June 10, 2022
In this LGBTQ Pride month Trailblazers episode, we interview national expert on LGBTQ+ health and adolescent HIV care, Dr. Rob Garofalo. Dr. Garofalo is the Chief of Adolescent Medicine at Lurie Children’s Hospital of Chicago and specializes in the care of HIV+ and LGBTQ adolescents at the Center for Gender, Sexuality and HIV Prevention. He has a passion for caring for transgender and gender diverse youth and advocating to help LGBTQ kids thrive. Dr. Garofalo has received several lifetime and leadership awards for his advocacy on behalf of youth and is a prolific researcher and author, having over 180 publications to his name. He has been an inspiration to many in the field of queer and trans health, and a role model of a genuine, honest and passionate pediatrician and human being.
Dr. Angela Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the Kid Experts where the complex is our every day. Each week we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge and perhaps change how you care for kids.
Welcome to Talking Pediatrics. I’m your host, Dr. Angela Kade Goepferd. We are back with another trailblazer episode and I am thrilled to be interviewing our guest today, Dr. Rob Garofalo. Dr. Garofalo is the chief of adolescent medicine at Lurie Children’s Hospital of Chicago and specializes in the care of HIV positive and LGBTQ adolescents at the Center for Gender, Sexuality and HIV Prevention. We have a shared passion in the care of transgender and gender diverse youth and advocating to help LGBTQ kids thrive, which is how we first met. Dr. Garofalo has received several lifetime and leadership awards for his advocacy on behalf of kids and youth and is a prolific researcher and author having over 180 publications to his name. He has been an inspiration to me and to many in the field of queer and trans health and advocacy and a role model for the type of genuine, honest, and passionate pediatrician and human being that I strive to be. Rob, thank you for joining me on Talking Pediatrics.
Dr. Rob Garofalo: Oh, wow, that was like the nicest introduction ever. Thank you for having me.
Dr. Angela Kade Goepferd: Well, it’s just such a pleasure to have you. We were chatting before the episode of what an important impact you’ve had on my own career so it’s such an honor to be interviewing you as a trailblazer.
So, speaking of that, you are one of now about five trailblazers that I’ve interviewed over the past two years and I wonder, what does that word mean to you or what does it mean to you to be a trailblazer and did you imagine that you would be one?
Dr. Rob Garofalo: For me I think of a trailblazer as someone who has opened up doors, paved paths for others, really done groundbreaking work and, I mean, I guess I can see myself through some of those lenses and that’s really kind of cool. It’s not a term I would ever use to describe myself but I think, you know, whether it’s been for creating programs or care for LGBTQ youth or the work that I’m now doing with young gender diverse children or transgender adolescents, or even actually now some of the work I’m doing in Africa with young gay men and HIV testing, I’ve tried to live my life and live my career with a sense of both passion and sort of authenticity. I think both of those things are really what it takes to kind of move the public health needle forward, right, it’s no longer good enough to just do good work. You really have to really try hard to inspire people and other people to join you in that work.
Dr. Angela Kade Goepferd: Yeah.
Dr. Rob Garofalo: So thank you, again, the term trailblazer is a new one for me but I’m going to take it just for today.
Dr. Angela Kade Goepferd: So one of the first times I ever learned about you, one of the first profiles I ever read about you, was a piece in the Chicago Tribune in 2014, and for those of you who are listening who want to read it, it is called A Doctor, an HIV Diagnosis and a Dog. I think what struck me most about that piece was your vulnerability and the way that you shared so openly about your health and your identity journey and your path of taking care of kids. Could you tell me a little bit about that piece and what the experience of doing that was like for you?
Dr. Rob Garofalo: Yeah. It’s interesting that you bring up that piece because that was one of the hardest interviews that I’ve ever given because it was the first time in my career that I was able to be open about my own HIV positive diagnosis and its impact on my life. Right at the time I had started a nonprofit charity called Fred Says with my dog and I realized that behind the charity was actually the intersection of my story with the wonderful healing power of this dog.
