Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:13

And Alex, who do we have with us today?

Alex 00:16

We are delighted to welcome Jace Flatt, who goes by “he” “they”, who did his PhD postdoc and early faculty work at UCSF. Eric and I remember him from that time and he’s now at the University of Nevada, Las Vegas, where he is associate professor in the department of social and behavioral health. Jace, welcome to the GeriPal Podcast.

Jace 00:37

Thank you so much, Alex and Eric, it’s nice to be here with you.

Alex 00:41

And we’re delighted to welcome Noelle Marie Javier, who goes by “she” “her” and is a geriatrician and palliative care doc professor, newly minted – congratulations – And a clinician educator at Mount Sinai in New York City. Noelle Marie, welcome to the GeriPal Podcast.

Noelle Marie 00:57

Hi, everyone. Happy pride and thanks for the invitation, Alex and E. And great to meet Jace on here.

Eric 01:04

So we’re going to be talking about transgender health in older adults and those with serious illness. But before we go into that topic, who has a song request for Alex?

Noelle Marie 01:15

I do.

Eric 01:16

Noelle Marie, what song do you have?

Noelle Marie 01:19

Cyndi Lauper’s True Colors.

Eric 01:21

Why’d you choose this song?

Noelle Marie 01:24

I think it really speaks a lot to my own personal journey and I’m pretty sure a lot of trans and gender diverse individuals also resonate with and it really speaks about our transition, celebrating our authentic selves, how society views us and how we view ourselves when we stand in front of a mirror.

Eric 01:45

Wonderful. Thanks for picking that song. A little Cyndi Lauper. Alex.

Alex 01:49

Little Cyndi Lauper. If you’re listening on the audio only podcast, you get my son Kai on guitar. If you’re watching on YouTube, you get me. Here’s a little bit.

Alex 02:10

(singing)

Eric 03:08

Thank you.

Alex 03:10

Great song request, Noelle Marie. Thank you so much.

Eric 03:14

Noelle Marie, can I ask because you mentioned your journey and the importance of that, how did you get interested in this topic and can you tell us a little bit about your journey?

Noelle Marie 03:23

Would that be okay, yes, that’s totally fine. And I’m happy to share my story. It all dates back to my time in the Philippines, where I grew up and was born and raised. And by the age of five years old, I had already noticed that there was a discordance between how I was assigned at birth in terms of anatomy and how I identified. However, I didn’t really have the vocabulary at the time. And I also lived in a society that was very Catholic, that was very machismo, so to speak. And so I think that my growth and discovery of celebrating who I am as a woman of trans experience didn’t really happen until when I came to New York City.

This is like, back in 2013, and I joined the faculty at the Icahn School of Medicine at Mount Sinai. And I think a big part of that journey was just having that right time, that right moment, with the right network and support groups of individuals, including my family, to really lift me up and allow me to celebrate my authentic self. And also of note, Eric and Alex. My transition was very public at Sinai, and in a way, I became like a poster child for living my truth in terms of being trans, having lived and embracing different intersectional identities, being an immigrant woman of trans experience, identifying as a straight woman and as a professional.

Eric 04:53

How is it public? Can you tell me about that?

Noelle Marie 04:57

Yeah. So when I joined Sinai In 2013, I was in a different form at that time. And so when I had decided to socially, medically, and surgically transition, I had to really sit down with members of the department and really did a lot of in services. And a big part of that was sharing my personal story, because I truly believe that for people to be able to understand who I am as an individual, that there’s no better way to do it than to showcase and role model it and do a lot of teaching.

And I remember I was actually featured at the time for, like, the Pride celebration up at Sinai. They had this huge poster that was literally posted on top of one of the buildings, and people could really see it. It was also the time that in 2015, that people who were trans and famous really put being trans on the map at that time, too. So it coincided with that.

Eric 05:59

Thank you.

Alex 06:00

And there are, like, positive and negative connotations to the word poster child. And it sounds like you were literally the post on the poster. Is that right?

Noelle Marie 06:08

Literally, yeah.

