Jade Pagkas-Bather, MD, MPH is a faculty and researcher with the Section of Infectious Diseases and Global Health. Dr. Pagkas-Bather is the first recipient of the Third Coast HIV-related Cardiovascular and Sleep Disorders K12 Career Development Program at the University of Chicago. She is the most recent addition to CCHE’s team. Coming to Chicago from working in Seattle, Dr. Pagkas-Bather has experience both in HIV/AIDS and in fieldwork surrounding survival skills in street youth in Tanzania. Her interests range from the anthropological elements of medicine to homelessness to peer navigation for PrEP use. Maya Osman-Krinsky sat down with Dr. Pagkas-Bather at the end of her second week at CCHE to talk about her background, experience, and interests going forward.
Maya Osman-Krinsky: So, we already started talking about it a little bit, but can you tell me about yourself, your educational and professional background?
Dr. Pagkas-Bather: I feel like I haven’t had a ton of professional life yet because I’ve been in so much training. But, I went to Yale and was an anthropology major, and after graduating got something called a Parker Huang Fellowship, which is Yale’s equivalent of a Fulbright, and did research on the lives and survival skills of street youth in Arusha, Tanzania, which is on the Kenya-Tanzania border. Really fascinating, more fieldwork, so I’d talk to children – there were a lot of centers for street youth in East Africa because it’s such a big social issue, a lot of kids end up on the streets because it’s actually more financially lucrative for them to go and beg, or get small jobs and get food and money on the street. And sometimes they’ll bring that back to their family and sometimes they are totally on the street, whether they had difficult interpersonal relationships with their families or other social things that they’re navigating. Sometimes families are so poor that they couldn’t support another kid, so there are lots of interesting reasons for why they were on the street. And I think my time in Tanzania, which was about a year, made me realize that there were still anthropological aspects to medicine that were really fascinating to me that I could still pursue in some way through the practice of medicine. And in fact, maybe medicine would be benefited by someone who actually cared about the sociocultural nexus and not just the biomedical parts of things. I also thought that through medicine I could find my way to create something that felt more tangible, as opposed to purely academic, and thus I embarked on that path. I ended up in med school here in Chicago – I’m a Chicago native – so I came back after Tanzania, did post-bac which prepared me for medical school, then did medical school at UIC. And really, the entire first year, I really questioned my decisions, like “why am I here?”and I think that time outside of the classroom had really opened my mind in this way and made me feel like being in a classroom was dull compared to the work that I was doing. I liked having more of a self-directed life, which I could have when interviewing street kids on the street or teaching impromptu English classes at centers for street youth, but by the time I got to the second year of medical school, I started enjoying more of the content because it was more problem-based, which I found to be more interesting than, say, memorizing chemical pathways. And then by the time I got to the third and fourth years of medical school I really liked it because there was really patient contact, and I felt like I was really getting back to the anthropological roots. And I also found my niche in terms of organizations – UIC had started something called the Service Loaning Program, and I was in the homelessness concentration, and we volunteered at Cathedral Center, and we would put on health fairs for the residents of the center, and ask them what they needed so we could design a curriculum and other stuff surrounding that. And I thought that was a really good model to interface with the community and ask them what they need, as opposed to being like, “Hi. I’m a med student, this is what you need,” or “I know better than you about this”, when in reality you don’t. And it was really humbling, too, because for me, the obvious thing is that a homeless person is a person without a home, but I think a lot of people have all these preconceived notions about the “kind of person” that is homeless, and I think we got to really talk to people living at Cathedral Shelter and see that they all had these really complicated lives that led them on a path that took them to homelessness, but it’s far more complicated than what people like to attribute homelessness to.
MOK: So, do you see that that attitude approaching people who are living with or in a certain condition with a lot of preconceived notions translating over into HIV/AIDS? Like, this kind of person gets HIV, this is how their life has been, even if you have no idea who they are.
JPB: Yeah. I totally agree with that. I think also, as a minority, there are a lot of people who just look at me and decide in their minds that this type of person is like that. So I think there are certain advantages to having a slightly marginalized identity that allows you to take that step back and tap in and say that there’s a lot more beneath the surface than what we’re seeing, and I think the same could be applied to patients with HIV. They’re just people who, in many cases, have so many complicated reasons for HIV transmission that you can’t really peg someone as a “type”.
