I'm excited to introduce our next speaker, Dr. Emily Johnson. She is Associate Professor of Neurology at Johns Hopkins. She has a variety of clinical research interests, including new onset epilepsy in older adults, as well as women of childbearing age, but more recently, she has brought attention to the challenge of equitable care for the LGBTQIA population with epilepsy, and she's going to share her experience with us today. Dr. Johnson. Thank you so much. It is such an honor to be asked to speak on this important topic. These are my disclosures. I get a small amount of money for consulting for EpiWatch, but I will not discuss seizure detection devices today. But my real disclosure is that I am not an expert in this topic, but that we need experts in this topic. I'm going to highlight some disparities that we're finding, and we're just beginning to talk about these disparities, but we need more work. We need experts. We need more people talking about this, and I will disclose that I cannot begin to speak for every patient, of course. I do talk about this a lot with my patients and with my friends and family, but every patient is different, so I don't presume to speak for all patients. So we're going to describe the burden of epilepsy in LGBTQ plus communities and identify relevant medication interactions between hormonal treatment and anti-seizure medications. We'll start with some terminology, talking about gender identity and gender-affirming treatment in general. Then we'll talk specifically about sexual orientation and gender identity in epilepsy. We'll talk about medication considerations. We'll talk about some inclusivity and social considerations. Then we'll finish by looking at the state of the states and current regulations for gender-affirming treatments. I like this little diagram. It really highlights that sex assigned at birth is different or can be different than your gender identity, which is different or can be different from your sexual or romantic attraction or lack thereof. And all of those can be the same or can be different from your gender expression or how you present yourself to the outside world. Transgender people have a discordance between the sex that they were assigned at birth, the biologic sex usually identified by the genitals, and by their internal sense of gender. And when this causes distress, this is referred to as dysphoria. Some terms transgender women are people who are assigned male at birth but identify as female. Transgender men were assigned female at birth but identify as male. Then cisgender refers to people whose sex assigned at birth is the same as their current gender identity. There are also intersex conditions, which are separate. And then many people, and this is becoming more and more discussed, many people identify as some other gender or non-binary, neither male nor female, both male or female, or gender fluid or gender expansive. And people who are non-binary can be transmasculine, transfeminine. We're now appreciating it as more of a spectrum. Some terminology and some acronyms. Every part of medicine is full of acronyms. SGM is now a term used by the NIH. SGM stands for sexual and gender minorities. TGD is sometimes used as an acronym for transgender and gender diverse individuals. NB, non-binary. And then LGBTQIA, we're probably more familiar with. This encompasses sexual orientation as well as transgender or asexual identities. About 0.6% of the U.S. population identifies as transgender. Estimates range from 0.3 to 0.9%. And that translates to between 1.5 to 2 million transgender people in the U.S. alone. So let's talk about some comorbidities and some concerns that are particularly important in our transgender and gender diverse patients. So this is a little surprising to me. Depression in the general population is about 10% at any given time, with about a 20% lifetime prevalence. That's doubled in people with epilepsy. So at any given time, 20% or thereabouts of our patients with epilepsy have depression. Sometimes higher, depending on the study you look at. In transgender people, over half, the majority, experience depression at any time. This is a new study just published this year in JAMA. This is a Danish population study looking at 6.6 million people, so population-based, and that included nearly 4,000 transgender individuals. And we're going to look at some standardized rates per 100,000 person-years. And many of these numbers are shocking to me. So transgender people reported 498 suicide attempts per 100,000 person-years. That's compared to 71 in non-transgender people. So the adjusted incident rate ratio, 7.7. Transgender individuals were 7.7 times higher to have a suicide attempt. Death by suicide, 3.5 times higher in transgender individuals. These are shocking numbers, 3.5 times higher. This was also very surprising to me. Non-suicide mortality was nearly double in transgender individuals compared to non-transgender individuals, giving us an all-cause mortality of double the mortality seen in non-transgender people. These are shocking numbers. Especially surprising was the non-suicide elevated mortality as well. Well, what can be done about that? What reduces suicidality? What reduces suicidal ideation? Gender-affirming care reduces depression, reduces suicidal ideation, suicidality, and reduces suicide attempts. So these are studies looking at transgender individuals who desired care. Those