The Expert Series: Lupus in the LGBTQ+ Communities
In this episode, we talk with Dr. Jillian Rose-Smith, vice president and chief equity officer at the Hospital for the Special Surgery, about lupus in the LGBTQ+ communities. We discuss what it means to have gender-affirming care, how to protect yourself from implicit bias in the healthcare space, and how to get the support you need from family and friends.
The following transcript is automatically generated and may contain typos or misspellings. Please listen to the episode for the most accurate language.
Welcome to The Expert Series brought to you by Lupus Foundation of America. Our health education team is here to bring you experts and lupus to discuss topics to help you live better. Thank you for tuning in to today's episode. My name is Alyssa and I'll be your host.
Today's guest is Dr. Jillian Rose-Smith. She is the Vice President and Chief equity officer as a Hospital for Special Surgery. She serves as a member of the HSS leadership team and is responsible for the execution of a comprehensive strategy to advance health equity at the Hospital for Special Surgery through a whole health approach, addressing physical, behavioral and social needs, in line with a hospital's mission to provide access to all and its commitment to reducing disparities of care for patients with musculoskeletal conditions.
Dr. Rose-Smith has had oversight over the Charla de lupus, Lupus Chat and LupusLine nationally recognized peer support and psycho education programs for people with lupus and their families, where her team reaches out to diverse populations to provide culturally tailored interventions. She also develops and implements hospital wide and external trainings on working with multicultural populations, and fostering an inclusive environment for diverse communities, including the LGBTQ+ community. Right. Thank you, Dr. Rose for being here with us today. I'm going to jump right into the first question. LGBTQ+ is a term that encompasses a lot of different identities. Does lupus affect different groups within the LGBTQ plus community differently?
Dr. Rose-Smith 1:53
Thank you so much for having me today. It's so important for me to be here and meaningful for me to be here. To have this conversation around the LGBTQIA+ community and lupus, I want to first off share that I'm speaking from the perspective of an expert in this field, who is not going to provide for you a medical perspective, but a real evidence-based perspective on why in medicine, we should be aware of this community, know what their needs are, and how do we best serve them, especially in the context of a complex illness, like lupus. LGBTQIA people really face many different disparities across the spectrum when it comes to health care, from being denied access to care, because of how they identify, as well as being misunderstood or, or not being understood within the context of their healthcare needs, by experts who provide care for lupus and other illnesses. And so this community continued, continues to be over-represented in disparities, as it relates to care outcomes, as it relates to access, as well as as it relates to understanding preventative treatment, and a whole slew of healthcare outcomes.
So when we talk about gender, right, in gender identity, we must understand where we're coming from, not because we're curious about how people identify in healthcare, but we're really interested in treating people in a way that allows us to provide them with the safety that's needed for optimal care, as well as the quality that's needed. So when we talk about terms like gender, right, and gender identity: so gender identity refers to a person's understanding of their gender, right? You know, usually gender is binary, male, female, right? And so when you ask someone about their gender identity, we're talking about a person's own feeling, right about their internal process of how they feel about who they are. It may not be expressed externally, or fall into the biological category of how they were identified at birth, which we call birth sex or biological sex, right?
People are born with male and female chromosomes. This does not necessarily dictate their gender or gender identity, right. And that's something that's commonly misunderstood. When we talk about populations who identify as transgender, the transgender term is used to describe someone who identifies with a gender that is different from what we call their biological sex.
And so, you know, terms and how people describe themselves are critically important, because someone could be born biologically male, but identify and present as what we traditionally would identify as female, right.
And so when we talk about lupus and lupus treatment, it's really no different in treating anyone else with lupus. You want to ensure that you are assessing for that patient, the whole person, what kinds of concerns they're having, what kinds of symptoms they're having, what's their symptom history, symptom picture what's happening, you know, kind of, in their, their, the entire picture of care for them, you look at the same labs to make this discernment, you know, to discern a diagnosis as well.
However, what we do advise our clinicians to do, for several different reasons is to use and to obtain a person's biological sex, their gender identity, to ensure that if they are, if they are medical considerations to discuss with this patient, that can impact either their lupus symptomology, or how you may treat them, given a diagnosis. That's the important thing that you want to discern. So for example, for every patient that comes through the hospital with a viable uterus, we asked about pregnancy, whether that person's gender apparent or gender expression is male or female. So a person could identify their gender as trans male, and have a gender expression that's, you know, traditionally masculine, we will still ask that person to share their gender identity as well as their sex at birth. And it will ask them for pregnancy tests to ensure that the treatment that we're going to provide, the counseling that we're going to provide for that person around whether it's a lupus medication that can cause sterility, and if they, if they have a future hope to become pregnant, that we're not interfering with that and that we're giving them the opportunity to weigh their options.
