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This program discusses the present and future of LGBTQ leadership in medicine. Panelists include Dr Jesse Ehrenfeld, AMA president-elect, Alejandra Caraballo, a clinical instructor at the Cyber Law Clinic at Harvard Law School, Demetre Daskalakis, the Deputy Coordinator for the White House's National MPOCS Response, and Elle Lett, a statistician, epidemiologist, and physician in training at the Perlman School of Medicine at the University of Pennsylvania. Panelists discuss barriers to care, recent high-profile battles over gender-affirming care, and the importance of LGBTQ representation in medicine and public health and meaningful community engagement.
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Aletha Maybank, MD, MPH: All right, so we'll move into part two of our program. We're now in the fireside chats, and we're going to move into the present and future LGBTQ leadership in medicine. And I welcome our next group of panelists to the stage, as well as our moderator.
All right, so here he comes. Dr Jesse Ehrenfeld, I am pleased to announce AMA president-elect, a strong champion for equity, and we're proud to witness this upcoming historic moment for AMA to have its first president that identifies as part of the LGBT community. So congratulations, and we're thrilled for that leadership to happen.
Dr Aaron Feld will be moderating this conversation and is a senior associate dean, tenured professor of anesthesiology, and director of the Advancing a Healthier Wisconsin Endowment at the Medical College of Wisconsin. And he is also a combat veteran who for the past two decades has advocated on behalf of LGBTQ+ individuals. I will now turn it over to Dr Ehrenfeld for more conversation and discussion.
Jesse M Ehrenfeld, MD, MPH: Thank you. Thank you. Thank you. Thank you. Thank you so much, Dr Maybank. What a treat to be up here with three just really distinguished individuals who I will introduce in a moment. I want to go ahead and make a couple of comments to really set the stage for where our AMA has been with respect to LGBTQ health. And I'm just honored to be here to talk about where our history has been, what are the opportunities today, and of course, our history, as we look back, has been a bit mixed. And if you think back to the '50s, the '60s, the '70s, the 70s, homosexuality, being gay, being trans, was stigmatized by our AMA. It was labeled a medical disorder, and the health needs of our community was ignored. That is the stark reality. It wasn't until the early 80s that the AMA began to acknowledge and debate health issues pertaining to LGBTQ individuals. And even then, those conversations were largely limited to gay men.
The AMA bought into wholeheartedly the junk science around conversion therapy, publicly advocated for our members to use it, to convert people who are gay. who are gay. The turning point came with AIDS. And AIDS brought the LGBTQ health needs of the country front and center. In the late 80s, the AMA finally became engaged in a positive way, raising awareness about the dangers of the virus, advocating for a scientific response to this international crisis, helping physicians and the public better understand how to deal with the virus. There had also been some internal work, work to amend our bylaws to finally ban discrimination within the association on the basis of sexual orientation. Despite a lot of pushback, multiple failed resolutions, it ultimately passed. And then in 1994, we stopped recommending that we convert gay people. And in 2000, we finally came out against the practice formally.
Today, conversations around LGBTQ health and the needs of our community are much more commonplace, much more visible. After a decade of advocacy, the AMA finally helped overturn a longstanding federal ban on blood donation for men who have sex with men. that goes back to the '80s. That victory occurred just last month, which is to say that stigma and discrimination against LGBTQ people is still prevalent. We still face considerable barriers to care. One only has to look at the recent very high profile, very heated battles over gender-affirming care, much of it fueled by distorted facts, junk science, deliberate attempts to mislead the public about what gender-affirming care is and what it is not. Like all issues in health care, our policy has to take us where the science is and where the science leads us. At our House of Delegates meeting two years ago, we voted to strengthen our support for compassionate gender-affirming care, calling it medically necessary, evidence-based for transgender and gender diverse individuals. We stand by that decision today, even as states around the country seek to ban or somehow restrict its practice.
Now, to talk about this and a host of other issues related to LGBTQ health, we've got an amazing panel which I'll now introduce. So on my far right, we have Alejandra Caraballo, who is a clinical instructor at the Cyber Law Clinic at Harvard Law School. Alejandra previously served as staff attorneys for both the Transgender Legal Defense and Education Fund and the LGBTQ Law Project at the New York Legal Assistance Group. Welcome, Alejandra, and thank you for being here. Also joining us, yes, round of applause. (audience applauding)
We've got Demetre Daskalakis, who is the Deputy Coordinator for the White House's National MPOCS Response. He is an infectious disease physician and internationally recognized expert in HIV prevention. Prior to his appointment at the White House, he served as director for the Division of HIV Prevention at CDC, Deputy Commissioner for the Division of Disease Control, and an Assistant Commissioner for the Bureau of HIV at the New York City Department of Health and Mental Hygiene. Thank you also for joining us. I think a round of applause is also appropriate.