You know, but we don’t learn as physicians or clinicians to be vulnerable, right, in many ways we’re taught the exact opposite. I guess I would say that throughout my career attempts to conform to what any traditional mold is, of what it meant to be an academic, or what it even meant to be a pediatrician were not things that felt comfortable to me. Whenever I’ve allowed myself to be vulnerable or allowed myself to be myself, vulnerabilities, mistakes, flaws and all, I think good things have tended to happen.
But that piece was really challenging, in part because of the stigma that still exists around what it means to be living with HIV and what it means to be HIV positive. I struggle to even think of another pediatrician that is open about their HIV status. It’s something that I did with a great deal of forethought but so many amazing things have happened because of that openness, not just within myself but also in the community around me.
Dr. Angela Kade Goepferd: That was the thing that most shone through to me about that piece and in that article you talked about how the way forward for you and really healing from the grief and shame of that diagnosis was to start telling people about it and to stop living in isolation. And there’s a version of coming out in that that I think is so relatable, not just for people with HIV but for a lot of the young people that we care for who are part of the trans and gender diverse community, sexually diverse identities. Did you find that sharing that vulnerability changed your relationship with patients?
Dr. Rob Garofalo: Oh, my God, for sure. Whether it was my HIV patients or my transgender patients, I think my patients and my families saw me in some ways as a more relatable human. I love telling this one story about a young trans kid that I was seeing shortly after a similar article was published about my HIV status. He came in with his mother. They had been in my care for a number of years and the mother said, “Go ahead, ask him, ask him,” and I said, “Go ahead, ask me any questions. You’re not going to shock me at this point in my career.” He was really shy and uncertain of himself and then he looked at me and said, “Are you taking your HIV medications? Because you’re important to me.” And it’s a story that I love to tell because it shows the remarkable expansiveness of adolescents and of their ability to really break down things that we make really complex, as adults, into simple pieces, right. I was worried about the stigma that people would view me, you know, that lens.
Dr. Angela Kade Goepferd: Right.
Dr. Rob Garofalo: What I was worried about was that people would see me through this stigmatized lens of being an HIV positive person. And rather this young person, you know, he just saw me as someone that was important to him because I had treated him with importance. There’s something about that interaction. It’s one of my favorite moments, really, in my career as a pediatrician because it just showed the beauty of the young people that we see, right, and it also showed how sad it is really that it just takes simple acts of human kindness to build connections with people. To me, after that article, I walked around in fear, really, about how I would be treated and yet this young man treated me with so much compassion and dignity, in part, I think, or I’d like to think, because of the compassion and dignity I’d shown him.
Dr. Angela Kade Goepferd: And what I found in my career path as a queer pediatrician and as someone who has identified as gender queer or non-binary is that the kids that I care for, I was very nervous about sharing my identity at first with kids and families, both for reasons that you mentioned in terms of worrying about being stigmatized through it but I’ve really found it to be a path for connection. And so many interactions like the one you described where kids are very nervous to ask, “Are you gay?” Or, “Are you married?” Or, you know, some of these questions that they’re kind of trying to get to the point of, but what they really want to know, I think is, “Are you like me?” Or, “Do we share something in common?” And to have that with a patient is really powerful.
Dr. Rob Garofalo: You know, again, we’re trained throughout all of our training, which I think we could have spent three hours on that aspect of our training to be these dispassionate observers, to have a wall in some ways between us and our patients, where they provide information to us, we don’t provide any information back about ourselves. I’ve always been really open, not necessarily in the clinical encounter, but in the world about my HIV status or the fact that I have been a victim of an assault, or that I am in recovery and have struggled over the years with addiction. Those are things that doctors don’t really talk about and yet I think with my patients, and with my colleagues in some way, you can make the mistake of seeing me through those lenses as damaged or flawed or weak but then you would fail to see me as one really important thing and that’s effective, right.