who had a delay in care, were not able to get the care, were used as the control group. So that's the one. Those who did get the care that they desired is the comparison group. So gender-affirming surgery had an over 50% reduction in suicide attempts and was associated with an over 50% reduction in suicidal ideation. Gender-affirming hormone therapy, so medication alone, was associated with a decreased odds of depression. So that was reduced by over 50% and was also associated with a decreased risk of suicidal ideation. So these treatments improve mental health. They decrease suicidality. What is gender-affirming treatment? So some people may choose to change the outward presentation of their gender only without medical treatment. Some people may choose to have feminizing or masculinizing hormones. We'll talk a little bit about that. Adolescents may have therapy with a GNRH, such as Lupron, to suppress biologic puberty or delay it for a few years, to suppress secondary sex characteristic development by a few years. People may also choose to have laser hair removal, voice therapy, surgery, which can be top surgery or can be bottom surgery. And people may get mental health treatment for depression and for mental health comorbidities. This is a summary published in JAMA, so not a fringe journal, of the standards of care for transgender and gender-diverse people. And the standards of care are that clinicians should assess and provide, if appropriate, should provide hormonal therapy for people when it's required, and that eligible adolescents should be offered hormonal suppression if it's indicated. So this is not, you know, there are standards of care that are published in JAMA. This is not something that's a question. What is the gender-affirming treatment? So typically, in adolescence, people can have the GNRH analog, as I mentioned, or DMPA, and that can be treated with estrogens, estrogen analogs, or testosterone, as appropriate. If people are starting gender-affirming treatment in adulthood, they can be treated with spironolactone, which is what we commonly use in the US, which is an antiandrogen, and that can be treated with oral transdermal estrogens or with testosterone, as desired. Shifting gears a little bit, let's talk specifically about people with epilepsy and about sexual orientation and gender identity in epilepsy. So this is data from the National Health Information Surveys from 2017 and from 2021. This was presented by Ernesto Gonzalez-Giraldo last year at AES. The NHIS is a nationally representative survey put out by the CDC every year, and some years they ask about epilepsy, not every year, and then they have started now to ask about sexual orientation, and just last year, they started asking about gender identity. And so we took data from this, and we showed that people with epilepsy were more likely to identify as LGBTQ+, compared to people without epilepsy. These numbers were a bit low. This was representative of US adults 18 and over who were head of household, so it might be a little lower than you might expect, but of people without epilepsy, 4% identified as LGBTQ or other, whereas people with epilepsy was 10%, so quite a bit higher. And this held true for every group that we looked at, so this was true for people who identified as gay or lesbian, as bisexual, something else. Interestingly, don't know. Even when we took out the don't know or declined, there was still a difference. But interestingly, people with epilepsy were less likely to decline to answer the question than were people without epilepsy. And after we adjusted for, I guess I missed that slide, after we adjusted for age as well as race and ethnicity, people with epilepsy were still more likely to identify as in the LGBTQ community. The reasons for this are not known, but need some investigation. Well, how does this affect people's care? Part of the NHIS is to ask how people's healthcare experiences are, if they are respected by their healthcare providers. So sadly, we're all here because we are interested in epilepsy, because we're passionate about epilepsy, and we know what a stigmatized community it is. So sadly, people with epilepsy were less likely to feel respected by their healthcare providers. So they were only 60% as likely to feel respected by their healthcare providers. How does this compare? Now we're moving to the general population, not necessarily with epilepsy. How does this compare to LGBTQ groups? So interestingly and encouragingly, in this survey, people who identified as gay or lesbian were actually more likely to feel respected by their healthcare providers. I hope that means that they found the right care, they have the right provider. People who were identified as bisexual or as something else were less likely to report being respected by their healthcare providers. Okay, so people with epilepsy are already at increased risk for a poor provider relationship. How are we doing with our gay and lesbian patients? So now we're comparing between people with epilepsy to those with epilepsy. So I said in our group without epilepsy, people who identified as gay or lesbian were slightly more likely to report being respected. But unfortunately, among people with epilepsy specifically, our gay and lesbian patients were less likely to feel respected by our healthcare providers. So we still have a lot of work to do to make our patients respected and to validate them. This