And we also have Elle Lett, a statistician, epidemiologist, and physician in training at the Perlman School of Medicine at the University of Pennsylvania. She already holds a PhD in epidemiology from the university as well as master's degrees in biostatistics and statistics from Duke University and Wharton School. Among her many growing contributions, she coined the term health equity tourism, which may be relevant to our discussion today. Thank you for being here as well. (audience applauding)
So to kick us off, why don't I ask if you all could share with us a time that you and your lived experience played a key role in shifting the policy landscape or leveraging policy to support LGBTQ health, whoever wants to jump in.
Alejandra Carabello, JD: I came out in 2016, which is really kind of a turning point and particularly in gender affirming cares, the year that the Obama administration released new guidelines and rules around discrimination, it was called Section 1557 of the Affordable Care Act. But there was still a lot of inequities in how insurance companies were covering gender-affirming care. And in about 2017, I found that a gender-affirming surgery I was trying to get was not being covered. Me being an attorney and working in direct legal services, I was like, well, let me try and challenge this. and it took quite a while. And so I tried to essentially appeal the denial. It went all the way up through the Department of Financial Services in New York and through the appeals process, it was still denied. And it was pretty demoralizing. And so after that, I engaged a lawyer, Noah Lewis, who at the time was at Transcend Legal, and eventually I came to work with at Transgender Legal Defense Education Fund, and he really helped me advocate to try and change the policies that the New York Department of Financial Services was using to regulate insurance in the state of New York around gender affirming care.
And there was a real surreal moment in, I think basically 2018, where we had a meeting in the governor's office with the senior leadership the Department of Financial Services and they had kind of pulled up a bunch of appeals that had been denied and we were trying to highlight this as an issue because one of the main issues, and to get too sidetracked, was essentially they were using doctors that had no expertise or any experience at all working with trans patients to essentially review for medical necessity and they had anonymous appeals up there and while we're sitting there with representatives the governor's office and the senior leadership of DFS, they were discussing one of the appeals and it turned out to be my appeal. And I was kind of a bit shocked and I was like, oh this is awkward, but then I decided let me just say this is my appeal. I'm in the room here and it's very rare that that actually happens when people are making these policy decisions to actually have the impacted person in the room saying this is how it affected me. And so Department of Financial Services ended up issuing multiple circulatory letters afterwards about how to basically do medical necessity reviews for gender affirming care, particularly around surgery. And so that was really a moment for me that showed how important it is to have not only lived experience, but also to have a seat at the table when these decisions are being made and how these policies are being crafted.
Demetre Daskalakis, MD, MPH: I'll try to follow that. That's pretty amazing. - Hi, first of first, thank you so much to AMA for having this panel, really remarkable last panel, hard to follow that as well. And just super shout out to Dr Aletha Maybank for being just a stellar human and amazing leader. (audience applauding) I've known her long enough to be able to say, I love you Aletha on this stage and I think she'll be okay with it, I love you Aletha.
So I think of a couple of things that sort of come to mind and I'll talk about a local one and then I'll talk about a national one. they actually are intertwined. And so, and I'll talk about sort of starting with the fact that really representation and leadership in medicine and public health matters. And so the identities that people bring to the table are in fact their superpowers that allow them to actually do the job better, not only for the individuals that they represent, but because of the empathy that they have generated by understanding the experience, or understanding that they don't understand, the experience of other people who need to be at the table.
So I'll start by saying that, and then say that one of the things I think I was the most proud of when I worked locally in New York City was having heard over and over again and experienced myself some pretty significant barriers in the health care environment that LGBTQAI+ people felt. We were able to look at all of the regulations and the laws across New York State and weave them together into the first-of-its-kind LGBTQAI+ bill of health care rights. This document was then produced, went through vetting through a lot of lawyers—god bless you—a lot of lawyers, and ultimately what happened was the decision was made that this, in fact, could be posted as a bill of rights—but that's not where we stopped because who cares about a piece of paper if there's not a way to enforce it? And so the next component of that health care bill of rights that we generated locally in New York was linking it to the New York City Commission on Human Rights. And there was a way for folks to access that commission. And if something was not going as billed on that health care bill of rights, they were able to file a formal grievance and complaint. And that commission would then have to follow up.