Alex 06:10

I wonder how you feel about that. And also just to acknowledge. Thank you for the gift of sharing your experience with everybody on this podcast today.

Noelle Marie 06:17

Thank you so much for that question. Alex. And I’m also curious to hear what Jace has to say about this. But I think that it was a very orchestrated and intentional decision on my part to showcase myself, because I felt like we needed representation. And we also need it. And not just representation, but also positive representation. To note that I am an individual who goes through this world. I face a lot of different stressors and challenges similar to other individuals, but I also have my own unique experiences. I took it with a lot of responsibility and a lot of seriousness that I carry with me.

The wonderful thing about that journey, especially in the beginning, was that people would come up to me and they would say great things like your stories, inspirational. And this really allowed, I think, other people to celebrate themselves and the families, family members who are going through the same type of journey.

Eric 07:17

Jace, how did you get interested in this, this topic?

Jace 07:21

So, as Alex had mentioned, right. I started my career in San Francisco and a lot of my training, I focus a lot on dementia, thinking about both in terms of risk, but how people can get care. And so as I was launching my research career in San Francisco, I specifically wanted to better understand being a gay person and non binary one. It was personal to me, but also right. Knowing that the community is really underrepresented in sort of our knowledge, what we do, how we provide care that’s truly inclusive and welcoming. And so it was some pioneers, really, that I met in San Francisco.

I think of Andrea Horn, Felicia Flames, several of them. I was going out into the community and just actually I spent like an hour and a half in people’s homes learning about their lived experience, their aging, health needs and challenges and resilience, you name it, and it changed my life and I could bring it to today. I’m constantly learning. One of my really good friends is an 80 year old transgender woman that was at the Stonewall riots. Right. Her name’s Judy Bowenweiner. And so, just like all those experiences, being involved has helped me to learn. And I think one piece that I really acknowledge is that you meet one transgender person, you’ve only met one transgender better person. No experiences are exactly the same, both in how they choose to live authentically, but also their story and how they’ve navigated that journey. And so it’s. It’s just amazing. And I’m just so grateful to get to do some of the work that I do.

Alex 09:20

Thank you, Jace. And. And I think we should speak to the moment. Well, one, it’s Pride Month, which is great. And. And the Stonewall riots were an integral part of the History of Pride. I wonder if you might just briefly, for our listeners, review what that was.

Jace 09:39

Yeah. So the Stonewall riots are really a pivotal moment in LGBTQ rights. It is a reason that we celebrate Pride in June, really to honor the fighting across our country against the police brutality that all LGBTQ+ people were experiencing, sort of the rating of bars and LGBTQ plus spaces. But something to really note is that a major reason for the riots is because of two brave transgender women of color. So Sylvia Rivera and Martha P. Johnson, who, in 1969, really helped to leave the lead this movement that happened right in New York City, but we also know it was happening in other cities. San Francisco, Los Angeles, you name it. And so that’s why we celebrate Pride. And many people don’t realize that we would not be where we are today with many of the rights and privileges that we have if it wasn’t for many of the brave transgender community members who fought for us.

Noelle Marie 10:51

And just to add to that, in a minor edit Jace, it was Marsha P. Johnson, actually.

Jace 10:56

Oh, did I say it wrong? Sorry, Martha.

Alex 10:58

It’s okay.

Jace 10:59

Oh, Marcia. Yes. Marcia. Yeah, Marcia.

Noelle Marie 11:02

And so they are women of color, as you had noted. And again, celebrating intersectional identities. And this happened on June 28, 1969, when the police were pretty much doing a raid, different raids. This was the lead up. You know, there were many raids that had happened before, and this was sort of like the culmination when the LGBTQI plus individuals really banded together and felt that they had to raise their voices and resist the protest because it was in fact, really hostility and brutality that they were experiencing at that time.

Eric 11:38

And for our listeners, is it okay if I take a brief step back? Because we’re using these terms, like transgender, non, binary. I see in the literature, some people, like, group them together. Transgender and gender expansive, or transgender and gender diverse, or transgender or non binary. What should I be using on this podcast? Can we define what those are?

