in Philadelphia and I realize that it's a bigger of an area. There are not that many OBGYN clinics accepting new patients. Like just talking about my wife's personal experience looking for OBGYN care, non-obstetric OBGYN care, the wait list was six months and we called a lot of practices. So how do we get around that? Do you ever just teach epileptologists how to start up? So I do have a few who are prescribing hormones with counseling. However, many academic centers have specialists in complex family planning. There are fellowship sites around the country and HUP and Penn See would be great resources for you in Philadelphia. So they may only exist in some of the larger cities, but that is at least one resource you could use for getting someone a consult that doesn't necessarily require establishing care and having an ongoing relationship with a provider. In individual communities, I think you're starting with the OBs that see epilepsy patients might would be a good way to find referrals and they'll know who in their community will be willing and interested and able to see those patients. Thank you. I'd like to ask Dr. Katani to join the conversation and kind of share her insights from a community practice here in the state of Florida while other questions are coming forth. Thank you for inviting me to the meeting and great lectures everyone. In Florida, coming from New York, I noticed there is a big challenge in providing care, medical care in general, for epilepsy is even more challenging. There was also a larger influx of people moving after COVID or during COVID to Florida, but not necessarily enough providers to provide the care for patients and mainly specialists and subspecialists. There is another obstacle to delivering proper care to patients in Florida is the insurances. Insurances are very difficult to work with. For patients, you see their physicians, it's almost impossible sometimes and for them to access medication is very, very hard. The lack of staff that can support also the workload that is associated with a large number of patients that need epilepsy care with the lack of providers is also a major obstacle. I mean the list is long, I could keep going on. I think we all could. Hi everyone, thank you so much for the excellent session. I have a question for the panel and it's something that I always want to ask, I don't know, does the society, our like specialty society, the AES or the AEN, have any resources and thinking about the changing political environment that affects some states but not all, any resources from the legal standpoint, counseling standpoint, for the physicians living in the states that are restricting the care we can give to our patients to kind of guide us on how to do certain things? Well that's a good question. I don't know if Dr. Valiz-Ruiz would like to take that, practicing in Florida where there's restrictions. Yeah, so in one thing that has really helped me is creating alliances and once I identify an OBGYN that it's a person I can count on to refer my patients in my practice but also some in the community. Once, for example, I have a very good relationship with maternal fetal medicine providers and also with the complex planning specialist in my institution but also I have created alliances with other OBGYNs in the community and when I have to navigate they are typically very well versed in the intricacies of the law because there's a lot in the law especially the one I'm familiar with in Florida that it's up for interpretation and a lot of the things that some providers do or do not do are based on their interpretation of the law. So when I need help in terms of navigating the law I communicate with my OBGYN allies in my institution and in the community I do, you know, there are some online resources they have directed me to, for example, when I want to refer a patient that has and it's pregnant and we like to have an abortion after 15 weeks, for example, I have resources where I can offer to them some information where they can find some states and hotlines and I don't know that we have within the AS a way to legally, you know, seek advice or counsel and if one of my colleagues knows can tell me and the audience but in terms of the legal aspects I do not think we have that and I think it has to do with the fact that the law changes state by state and there's a lot that is open for interpretation. I can tell you of a case about one of my patients who actually was 16 weeks pregnant when she realized that her fetus had several major congenital malformations and she wanted to have an abortion and she just couldn't have it in Florida and she didn't know what to do. She was seeing someone in the community that was having a hard time helping her and I reach out to the complex family planning specialist in my institution. I asked him for help. He had trained in New York and had some contacts and resources and was able to help her find another provider in a different state and help her provide some sources where she could apply for funding in order to pay but it's just creating alliances with the OBGYN people that I get by. Maybe the OBGYN societies have better things in place. They still very commonly at all our meetings they can't give us legal advice. They can educate us but can't give us legal advice and so the person that's been most helpful for me has been the general counsel at my institution. Other colleagues of mine who run private clinics have to engage counsel to advise them individually but the general counsel should be up to date on all the laws whether it's gender affirming care or abortion or other ways our patient's care is impacted and be able to advise you based on institutional policies the best path. Thank you so much. I have a question