MOK: So, going back to what you said about approaching medicine from a more anthropological perspective, I feel like that conversation has been happening a lot lately — all of a sudden medical schools are having panels with humanities professors coming and talking about different ways to approach medicine, especially the patient-healthcare provider interaction, so how do you see that trajectory of progress looking?
JPB: So I think that’s really what I was looking for in medical school and I was really not finding it, except for in the ID community. I think people who were practicing ID in the 80s, so before I was born, and after, they were knee-deep in the trenches of the AIDS epidemic. And I think that baptism-by-fire during that era led to a lot of people who were seeing these patients and having a lot more empathy and respect for the complex social circumstances that contributed. And obviously, the way people were perceived after their diagnosis, and the types of things that were thought and said about them as a result. I think that we are moving more into a phase where multidisciplinary learning and approaches to lots of different things are really taking off, and I don’t know if it’s because we’re so much more tapped into technology that we can email and collaborate with people across the world, but I think there is slowly becoming more of an awareness and cultural shift around looking at social determinants of health and how someone’s social context contributes to their health outcomes.
MOK: So then how did you end up in ID?
JPB: By the time I got to medical school, I knew I wanted to do ID. Before I ever did this project with the street children – well, two things. I grew up in a gay neighborhood in Chicago, so I knew people who died from AIDS, to be quite frank, in the 90s. So for me it was sort of like, “these are my neighbors, these are people in my neighborhood who are dying from this,” and from my child perspective, these were just people who died, and AIDS happened to be the cause. So I was primed in that way to be attuned to it, and then when I was seventeen, I went on a trip to Kenya, so way before the street youth days, and I visited an AIDS orphanage. So these were children whose parents had died of AIDS and they were also HIV-infected, and I remember thinking to myself, I have to do something to help their parents. Which is an odd thing to think about. I sort of knew that I didn’t want to be a pediatrician but I wanted to get at the root of the problem, which seemed to be the parents. How do we stop this in the parents? So I went into medical school thinking I wanted to do something having to do with HIV and infectious diseases and having no idea that first you have to go into Pediatrics or Internal Medicine, then you have to sub-specialize. But I ended up really liking adult medicine and not so much liking pediatrics, and I knew I didn’t want to be a surgeon, so internal medicine fit for me, especially for someone who is very process-driven and likes algorithms and thinking through complex problems in different organ systems, it made a lot of sense. And then going into infectious diseases also made sense for me because it’s another discipline where I don’t have to pick an organ, like, you can be infected in any body part. So I ended up going to do my residency also here in Illinois at MacNeal Hospital in internal medicine, and then after three years there, I went to the University of Washington to do my infectious disease fellowship, where all the while I thought I was definitely going to do global health. I had all these amazing mentors picked out who did PrEP work for HIV prevention and they were these big global players like Connie Celum and Jared Baeten. So I got to the University of Washington, I really liked working with them, or talking with them, and I helped write a manuscript for another ID doctor out there as well, and then I had a kid. And had this shift where I was like, there are problems here, I don’t want to leave my kid who is three weeks old and go to Uganda for two weeks, and luckily I had also been working on a domestic project with Susan Graham, also at the University of Washington, that was trying to assess acceptability of Latinx and Black MSM towards peer navigation for PrEP use. So I had this project cooking and was going to meetings about this international project and then I realized I needed to actually reroute a little bit and went totally in the domestic direction and got two other mentors who do big public health HIV stuff. And I started working on a PrEP project with them, and I’m still finishing that manuscript and cleaning it up, and that’s what led me to now. But another thing about ID that attracted me is that I think the kinds of people that go into infectious diseases are generally globally-minded people who are sensitive about the social determinants of health, and we clearly do not do it for the money, we do it for the love. We would make more money as internists, so we wouldn’t even sub-specialize, so a lot of people who go into ID really care about it and really want to do it, whether that’s hospital epidemiology or antibiotic stewardship or HIV medicine or transplant. They’re all-in and really serious about it, so it’s pretty collegial. It’s a small community of people that do this, we’re sort of hippie-weirdos. They do this thing where they rank conservative values by specialty, and ID ranks among the lowest along with psychiatrists, so it may be also correlated to pay (laughs). But yeah, when you think about what you want to do, being around the kinds of people who feed your spirit and are like-minded in ways that are important to you, it’s really nice to be amongst people who share certain values about human life.
MOK: Were there any notable differences between your work in Washington and your work here?