Noelle Marie 12:03

So there’s many terminologies, obviously, trans. Transgender and trans is the shorthand for that. And then we use gender diverse or gender expansive. It’s just, you know, these are umbrella terms to really look at gender identities, expressions in a spectrum, because it’s not fixed and there’s some fluidity, and there’s a dynamic to this that is unique to each individual. I think we do need to define the difference between sexual orientation and gender identity as part of the vocabulary. And also assigned sex at birth, because I think that’s a really, really important concept. And even the terms gender and Sex are used interchangeably, and they are totally different. Just going back to the basics, sex is what you’re assigned at birth based on your anatomy, based on your chromosomes, based on your hormones.

So this is the biological nomenclature around who you are as an individual when you’re born. And then gender and gender identity, it’s more of a social construct, but it goes beyond that because it really pertains to the internal sense of the individual identifying as being a man, a woman, which is the binary. And then there’s the non binary, which means that you don’t necessarily fit into one particular box and you’re somewhere in the middle or somewhere and maybe both or neither. Right? So that’s the non binary, the non conforming, the queer, you know, terminology, you know, put into that. But I also really think that we also need to note that in the sex assigned sex at birth or asap, that there’s also a cohort of individuals that identify as intersex.

So these are individuals and we shouldn’t forget them because they’re always kind of like neglected to be put lumped into the lgbtq and then they just were added to the plus. But these are individuals with unique lived experiences that are born with differences in sexual development from chromosomal variations and so forth. And, you know, we’re trying to stay away from the pathology, pathologization of intersex people as a disordered, you know, in that sense. Sexual orientation, on the other hand, pertains to a person’s behavioral, relational, romantic, sexual affection, attraction, or practice with different gender, different genders and gender identities.

So a person who might say that they are straight or heterosexual, asexual or bisexual means that it pertains to their, the partners that they’re sexually attracted, romantically attracted to, or relationally attracted to, as opposed to trans. Transgender means that there is a discordance between your assigned sex at birth and how you perceive yourself as an individual. So this discordance is called transgender. It was actually taken from chemistry with CIS and trans meaning on the sides of the molecule.

And then CIS pertains to individuals whose gender identity and assigned sex at birth are congruent. So if you are a male identifying person and you have a genitalia or chromosomes XY of a male, and you identify as a male, then that is cis. Whereas if there is a discordance, then there then you’re considered trans. So if I put myself as an example, I was assigned male at birth, but I never identified as male, you know, then and ever. And so the discordance between how I am identifying and how I was assigned at birth puts me in this category of being trans or person whose background is trans.

Eric 16:09

And can I ask, gender identity and gender expression, can you describe the difference? Is there a difference?

Noelle Marie 16:17

Yes. So gender expression. And of note, these concepts are not mutually exclusive. There is actually a Venn diagram that, that looks at the overlapping and intersecting dimensions of all of these. Gender expression is your physical outward manifestation of how you express your gender identity. And this could be reflect or manifested in terms of your mannerisms, the way that you speak, the way that you carry yourself, the way that you. You dress. So that’s how. Just how you. You present your. Your gender. In that sense, it does not necessarily mean that, let’s say a person who is feminine appearing identifies as a female.

Right? That person might be a straight man who likes to, you know, be expressive in feminine ways. So a good example would be our drag performers. Our drag. Some of our drag performers are cisgender, heterosexual or heterosexual or even members of the LGBTQ I plus. And the way that they express themselves is to drag, which is, you know, tapping into the feminine form, which is just an artistic expression of who they are. But it’s not. Doesn’t define who they are unless you specifically ask them.

Eric 17:41

One last question. I’ll ask you this. Jay says, I also hear the topic of gender affirming care. What does that encompass?

Jace 17:49

Yeah, so this is care that aligns with, right, A person’s gender identity. Typically, we think about it for transgender people, right, of ensuring that they’re getting care that really aligns with their, their gender, how they identify, giving them care that maybe is, you know, related to germ, gender affirming hormone therapies. Or it can be related, right, to anatomy. It can also be about just like honoring them of who they are and giving them care. Right. They may need care that’s related to their anatomy, but, you know, still they identify with the gender that they, you know, as they express it and identify. So that’s a piece of it.

