Improving Global Adolescent HIV Care with Robert Garofalo, MD

• Growing up in suburban New Jersey, with his Italian immigrant family, Garofalo’s parents instilled in him a deep sense of the value of education and service.  He was always drawn to pediatrics as it was his natural inclination to work with youth and make a meaningful impact in healthcare.
• Throughout his more than 25 years as a pediatrician and researcher he’s been funded by both the CDC and the NIH and has been the principal investigator on 20 separate research grants and a co-investigator on more than 30 additional research projects focused on HIV prevention and care in sexual and gender minority populations in the U. S. and globally. 
• An important research project included the TXTXT program, which uses text messaging to successfully help HIV-positive adolescents adhere to their medication regimen.
• The global part of his career journey only began a decade ago and blossomed when he met Dr. Babafemi Taiwo, who was then the chief of the Division of Infectious Diseases at Northwestern. Taiwo helped inspire him to bring his research expertise and the TXTXT program to Nigeria.
• The program was wildly successful in Nigeria. Garofalo says over the course of a couple of years they identified and tested almost 5,000 young men who have sex with men, of which almost 10% tested positive and 50% of those young men had never tested for HIV before. The research team was able to connect almost 100% of those who tested positive to care within the first 30 days.
• Despite entering the global health space later in his career, Garofalo says this work has become an important part of his life. He hopes through his work in Nigeria he will also be able to create research opportunities for scientists there as well and “not just consume the oxygen in the room, but maybe create oxygen for others.”

[00:00:00] Dr. Rob Murphy: Welcome to the Explore Global Health Podcast. I'm Dr. Rob Murphy, Executive Director of the Havey Institute for Global Health here at Northwestern University Feinberg School of Medicine. Today's guest is Dr. Robert Garofalo is a clinician, researcher, and pediatrician at heart with more than 25 years of clinical and research experience in HIV, HIV prevention, and sexual and gender minority health. Global health research was not on Robert's radar until about a decade ago when a series of events sparked a passion for global health that is thriving today. We welcome Rob to the show to talk about his career journey and his uncharted pivot into global health. Rob is the Division Head of Adolescent and Young Adult Medicine at the Ann and Robert H. Lurie Children's Hospital, Chicago. And he's Chief of the Adolescent and Young Adult Medicine in the Department of Pediatrics here at Northwestern University, Feinberg School of Medicine. Welcome, Rob.

[00:01:06] Robert Garofalo, MD: No, thank you so much for having me.

[00:01:08] Rob Murphy, MD: Take us back to the beginning. Before you attended Duke University for your undergraduate studies, and then you went to medical school at NYU and earned a Master's of Public Health from Harvard School of Public Health, you were a teen growing up in suburban New Jersey. How did your early years influence your decision to go into medicine, and specifically pediatrics?

[00:01:28] Robert Garofalo, MD: First of all, I come from an Italian immigrant family where I like to say my parents who were both educators, both my parents were public school teachers, they sacrificed a lot so that their children could have things that they didn't have. So, ingrained in me early on was an investment in education and hard work and service. My parents were not enthusiastic about me becoming a public school teacher, but they were very enthusiastic about me pursuing sort of health sciences and becoming a physician. And I think pediatrics, for me, was just a real natural choice in terms of, Dovetailing on, on my parents interest in children and adolescence, and it, passed on to a generation to me. I've always really been interested in working with children, and in particular adolescents. And so pediatrics, I think, was a real natural fit for me.

[00:02:15] Rob Murphy, MD: You came to Chicago in 2001 after some time at Boston Children's Hospital and immediately began making an impact here in Chicago to provide better access to healthcare for LGBT youth. Tell me about the move to Chicago and the clinical and research projects that you've established here.

