{ "id": "p16022coll534:26", "object": "https://cdm16022.contentdm.oclc.org/utils/getthumbnail/collection/p16022coll534/id/26", "set_spec": "p16022coll534", "collection_name": "HIV-AIDS Caregivers Oral History Project", "collection_name_s": "HIV-AIDS Caregivers Oral History Project", "collection_description": "
The HIV/AIDS Caregivers Oral History Project seeks to document the HIV/AIDS crisis in the Twin Cities from the 1980s-2000s. The collection contains taped interviews with individuals who worked to provide services to HIV+ people and people with AIDS in Minnesota during these years, as well as written interview transcripts and supporting documentation. Interviews were conducted in two phases over the course of three years (2013-2016). Participants included: Linda Brandt, Sharon Day, Brian Goodroad, Dr. Keith Henry, Sister Joanne Lucid, James Maurer, Dr. Michael Osterholm, Dr. Frank Rhame, Lorraine Teel, Rob Yaeger, Roxanne Anderson, Dr. Jason Baker, Scott Bilodeau, Dr. Peter Carr, Jonathan Hanft, Dr. Laura Hoyt, Juan Jackson, Joe Larson, Clint Lende, Lee Lewis, Nick Metcalf, Ephraim Olani, Chuck Peterson, Sue Purchase, Dr. Miguel Ruiz, Karin Sabey, Dr. Ronald Schut, Sarah Senseman, Dr. Alvine Siaka, Bob Tracy, Gwen Velez, Chris Waller, Kevin Winge, and Dr. Monica Yugu.
\n\nThe project's core team included: Emil Angelica (Project Manager), Dr. Peter Carr (Public Health Advisor), Barbara W. Sommer (Oral Historian), Andrea Klein Bergman (Researcher and Report Creator), and Jada Hansen. It was sponsored by the Ramsey County Historical Society and was made possible by Legacy funding from the Arts and Cultural Heritage Fund established by the vote of Minnesotans on November 4, 2008, and administered by the Minnesota Historical Society. [Finding Aid available at: https://archives.lib.umn.edu/repositories/13/resources/2123]
", "title": "Interview with Dr. Jason V. Baker", "title_s": "Interview with Dr. Jason V. Baker", "title_t": "Interview with Dr. Jason V. Baker", "title_search": "Interview with Dr. Jason V. Baker", "title_sort": "interviewwithdrjasonvbaker", "description": "At the time of this interview, Dr. Jason Baker was an Associate Professor of Medicine in the Division of Infectious Diseases at the University of Minnesota and Staff Physician at Hennepin County Medical Center, where he worked with infectious diseases and HIV medicine with a focus on aging patients living with HIV. In this interview, Dr. Baker discusses when and how he became aware of HIV/AIDS and its impact on his decision to go to medical school, his interest in clinical practice and HIV/AIDS research, and his clinical work at HCMC's Positive Care Center. Additionally, he discusses his research, clinical changes needed in the treatment of HIV/AIDS, and possible future changes to treatment options for people living with HIV and AIDS.", "date_created": [ "2015-12-18" ], "date_created_ss": [ "2015-12-18" ], "date_created_sort": "2015", "creator": [ "Baker, Jason V." ], "creator_ss": [ "Baker, Jason V." ], "creator_sort": "bakerjasonv", "contributor": [ "Angelica, Emil (interviewer)", "Carr, Peter (interviewer)", "Bergman, Andrea Klein (interviewer)", "Sommer, Barbara W. (interviewer)", "Billund-Phibbs, Myra (archival processing)" ], "contributor_ss": [ "Angelica, Emil (interviewer)", "Carr, Peter (interviewer)", "Bergman, Andrea Klein (interviewer)", "Sommer, Barbara W. (interviewer)", "Billund-Phibbs, Myra (archival processing)" ], "notes": "Phase 2, 2015-2016", "types": [ "Moving Image" ], "format": [ "Oral histories | http://vocab.getty.edu/aat/300202595" ], "format_name": [ "Oral histories" ], "dimensions": "1:21:40", "subject": [ "Hiv/aids Caregivers Oral History Project Phase 2", "Hiv (Viruses)", "Hiv Positive Persons Medical Care", "Ryan White Comprehensive Aids Resources Emergency Act of 1990 (United States)", "Fund in Need at the Positive Care Center", "National Institutes of Health (u.s.)", "Madison Aids Network", "University of Minnesota", "Hennepin County Medical Center", "Start Trial" ], "subject_ss": [ "Hiv/aids Caregivers Oral History Project Phase 2", "Hiv (Viruses)", "Hiv Positive Persons Medical Care", "Ryan White Comprehensive