But I think something I wanted to add to before, and I think, Noelle Marie, you probably have some more to add around gender affirming care. But I think we need to acknowledge with the language, too, that it’s constantly evolving. And so that is something that what I always recommend is how I might define for myself as a non binary person may not be how another non binary person identifies. That may not resonate with them. And then there are language. For instance, our indigenous communities, such as some of our indigenous communities use the Term two spirit, to identify their sexual orientation and also sometimes their gender identity. And that’s really a sacred term that we should honor as well as for many older transgender people.

And I often use transgender because that’s the language that is more affirming broadly for the community. But I have my good friend that I mentioned, right? She actually uses the term transsexual, and that was language that was used when she was coming to terms with her identity, and that’s what was used, but it is an outdated term. So what I always recommend, right, it can be seen as stigmatizing, but I use language that my community members use. So if I’m talking with her, I might use the word transsexual. But if I was talking, like on a stage or today on the podcast, right. I am going to use more like transgender as the language because it’s more affirming.

And that’s sort of where the community more broadly says we use this language. And then for intersex people, it’s an incredibly diverse community. Some of them identify as part of the LGBTQ umbrella and some don’t. But it’s also important to note that it is very common. They say it’s as common as red hair and can represent about 2% of the population. And so I actually did one of the first studies in the US with intersex adults. And so it was something I launched when I was in San Francisco because I made a really bad assumption. I was recruiting LGBTQ people and thought that I had recruited my first older transgender woman. And in fact, she was an intersex woman. And it was something not even on my radar. And I had to do a lot of work around learning, but also seeing the challenges that the community faces are really important. So I wanted to add that I.

Noelle Marie 21:18

Wanted to piggyback on that as well, if I may, because that’s what’s a really important point, Jace, that you made. And this is for all of us, that when we’re going into this space of providing inclusive and affirming care, it really starts out with humility, because there’s a lot to learn. And people, you know, they teach us so many things about their lived experiences and what their unique needs are. So humility is so incredibly important. And so we really need to stay away from making assumptions and try to leave them as hard as it can get, because we all have our own implicit biases as much as we all have and carry that.

We really need to just be open minded about it. And then the sad thing about all of this, too, is that I think people view being born trans as a form of ideology, you know, with a connotation that, you know, that there is some political or economic gain in terms of this. And this is not an idiot. This is not something that I just woke up one day and I realized, you know, that I am a woman. No, this is. I was as early as four or five years old, I had already known. And there’s a level of constancy in terms of how people celebrate their authentic self. Some people might take a little bit of time because we all have different roadmaps and we all have different transition points, and we need to respect where they’re at.

But this is not an ideology that we’re just thinking for political or economic gain. This is who we are as individuals. To the point, Jace, that you mentioned about outdated terms, I just wanted to also just add that in our older adult population, terms like queer and transsexual are being reclaimed. And these were very derogatory terms back in the day, because even if just dissecting the term transsexual, it almost makes that person objectified in that way and focuses more on the sex organs, or that this is a sex object as opposed to really the person behind it. Of course, there’s also the use that people who have undergone affirming surgeries, let’s say, do identify themselves as transsexual and so forth. So the terms are. Even though they’re outdated, some people do reclaim it. And this point, you just need to know what term to use based on the individual’s preference of how they want to be referred to and what younger.

Jace 23:49

Generations are using language that, you know, there’s terms I have never heard of. Right. And so. And I’m trying to. That part that you brought up around humility. Right. It’s like, it’s my job to learn what that means. It is not their job to teach me what. What the term means. Right. And it’s my job also to honor and use that language. So that’s another piece to know.

Noelle Marie 24:15

Yeah. Although I will say, and this is. And this is a good conversation, is that just because we are members of the LGBTQI+ community does not make us an expert. Right. We are all constantly learning. And even, like, for. For you, both Alex and Eric, even if you don’t do this type of work or you end up doing this type of work and you do some training, some certificates, there’s a lot of certificate, you know, training that you can actually do, particularly with the World Professional association for Transgender health, which is like the mothership for transgender medicine. Even if you do training in that space, it does not make us, any of us an expert. There’s always. It’s a moving target.