[00:02:32] Robert Garofalo, MD: at the time Lurie Children's didn't have a division of adolescent medicine. They didn't have much infrastructure. And so I proposed building this sort of collaborative relationship between Lurie Children's and Howard Brown Health Center at the time, which is where I worked in collaboration between the two organizations for probably the first decade of my career. And I loved it. I actually loved that community connection. I really loved having both the benefits of being part of academia, but also being embedded really within a community based center. And so the research that I developed early on. It was really first about better understanding the lives and the health risk behaviors of L-G-B-T-Q youth or sexual gender minority youth. And then, once I did some of that early exploratory research, I really focused my career on intervention development, either around HIV prevention interventions for young gay men, or really, one of the first people to develop HIV prevention interventions for young transgender women. And so intervention development around sexual gender minority populations and, simultaneously developing programs that really dovetailed on those early research projects was the thing that fueled me early on in my career.

[00:03:47] Rob Murphy, MD: Yeah, Northwestern has a long standing relationship with the Howard Brown Medical Center. I've worked with them on a variety of projects over the years, and we've had a lot of interaction with the back study, and very rich, uh, and productive history.

[00:04:02] Robert Garofalo, MD: Combining the academic might of an institution like Northwestern with some of the community based resources and some of the challenges in doing that well, I think is really recognizing what, what both institutions need from you, right? Which is not feeling like you're just a part of Northwestern or Lurie, but really ensuring that the folks at Howard Brown and those community members also felt and believed and knew that I was committed to the work that I was doing there.

[00:04:30] Rob Murphy, MD: I understand now that you co-direct the Lurie Children's Gender and Sexual Development Program. Could you talk a little bit about that?

[00:04:38] Robert Garofalo, MD: I like to think of my career as I've been in thirds, like the first third that we were talking about is, was really focused exclusively on LGBTQ youth and, and HIV both clinically and from a research perspective. And then in about 2011, 2012, I really began to critically think about particularly the young transgender women that I was seeing that were acquiring HIV at such younger ages than even the young gay men or other demographic groups that I was clinically seeing. And I really began to think about What were interventions or what were things that we could do for that population that could mitigate or minimize risk? And I really believe then what I believe now, which is early medical intervention treating young transgender, gender diverse individuals, potentially with gender affirming hormones, again, fully with parental consent and, exploring with them in detailed conversations, what we know and what we don't know about such interventions. I really believed that affirming particularly these young women, young women of color at earlier ages was one of the approaches to helping to sort of mitigate the HIV epidemic that we were seeing in that population. So I founded the Gender and Sex Development Program at Lurie Children's, which was a comprehensive interdisciplinary care program for gender diverse children and adolescents.

[00:05:54] Rob Murphy, MD: many successful research projects are the personalized text messaging intervention program you have called TXTXT. You and your colleagues at Lurie developed this protocol to help HIV positive young people take their antiretroviral medications. Can you tell us about this program? I understand it's been quite successful.

[00:06:16] Robert Garofalo, MD: It's one of, I think, four or five interventions that our team has developed at Lurie that has been designated by the federal government as an evidence based intervention, and I think it might have been our first and it really was a, it's not rocket science, it's a bi directional guided text messaging reminder system to help young people living with HIV better adhere to their medications, and honestly, to be honest, I'm HIV positive, and it came out of my own lived experience of like what things might help me, actually successfully take my medicines. And so the text messaging reminder idea was born out of my own personal and clinical experience and it proved to be a really useful, practical sort of relatively low resource intervention that then had a lot of legs and that it was, it really showed a pretty large effect size. So it really helped the young people that it was aimed at, at targeting.

[00:07:08] Rob Murphy, MD: Can you tell us how big of an effect?

[00:07:09] Robert Garofalo, MD: I mean the effect size was almost double for the young people, at least initially in the US, that we developed the intervention for. They could design their own messages. So, the way the text messaging intervention worked is they would work with case managers that were intrinsic to the clinic. Thinking about who might be able to look at their phone or might see a text message. So we focused on ensuring that they had adequate confidentiality and, and they would then design the message and the timing. And if they took their medication, after they got the message, they would get a randomized reinforcement message, like attaboy or you did great. Or, you know, you know, like, and and in some ways because it was a randomized message, it felt like to the participants that somebody was actually communicating and interacting with them. And so that feedback loop, and if they didn't successfully take their medication, they would get an affirming or positive message like, okay, you can do it tomorrow. You got this. And the young people design the messages themselves, which has been part of the success. Also, when we've pivoted to do it in global settings was to allow sort of a local adaptation of the intervention.