Aids Resources Emergency Act of 1990 (United States)", "Fund in Need at the Positive Care Center", "National Institutes of Health (u.s.)", "Madison Aids Network", "University of Minnesota", "Hennepin County Medical Center", "Start Trial" ], "language": [ "English" ], "city": [ "Minneapolis" ], "state": [ "Minnesota" ], "country": [ "United States" ], "continent": [ "North America" ], "parent_collection": "HIV/AIDS Caregivers Oral History Project (Tretter: 368); https://archives.lib.umn.edu/repositories/13/resources/2123", "parent_collection_name": "HIV/AIDS Caregivers Oral History Project (Tretter: 368)", "contributing_organization": "University of Minnesota Libraries, Jean-Nickolaus Tretter Collection in Gay, Lesbian, Bisexual and Transgender Studies.", "contributing_organization_name": "University of Minnesota Libraries, Jean-Nickolaus Tretter Collection in Gay, Lesbian, Bisexual and Transgender Studies.", "contributing_organization_name_s": "University of Minnesota Libraries, Jean-Nickolaus Tretter Collection in Gay, Lesbian, Bisexual and Transgender Studies.", "contact_information": "University of Minnesota Libraries, Jean-Nickolaus Tretter Collection in Gay, Lesbian, Bisexual and Transgender Studies. 111 Elmer L. Andersen Library, 222 - 21st Avenue South, Minneapolis, MN 55455; https://www.lib.umn.edu/tretter", "fiscal_sponsor": "Primary funding was provided by the Ramsey County Historical Society. Additional funding was provided through a Minnesota Historical and Cultural Heritage Grant made possible by the Legacy Amendment’s Arts and Cultural Heritage Fund, created through the vote of Minnesotans on Nov. 4, 2008.", "local_identifier": [ "Tretter: 368, Box 1 - Jason V. Baker" ], "dls_identifier": [ "tretter368-Baker_Jason_full" ], "rights_statement_uri": "http://rightsstatements.org/vocab/InC/1.0/", "kaltura_video": "1_ftmc0hbu", "page_count": 0, "record_type": "primary", "first_viewer_type": "kaltura_video", "viewer_type": "kaltura_video", "attachment": "32.pdf", "attachment_format": "pdf", "document_type": "item", "featured_collection_order": 999, "date_added": "2020-05-07T00:00:00Z", "date_added_sort": "2020-05-07T00:00:00Z", "date_modified": "2020-05-13T00:00:00Z", "transcription": "Jason V. Baker, MD, MS\nHIV Care Providers Oral History Project\nDecember 18, 2015\nThis project was made possible by Legacy funding from the Arts and Cultural Heritage Fund established by\nthe vote of Minnesotans on November 4, 2008, and administered by the Minnesota Historical Society.\n(c) 2015 by The Jean-Nickolaus Tretter Collection in Gay, Lesbian, Bisexual and Transgender Studies\nAll rights reserved. No part of this work may be reproduced or transmitted by any means, electronic or mechanical,\nincluding photocopy and recording or by any information storage and retrieval system, without permission in\nwriting from The Jean-Nickolaus Tretter Collection in Gay, Lesbian, Bisexual and Transgender Studies.\n1\nHIV Care Providers Oral History Project\nJason V. Baker, MD, MS\nAssociate Professor of Medicine in the Division of Infectious Diseases at the\nUniversity of Minnesota and\nStaff Physician at the Hennepin County Medical Center in Minneapolis\nCommunity Consulting Group (CCG), LLC office\n5008 Morgan Avenue South, Minneapolis, Minnesota\nEmil Angelica, Peter Carr, Barbara W. Sommer, and Andrea Klein Bergman, Interviewers\nDecember 18, 2015\nJason Baker: JB\nEmil Angelica: EA\nPeter Carr: PC\nBarbara W. Sommer: BWS\nAndrea Klein Bergman: AKB\nTrack 1\n00:00\nMost of the interviews in this project begin with a recorded statement by Peter Carr about the\nproject and its purpose. Included here is an edited version of the statement; go to the audio\nrecording to hear the full statement.\nPC: This is an HIV/AIDS Oral History Project focusing on providers, both prevention and\ncare, anyone who got involved in providing care for people with HIV [in Minnesota]. There has\nbeen some work done on the [East and West] Coasts but there’s a big gap [in documenting\nprovision of care] here. We wanted to make sure that those stories are captured before they’re\nlost. We did an initial series of ten interviews that covered the early years of HIV in Minnesota\nfrom the early ‘80s—we picked 1996 as the cut point—and then we got some additional funding\nto expand the scope. We are now looking at the whole period from ’96 to the present day. One of\nthe things that we were thinking about—there may be things that could be learned about from\nHIVas a new emerging infection. What have we learned from HIV that we can apply to other\nemerging infections?