Eric 25:00

Yeah.

Noelle Marie 25:01

So even that’s why I hate using the word competency, cultural competency, because you can never be competent in one particular, you know, domain or sphere. It’s always constantly evolving, and that is applicable not just in transgender medicine, but really in medicine at large. You. It’s all constantly evolving. Right. Literature is always there, so.

Eric 25:21

Yeah, yeah. And also kind of highlights, you know, part of what we try to do in geriatrics and palliative care is really individualize how we care for individual, like, the people in front of us, the patients, the caregivers, their family members, their friends. And I feel like a lot of this is really, you know, moving away from another podcast we did is industrialization of healthcare and really focusing on the individual that’s in front of you.

Noelle Marie 25:47

That’s absolutely correct, Erin. It’s individualized care for the inclusive and affirming care. And just like what Jason said, when you say affirming care, affirming the person’s sense of well being, you’re affirming the person’s lived experience. You’re affirming the person’s authentic self, because, remember, if there is discordance between how you were born and how you were identified, there’s a lot of internal conflict, mentally, internally, and then you also have outright discrimination that. That feeds into and worsens whatever you’re experiencing emotionally, spiritually, and mentally. So you do need to have this affirming care, that, number one, you see the person in front of you, you recognize who they are, you’re willing to help in whatever way, shape, or form, and you’re humble enough to really learn from them so that you can provide them the best.

Eric 26:39

So can I ask, because we’re. We’re talking about this too now, is what do we know about, you know, these life experiences that trans non binary individuals have been put through? What does that mean for dealing with chronic conditions and syndromes of aging, their health, does it have an impact? What do we know about that?

Noelle Marie 27:00

A lot. Jason, want to take the first stab at this?

Jace 27:04

Sure. Yeah. So. Right. The one thing we need to acknowledge for the transgender community, given the brutality and violence, many transgender people don’t get to live even into their 50s. So those that we do learn from, I say, I think often have unique circumstances that have allowed them to survive, many of them able to thrive. But we do see much I would say much like we see in other health disparity populations, we see accelerated aging in the transgender community. And so I actually learned this when I was at UCSF studying with you all in geriatrics. Right.

But often, if we look at a transgender person, maybe that’s age 50, they actually might look like someone in their 70s. Right. With in terms of their function, in terms of abilities, you know, they may have mobility challenges, they may have cognitive challenges developing, and they may be navigating chronic conditions that we would expect to see in someone much older. So a lot of the problem is we have not been doing great historically in understanding the needs of the community. Most studies did not ask gender identity. Even some of our high marks gold standards, like the Health and Retirement Study, I don’t believe still has gender identity in there.

They added sexual orientation. But there have been some studies showing higher rates of chronic conditions. In my area of work, something that’s been really concerning for me is the higher rates of dementia. And so there’s one study that used Medicare beneficiary data, and when they look at diagnoses for transgender men and women compared to cisgender men and women, we see around one in five have a diagnosis of dementia in the medical record for the transgender community compared to around, like, 1 in 7, 1 in 8 versus gender people.

Eric 29:17

Why do you think that is? Is that because they have higher rates of chronic conditions like diabetes, coronary disease, tobacco use, things like that, or is there something else that’s going on?

Jace 29:27

I mean, so we don’t have a lot of great longitudinal research to explain this. So where I would put it is stress.

Eric 29:36

Yeah.

Jace 29:36

We see higher rates of mental health challenges that I think are due to overcoming adversity. We see high rates of ptsd, depression, some of these challenges. And as I’ve said, all of this stress is a path to accelerated aging. Right.

Noelle Marie 29:53

Yeah.

Jace 29:54

And so that’s where we haven’t been able to prove it per se, because especially right now, they won’t even fund studies with transgender people at a. You know, that will really.

Eric 30:05

We’ll get to that. I want to make sure we saved some time for that. But they also. There’s higher rates.

Alex 30:09

Right.