So, you know, my overall answer about lupus, and treatment and care: it really hinges on understanding as much as we can about our patients to administer our obligation to them around providing the highest quality and safest possible care to optimize their care outcomes. And a part of that picture is ensuring that we're assessing and asking about who they are, who they are. And that will lead us to ask questions about whether a person is on hormone therapy, whether a person is using testosterone, whether a person is moving forward with any gender-affirming surgeries, that can impact the symptomology of their illness, or can play a role in how their illness might be manifesting. And so those are the two important things to keep in mind.
We're asking these questions to help to inform our care, to help inform the diagnosis, and ultimately to help inform the treatment plan for our patients.
Okay, great. And I know you just touched on this just a little bit in that first answer. So is gender-affirming care compatible with lupus treatment? I guess, for example, can hormone therapy trigger lupus or calls a lupus flare.
Dr. Rose-Smith 9:04
You know, again, just the disclaimer that not speaking from a medical perspective. However, we have had patients, you know, who's moved forward with gender-affirming care, that has exacerbated their lupus. So I think, you know, two years ago, we presented with a patient at ACR who really talked about about his own lupus care, and how it was impacted by him moving forward with gender-affirming surgery. So, you know, one of the things that we really learned from our patients is helping them to feel comfortable in disclosing, you know, what kinds of other therapies you're on, you know, are you on gender-affirming hormone therapy, whether it's testosterone or estrogen, we asked about what kinds of therapies they are, what effects do these therapies have? And most importantly, are these is this permanent? Is it reversible? Is it possibly permanent? And so those are some of the things we like to ask patients: are they engage in gender-affirming therapy or surgery so that we can best understand, again, the picture, their own medical picture, and how we should be approaching that.
We have so for example, you know, one of the things we came across in our own practice is that we didn't have a way for when someone identify their gender identity as, as male, we didn't have a way for them, asking them about pregnancy, we didn't have a way around asking them about their menstrual cycle and period. So just because the person may identify as a transgender male doesn't mean that they stop having a period, or they don't have hopes of becoming pregnant, or, you know, some of the preventative assessment such as breast exams, and things like that are not needed. Right.
And so, we we do refer patients for preventative medicine all of all the time. And so we want to ensure that if you still have biological parts, that really represents, you know, your, your entire medical and biological picture that needs to be assessed, that, that we need to be making referrals, and that we need to understand whether your cycle is regular or not, or whether you're pregnant or not, you know, those things really help in the diagnosis and treatment of patients and for us to provide holistic care.
So it's not so much about, you know, what the person's choice is, or their inner feeling is about who they are, in terms of us kind of, you know, some some people would say, you know, that's kind of my business, right? When they don't understand why we ask some of the questions we ask. And it's important for providers to be aware and equipped with the answers to why we're asking the questions and how it can impact on care, how it can impact on patient safety, and how patients from the community can partner with their doctors to optimize their own desires, you know, whether it's, you know, having a child later on, but I'm getting on cellcept, and to really have that conversation for a person who identifies as trans male, right? And so really having those conversations and not taking it for granted and assuming what a patient preference is based on their gender identity.
Great, thank you so much for that answer. Now, what impact can anti-LGBTQIA bias in the community and in the health care have on the community for people with lupus?
Dr. Rose-Smith 13:01
Oh, man, you know, you this is one of the area's that continues to, you know, continues to rear its ugly head in care. You know, we're really charged with do no harm to our patients. But unfortunately, as we look at LGBTQIA+ youth, the research tells us that they're at increased risk for physical health problems and lack of, you know, informed care more than their, their non-LGBTQIA counterparts that they're to didn't report times more likely to attempt and be successful as suicide, that they're more likely to be homeless and have higher rates of violence and abuse, right. And they're almost, you know, 64%, more likely than non-LGBTQIA students to be teased and to be made fun at school because of their gender identity or their sexual orientation.
You know, research also tells us that people who identify as lesbian or bisexual women report poor overall physical health and higher rates of obesity and asthma and urinary tract infection and other exacerbation of chronic illnesses because they have experienced discrimination and bias within the context of the health care system. You know, patients also report being turned away, you know, from care by doctors, because they share how they identify, right. And so we struggle and we see deeper disparities for transgender women who have significantly higher prevalence of several different chronic illnesses, such as, you know, osteoporosis and poor health overall.
You know, and transgender people also report higher rates of abuse within the context of medical system. And although we've gotten a little better at this, when people transition, and they want to change their names or, you know, they want to legally assume the identity that most aligns with how they feel.