All those things make me relatable in some ways to my patients and their families because it demonstrates an ability to be relatable and, like you said, and to connect in a way that’s often missing from the clinical encounter. I think you have to be careful, right, I mean whenever a patient asks me about a disclosure I always have to think before I move forward, like, “Am I about to disclose this information because I want to do so or I think it might actually be helpful to him, her, them?” But more and more, I think, as long as it’s an innocent disclosure of information that provides an opportunity for connection I don’t really see what the downside is.
Dr. Angela Kade Goepferd: Yeah. I feel the same way. You know, I’m a parent, I have three kids, and it’s not uncommon for me to share an anecdote about being a parent or a relatable experience about being a parent with my patients in the primary care clinic. To me there’s a similarity to maybe sharing an anecdote about part of my coming out story to a kid or a family as I’m trying to help them through a challenging conversation with a grandparent or something like that and to say, “Well, we need to give our family members some time because my experience has been that relationships can and do change over time and I hope that will be your experience.” And we want to maintain some professional boundaries and at the same time, I don’t want my identity as a queer person or as a non-binary person to be any more of a taboo thing for me to talk about than my identity as a parent.
Dr. Rob Garofalo: Right. I mean, it makes the world so much more rewarding on both fronts. You know, obviously, it’s not my experience. I’m a cisgender, gay guy and that’s not the same as being gender non-binary or gender diverse or expansive or transgender but I do think that trans youths need role models too that oftentimes aren’t available in their day-to-day lives or existence. So I think it’s amazing that clinicians like you and others like you across the country are being more open about who you are because I think young people need people such as yourself as visible role models within communities. And I’d like to think even professionally that’s true.
Dr. Angela Kade Goepferd: Right.
Dr. Rob Garofalo: When they asked me to be the editor of the journal Transgender Health a few years back I was like, “Well, do you really want a cisgender, white guy to be the editor of [inaudible 00:11:36] journal, right?” And the publisher came back and said, “I do believe you’re the right person for the job.” But I’ve approached it with a great deal of humility and with the sense that inclusion and representation really matter and so I hope I’m the type of leader that creates as much oxygen for others as he consumes when he enters a room. So even in that space, as the editor of Transgender Health, or when I’m doing work with trans communities, I’m constantly looking for opportunities to lift people up because the world needs more people doing this work and doing this work well, such as yourself.
Dr. Angela Kade Goepferd: Yeah. Well, thank you, and I absolutely think you do that. I referenced that Chicago Tribune article and for me that was such a great example of you being your authentic self in a way that I read as very powerful and my entire career trajectory changed when I finally decided to just show up as my authentic self at work. I think that’s true for all of us. If we can just let go of all these things that we’re hanging onto day-to-day that we’re so afraid people will judge us by and just show up as the great humans that we are, we’re going to be so much more powerful.
Dr. Rob Garofalo: I agree. I even think that’s true in raising money for the work that we do, right. In philanthropy circles I think my authenticity has really been effective in forming connections. And, again, people don’t just want to give money to people that do good work. They want to give money to people that inspire them and it’s very difficult to inspire people if you’re not being authentic in what you do each and every day.
Dr. Angela Kade Goepferd: Right.
Dr. Rob Garofalo: That ability to inspire only comes from a fire and from a passion that can really only exist if you’re doing something in the pursuit of something that feels real and authentic to you.
Dr. Angela Kade Goepferd: Speaking of things that feel real and authentic to you, you have such a passion for working with teenagers and young people and I know that there are people who are going to be listening to this podcast who bristle a little bit every time they walk into a room with an adolescent or a young adult. I wonder, what advice would you give or what has been the key for you in successfully connecting with an adolescent population?