[00:08:17] Rob Murphy, MD: That's, that's really great. It's challenging with adults to take their medicine, let alone adolescents and children. It's so impressive that you developed that system and that it works so well.

[00:08:30] Robert Garofalo, MD: Yeah, I mean, I think the notion of using text messaging, I think, is underutilized, right? It's not as sexy as, say, an app or some other fancy mHealth interventions, which I've also had the good fortune to work on in my career. But the truth is, unless you invent the Angry Birds version of an HIV prevention app, the likelihood that these mHealth interventions are going to go from a research environment to being used in real life, I think, is relatively low. And so, over the years, I really have taken a step back, I think, even with my own research to make sure that if I'm going to work on something, that it can really be practically applied in clinical settings. And I think text messaging is one of those things, right? It's ubiquitous, everyone looks at their text messages.And so,

[00:09:14] Rob Murphy, MD: Everybody's got a phone.

[00:09:15] Robert Garofalo, MD: Yeah, correct. So that's, I think, one of the strategies.

[00:09:18] Rob Murphy, MD: Your research career has really been impressive and you've been funded by both the CDC as well as the NIH. You've been the principal investigator on 20 separate research grants and a co investigator on more than 30 additional research projects focused on HIV prevention and care in sexual and gender minority populations in the U. S. and globally. The global part of your career journey is what we want to focus on today. I understand that your passion for this work really took off in 2017 when you met Dr. Babafemi Taiwo, who was then the chief of the Division of Infectious Diseases for adults here at Northwestern. Tell me about meeting Dr. Taiwo and his role in bringing your research expertise to Nigeria.