So that then sort of leads me to sort of my next example, which is sort of more on the national basis. And one of the areas that, as you heard, I work in is HIV. And HIV generates stigma that goes beyond just a virus and a test result, but actually permeates through the LGBTQAI+ experience. And looking at sort of the structure of the way HIV prevention and treatment delivery was being provided across the country, it was clear that the silos that were created actually maintained systems of stigma that didn't allow people to really achieve their ultimate state of health. It did not sort of link into sexual health, did not link into gender affirming care, did not link into the health care of women. And so we were able to create a framework that is called the status neutral framework for HIV prevention and care that really uses HIV as a door, a test that that door opens and regardless of HIV status really encourages service providers to braid together different sort of different strategies and different funding streams to create programs that serve the human in front of them as opposed to the status of their HIV test.
And so what we were able to do was through a very sort of clear policy analysis actually send letter, send communication and create technical assistance for funded folks around the country through the Ryan White Program as well as through CDC to say weave together your resources and create a system that is agnostic to HIV status but instead serves the care, the needs of the people that are in front of you. And that inherently included making sure that LGBTQ-focused care, specifically transgender and gender-affirming care, were actually embedded as part of the fabric of this status neutral system. So it's really exciting that now it's kind of the policy of the land, that these things need to be woven together in a way to better deliver care. Thanks.
Elle Lett, PhD, MA, MD: For me, this answer really comes from the fact that as a Black trans woman, I'm usually the only—either the only black woman, the only trans person, and almost certainly the only Black trans person in a room. And so at the recent monkeypox outbreak, I had my experiences as that only—and we're going to talk about intersectionality later if we follow through with all the questions, which I'm looking forward to that—but all of these sort of infectious disease issues that have come up are really just acute shocks to an already inequitable system.
And so it was wholly predictable who was going to be disproportionately harmed in the monkeypox outbreak and who would have less access to vaccines. And so despite that sort of predictability of inequity, I was involved in some projects in Philadelphia and New York where the local departments of health were kind of behind in acknowledging that people of color were under vaccinated and including trans people in their targeting of who were to get the vaccine. It was initially very white gay men-dominated. And I was like, as my lived and body experience as a trans person, I know that doing identity-based vaccination, like targeting gay men was incomplete because it's not just the identity, but the behaviors. We frequent the same reservoirs. We frequent the same places. It was about behaviors. It was about going to sex clubs. It was about all these things where the virus, where monkeypox was being, where people were being exposed. And so I was able to provide that insight where despite your data not quite catching up to this, trans people will be disproportionately affected too. So we need to prospectively try to engage that coming inequity by getting the vaccination to those people as well. And I wasn't always listened to, but eventually the data bore out the reality and we were able to hopefully reduce the window between when they said, okay, let's add trans people to people who are vaccinated in Philadelphia. And so that's just indicative of how lived experience sort of translates to being immediately policy relevant because it gives me a unique lens that doesn't always translate to the people who have the power to just dispense resources.
Ehrenfeld: Awesome, so maybe I could ask, thank you, yes, amazing. (audience applauding) Demetre, Elle, maybe you could share with our listeners today an example of how your leadership has really been rooted in either community-engaged research or programs to advance LGBTQ health.
Daskalakis: I think I'll actually riff right off of Elle. and talk a little bit about MPOCs. So I think one of the things that we saw sort of in—well, first of all, when you're coordinating at the White House, what that means is that you actually have the ability to see across agencies. And so very often when you're within an agency, you have this sort of these blinders of your agency and you don't really have a sense of the other components that are there. Also, one of the strongest parts of the soft leadership and in fact that happens at the White House is the ability to convene. And that power is actually a significant power. And so as we saw, as Elle said, really the numbers, the statistics, really the epi pointing to the direction that this outbreak was disproportionately affecting Black and Latinx individuals—specifically gay, bisexual, other men who have sex with men and transgender folks and other folks with gender diverse identities—it became clear that we just didn't have people at the table that were from that lived experience, and I include myself. I'm a part of the community, but I'm not exactly in the community. And again, your identity is your superpower to know that I don't have what I need.
So what we were able to do was to create a workshop that was a ongoing and repeated workshop that focused on really bringing in people with lived experience, so Black and Latinx and other Indigenous folks of the LGBTQ community, primarily gay, bisexual, other men who have sex with men and transgender women, frankly, and we're able to convene them to get individual level feedback that we then use to calibrate the response. And so it's not research per se, but it is actually using meaningful community engagement to be able to address the infectious disease outbreak. And again, that's a lesson straight from the HIV playbook, which really is about meaningful engagement of communities.