Dr. Rob Garofalo: Yeah, I mean, I think in some ways adolescents are this mythical creature that people tend to be afraid of and I don’t really get it because I’ve always had this affinity for this age group, in part, I think, maybe because my own adolescence was such a struggle and I had so many formative experiences during that time that I really do think led to the career and the career path that I’ve chosen. Similar to what we’ve been saying through this entire podcast, the most important thing you can do or be with an adolescent is authentic. I mean, if you’re not funny, don’t try to be funny. If you’re not up on all the street lingo don’t try to use it. If you’re a nerd you can embrace your nerdiness and have that really work for you. I mean, adolescents can sniff from a mile away if you’re being unauthentic, right, and so the number one thing you can do is just be honest. If they use a term you don’t know, ask them to explain it, you know?
Dr. Angela Kade Goepferd: Yeah.
Dr. Rob Garofalo: I think the biggest mistake that clinicians make is trying to belong in adolescent culture as opposed to just observe it and be part of it, right. You don’t have to be an adolescent in order to connect with an adolescent, you just have to have a sense of wonderment which I think is what I have when I’m talking to teenagers, just the sense of wonderment for who they are, what they bring to the table. That last piece, I think, is really important. In order to do this work well you have to believe in your heart that adolescents bring something to the table and have value in every discussion. And if you can really own that piece and believe it I do think that opens up worlds for you. Far too many people discount, discard, forget that adolescents really are very smart and thoughtful and empathic and powerful people that should be part of the decision makers in this field, not just put aside to be, like, on community advisory boards.
Dr. Angela Kade Goepferd: Right. Right. You know, I couldn’t agree with you more and one of the things that I’m always struck by in my work with teenagers is they’re really good at sniffing out people who are trying to sort of pull the wool over their eyes. They have such a unique perspective on the world that is not quite as jaded or as hardened as many adults but yet has lost some of that wonderment of young children and they’re at this sweet spot of witty observations that I just find to be really enjoyable and engaging. I feel like I learn from them probably much more than they learn from me in how they see the world.
Dr. Rob Garofalo: I mean, completely. I think the other thing in our field, particularly with transgender adolescents, the parents are also really amazing and that’s an aspect of this work that I didn’t think I would love but it’s some of the most rewarding work that I currently do. When I can take a questioning or even unsupportive or unknowing parent and work them through the stages of change model to get them to understand how important it is to accept their child for their authentic selves it’s such a powerful thing. And similar to the education that we don’t get, parents don’t get an education about how to do this with their kids and so for me, they are the heroes in this work, right?
Dr. Angela Kade Goepferd: Absolutely.
Dr. Rob Garofalo: The parents who show up for their kids day in and day out without a roadmap, without a operations manual about how to support a transgender young person, I just think these parents are really incredible humans.
Dr. Angela Kade Goepferd: I couldn’t agree more, Rob. That’s my favorite part of doing this work and often I’ll have pediatricians in the community say to me, “Well, I have a transgender kid that I’m caring for but the family’s not ready to come to the clinic yet.” And I always say, “No, they are. They don’t need to be ready for any kind of anything. They just need to need help and then they can come to us and then we can help them.” That is what we’re here to do because I agree with you, it’s some of those really early stage conversations with families that I find to be the most rewarding in doing this work.
Dr. Rob Garofalo: Yeah. I mean, you have to work for an institution, and I know we both do, that will allow you to plan to do that. And as the division chief I get to decide sometimes how I spend my time but a few years ago I once spent three hours with a family because that’s what they needed in that moment to just get the education that they needed. They had never heard the word transgender before, they didn’t even know what it was like to embrace their child with any semblance of authenticity. Watching parents change alongside watching their children grow into their own in some ways is also really powerful.
Dr. Angela Kade Goepferd: I heard you speak at the University of Minnesota about five years ago and after your presentation one of the audience members said, “So what can we do to help transgender teenagers?” And I’ll never forget your answer, in part because I’ve just stolen it and I use it in all of my presentations now, but what you said was, “What trans youth need more than anything else is culture change.” And I could not have agreed with you more then and I could not agree with you more now. Can you expand a little bit on that answer and then maybe close us out with how you’re navigating and making sense of what’s happening right now?