[00:10:02] Robert Garofalo, MD: Yeah, I mean, it's one of the craziest stories in some ways. So I was randomly sitting on a plane on my way to the International AIDS Conference. I want to say it was 2017, yeah, July of 2017. And walking down the aisle of the plane was a colleague from Lurie Children's who looked down at me and said, Oh, two of my favorite people sitting next to one another. And I have. Of course, I did not know who I was sitting next to because I had not previously met Professor Taiwo, but we introduced ourselves and got chatting and on the flight over, I remember him telling me he was from the city of Ibadan in Nigeria and he talked with a lot of passion. I mean, he's, if you've ever met him, he's just an incredibly inspiring person. And he talked about going back to Ibadan, like later in his career as a HIV expert and building this research infrastructure with the D43 at Northwestern and, and he was, again, He's very inspiring. And he talked to me about always wanting to layer on some research work there that targeted young MSM or young sexual gender or sexual gender minority populations, but hadn't been able to find anyone to like, get any traction there. And, and at the time I was thinking, Oh, good Lord, like Nigeria was not on my academic bingo card. As a gay man, it's a criminalized environment there. I mean, I had aspirations of global health, to be honest, if I'm truly honest. I had visions of waterfalls and safaris and, perhaps like beachside resorts, I didn't think of working in central Nigeria was going to be where I was headed, but. He invited me at the time to come and give a lecture on our TXTXT intervention there as part of his Fogarty. And honestly, it was a few months later, it was in October of 2017. And as the time approached, I have to say, I told a number of my friends listen, I'm one and done. I'm going to go there. I'm going to give this lecture and I'm out, right? This is not. Where I really want to be. I had a lot of personal feelings about being somewhere in Nigeria. Mind, mind you, I'd never been there, which I think is, part of the, the key to being open to these things when you're doing global health. And so when I went and I gave the lecture Babafemi did something I'd like to think was really smart, which is he convened a group of young men, young gay men, who were living with HIV to tell me their stories. And I remember that we sat. kind of in the dark, really. I mean, we were at a clinic, it was a quiet clinic room, and we were staring at one another, me and these men, for what felt like, an insufferable amount of time. And I remember turning to  Babafemi and saying, Can I just tell them that I'm gay and I'm HIV positive? And he was like, I don't know. I don't know what would happen if you do that. And so at one point, I just sort of You know, dove in and I was like, listen, I don't know if this is going to freak you guys out or what, but I just try to move this conversation along and I just want to tell you that I'm HIV positive and I'm a gay man. Literally I don't want to say the floodgates opened, but it was this moment of connection for these young men who probably had never met anyone from the U. S. that had identified as either one of those two things. And we had this amazing conversation about their lives and their challenges and how difficult it was living in Nigeria.And I remember that these three young men the next day came to my lecture. I have pictures of them with me after I gave the lecture. And that evening we were sitting at dinner. I opened my phone and this RFA came out from the NIH, from the N-I-C-H-D for this newly funded patch initiative, which was to do HIV prevention research in low and middle income countries with adolescents.And I looked at Babafemi and I was like, we could do this, and I think he looked at me like, I don't know you, and honestly, in some ways it was. Breaking a bit of a cardinal rule I have for research, which is like to date before you get married, if you're going to jump in, in the pool, know who you're getting involved with, but it just felt. Right. And I also told these young men and I, sometimes I get emotional when I tell the story because it's, it's not just the professional, it, it, it is personal for me. I remember telling these young men at the time listen, I, I really appreciated you sharing all that about your lives and, and I don't know how, and I don't know when . But I'm going to come back and I'm going to try to help, whatever I can do be helpful. And anyway, we wrote that application. I came home. I partnered with a dear friend and colleague in Lisa Coons here at Lurie Children's who has just been an incredible partner. And Babafemi and I and his team, I mean, we just never looked back. We were lucky enough to be funded by the NICHD. And the project has really evolved to be one of the most, if not the most meaningful thing that I've done in my career, and it's, and I've not, it's not like I haven't had a career full of meaningful moments, but like this work with these young men and with HIV positive young people in general in Nigeria has just proven to be so important. And I, as we're talking, I, I look up in my office and there's one of my most prized possessions, which is on the wall, which is a painting that those young men back from 2017 painted for me that they took a picture of me with my dog off, off Facebook and they painted it for me and they sent it as a thank you gift, I have it on my wall as a reminder because like, these men, their day to day lives is such a struggle and yet it meant enough to them that somebody cared to listen to them, that they took the time to like paint this painting for me and send it to me and it will honestly forever be like one of my most prized possessions because it's not lost on me its significance and its importance.

[00:15:56] Rob Murphy, MD: Oh, that's incredible. Having someone like Babafemi with the connections and the ties to the team and the work there to be able to implement such a study. And I feel like, I hope he learned a little bit from our team, but I know that we learned like a tremendous amount from him and I will forever be grateful for the opportunity that he gave us to do this work. Well, Nigeria is a lot of people don't realize it. I mean, it's not a touristic country. You don't just go to Nigeria just to visit. But. Nigeria is the largest country in Africa, most populous, growing. By 2050 it will probably have more people than the United States has. It has oil, it has resources, and it is the most academically and intellectually advanced among its peer nations in Sub Saharan Africa.The last I heard, when I asked how many medical schools there were in Nigeria, and from, from very important people, high levels in the government, they said at least 36. There could be more, you know, because there's these private schools that pop up and whatever but I mean, they have depth. If you're trying to do any kind of public health initiative in Africa, you cannot ignore Nigeria.Nigeria has the intellectual capacity and it does have resources. So, good for you. So, soon after your first trip to the University of Ibadan, which I've been to many times, you wrote an NIH grant, like you talked about, and I take it this is the ICARE grant? Is this the grant you were talking about? That's an Intensive Combination Approach to Roll Back the Epidemic in Nigerian Adolescents.Can you tell us a little bit about that? Did they use text messaging and, how did it, how did it actually work?