\n2\nBWS: Today is December 18, 2015, and we are interviewing Dr. Jason Baker for the HIV Care\nProviders Oral History Project. Dr. Baker is an Associate Professor of Medicine in the Division\nof Infectious Diseases at the University of Minnesota and Staff Physician at the Hennepin\nCounty Medical Center [HCMC] in Minneapolis. His clinical practice consists of general\ninfectious diseases and HIV medicine. His research focus includes aging complications among\nHIV-infected patients. Dr. Baker works with the NIH HIV Trial Networks [National Institute of\nAllergy and Infectious Diseases (NIAID) HIV/AIDS Clinical Trials Networks] and ongoing—\nand what? Ongoing research?\nJB: My own research at HCMC.\nBWS: We’re in the CCG [Community Consulting Group] office at 5008 Morgan Avenue South\nin Minneapolis. The interviewers are Emil Angelica, Peter Carr, Andrea Klein Bergman, and\nBarbara Sommer. So with that, tell us where and how your interest in HIV medicine began.\nJB: So for me—I think, you know, HIV has been a part of my life for quite a long time\nactually and was part of the reason I went into medicine in the first place. So I was born in the\n‘70s, grew up in the ‘80s, and my father was gay, so I basically was around a lot of HIV\nunfortunately at the time and it really impacted me. And so I initially sort of thought about it as\nsomething I wanted to be involved with—make a difference—and then, as my interest in\nmedicine grew, that really became how I wanted to sort of get involved. And so all of that sort of\nled into the reasons I went into medicine and ultimately went into medical school about 1996\nwhich, as already pointed out, was a fairly pivotal year in sort of the HIV epidemic, so\neverything that impacted me and the motivations that I had going into the field, I finally get into\nsort of a career path and the whole epidemic changes and shifts and I enter—or exit—my\ntraining and it’s a completely different sort of disease and epidemic. And so it’s been sort of an\ninteresting journey but it starts, you know—so we can go along that path or talk about any of it.\nBWS: Go ahead. Tell us a little bit more about that path. How did that work for you when you\nwere studying to work—studying, you know, the disease—and then you found out about the\nchanges?\nJB: Yeah, I mean, so I guess, you know, the points maybe that I became involved in the\nepidemic were maybe college, where I was involved in—I was in Madison in college, University\nof Wisconsin—and so there was the Madison AIDS Network down there and they had a lot of\ndifferent ways in which volunteers could get involved. I sort of had been paired up with one\nperson who had HIV and worked with him over about two or three years, helping him with\npractical things and just providing some social companionship in different areas as he got ill.\nAnd so, I mean I really saw, I think, at that point when the epidemic was still—minimal\n3\ntreatments—treatments were available but they weren’t very effective and so there was a lot of—\nhe was ill for many years, complications from HIV because he had progressed to AIDS. That\nwas really what I was experiencing as I went into medical school and what was really driving me\nto want to be a part of that from the medicine side and the treatment side.\nBut when I got into medical school, the combination therapy, basically at that same time, became\nsort of quickly shown to be very, very effective when it came to standard of care. And by the\ntime I left medical school and went into—we do a residency and then enter infectious disease\ntraining—there was effective treatment. And as long as you could get people access to that\neffective treatment, you could prevent those illnesses and complications from HIV with AIDS\nprogression. So actually what I had seen right before going into med school, thinking I was going\nto be treating, I came out the other side and that essentially had vanished from what the spectrum\nof clinical complications was happening.