And so the effect of that, and I can go down the list is that that engagement led us to accelerate communications with WHO to change the name of the infection to mpox. That actually led us to identifying new ways to administer the vaccine so that the hyperpigmentation that you could see in your forearm wasn't necessarily going to be visible. It accelerated our work in community engagement and actually putting vaccine out in the community with really addressing and disrupting some of the problems that I'll identify. So using examples of event-based vaccination, very successfully, one example was Atlanta Pride, Black Pride, where 70% of the people vaccinated were people of color, which is atypical in all of the other programs. So I think though not research from the public health perspective, really the notion of really using community engagement and meaningful community engagement as the foundation, then really supported by political will, and then further than pushing forward science into practice is the strategy. And I think that I can give the example not just in MPOCS, it was the same in COVID, it's the same in HIV, it was the same in the measles outbreak that I handled in the Orthodox Jewish community in New York, the same lessons sort of exist across all of those scenarios, thanks.
Lett: Yeah, I'm going to answer the question, but just to highlight, there's a sort of a toolkit that is pretty basic that means that a lot of the limitations we have in having not achieved equity is really just because of a lack of will to implement them. It's just embedding in the community to gain trust, asking them what they need and want, showing up to where they are as opposed to having them come to you and then staying for a while. Those are really like the basics of community engagement. And they, given time, effort, humility, and resources, they will work. And then as far as sort of the question that was specifically asked, remind me what it was again.
Daskalakis: Your leadership rooted in community engaged research.
Lett: Oh yeah, and so I think of knowledge, I'm primarily a researcher and I think of knowledge as for health equity as coming from two places. You can study it, it's didactic, but it's also experiential. And any team that's going to be effective needs both. And so if you're a team of scientists, policy makers, researchers, physicians, who don't have people in, from those communities involved, you are inevitably going to miss something. It is inevitably not going to be complete. So you have to get that experiential component. That is not to say that your didactic learning and the skills aren't vital. It is just incomplete in the same way that when I'm talking about issues related to the disabled trans community, which is one of the most marginalized groups within the trans community for lots of reasons that we could go into, I need to be in community with those people because I do not navigate the world with disability. It's just the lens that I'm missing.
And so I don't silo my engagement to just research. Anytime I'm working with trans, on trans research, I'd like to have a large and diverse group of trans people to be a part of it, as well as non-trans people to help us sort of triangulate, not truth, but what is going to be the most efficacious for what we're trying to reach. And when I do a lot of reproductive justice work, as a Black trans woman, I am in a community with Black cis women and other people with pregnant capability. And so that's not my experience, but I think all of our liberation is tied. And so I work with them to do that work.
Daskalakis: Can I add one just quick, quick, quick, quick thing, which is, and you made a great list of the things that you have to do with meaningful engagement. I just wanted to add that from the government perspective, you also have to have a way to track accountability. Which is like, you can engage all you want, you can get a list, and if the list doesn't do anything, except for like appear on a website as a list without some way to sort of track it, it ends up not being useful. And that actually means meaningful data, and that for us also means SOGI data that is actually like correct and consistent. We can see the mpox response literally as we move forward, less and less SOGI data was coming. So then we had more and more invisibility in communities.
Lett: If you want to help LGBTQ populations, advocating for SOGI data everywhere is like one of the easiest things you can do.
Ehrenfeld: I love it. So let me bring Alejandro back in, and you as well, Elle. So I want to get to the topic of intersectionality. So could you guys share with us an example of how bringing an intersectional lens to your work to advance LGBT health, where have you found opposition? Where have you found support? How do you navigate?
Caraballo: Yeah, so this time last year, I was writing a very lengthy law review article on interstate extradition, which I think for many people here who are not attorneys probably are like, what is that? and kind of maybe probably rolling your eyes. But it is a very important issue in regards to the criminalization of abortion care and how states are going to change their responses and how they're criminalizing health care and how one state's human right is another state's capital crime potentially. So how do you reconcile that? And so going through that, me and my co-authors wrote an article detailing the history of the extradition clause of the Constitution and how it's been applied, and coming up with concrete recommendations for states to enact policies to protect their residents from being criminalized by other states for providing abortion care.