for Dr. Dutton. So you mentioned the ways that the new restrictions on abortion access are impacting training for OBGYN residents. How is it affecting how OBGYNs who are finishing their training choose where they go to practice and even existing practitioners where they choose to do their practice? Have we seen people leaving some states because of concerns about the restrictions and regulations? I'm not aware that we have that data yet. I know that in general most graduates of residency programs tend to stay near where they trained. I assume that's similar in specialties as well. The training in abortion care is a required element of OBGYN residency training and so across the country there have been multiple traveling clinical rotations set up for residents to travel to obtain that required part of their skills. Hi Dr. Johnson. I'm Nina Garga from San Francisco. Do you know if there's any data on certain anti-seizure medications and the risk of mental health side effects, particularly in the gender diverse population? That is such a great question. I'm not aware of any specifically in the transgender population, but you're absolutely right. We all in our care see increased risk of depression or mood worsening with levotracetam and some others, but you're absolutely right. I think that's research that needs to be done. We'd say, oh, levotracetam, it's great. It doesn't interact with your hormones, but that mood is a real issue, especially with the increased depression. That absolutely should be done. Question for Dr. Tyshchenko. So now we're well into the second year of war in Ukraine. What are the specific needs needed now with ongoing trauma there? So thank you for this question. As you can imagine, the pharmacies got reopened on the de-occupied territories and the supply of medications to the hospitals has increased. Supply of medications got re-established by and large. However, as I mentioned a little bit, the need is in neuro-rehabilitation and in just TBI-related conditions, amputations, and then just getting the more specialized care procedures re-established and ramped up. As I said, equipment was delivered. Several machines were purchased from NATO, and they got delivered. And then several hospitals requested intracranial EEG machines. So we're kind of trying to gauge our resources and trying to deliver it there. But by and large, it's still combat supplies, you know, related to the frontline operations, you know, basic tourniquets, hemostatic gauze, everything that combat medics use. And that's what we are trying to focus. But subspecialty care is by and large gotten on its feet. Well, we can keep asking each other questions. I have a question for Dr. Johnson. So have you found specific communication or marketing or messaging that helps open up the lines of communication that make, allow population feel safe? You know, so for, I have to say, we're going to talk about this also at the DEI SIG tomorrow, so everyone come to that too. But it's kind of one of the myth-busting things. I think it's important, you know, two things that I, you know, I think are myths out there that I also had to learn are, oh, one myth is that, oh, you only should share your pronouns if there's some confusion. And, you know, I thought, okay, I present as a woman, I go by she, her pronouns, I might not have to share those. It's not about necessarily, you might be, someone might be confused about me or about someone next to me. But I think having those pronouns is a signal and a sign to people that, yes, we welcome that, we welcome your, you know, your expression. And just the, it was such a small gesture and I didn't realize it, but it made a difference to patients. When I started wearing the Progress pin, which is the rainbow flag with the BIPOC colors as well, the very first day that I put it on, two patients actually commented on it and said they appreciated that I was wearing it. And I thought, why have I not been doing this for years and years? Because it seemed, I thought, oh, I'm a nice person. People, of course, will assume that I'm friendly and welcoming, but that small symbol made such a difference to two patients that they commented on it. Thank you. That's powerful. Thank you. Thank you so much. Just in the back here. I'm Nassim Zaghavati from VCU. I have a question. I embrace gender-affirming care. I try to use the right terminology. There was an article published in The Economist in April that suggests that the evidence for medicalized gender transitions in adolescents is worryingly weak. This article has been brought to my attention by The Economist and my family, and I just wonder how I can respond to them. That's an excellent, that's an excellent question, and it is, you know, in adolescents especially, I know it's controversial in some situations. People often kind of bring up like, oh, isn't there a rate of detransitioning? If you look at large studies, it's like 1% for people who have been thoroughly evaluated by a Center for Transgender Health. There's a very low rate of people who detransition or retransition. And I think the mental health aspects just can't be overstated enough. One of the people, actually Dr. Miroshny framed this at a discussion this morning about pediatric epilepsy surgery to say, okay, what are the risks of the surgery? We shouldn't necessarily only be thinking about what are the risks of going forward with epilepsy surgery, we should be thinking about what are the risks of not doing surgery? That's ongoing seizures, memory impairment. I think of gender-affirming care as something similar, and that what are, you know, maybe there's risks, there's some signal that, okay, bone density might be affected, especially in adolescents who are getting the GNRH analogs. But if