Eric 30:09

Of isolation and loneliness, which we’re learning is. Has increased risk for mortality and morbidity.

Jace 30:17

Absolutely. Yeah. So all the environment. Right. If we think of discrimination, how people are treated by their biological family.

Eric 30:26

And I know you’ve written about this. Caregivers too. Right.

Jace 30:29

For a long caregiver challenges and not, you know, having to go into spaces that are heavily like hetero and cis normative in terms of how they provide services, how they navigate relationships. So it’s a lot of, I would say our, our aging field is very behind in terms of thinking about true inclusion.

Eric 30:55

Can I ask you that last part, when you’re saying that, are you thinking about like these lunch, these long term care, assisted living, nursing homes, hospice agencies, all of these healthcare industrial complexes, Is that what you’re thinking about?

Jace 31:11

Yeah, I’m thinking, I mean, it’s across the board. So it’s like thinking of like having to go to an adult day program, having to go into a long term care facility where many people, many transgender people have tried to say, for instance, they can no longer live independently and they will go to long term care facilities and they will tell them, sorry, we can’t take you because you’re transgender. Right. This is very common. We don’t know how to navigate or it’s a religious or faith based long term care setting. And they view it as like your being violates our, you know, guy, whatever, our principal. And so you would not be a good fit here. So it’s overt discrimination. Right. Is what many transgender people experience as they age.

Noelle Marie 32:03

And actually, just to piggyback off of that, because you mentioned accelerated aging, there’s another construct called allostatic load, which is station of chronic burdens and stressors that a lot of the older LGBTQI plus individuals, particularly trans individuals, have to go through. And even Elon Mayer, who’s a famous American psychoepidemiologist, created this minority stress theory that the general stressors that people face simply by existing as human beings, albeit education, access to health care, employment, has that cumulative effect with the minority stressors that an individual has to face vis a vis internalized transphobia, internalized homophobia. All of these things that add to the emotional despair and burden.

And when this happens, a lot of the individuals do develop. You know, you increase your cortisol levels, right? When you increase your cortisol levels, what will happen? It will overload your cardiovascular immune system. So there’s greater risk for cardiovascular disease, disability, cancer. And the most worrisome thing about this, and this is really sobering data, was that in 2015, the US TRANS survey indicated that the lifetime prevalence of LGBT of trans individuals attempting suicide was about 41% compared to the general population, which was under 5%. Now to the topic about isolation. And despite that, I, because I also don’t want us to focus on the, the not so rosy picture because there’s a lot of really amazing, you know, attributes and traits that are trans older adults, particularly resilience and crisis competency and robustness.

The 2022 U.S. trans survey just actually came out not too long ago. It was just last week that I was flagged that the official paper came out. And what they actually found was that in comparison to the younger generation, our millennials and Gen Z’s and Gen Xs, those who are in the baby boomer range and in the silent generation, and they actually have less prevalence of depression, isolation and loneliness only because I think part of it is that they’ve already established some form of network. They’ve been through so much that historical milestones that were considered stigmatizing were then fueled into something positive for them.

That’s why we see this during the HIV AIDS epidemic, which is actually a very good example of accelerated aging. Right? When you have, when you exist simply for being you, and then on top of that you have HIV AIDS as a diagnosis or substance use or what have diabetes, all of these will accelerate your aging. So much so that phenotypically and physiologically you are going to be comparable to those who are much older, even though, you know, logically you’re not.

Eric 35:02

So I wonder if we could talk about, like, what can we do is maybe in different levels, both starting off with clinicians and maybe we can move into institutions and then society at large to improve the care of trans and non binary individuals. Let’s start off with clinicians. What are the things that the listeners to this podcast can do?

Noelle Marie 35:27

So I can take this, this one, and then maybe Jason can take the more institution larger. But you know, the clinical piece, I think it starts out with collecting sexual orientation, gender identity in your databases. So in your electronic health records, I think it’s really important to have that and include a question about pronouns and assigned sex at birth, because that’s the only way for us to really see the individual for who they are. But also giving an option for an opt out, because some people are not going to be comfortable disclosing their assigned sex at birth or their gender identity and they may not feel safe, right, because of that.