It's an issue, you know, they run into issues with insurance, health insurance coverage, right? It's important that if you're treating a person who may identify as male, and you're sending them for a breast exam, you know, when the insurance look at that it doesn't line up, right? If there's no other information. And so that's why across the board, it's important to ask for gender identity, sexual orientation, sex and birth information so that that can be part of the medical record. And so that you can identify why you're asking for some of the medical assessments or interventions that you're asking for, that can be very male or female specific, when that does not identify with someone's biological sex. Right. And so that's one thing that we see very pervasive in healthcare are the disparities in terms of health outcome across the board.
But more troubling, is the behaviors. You know, are the behaviors really, of clinicians and healthcare providers, our own implicit biases, or explicit racism or discrimination against populations who identify as LGBTQIA+.
And so part of what we've done at our institution, is to provide broad-based training, one on dignity and respect, right? No one really shows up to health care and say, Well, let me serve a side of racism with health care, right. And so there are entrenched biases that we possess that sometimes we don't even know that we harbor that can really spill over into the care that we provide for patients. And so we talk about those, we provide training to talk about how these biases might be at play, how we identify them. And we really look across the institution to engage in debiasing techniques.
The other thing that we've done is nationally, we've engaged in looking at what are some of the standards and communication and messages and socialization not only for our providers internally and our employees, now we can say externally to patients, that we care about you we're asking these questions, you're safe here and you're welcome here. So uh, you know, part of that, socialization for patients who have been harmed or discriminated against, or turned away or abused in medical settings, they are visible pictures on our walls of same gender loving couples, to welcome people, when we ask these questions, we tell people about why we're asking. And we're also we also have our health equity designation for the last eight years from our from the Human Rights Campaign, really identifying ourselves as a welcoming environment for LGBTQIA+ members. And I think these these things go a long way. When a patient open up your EMR, and it says, You're welcome here, we were asking questions about your birth sex, your gender identity, and your sexual orientation to better serve you to provide the highest quality of care for our patients. Please share your your gender pronouns with us your chosen pronouns, and then not only we're asking it, we use it. It's important that we use it, right. And so that's how we combat some of what we're seeing in health disparities for the LGBTQIA population. We need to have external socializers that identify us as a safe place, we need to be more welcoming and inviting. We need to ask appropriate questions and tell people why we're asking. But we also need to do the work with our team. So from the time someone hits our door, if we ask you, what's your chosen name and gender identity in our electronic systems, when you get to the door, I should be able to refer to you as your chosen name as your chosen pronoun. Or I should be able to ask that question in a comfortable way that makes the environment inviting for you. So dignity and respect goes a long way in starting at the front door. And that's how we start to combat some of these issues around health disparities is how we make the first impression with our patients that we're not here to alienate. We're not here to judge, we're here to provide the highest quality of care. And how do we do that? How do we accomplish that? We need to get to know who you are. And we need to invite all of you into our care spaces.
And I know that you mentioned some issues that the LGBTQIA+ community runs into, especially in health care. What are ways that family and friends can support members of the LGBTQIA plus community in their lupus journey? And what can institutions or healthcare organizations do?
Dr. Rose-Smith 20:43
Absolutely. You know, I think friends and family and loved ones are so important, because when people are so nervous, coming into a place where, you know, they may come in, and their gender expression is male, and they've been living their lives for 20 years as a man, and then you sit in the waiting room. And instead of someone saying, Hello, I'm looking for Jillian, someone is blurting out, Where's John is John here, and you're mortified. You know, having friends, family and loved ones to be able to sit with you, to encourage you, first of all, not to make a beeline and run out of there, because you're so embarrassed. Right? You know, to be able to provide that support. But they can also be they can also speak up for you. Right, they can also speak up for you, they can also identify some of the slights and the prejudice and the discrimination, when you can't speak up for yourself.
They also ensure that, you know, the care that you're receiving is equitable, they ensure that when there's a person to witness in the room, people are more likely to be in line with the care that each and every one of us deserves, right. And so that's one way family and friends can help. I also want to understand, you know, your preferred and chosen your your chosen name and your chosen pronoun. So if I'm in the room with a family member, and you know, this person is referring to me, as Jillian and not John, when my provider comes in, and we're talking about, oh, how can I help John? How can I help Jillian meets blah, blah, blah, the provider is likely to take a pause. Right. And so they help to emulate behaviors that are in line and affirming of the patient as well. But those are some of the ways that families can can be a support can really get educated. As it relates to institutions, one of the things our lupus patients told us, we were so proud of ourselves, we had just implemented the ask for gender identity, you know, chosen pronouns into our EMR. And this person said to us, I would rather you stumble over my name or stumble over my pronoun. But I really need you to understand how being transgender is related to my lupus care. I really need you to be well-versed in what questions to ask. When I ask a question about hormone therapy, and gender transition, I really need you to have some knowledge or have someone to go to to gain that knowledge.