you look at the risks of not doing affirming care or of not affirming someone's gender, there's mental health risks and the very real risk of suicide, I think, is a powerful couch R&B. Thank you. Hi there, Aaron Shaver from Dayton, Ohio here. I was wondering if any of you, I struggle a lot with my patients who can become pregnant, and as you presented, like, wanting to respect LGBT community, and like my lesbian patients, like, technically, usually they would not become pregnant, but I've also had patients that have lied to, or maybe not lied to me, is a little strong, but I just had one this past week that now she's back with a man. And so I try to respect patients, but I've, myself, is just kind of, if you can become pregnant, you get to talk about risks to pregnancy, basically. I guess, do you have any suggestions on kind of how to go about that? I think that's a phenomenal point, and I'll frame it as, you know, I have this conversation with all of my people who physically could become pregnant, and we can't assume, necessarily, you know, this is not a patient of mine, but there are people who, you know, I could have a patient who was born, you know, she was assigned female at birth, she has female organs, who might identify currently as non-binary, or I could have a person who is lesbian, but their female partner was assigned male at birth and hasn't had. So we can't make assumptions about what kind of sex people are having and who they're having it with. So I think you raised such a phenomenal point that we should still be having those conversations. And we try to frame it in as neutral a way as possible, to say, okay, just anyone who could physically become pregnant can have those. So thank you. I counsel every single patient that has a uterus. Like, if that person comes in and I can't tell by the chart, I will counsel. And, you know, because they can decide whatever way they want to have a baby. So it's just a matter of education, and you educate everyone the same, and I don't think you will offend anyone just by educating them by implying they can get pregnant because they have a uterus. I think for me, in my practice, again, not to be offensive or not to say anything that could make anyone upset, I always ask them, instead of documents in female or male, patients of this color or whatsoever, I say 34-year-old, and I ask the person, how do you identify? And I write whatever they identify. And I think it makes it simple and easy, and it's not an awkward conversation because we're still trying to, some pretend to be okay with it, and it's obvious to a patient because they're very vulnerable. And to be just neutral and be comfortable with everything, I feel it's important to have it as just a question. You ask, are you right or left-handed? How do you identify yourself? And it makes conversation easy for everyone. That's my approach. That's fantastic. And for me, it's taken practice when I first, when I had my first patient that I knew was transgender, I didn't know how to talk about it. I didn't know how to address it. And I found myself kind of awkwardly asking about, like, oh, have you had any prior names? But what you say is beautiful. We need to practice, and we need to just incorporate that as a neutral, nonjudgmental, accepting part of our practice. I agree with you. And as you said earlier, you come from a very conservative area. I grew up in Morocco. It's not even something that is even acceptable remotely. And it took me years of living in America to understand that it's normal. It's preference is just something normal, but it's not normal to everyone because ignorance is out there, like ignorance about epilepsy and the stigma about epilepsy. It's ignorance, and that's what we have to fight. And sometimes to fight ignorance, we have to make some definitions more simple instead of making them complex and more difficult. It's beautiful. Dr. Edwards. I have a telehealth question all the way down here. So telehealth is a big part of my outpatient practice. It allows me to see patients from all over the state, and it's a great advantage for them. But I am particularly worried about December 31st, 2024. You mentioned the possibility of rural emergency rooms, and all these folks live near one. But right now, telehealth from home is free. And setting up that clinic in the ER is not. What are your thoughts on that? Who's gonna pet? Right. Well, first of all, setting up a clinic in a remote or a rural emergency hospital, it doesn't need to be in an emergency room, but it can be at a clinic that's affiliated with a rural emergency hospital. So it doesn't need to be in an emergency room. And I agree with you. I think telehealth out of a patient's home makes sense. And if you were starting all over again, and you had never started off with all the visits need to be in a physician's office, then you would never have designed it this way. If I were in charge, I think telehealth visits from home work really, really well. In all honesty, I do think we should receive less of a facility fee, because they're not using our facilities. I think that's fair. But to eliminate it, I think, is a disservice for a lot of our patients. In terms of partnering with a rural facility to do a clinic there, I think it's a smart move, because it's better than the other alternative. And you were talking about earlier, surgery versus not surgery. The alternative is not surgery. You have to compare those risks. The other alternative to doing that is they have to come back to commuting all the way to our center. And the downside to going to a local community hospital for many of these patients is a lot less than the downside of having to go all the way to a tertiary epilepsy center. So it's sort of the better of the two