\nSo, I mean, it’s just sort of another example of how fast this epidemic has changed. It still has\nimportant challenges but it’s amazing how much has been addressed and as it’s been addressed, I\nthink, it’s just changed the challenges but it really is a fast moving field. There’s been a lot of\nsuccess. With each of those successes we’ve just had new challenges. For me, coming out, it was\njust an interesting paradox to come out and be treating a medical condition that wasn’t really\nwhat I went in to intend to treat.\nPC: So I have a quick question—from about there. So it’s changed dramatically but you’re\nstill doing it—\nJB: Yeah.\nPC: you’re still into infectious disease medicine. I mean even though it was a pretty radically\ndifferent situation now you still followed that path.\nJB: Well, I think—I don’t know what motivates you to go into something is often—there’s a\nlot of different things. There was a, you know, there was a social justice component to it. There\nwas a sort of a big sort of political drive that way. And there was a science and something that\ngrabbed my intellect. So in some sense both of those components were still there—they just\nlooked a little different on a day-to-day basis. I mean it was all good news, right?\nPC: Yeah.\nJB: So it’s nothing, yeah—\nPC: Right, right.\n4\nJB: Yeah.\nBWS: Where did you do your residency? Did you focus on HIV when you were doing your\nresidency?\nJB: Yeah, I actually went to Portland, Oregon, to do that at the Oregon Health & Science\nUniversity and managed to—they didn’t have an HIV clinic for residents, or residents weren’t\ntypically allowed to that but this was sort of the path I was doing so convinced one of the staff\nphysicians to let me have a clinic. So I had done that during my residency and then again, I came\nto the University of Minnesota for my infectious disease training and continued it there before\nstarting at Hennepin.\nBWS: What did you find in Portland? Did you find that [situation was similar]?\nJB: I mean every sort of area has its own—certain risk factors or populations are more\nprevalent, but, I mean, a lot of the stuff was, I think similar. When I went to med school in\nMadison, Portland, and Minneapolis, there was a little bit more injection drug use out in the\nwest, northwest, Pacific Northwest coast, but it’s largely similar.\nEA: How did you wind up in Minnesota?\nJB: Minnesota is, you know, when I was thinking about where I wanted to train and\npotentially where I wanted to live and you know, it just—it has—it’s in your top three in all the\ncategories, you know. It’s a great place to live; there’s amazing green space—I live in the city –\nand then programmatically, there was a lot of really pivotal people in the, you know, a couple\nkey pivotal people in the field research-wise and clinically and I knew about Hennepin County\nMedical Centers. It is one of the reasons actually I came to train here was to get engaged with\nthat. So clinically they had, you know, great programs research-wise. There was great\nopportunities to learn.\nBWS: And you said you came for infectious disease study so describe that a little bit.\nJB: Yeah, and that, you know, in medicine training—after medical school—you focused on\nadult medicine and after that you focused on infectious disease and HIV medicine. And so I\nspent, during that last three years of training, focusing on HIV medicine; I also spent two of\nthose years primarily doing research and sort of starting to carve out my research niche that I’ve\nsince tried to build since training.\nBWS: And the research niche. How would you identify that?