So we need to have those options, but at least the option to opt out is there and the option to disclose is also there. In fact, there’s a lot of studies that support that disclosure actually provides a lot of satisfaction for our trans individuals because then they get to be really seen. The other thing is that we can modify our environments, our practice settings, making sure that we have visible indicators of acceptance in inclusion, maybe have A rainbow flag or a trans flag, some paraphernalia in the clinics to say that we’re inclusive here. If we have representation from employees who celebrate their authentic selves and are part of the front desk, or our medical assistants and nurses and whatnot, those are really good opportunities to provide inclusive and affirming care.

Making sure. So this is a hot topic, right? The bathroom issue. So making sure that we have, you know, gender neutral bathrooms, maybe our single space bathrooms, that’s all inclusive for everyone, would be an opportunity as well to make sure that people feel safe. We need to have policy statements in place that say that we accept everyone here. We don’t have any, no threshold for any type of discrimination that’s occurring here. I think even that is such a powerful tool when you introduce yourself, introduce yourself and your pronouns. That’s a way. Or maybe try to put like a pin, a rainbow pin, or something that is visible that people can actually see.

Oh, this person seems like they are inclusive for somebody like me, for instance. And then they might be able to disclose. And then the other thing here is two more, just two more bits is when you do sometimes to break the ice, it’s very difficult to open that conversation about lived experiences. But I really love Harvey Max Chochinov’s dignity question. Right. What do I need to know about you as a person to give you the best care possible? I mean, this is very intrinsic to the core of the work that we do in hospice and care. And that will open the floodgates, hopefully.

Eric 38:11

So open ended. It’s not just the yes, no, it’s just so I love that line.

Noelle Marie 38:16

But also know that the individual might not be comfortable at the start. You need to build therapeutic alliance. That’s okay. And you know, it will take time because remember, these individuals have experienced a lifetime of discrimination. So for them to come up to you and then figure you out if you’re inclusive or not, it will take some time.

Eric 38:35

And then I got another question for you, Noelle Marie, is that we’re seeing more patients who transitioned as in their younger ages in our geriatrics practices. They may be on hormone therapy, they may have had transition surgery. Are there practical tips there that you can give us thinking about this, especially as we deal with polypharmacy, maybe challenges with, for some of them, blood pressure if they’re spiralactone. Any tips around that?

Noelle Marie 39:04

Yes, so a lot of tips. One is again to demystify that it’s an all in one encompassing journey. They are not a monolith. Right. We are not a Monolith. We need to. I think we, if we start with that because that’s already like a big plus. And then the other thing is really partnering with your patient or your clients in terms of. Because a lot of them also know they’ve had some experiences with prior health care systems and they might know a little bit. So even partnering with that, making sure that you have resources that are available to partner with folks who are experts, let’s say in hormone therapy, some of our endocrinologists, some of our primary care physicians, they might come to you, let’s say, for a geriatric consultation and memory loss. Right.

And you recognize that they’re on hormone replacement therapy and you don’t know what to do with this, I think being. And then if, let’s say they plan to switch to you as their primary care provider, then there are a few steps that you can take. One is to seek additional training because the standards of care from wpath, which literally outlines how you would manage hormones, is there. It’s like this one big book that you can access.

Eric 40:20

Do they have standards for older adults yet or is it.

Noelle Marie 40:23

That’s interesting. That’s a great question, Eric, because what I know is that the content around aging is still lacking. There’s still a lot of gaps as far as literature is concerned. And I know you’re probably going to ask about hormone related therapy at the end of life and how you would navigate that, because obviously there’s polypharmacy. As you had said, HRT does not come without risk. People do develop venous thrombosis and it could potentially exacerbate cancers of some types. The answer to this is that there’s no great data that we have.

This is still part of the gap that we need to do collectively as a, as a healthcare organization. I think that individualizing care is really important when you’re dealing with HRT and then finding experts that you can partner with the outset who have had training, certifications and long standing practices around HRT is the best way to go. Because a lot of the times we feel so ambivalent about, okay, how do I dose this and whatnot. And if you’re in that space, that’s completely fine. You’re still in the learning process. However, there are people who have done the work before you, whom you can tap into as well.