And so why am I bringing that up in terms of LGBTQ health? Well, those same policies apply to gender-affirming care. We wrote the article with reference to that, but it became very apparent last year when Texas sought to criminalize the parents of trans kids by launching investigations of so-called child abuse for parents of trans kids. And for a lot of people who don't know this, but once investigations start, it can be a crime to even leave the state. And so that creates all kinds of legal barriers and hurdles for families who are being persecuted by their state government solely for the crime of having a trans child. And so that basically led to these safe harbor provisions being enacted across the country in various states. This is California, Minnesota just recently passed theirs. New Jersey did theirs through executive order, Massachusetts, Connecticut, have all of these safe harbor statutes that were enacted. They were enacted as part of gender affirming, to protect gender affirming care, but they also protected abortion care. And this is an intersectional issue because at the end of the day, both of these are about bodily autonomy. They're about the fundamental right to make medical decisions about your own body. And so these two issues, they may seem disparate or separate, but at the end of the day, they are part of the same fundamental right and fundamental liberty. And so that's why it's important to make sure that we have a coalition that understands that all of these things are connected and they're not different. And that way, not only are we protecting the right to access abortion, but we're also protecting the right to access gender-affirming care. And that way, we not only have a bigger coalition that can work intersectionally, but we can also build more protections that protect more people in more different or in different areas of the law.
Ehrenfeld: Elle? [Audience applause]
Lett: Yeah. So, as a scientist, I'm an intersectional theorist. So this is the place I'm most at risk for going too long, but I'll work on it and make sure I don't. But intersectionality, a lot of people, it's not about identities, it's about power. It's about how systems of power and privilege interact and coalesce to essentially pattern the experiences of all of us. And I think people, one of the barriers to people really embracing intersectionality is because they think it's about oppression Olympics, but we focus on the deficits, but it's also about the strengths too. Like my, our social positions put us subject to different systems of oppression, but it also confers to us unique strengths. And so I'll think about the work being done by the Indian Echo Group, specifically around bringing gender affirming care into the Indian Health Service, and to be clear, this is a resource deprived initiative and they need more support, but they're also doing amazing work with very little by indigenizing gender affirming care. And so I encourage you all to learn more about that.
But what I want us to take away is that intersectionality is really just a way to think that maps more onto the world. As a Black trans person, I don't experience transphobia or cissexism separate from racism. I experience them simultaneously. And so, but I'm also Black and trans at the same time. I can't parse what part of my identity is being discriminated against separately. And so intersectionality is just how the world moves. And so when we recognize that as sort of a base truth and recognize that we all have different social positions that come with their own privileges and oppression, I think it becomes more comfortable to embrace. And I think another aspect is that we have to step away from the idea of placing blame and really focus on liberation. Intersectionality is not about assigning who or which populations are culpable for the harm, it's about achieving justice for all of us. And so that's where I think I've been successful in sort of shifting the narrative around…because intersectionality came out of critical race theory. And so—well, it's, they're sisters, I'll put it that way. It didn't come out of it. Some Black feminists in the room are going to be upset about me saying it that way, and I apologize. (laughing) And, reasonably upset. But, and these attacks on these sort of thought paradigms are being done because people are like villainizing, this means your white child who's done nothing wrong is the villain, and everyone's going to hate them. And that's not what it's about.
And so that's why I want to encourage you to think about your own intersectional position, the systems of power and privilege that you operate in because of that, and what that means about your unique strengths that you can contribute. And then the last thing I'll say is that I work in reproductive justice and trans health similar to Alejandra, and I think part of the things, one of the utilities of intersectionality is that unless you see the lines between the movements, and it requires that we think about cross-movement coalition building. It requires that our gender-affirming movement is reproductive justice-inclusive. It requires that we think of things that way, and that should be, in some ways, comforting, because that means we can collaborate with everyone. We all can support each other's liberation, and we have to think about all of these issues in concert.
Ehrenfeld: So, in 48 hours or so, I'll become the next AMA president, but I'm still learning from my predecessor. And the lesson I learned is I'm going to make sure we leave time for questions. So I'm going to ask you all one last question and then let the audience think of what they want and start to line up. But I'd really love to, you've got assembled before you leadership of the AMA. You've got me on stage. What kind of leadership, what kind of advocacy in LGBTQ health would you like to see from the AMA? And would you like to see from individual physicians and students?
Lett: So I have something to start with. And I think one of the biggest challenges we're facing is sort of the lack of—the reason—the lack of understanding of how scientific knowledge is constructed in the public eye. And so what I mean by that is that a lot of the anti-transgender sort of forces are weaponizing this idea of low-quality evidence is really the evidence that is being used to support transgender-friendly care. And that's, I think, doubly disingenuous because the low-quality evidence they're talking about is just the typical observational studies that we use to understand the challenges of postmenopausal hormone replacement in cancer, or we use to understand smoking and cholera. But in medicine, anything that's not an RCT is low-quality. And so they're weaponizing the language and nomenclature that we use against a public that is not aware of that to make it look like we're sort of doing a bait and switch. And it ultimately reduces the trust in the entire medical enterprise. So I think one point of advocacy is just helping people understand what medical evidence is and how it is generated and what things can and can't be done.