is now data from the Behavioral Risk Factor Surveillance System. Interestingly, only one state questioned people about both epilepsy and gender identity. They did that from 2017 to 2019. That state was Florida, interestingly enough. And so this is data that Karina Tasiopoulos presented at the Canadian League Against Epilepsy earlier this year. And she was able to look at people who identified as transgender or gender diverse, and she compared people without versus with epilepsy. So interestingly, people without epilepsy was 0.6% identified as transgender or gender diverse, so exactly at the current estimates of the US population. So with epilepsy, 1.8%, three times higher. This was fascinating to us. And so people were more likely to identify as transgender or gender diverse if they had epilepsy. After adjusting for age, race, ethnicity, and sex, this relationship still held true. So this is not implying any kind of causality, but this was to say, is this association explained only by age or only by race or ethnicity? And it's not. We found after adjusting that there was still this relationship. So that's another area where we need more investigation. And this held true for each group that we could compare for the male-to-female, female-to-male, or gender non-conforming people. All had a higher proportion of people with epilepsy. All right, well, how does that affect people's health and their perceived health and their quality of life? So Karina was able to look at the likelihood of reporting poor mental health or limitations in the usual activities. So she looked specifically at people with epilepsy and then compared to people identifying as transgender or gender diverse to people who did not. Unfortunately, people with a transgender or gender diverse identity were three and a half times more likely to report poor mental health and two and a half times more likely to report limitations in their usual activities. So this is comparing people with epilepsy to people with epilepsy. All right, shifting gears to talk about medications. So this is a room full of epilepsy experts. I don't need to tell you that some of our medications are enzyme inducers. I will say that none of our studies have been specifically on gender-affirming treatment. All of what we know about estrogen and testosterone interactions come mostly from the contraception literature. So we have our typical drugs that you've seen before, where we have a handful that do not reduce our estrogens or do not reduce testosterone. So in general, a good principle is to preferentially use ASMs that do not affect estrogen or testosterone in our transgender or gender diverse patients who might be getting hormonal treatment. And if we have to use an enzyme inducer, we should discuss this with the provider who is providing gender-affirming care. We should monitor for the feminizing or masculinizing characteristics to see if the hormone needs to be adjusted. And I'll preemptively check a level of lamotrigine, of course, and then adjust the lamotrigine if needed, if someone's initiating estrogen. What has been the experience with the medical community? So historically, it's been very poor. Transgender identity has historically been classified as mentally disordered. In the DSM-IV, it was so-called gender identity disorder. My own institution, Johns Hopkins, didn't have a center for transgender health or anyone focused on transgender health specifically until 2017. 70% of gender diverse or transgender individuals have experienced discrimination in the health care settings. 70% have had that experience. And even more were reluctant to share their transgender status with their physician because they were afraid of being discriminated against by us, by people who should be caring for them. Many people will delay or put off getting necessary health care because of that concern and fear for discrimination. 50% of people, even in Philadelphia, reported being refused treatment due to their gender identity. And 50% said they've had to educate their health care provider just about what it means to be a transgender and transgender issues. What can we do? We can work on our physical environments. We can have welcoming signage. Welcoming signage goes a long way. We can make sure that there's a gender-neutral restroom available, or we'll have signage that individuals may use any restroom that they prefer. We should always use the appropriate pronouns and names for people. UCSF has a wonderful resource that I'll put up again later, but they have a staff training video on collecting pronouns and collecting preferred or chosen names. So they recommend giving all patients the opportunity to designate the preferred name at check-in, but not necessarily questioning everyone in the reception area about pronouns, as it can be a sensitive issue for some. The medical charts should have a way to update pronouns, and providers can confirm, are pronouns in the chart correct, or do they need to be updated? We should always use gender-neutral language for partners, and especially for sexual history. We should ask questions when we need to, but not because we're prurient or curious. I grew up in Minnesota, so I grew up very repressed, so it took me a while to get comfortable asking about the sexual history, but I like to preface it by saying, okay, now I'm thinking about childbearing potential, or in epilepsy, we often think about pregnancy, and