JPB: So I’ve just started to do work here – I got here on September 3rd – but my work in Washington included Latinx individuals and here it’s more on Black MSM. Additionally, I had included transgender folks in my work in Washington and I think I will incorporate transgender folks, especially transgender women, in my work here, but I’m currently not quite there. I think the other thing that is also very different is that Chicago is a city that is far more racially diverse than Seattle and the surrounding counties. So the same recruitment challenges are not as big of a deal as they were in Seattle.
MOK: Do you see a lot of relationships between your work in Tanzania and your ID career?
JPB: I think the practice of talking to people and relating to them on a very personal level and listening. The listening skills from that project were really valuable. So I was conducting these interviews all in Swahili, which is not my native tongue but is a language that I speak. And I had to write some things and also record, so paying attention for language reasons and really not wanting to interrupt, but also feeling privileged that I’m being trusted with some very personal information from very young people, children as young as ten and up to teenagers and grown individuals who were formerly street youth. I think certainly when you practice any sort of infectious diseases but particularly HIV and sexual health-type medicine, you end up learning about some very intimate details of people’s lives, and certainly I did that on the streets of Tanzania, too. These kids had very graphic and intense violent and sometimes sexually violent encounters, so to be privy to that kind of information requires a certain sense of sensitivity, and I think that process of talking with people and being a listener has served me really well. I think there are definitely parallels and I think sometimes – HIV patients can be anyone – but a lot of the patients that I’m more interested in from a research standpoint tend to be more marginalized, whether that’s socially, sexually, or economically. I think you see that also in the population of street youth. This is clearly a community that exists on the margins and has less access to things, and rights, and there are a lot of structural barriers to wellness, so I see a lot of parallels in both.
MOK: In terms of the language component, how was the experience of doing interviews about such a sensitive topic in a language that’s not your first?
JPB: So I had studied Swahili all throughout Yale, I took all of the existing classes there and then invented my own Swahili Socialist poetry class, which I took with one other person. So I felt like I had gotten to the point of proficiency, I made all my surveys and I had this amazing Swahili professor look over my surveys, I got the go-ahead, and by the time I was doing interviews I felt pretty proficient in the language, to be able to be understanding and conducting these interviews. Since I had actually been to Tanzania in my junior year for a different project, I knew people who could help me transcribe, so that really helped. But I think that listening to people in your non-native tongue also requires a certain amount of concentration and real patience, but I don’t feel like a lot was lost in translation.
MOK: Did you ever work with a translator?
JPB: No, the person who did my translations for me was a person who took my tapes and transcribed them, but I never used a translator.
MOK: So that must’ve also increased the trust between you and the people you were interviewing, like there isn’t a third person in the equation.
JPB: Yeah. I often did them with other street youth, so most of the process was me either taking a youth out to lunch during the day – so all of my interviews were done in exchange for meals, either peanut butter sandwiches on the street, but the best was when I interviewed kids in restaurants, because it was quieter. And sometimes I would have an older street youth from one of the centers I was teaching at accompany me, and they would also get a meal, and if there were any technical issues with language they helped, but mostly it wasn’t an issue.
MOK: Did that problem of translation issues ever surface when you were in Seattle?
JPB: The work I did in Seattle was primarily online survey-based, so it didn’t really involve a lot of interfacing with people directly, although in some instances there would be people who were homeless or didn’t have access to a computer taking our surveys so they would take them in person, but they were reading the survey. I would answer questions if someone didn’t understand something but mostly it was a little more hands-off.
MOK: I’m just thinking about patients who come into a healthcare-seeking encounter with limited English proficiency. Or often if there isn’t a translator available through the hospital they’ll bring someone with them like a family member to help translate. But what do you do if there is no family member or if someone who is HIV positive doesn’t want to bring a family member to the appointment?