And the other one is just like we need universal SOGI data, not just like infrastructure in EHRs, but uptake. Like people need to be actively campaigning for it to be part of the intake forms of new patients because every hospital system by guidelines has to be able to have SOGI fields, but it really takes on the ground people saying, hey, what is your gender identity? What is your sexual orientation?
Ehrenfeld: Thank you. Awesome. (audience applauding)
Caraballo: I'll quickly add, I think one of the things to understand is the epidemic of disinformation. When you look at a Venn diagram of anti-vax, kind of COVID conspiracy theories and disinformation and misinformation, and the same attacks around gender affirming care, it's basically a circle. They're the same people and they use the same tactics. And so what it really requires is a very committed response to be able to tackle the disinformation, pre-bunk the disinformation and be able to basically inoculate—I'm using a lot of medical terms here—but inoculate the public from this kind of corrosive disinformation. And I think it's even more challenging in the light of the COVID-19 pandemic. And it's gotten much more difficult, but that doesn't mean that the work needs to let up. It needs to be doubled because this is not only affecting trans folks, it's not also affecting people who are immunocompromised who are susceptible to COVID-19, this is also impacting equity issues. The same legislation that's targeting gender-affirming care in hospitals in places like Texas, they're also limiting the teaching of equity in medical schools. So we got to realize that this is a broader issue and this disinformation epidemic is really corroding kind of the basis and the foundation of not only equity in medicine, the medical… what do I want to say—sorry—basically, the medical infrastructure as a whole.
Daskalakis: I'm just going to do a yes and. So I think we've talked a lot about systems, like support EMRs to get SOG data, like make sure that we're battling mis- and disinformation. And I'm going to go somewhere even more foundational, which is change your practice. actually make exploring SOGI information and SOGI data a part of what you do, and then play it forward so that the folks that you are training and the folks that can see your example can see that the best way to serve people is to be able to actually see them and create visibility within the system. So yes, enter that information into the EMR, but really enter it into your practice and into what you do and how you teach this as you pay it forward and you teach the future generations of clinicians that the only way to know something is to ask. And the best thing that you can do when you get an answer is to check your face and not to be shocked by anything, but instead, engage with humans where they are. And we heard that on the last panel as well, so that you can actually deliver the optimal health so that they can achieve their own excellence. And I think that was the definition of equity.
Ehrenfeld: Thanks. I love it. Let's go ahead to audience questions. And we've got a couple who have lined up at microphone number two.
John T Carlo, MD: Thank you. My name is John Carlo. I'm from Dallas, Texas. I'm the CEO of Ryan White Community Health Center in North Texas. Great, great talk. This is really appreciative of hearing all the information. It's really, really important. Dr Daskalakis, big fan. Thank you so much with the staff's neutral approach. We're still following your lead and really appreciate what you're doing.
The time I saw you actually was in Montreal at the IAS conference. I think you had a different reception for that meeting. So I'm just curious if you want to talk a little bit about that, your experience, and perhaps how that intersects with your lived experiences and then being in the role that you were in the White House.
Daskalakis: So I'm going to open the veil and tell you what actually happened. So thank you for your question. And so what he was referring to is that I gave a talk about mpox and the stage was stormed with protesters because there wasn't enough vaccine and it wasn't moving fast enough. They were right. There wasn't enough vaccine and it wasn't moving fast enough. And so this is like really where the identity and sort of my lived experience will matter because the veil is revealed that before they stormed the stage, they called me because they know me and they said, hey, we're going to storm the stage, and I said, "You should totally storm the stage." Like, good idea. Storm the stage, and then we did the thing that, and I think you're coming from a Ryan White perspective that is in the grand tradition—and I think if you were there, you remember I almost, I said the same thing, like off the cuff—in the grand tradition of what is really working with the LGBTQAI+ community and the community of folks that advocate for HIV was that you yell at me in the front so the press can see, and then you talk to me in the back so we can make changes. And that's what we did. Thank you. (audience applauding)
Ehrenfeld: And by the way, for any future AMA meetings, excellent advice: call the president first before you storm the stage.
Daskalakis: Totally a better plan. (audience laughing)
Ehrenfeld: Yeah, totally, totally.
Lett: So they can clear the way.
Ehrenfeld: Next question.
Lynn Perry: Oh, that was, that was wonderful. Lynn Perry from Colorado. So my question and sort of commentary is, you know, Colorado is wonderful. We have passed legislation to protect people, and I'll give all the credit to you for helping us do that legislatively. But making changes in New York City is not the same as making them in New York.