Dr. Rob Garofalo: I think we need culture change to accept that being transgender is not an affectation. It’s a normal part of the human condition that deserves being cared for and loved and appreciated much the way we would care for any other adolescent or young person. If you would’ve told me five years ago that this is where we would be in the United States or even in the world with regard to this population, I’m honestly not sure I would’ve believed you. The current erosion of civil rights and health care rights for trans people is… I used to say it made me sad but it no longer just makes me sad, it makes me angry. We do need a lot of culture change in order to begin to see that these young people and their families matter, that they are not in any way pathologic, that they are loving and caring people that are deserving of the highest quality of healthcare that’s wedded in principles of public health and science and not thinly veiled attacks couched in sort of weird religious and cultural mores.
I also think systems, what I probably meant back then is systems change, right, we need to be hiring transgender people in all aspects of the hospital not just for programs that care for transgender people. We should be advocating for trans people in all facets of society so that they can benefit from elements like upward mobility and socioeconomic stability in ways that I think is often elusive for them because that’s where I think cultures really need to change. You know, when clinics contact me about like, “We’re not seeing a lot of transgender, young people, what can we do?” I’m often like, “Hire one. Hire a transgender young person to be part of your program and then you’ll see that maybe you’ll be able to reach more.”
Dr. Angela Kade Goepferd: And I do think what happened, we did get some of that culture change that you were advocating four or five years ago and there was an increased visibility for trans people like we never saw. Then there was just enough of a spotlight that the trans community and particularly our trans kids became the targets of these attacks and this backlash that has just really, like you said, eroded the rights and really the ability of kids to thrive, which is the thing that breaks my heart every day. And I’m sure you hear the same stories that I hear of parents and kids who are scared. I can’t emphasize to people enough these are parents and kids who just want to live their lives. They just want to be themselves. There’s no attached political agenda to what they’re trying to accomplish. They want to go to school. They want to live.
Dr. Rob Garofalo: My political agenda is make sure a transgender, young person becomes a transgender adult, right, that’s my political agenda. But let’s be clear. This isn’t about health care or science. This is about political power, right?
Dr. Angela Kade Goepferd: Yeah.
Dr. Rob Garofalo: This is about that efforts at gay marriage failed. This is about that efforts around bathroom bills fell flat. These are that issues around locker room use fell on deaf ears. And so the political or cultural right was looking for a wedge issue and they believe they found it and they villainized pediatricians and they’ve criminalized these parents.
I think this is a blip. I honestly think this is a vast overreach of legislative power. I really don’t believe that three years from now we’ll even be talking about this. I have to hope that that’s the case because I have to believe in basic human decency. Pediatricians are amongst the most beloved people in society and they think we are kind and meek and gentle, and we are, and we can be all those things, but we will also fight for the rights of our patients in ways I think these legislators didn’t anticipate. I think they thought transgender kids were also an easy target. They didn’t vote. They couldn’t fight back with the voice that, let’s say, gay men did during the HIV epidemic of the ’80s but what they didn’t count on is, again, these parents who are going to fight for the rights of their children with a ferocity that they wouldn’t even fight for their own rights.
Dr. Angela Kade Goepferd: No, absolutely, and I am really hoping that we will find ourselves in a different place when we have a conversation about this three years from now. One thing that I know is that every step along the way you will be there advocating for kids and for families and I can’t thank you enough for doing that work and for being the trailblazer that you are. Thank you, Rob, for joining me today on the podcast. It was really my pleasure to have this conversation with you.
Dr. Rob Garofalo: It was my pleasure, right back at you. This was really great, and thank you.
Dr. Angela Kade Goepferd: Thank you for joining us for Talking Pediatrics. Come back each week for a new episode with our caregivers and experts in pediatric health. Our executive producer and showrunner is Ilze Vogel. Episodes are engineered, produced, and edited by Jake Beaver. Amy Juba is our marketing representative. For more information and additional episodes, visit us at childrensmn.org/talkingpediatrics, and to rate and review our show, please go to childrensmn.org/survey.