options that are left. But it does need to be out of an emergency room. It can be at a clinic that's affiliated with a rural emergency hospital. And there are many of those. They're almost like these forgotten hospitals that many of us don't even know exist. And they're really struggling to survive in the modern world. And I think if you look into that as an option where you are, you'll find a lot of them that really want to work with you, because they need patients in order to stay open. They're much closer to the patients than we are. Thank you. Final questions or comments? I have a comment. Oh, we got somebody. And we have... Hi, good afternoon. Hi, good afternoon. Thank you so much for all the lectures. I'm a resident, and I have a question kind of maybe from the other side. I'm a resident in University of Miami. And when I was at PGY-2, I had an enlightening lecture at AAN about asking about pronouns, how to not be judgmental and not just assume things by the way people look, because we all have our own identities. And after that, I tried to always come in as open as possible with all the patients. Where I train, a lot of the times people have, I don't know if it's a more conservative view. Everyone has their own cultural background. And when I come with an open question about what pronouns you prefer or how to identify it, a lot of the times I think I've encountered more resistance or something that has affected the report with my patients. Because when I try to come with an open view, they just come with assumptions against who I am, how I think, how I feel. Because this whole issue has been heavily politicized. So how do you navigate that? And this is for you. Yeah, no, that's a really great question. It's depending on the area where you are and especially the particular patients. I think I have two answers to that. One is to try to make it as neutral as possible, like what are your allergies? Okay, your chart says your pronouns are he, him. Is that accurate? The other is I do a little bit of profiling. If it's an older gentleman who presents as male and everything says male, he's got a male name, I'm probably not gonna ask him. So I do a little bit of assuming in those situations. I think there's a virtually limitless number of ways that you can offend somebody. You almost can't avoid them all. But you're a resident and I'll tell you this, if you offend somebody by doing the right thing, don't feel too bad about it. It's better than offending somebody by doing the wrong thing. You could offend someone, a patient, by asking do you do drugs? Yeah. And the, or sex, or any other questions that are considered to be taboo, but it's not taboo, you just, I just tell them I'm taking a medical history, I'm sorry it's not targeted toward you because I'm judging you, but it's documentation and I have to have the accurate information. And I leave it there. Thank you. I do a little bit of cheating because now with the medical records and the patients having access to their charts and being able to answer questions in our medical records, there's a specific question about that and it's right next to the gender assigned. They can choose like, count of their sex and then assign at birth and the gender they identify with and pronoun. And I look at that when I'm going to see a patient and if they already answered that question, I don't ask it again. And, you know, that has helped me a lot. Thank you. I think we have time for one last question. Thank you for, whoa. Thank you for an excellent panel, presentations and discussion. I have, I've had this happen a few times, I just wanted to see your general thoughts on it where I've seen a patient in the hospital and they have a pronoun and usually the chart's very confusing in the hospital because some people are using one pronoun for this patient and somebody's using another. Then you speak to the patient and you get the actual pronoun. And I recall then seeing the patient in my office and they have a family member with them and the family member is referring to them by a completely different pronoun from what the patient has previously told me they identify as. You know, in that situation, I ended up at one point asking the family member to get out and I said, you know, let me speak to you. And I asked the patient, like, what's going on? What is the pronoun and how do you identify, et cetera? And then the person just said, yeah, he just doesn't care. Like this person that was with them. But I didn't really know, there was no way for me to even like, does this person know how you identify, et cetera? But in, you know, and I've been in other panels where people have said, well, some patients, some people might use one pronoun in one setting and then in another setting, they're using a different pronoun. Just from, so from the physician's standpoint, how do you recommend navigating this area? It sounds like you did the perfect solution by asking the family member to step out and we're probably all very used to doing that, especially in thinking about pregnancy potential in our young adults. So I think we're hopefully all very comfortable in asking the, you know, I need some time alone with the person and asking them how they wanna be referred to in that situation. Because you're absolutely right, we don't want to risk putting that person at risk if they're in a vulnerable situation where their family's not supportive or another person of power. So that sounds like the perfect, perfect solution. Well, I wanna thank you all for being here and a special thanks to our fantastic speakers and our panel and have a good afternoon. Thank you.

epilepsy care

women's health

Florida healthcare

gender-affirming care

telehealth

neuro-rehabilitation

healthcare alliances