Eric 41:38

Jason, I got to ask you, it sounds like we need a lot more research.

Jace 41:42

We absolutely.

Eric 41:44

I mean, it sounds like there is a, currently a national environment right now that is not funding or defunding this type of research. Is that right?

Jace 41:55

Absolutely. Yeah. I’ve lost, what, three of my NIH grants because of, you know, including transgender people is the reason. I also lost a Department of Defense grant with LGBTQ plus veterans that was going to be funded. But actually, yesterday a judge heard our case, so there’s some. Hopefully, some progress. I’m sure there’s gonna be appeals, but right now he’s. The judge said it’s unlawful that they were terminating grants on the basis of either race ethnicity or because they included LGBTQ people. So we’ll see what happens with that. But, yeah, we need research. It’s the right. As we know. That’s how we understand best practices. That’s how we understand if an innovative treatment, you know, works compared to kind of the standard care. Like, if we can’t have research funded to do that work, how are we going to know what is truly beneficial to, you know, our broader communities? Not just transgender people, all people.

Alex 42:59

Yeah.

Jace 43:00

Right.

Alex 43:00

Jay, Somebody just say it’s devastating, horrifying. You know, I read about you in the news when this happened. It was in multiple media outlets. And thank you for speaking out about your experiences. And I wonder, given that you’ve had many grants canceled, if you could choose one to describe. Like, this was so incredible. I’m sure they were all incredibly important, but we’re running out of time. If you could give an example to our listeners of. Here’s one that, oh, I just invested so much, and it’s so important.

Jace 43:31

Yeah. So one was this high mark for our career. Right. It’s an R01. And so it was one of the first studies to really think about who are caregivers and how do we truly measure who a caregiver is for the LGBTQ community and also their health needs, and some ways of really moving forward measurement of the caregiving experience in such a diverse kind of group. So that one was like a three and a half million dollar grant that was canceled. Not even able to finish year two. So. But hopefully we get it back. But, yeah.

Eric 44:13

And, Jason, my last question for you, because I want to be respectful of the time. You’ve done a lot of work around caregivers in the LGBT plus population and trans population. Any practical tips there of what we should be doing and how should we better care for them?

Jace 44:30

I mean, it’s similar to the recommendations we’ve had on individualized care. Right. It is so diverse. So you meet one caregiver, you’ve met one caregiver. Right. And understand it could be a caregiver that’s caring from a distance. It could be a spouse or partner, but also something really unique. And I think we’ve talked about it as many people have chosen their own support systems. So we’re actually finding care circles, right? Multiple people that are taking on this role because there’s not a primary caregiver. And so thinking about that, if a patient comes to you and they bring three of their friends, there might be a reason why. These are their. This is their care circle, and they want them to be there. And so being open to that and really meeting people where they’re at.

Eric 45:21

Yeah, there’s so much we could talk about, more about this, including the importance of things like advanced directives, durable power, attorney paperwork. I want to thank both of you for being this podcast. Also a shout out. We did do another LGBT Care for Older Adults in Serious Illness Population with Carrie Kendrian and Angela Primbos. We’ll have links to that on our show Notes. But before we end, Alex, a little bit more Cyndi Lauper.

Speaker 5 45:59

Show me a smile then don’t be unhappy. Can’t remember I remember when I last saw you laughing? This world makes you crazy? And you’ve taken all that you can bear? You call me up? Cause you know I’ll be there? And I’ll see your true colors shining through? I’ll see your true colors? And then that’s why I love you? So don’t be afraid to let them show? Your true colors? Your true colors are beautiful like a rainbow.

Eric 46:58

Noelle Marie Jace, thank you for joining us on this Cherry Pal podcast.

Noelle Marie 47:03

Thank you for having us.

Jace 47:05

Thank you for having us. And Happy Pride.

Eric 47:07

Happy Pride. June 28th is the Stonewall Day. So Happy Pride Month. Thank you to all of our listeners for your continued support.