[00:17:41] Robert Garofalo, MD: Yeah, so the RFA called for what we call combination interventions, which is sort of combining two different evidence based intervention approaches, and if you know anything about  Babafemi, he is quite ambitious, and we didn't just propose one intervention, we proposed two parallel interventions, and they both combined mHealth and then peer navigation. So we, again, wanted to really develop an intervention that also built some internal capacity for the folks in Nigeria in these clinics. Like we didn't want to do anything that was too heady or esoteric or couldn't be sustained. So we focused on peer navigation and then these mHealth interventions. The first intervention we used our TXTXT, the bi directional text messaging Intervention for HIV positive Nigerian adolescents we started in the city of Ibadan, and then we rolled it out in Lagos and Joss and Shigamu but that was one intervention. We enrolled, I think, over 600 Nigerian HIV positive adolescents, and then the second intervention was using social media outreach.Such as Grinder or WhatsApp or Facebook to engage young MSM who had been difficult to engage in healthcare services and navigate them successfully to HIV testing and then ultimately care if they tested positive. And so I think that was again, the piece of the intervention that was certainly really meaningful to me, wanting to continue my work with sexual gender minority populations, and also pretty, out there, I think, for some of the people that we were working with in Nigeria, right? You know, And it was wildly successful, I mean, the HIV testing intervention over the course of, I think, a couple of years, we identified and tested almost 5,000 young MSM, of which almost 10 percent tested positive, and 50 percent of those young men had never tested for HIV before. And we were able to connect almost 100 percent of them to care within the first 30 days. And so, you talked about the country having resources. I have been just overwhelmed with the quality of our research team in Nigeria. I mean, they have been so committed to doing this work, and one of the things that I think these interventions in particular did, which was novel, was we had these government funded agencies that had to hire sexual and gender minority staff, which for many of these organizations, they just had never done before, in part because of the, the criminalization and the laws.And so I think for some of these institutions, these young men, as an example, were some of the first times that they had hired sexual gender minority staff members in their organization. And we really, in addition to the intervention effects, we also started to see some cultural shifts at these institutions about the recognition of these young people as not only people that are deserving of care, but just better integrated into their clinical systems in general. And so, that was an unexpected finding, I think, for us, but it feels really important to have been able to take on that role? Because for me, the academic research, if it sits neatly on a shelf and it's never used then who's it really impacting?And I, I do really feel like the work that we're doing in iCare is having a tangible impact on the communities that we're working in.

[00:23:02] Rob Murphy, MD: One final question for you, Dr. Rob Garofalo. What advice do you have for young people who are just now embarking or wanting to embark on a career in global health?

[00:21:32] Robert Garofalo, MD: I entered this space at a later point in my career, for many reasons. And what I would encourage people to do is, even if it's in a small way, to, yeah plant those seeds early on in their career and their training to just find a way to have an experience in a global setting. Because, if I'm any indication like that seed can get planted and can grow and, not only have markers like academic success, but honestly, like enrich my life in ways that are profoundly important. And there are a lot of opportunities at Northwestern, right? And so I would look for those opportunities to get connected to teams that are doing this work, including mine, potentially, and try to see if you can, just catch the bug, catch the fever, as I like to say that I did about global health because it's it's just a super important part of my life. I just think in academia it's so easy to get siloed into the work that we do sometimes in domestic settings and I don't know, for me it took having somebody like open up that door and then me walking through the door, right? But those opportunities do exist, right? And I'd like to think that also at this point in my career, I'm someone that hopefully will create some of those opportunities for others, right? Not just consume the oxygen in the room, but maybe create oxygen for others.

[00:22:34] Rob Murphy, MD: I'm sure you will. And with that, I'm going to close our podcast for today. Thank you very much, Rob Garofalo.

[00:22:40] Robert Garofalo, MD: Thank you so much for having me. I really appreciate it. 

[00:22:43] Dr. Rob Murphy: Follow us on Apple Podcasts or wherever you listen to podcasts, to hear the latest episodes and join our community that is dedicated to making a lasting positive impact on global health.