we'll ask if that's a possibility. But we should never assume what kind of sex or sexual activity people have based on their presenting gender or based on their partner. So we should always use non-assuming language, and of course, we should use a patient's preferred or neutral terminology during a physical exam. For example, transgender men may prefer the term chest exam to breast exam. Although as epileptologists, I'm not sure why we're doing a breast exam at all, or a chest exam. But most importantly, we should listen, and we should learn from our patients, and we should have humility. Language is changing. I recently learned that actually the term non-binary is falling out of favor, and we should be saying gender-diverse, and so language is evolving, and we are kind of learning all the time, and everyone has their own preferences. So we should always be willing to be corrected and willing to change our language as a patient prefers. This is a hot topic. This is the past six years looking at anti-LGBTQ bills in U.S. state legislators. In 2018, there were 42 bills across all states that were introduced. This was updated halfway through 2023. We're now six months beyond that, but in 2023, as of June 6th, there had been over 400 bills introduced in state legislatures. Many of them were actually signed into law. This includes here in Florida, the bill commonly known as the Don't Say Gay Bill that prevents teachers in public schools from introducing or from talking about sexuality. Thinking back to the suicide rates and the suicide risk that I mentioned earlier, you can imagine how devastating it is for people in formative years not to even be able to be aware to have those conversations with their teachers. These states in red have some sort of legislation that regulates gender-affirming care in people up to age 18. The states in red have gender-affirming bans. The states in green have either no bans or have protections, and the other states are considering bans, the ones that are in the yellow color, and that's as of October 13th. Florida actually bans adults using Medicaid. Adults, these are people capable of making their own medical decisions, bans adults using Medicaid from using it for gender-affirming care. There's actually an injunction right now, so that ban has stayed. It's not taking effect, but it could be put into place at any time. In some states, such as Oklahoma, it's actually a felony for medical professionals to provide gender-affirming care, remember those suicide rates and those treatments, to provide gender-affirming care to people who are under 18. There's a lot of challenges in these states, and I don't have the answers. Is there a legal risk for providers who prescribe gender-affirming therapy, and how are they navigating that? Because of these very real risks, patients may not disclose their status to us as physicians. I think it's important for us to know and to be aware, especially if a patient is undergoing hormonal treatment, but patients may not be comfortable disclosing that to us. Is there a risk of documenting in the medical record? This should be HIPAA-protected, but I've had a number of federal employees who, if you question them about any recreational substances or medications that are not prescribed to them, some of them will say, yes, but please don't put that on my chart. I wonder if we're heading in that direction, where we are not able to document things in the chart. And if people are not able to get hormones, again, to get the hormones that are beneficial to them from regulated sources or from typical medical sources, they may turn to non-regulated sources. On the internet, you can find all kinds of supplements or Chase Berry and things that will give you, things that have estrogen properties or testosterone properties. So people will, if desperate, will turn to other sources. What's the most important thing we can do? Vote in our national and our local, in every election, to protect, you know, I know we all probably have different political views, but I hope as epilepsy providers, we are focused on the patients in front of us and focused on providing that best care to them. So I hope we will vote to protect these very vulnerable populations. The UCSF Transgender Center has a great website. They have a lot of guidelines for clinicians, a lot of primary care guidelines. They have current gender-affirming therapy regimens. Michigan Medicine has some tips as well. The Epilepsy Foundation has a legal fund for people who are denied care for their epilepsy. There was a wonderful webinar organized earlier this summer by the Epilepsy Foundation by Jenna who, where the Epilepsy Foundation said, yes, we can help provide counsel to people in these states if they're being denied care for their epilepsy because of their gender status. And then this is the standards of care that I mentioned, the summer, the nice summary was published earlier this year. So as providers and as researchers, we have to be aware of the needs of our diverse patients, including our sexual and gender minority patients. And really crucial to providing good care is that respect and that inclusiveness and doing better as physicians of establishing that relationship with all of our patients. So thank you very much. I'll stop there. Thank you.

LGBTQIA

epilepsy

gender-affirming treatments

healthcare disparities

transgender discrimination

intersectional research