Daskalakis: 10 million percent.
Perry: Making changes in Denver or the Front Range is not the same as making them in all of Colorado. And that would be fine if our communities all lived in those sort of safer places, but they don't. We have the same problems of bias, misinformation, disregard throughout the larger state. And as a medical society, because I'm a delegate for the Colorado Medical Society, how do we reach our communities in those areas that are not as friendly?
Lett: Yeah, so this gets really complicated because there's legal—there are people who are trying to criminalize giving the care. But I have a couple people in my life who are on the front lines as far as giving gender but some of those people are cis people. And so this is their first time, like one of the tactics that's being used by the right to like talk about, target a clinic and like put their faces out and like, they're like, oh my God, I'm under threat. And I'm like, I'm a visible trans academic since I started medical school. And like, I get, I'm on watch lists. I get death threats like on my daily life when I'm not even a professor yet. And so part of it is like, there has to be, each person has to decide them for themselves, but there is some degree of just like courage you will have to have if you really want to be a part of providing this frontline care to people whose lives are actually trying to be legislated out of existence. Like that is the reality of trans people right now. And so like I've had some people in my life who stopped doing the care because—and that's their right and I cannot fault them for it—but those people aren't really ready for the challenges of this work.
And so that's, we're going to need resources to make satellite clinics in rural areas. Like we can't have everyone in the Philadelphia…CHOP is like a beacon for it, and everyone around Pennsylvania comes there. That's just not sustainable. And I also want to lift up the Campaign for Southern Equality right now. They have a transgender youth emergency fund where they are developing plans for people in the South whose states are making it illegal for them to like…there are youth who are being forcibly detransitioned. That is so biologically painful and also mentally traumatizing. And so they're making plans for those people to seek care. And so the reality is, it feels impossible because it is. And so people will have to get the courage to like fight through that impossibility. There will need to be satellite clinics, there will need to be fundraisers, there will need to be people who will work despite how scary it is. And that you do it in groups and you do it so you can be safe and you do it by recruiting colleagues to do it. So you don't go out to rural Colorado by yourself, but get a group of people and like have a satellite clinic out there. Sorry, I don't have better news.
Daskalakis: Just going to add, first of all, I'm excited that I'm joining the death threat club. Yeah, they're great. They're really fun when we get those. And that actually is part of the answer, in my opinion, to your question, which is like, this is where if you are not necessarily from the community, you use your privilege to be able to support the community. And so exactly what you're asking is such an important question, which is that if there are voices that you hear that aren't being lifted, lift them. Bring them into the conversation. And so if you're hearing folks from a rural experience who are having LGBTQAI+ barriers to care, really bring them into the conversation because their view is going to actually change your strategy. And I think no truer words have been spoken that just because you can do it in a urban setting doesn't mean that you can do it in a rural setting. It's because sometimes we don't listen to the rural voices and it's important to have them at the table. But also, use your privilege, flex that muscle, and really protect the trans kids, protect the sort of services that we provide to LGBTQIA+ people. Because as I like to say when asked this question, what do I think that the impact is of the sort of legal changes that are happening that block people's access to care? Well, whether they pass or not, it doesn't matter. Their impact has already happened, which is that people who are living in those experiences all of a sudden feel that the government is not to be trusted. Then when we say to them, "Trust us so we can provide you services so that you can stay healthy like a vaccine or like pre-exposure prophylaxis for HIV," why ever would they trust us at all?
Perry: I just wanted to comment that in Colorado, which was one of the last places a decade ago that somebody attacked and shot people at a Planned Parenthood clinic. Talk about intersectionality. I think that we are prepared for all contingency and your words mean a lot to us in terms of going out to all of those areas because that's exactly what we want to do.
Daskalakis: Thank you for your work.
Perry: Thank you.
Caraballo: I just want to quickly add to those comments. I also have gotten quite a few death threats. Actually, I did call law enforcement yesterday as I got multiple bomb threats to my email address. So I just wanted to continue to tie abortion care and gender affirming care and just this broader work. Planned Parenthood clinics, abortion clinics have been under this threat for decades. There have been providers that have actually been murdered and bombs that have gone off at clinics. So this experience for abortion providers is long running for decades, and now this is spreading to other providers. And one way that this has been siloed off that most abortion providers worked in isolated clinics, so the rest of the medical profession didn't experience that. But now what we're seeing is now that gender-affirming care is being provided in big hospitals such as Boston Children's, it's impacting everyone. And so people have to realize that you have to be able to combat this and be able to come up with safety and security plans for your staff and learn from the lessons that abortion providers have had. They know how to deal with this. They've been dealing with this for decades, and they have decades of experience and lessons that can be learned. And so there needs to be coalition building around this to learn those lessons and implement them for everyone else to make sure everyone can stay safe.