JPB: I actually had this happen a lot when I was in Seattle. There are actually a lot of patients from the Horn of Africa who are resettled in Seattle and surrounding counties. So I had a lot of patients from Eritrea, Ethiopia, Sudan, come to clinic – and not just HIV clinic, ID clinic too – and I saw patients from Laos, patients from Samoa, Marshall Islands, it was really cool. Some of my patients from Ethiopia and Eritrea would not be excited about using a translator, but I would say, “I really think we should use a translator here, because what I’m telling you is really important and I want to understand everything that you’re telling me.” Because it can be complicated, right, if you just emigrated from Ethiopia and I’m putting you on a totally different drug regimen, because Ethiopia doesn’t have some of the same drugs that we are currently using as first-line, you need to understand what is a CD4 count? What is a viral load? How often are you taking these medications? Or to stop the ones you’re taking when you run out, or we’re switching you to one pill once a day or two pills a day instead of three or four pills. And people were pretty receptive to that message, of being like, “I want to understand you and I want you to understand me.” And I think the other piece of it is that a lot of patients from different cultures still really revere doctors, and if you say that something is important for their well being they’ll probably be like, “Right. I should probably listen to you about that.” So I think that was really helpful. And in residency, my Spanish was good enough to do some physical exams, but I don’t speak Amharic or Tigrinya or Kunama, even though a lot of patients would assume that I did based on the way that I look, so there’s just no way ethically I could do this without a translator.
MOK: Was that something that was ever talked about in medical school? The process of using a translator or interpreter?
JPB: It was talked about and it was stressed that it should be done, but as a medical student and training onward, I’ve seen many times where translators were not used because there was a time crunch or it wasn’t easy to do or there wasn’t a phone, and people kind of wing it! But it’s really scary, actually, because I don’t speak Mandarin, for example. And if I walk into a room with a patient that only speaks Mandarin, I feel like I’m doing a huge disservice to you by being like, I hope you kind of understand what I’m saying if I exaggerate it or I’m being really slow or loud, like that’s not the same as actually communicating what’s happening.
MOK: Especially with something where you really have to pay attention to medication and follow-up and getting tested.
JPB: Yeah. Or you’ll be in rooms with people who have very ill family members who can’t themselves speak to you in another language and you need to best represent the needs of this patient and connect to the family. The translator can be an invaluable bridge –
MOK: Or cultural broker –
JPB: Yes. And it’s really important to engage with that person and the practice, even if it takes longer. And it does. It might be taking three times as long but it’s medically and ethically… even if you hate everyone on the planet but you don’t want to be sued, you should probably use a translator.
MOK: In terms of beginning your time at CCHE, what are some things you’re looking forward to or expecting or excited about?
JPB: What I’m most excited about is doing community-based participatory research. So very community-facing. I’m excited about working at Howard Brown to engage more with the community, and even here at the clinic in DCAM, my understanding is that even uninsured patients who had come in with STDs in the ER get referred to the clinic, so I’m really excited to see those patients, even if I end up seeing them later on at Howard Brown. And I’m a North Sider, but I think that the culture and history of the South Side of Chicago has been historically a very rich environment, and it has a complex relationship with the University. So to really stand in the middle of that and be the translator or the cultural broker between the two entities is exciting for me and complex. But I think it’s really necessary for clinicians and researchers to lead the charge because this is an environment that has benefited richly from being on the South Side of Chicago and seeing patients who have really complex medical histories because of the structural inequality that being on parts of the South Side has engendered for their lives. So if I can have a role where I have one foot in the University and one foot out, that is something that excites me, to be the glue or bridge the gap in some way. And obviously it will take far more than just me to do that, but to be a part of an organization that sees that as a part of their legacy for the University is exciting for me.
MOK: What are some ways that that can happen?
JPB: The work that I proposed to do here is looking at associations between sleep quality and PrEP adherence, and it’s also looking at how to best deliver PrEP to Black MSM. Like the modality of you picking it up. Do you want a pharmacy-based clinic or a mobile unit in your neighborhood or a mail delivery system? How can I eliminate a barrier is one of the questions for me. But I think that most importantly it’s the process of asking the community, “What do you need?” as opposed to me wearing my white coat and saying “You know, you really need PrEP, and this is why, and you are “at risk” and you do “risky things”, etc. etc.”. I think that doesn’t really help anyone, and for a really long time medicine and research has taken a paternalistic role with lots of different types of communities – women, minorities, people with disabilities, sexual minorities, people who are gender nonconforming – and it’s really not for us to take this dictatorial role, so can I peel the layer back and before I delve into the thing, I want to ask first what will be best recieved by the community. And then can we test that out, and if it’s successful, does it have the potential to impact policy? If I find that the vast majority of people want a mobile PrEP delivery unit and I can present that data to CDPH, does that lead to an influx of mobile unit PrEP vans on the South Side or the West Side of Chicago? How do we take the community request and preferences to the next level?
MOK: That’s really exciting.
JPB: That’s the dream. I don’t know if it’ll work out but I feel like, if I’m not going to get as close to the sun as possible, what’s the point?