And so there's a couple of things that we've done. We have a very real robust LGBTQIA+ committee, and we have our internal medicine doctors, and other physicians on that committee as well as nurses and people throughout the health care spectrum, who provide education within their various departments around LGBTQIA+ health. Any physician can request a personal conversation or a larger departmental meeting, which we've done throughout our rheumatology, in our orthopedic departments at our hospital, really talking about LGBTQIA+ health disparities, as well as health risk. We've had several leading and key national speakers come talk with us about safety and prevention and screenings and communication. And so, you know, one part is us asking and creating a welcoming environment and being able to respond to our patient with dignity and respect. The other part is identifying opportunities for screening for people who may identify as as male, but we need to ask that question about pregnancy tests or menstrual cycle, you know, or family planning, you know, So, really having in our EMR opportunities to take a good sexual history from that individual to ensure that we're covering all of our bases, in terms of behaviors that may impact care, or behaviors that we may need to educate and teach on, you know, for for the LGBTQIA population specifically. And so we have those cues that helps to trigger us in the EMR, about how we need to best assess our patients based on how they identify, and really to tailor care to them. So that we are providing the best opportunity for them to experience quality and safe care in our institution. Again, that cache of tools in the toolbox, really being able to go to your toolbox, because people may not see a patient who identify as trans every day, but they can go to their toolbox and say, Okay, this is what I need. And so we have built that toolbox for our physicians, so that they can go to it when needed when faced with a complex issue as it relates to the population and the illness that they're treating.
And so, you know, it's a multitude of things that have to come hand in hand together. First, it's honoring that everyone deserves dignity and respect, and taking steps to ensure that from the time the patient enters into our door, to the time that they meet with our rheumatologist that they feel respected and cared throughout, because that builds trust. And trust really is the conduit for optimizing care, especially with such an illness that's so complex as lupus. And so this really goes hand in hand for our patient, for our patient and our providers, in terms of what we can do as institution to enable our providers to have the best tools, but also what we can do in the environment to identify ourselves as welcoming spaces and safe spaces for the LGBTQIA population, but also encouraging folks to include their caregivers and loved ones because it creates that additional layer of accountability and safety for our patients.
Amazing. That is really good advice, especially appointments. And our final question for you is, what are some resources available to support lupus warriors from this community? And, of course, anything else that you might want to add?
Dr. Rose-Smith 27:41
Absolutely. You know, I love Fenway. They are our national and even international leaders in LGBTQIA+ health. There are so many different resources from classes to booklets that you can take into your care providers to various seminars on on cutting edge information related to a person's identity, but also what to look out for in healthcare, what to ask your physician how to prioritize. They have webinars on how to address discrimination and implicit bias within the context of care. And so I really love that Fenway website as a one-stop-shop for patients, because it's patient friendly, the information is credible, and it's often updated. So so we know that it's current, and it's evidence-based, my goodness, it's evidence-based. So I really, really love that resource.
I also, like some of the local organizations, I'll encourage anyone to check their local pride organizations, especially in healthcare, to look for a lot of what what I like to do with patients is to refer to support groups for patients and loved ones. And so some of our local pride organizations have the opportunities for patients to assess what's in the right fit for me in terms of how I identify what's being offered in my, my state, my city, my town. And so I encourage people to just look up their local pride organizations, which is very exciting to see the breadth and depth of information available to them.
And lastly, I'll share that, you know, if you are at an institution where you're receiving care, I know at our institution, part of the care that we provide for our lupus patients, is really recommending to them support and education opportunities, but also research specific opportunities for patients who want to be more involved. So asking your clinician, asking your social worker, asking your nurse, what's available to me within the context of caring for my lupus, and really understanding how some of these specific interventions, whether it's gender expression, gender-affirming surgery, may impact my lupus care, you can find out if there's specific studies happening around that, or their white papers related to that. So I would encourage people as well engage your providers, you know, sometimes they may not know themselves, but your social worker may know your nurse may know. And if they don't know people are doing more work in this area, and they're just inclined to find out and point you in the right direction.
Amazing. Thank you so much, Dr. Jillian Rose-Smith, for talking to us about lupus and the LGBTQ+ communities. We appreciate your time and expertise.
We invite those of you listening in to check out our past episodes The Expert Series by visiting lupus.org/theexpertseries, where you can also subscribe to get alerts when podcasts are released. If you have any lupus related questions, please reach out to our health education specialists by email lupus.org/healtheducator or by phone at 1-800-558-0121. And we'd love to hear from you. And if there's a topic you'd like to see covered, email us at firstname.lastname@example.org. Thank you, until next time...
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