Lett: And the last word is, if you're going to a rural place, reach out to them first and get the lay of the land. They know the dangers of their community, and they'll know the safe spots. A lot of times, churches and things like that are actually the places you would set up and think.
Ehrenfeld: Thank you. Next question. Sorry.
Colin Fields, MD: Hi, Colin Fields, I'm the medical director of the HIV and PrEP program, and former director of the gender health program at Kaiser Permanente Washington. My questions are around, I have two questions, around sexual orientation, gender identity data. So can you comment, this house of delegates is going to be talking about resolutions that are related to this data. And can you comment on the battle between SOGI data privacy and visibility, and SOGI data…excuse me, SOGI data prevalence and visibility within the chart, and SOGI data privacy within electronic records, and routine demographic collection? And then my other question is, how do we improve the data, not just around sexual orientation, but around sexual behavior? Because that continues to be very challenging to capture within electronic medical records, and our organization continues to struggle with it as we see some resurgence in monkeypox, or mpox, sorry, mpox.
Daskalakis: You're fine, you're fine.
Ehrenfeld: Who wants to take it?
Lett: Okay, I'll jump in, but I'll be quick. And so, the reason why privacy is a concern is because of stigma, so having a practice that is inclusive can help. If the people are safe, then it's easier for the privacy concerns to be reduced. The other thing I'll say is that we actually need to dig deeper. So the data we get right now, like if you know someone who's a trans man, they could be eligible for some or none or all of the various gynecologic cancer screenings. So we really need organ inventories. Like among the suite of gender affirming procedures they might have had, where are they on their journey? So a lot of this is the culture of your practice environment, making getting that data a norm and making those people from those different identities feel safe, and then making sure they know why you need that data. I don't think you can…privacy, it's a chicken, it's not chicken, it's a catch-22 because—mixed metaphors—because it's very challenging to be private for minoritized communities identifying information, and so you have to prioritize what are the needs for their care. Ultimately, that information is required to give them the best care?
Caraballo: I'll quickly add, I think one of the things to be cognizant of is the state that you're operating in or practicing in. Because the issue is that I think a lot of people don't understand the risk of state intervention and state persecution here, and the way that mandated reporter laws additionally can also be weaponized in this way. So in Texas, in Dell Children's Hospital, someone internally leaked medical records of trans kids to conservative activists. The same thing happened in Missouri. And so we're seeing blatant HIPAA violations that would get anyone likely immediately fired just causing firestorms around gender affirming care and causing pretext. And that allows their state attorney generals to start investigations. And that in and of itself creates distrust about giving that information to providers because people are concerned that the state will weaponize that to go after that demographic. And I don't think we've kind of really seen that in this way. Particularly in Texas, the attorney general was trying to create a list of trans people from driver's license data, from people who had requested gender marker changes. And they were doing it without any writing. They were not doing this via email. They were doing everything by phone and orally so that they wouldn't leave a record of this. That is very scary. So I think we have to understand that it's not just threats from private actors, but also internal people within the hospitals, but also probably the biggest risk is the state itself that could use this data to be weaponized against particular communities.
Daskalakis: I'll just add, I think it's another yes and, which is really also really having a high level of transparency as to why you're asking the question. I think you referenced that, which is why you need the information to be able to provide better care, and then also transparency about the realities of the security of the data. So I think that those two pieces of information are really valuable for humans to make their choice about what information they're going to disclose. It's important that that decision about whether to disclose or not is coming from the person as opposed from a system that doesn't ask the question. So that I think is probably really important to say as well. And so I think that there's also, you know, there are a lot of controversial things happening in public health right now, specifically around sort of the ability of national public health to be able to actually have adequate information about the populations that they serve to be able to do the work. And I think that as the future does sort of come into a more automated strategy for case reporting that will include pulling data from EMRs into public health, sort of really being a clinician and a physician advocate and a legal advocate to make sure that as the technology changes, we also create adequate safeguards to make sure that the information, though necessary for public health, is also protected from nefarious players, which do exist. Thanks.
Ehrenfeld: Thank you all so much. We are out of time. So for those of you who had questions, send them up front to our team and we'll try to get them answered. How about another round of applause for these amazing, amazing individuals? (audience applauding) They have left us with lots to think about and my only difficult decision is who I want to talk to first at the reception, so thank you all so much. (audience applauding)
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