\n5\nJB: Well, I mean a lot of it is driven by, you know, what the clinical challenges are at the\ntime and this is really where that pivot, you know—I would have not thought this was how it was\ngoing to work, that I would be looking at aging complications as opposed to, you know, AIDS\ncomplications. And then it’s also, you need mentorship and so, there’s a little bit of a synergy\nbetween the mentorship you have available and the clinical challenges. That’s really what it\ncame out of. I essentially have, you know, have a group of patients who were able to really\neffectively treat their HIV; their immune systems recovered to a large extent, not completely, but\nthey’re still faced with some health challenges, some of which is related to the virus—HIV\nvirus—and some of it is related to the treatments. You know that’s getting better, and then the\nimmune system not fully recovering and we’re just seeing things—cardiovascular disease,\ncertain cancers, other aging complications which we see in the health of all—everyone, but it just\nhappens more frequently and maybe at younger ages.\nBWS: Talk a little bit about your clinical practice, too.\nJB: Sure. So my clinical practice in HIV is exclusively at HCMC, Hennepin County Medical\nCenter at the Positive Care Center and, you know, I—it’s—I don’t know I guess what else to say\nabout it. I have—I do a couple of things for them. In addition to primary HIV care I guess, I do\nsome HPV [human papillomavirus] related cancer screening which is another complication\nwhich is not an AIDS-defined illness that we’re seeing more of. But it’s a wonderful place to\nwork. I mean we have eight to ten providers. We have nurses, pharmacists, case managers,\nbenefits counsellors, other counsellors, risk reduction counselors—you’ve talked to some of\nthem already—and so I feel like, as a place to provide HIV care, I couldn’t think of a better\nplace. It really––it’s just sort of the whole package. I think we do a pretty good job there.\nBWS: And what’s the—if you were to describe your practice, what’s the community [you\nserve]?\nTrack 1\n15:00\nJB: Yeah, what’s the mix? It’s pretty similar to, I think, to anyone at HCMC, so we have\napproximately 40 percent are African American, another 40 or plus percent are Caucasian\nand then a mixture with the rest. In terms of race ethnicity, we have a substantial portion of\nAfrican-born as well, up to 10 percent of our clinic, and about 70 to 75 percent are male—the\nrest being female. So my personal practice splits pretty similarly along those lines.\nBWS: The focus is on that.\n6\nJB: Yeah, and so we, you know, we see all comers. It really gives you a really good slice of\nthe epidemic in Minnesota and I think it’s fairly representative of what’s going on nationally,\ntoo. I mean you really do get—the issues are not all the same as you sort of break down, you\nknow, stigma being much more common in some of the African-born communities in\nMinneapolis and I’m—that could be true in other parts of the state as well. But some of the\nstigma drives a lot of things that maybe has lessened in other communities—the stigma in the\nyear 2015 is certainly, it’s lessened in the gay community. But so I think you just have unique\nissues and it’s one of the great things, though, about working at a place where—that sees\neveryone as you sort of see all the issues eventually.\nEA: How does your practice and your research connect or not?\nJB: I mean the connection I think is that I’m trying to focus on what are some of the\nchallenges clinically. In practice, you know, you end up doing very different things, but\nconceptually, if we can get people diagnosed into care, on therapy, suppress their HIV virus,\nthings are, you know, outcomes are really good. And a lot of the damage that was done by HIV\nis reversed and it’s a really good positive story. But there’s probably a gap that’s not full\nrecovery. There’s probably still a gap to what we might call normal health. And so—and that has\nclinical complications. We see things like heart attacks, cardiovascular disease. We see certain\ncancers that happen more frequently. I mentioned HPV—human papilloma virus related\ncancers—we’re seeing many more of those. And so the reasons why those are happening more\nfrequently—these sort of complications of aging broadly—cardiovascular disease being one I’ve\nworked most on, is really where my research focus. Understanding why that is and can we\nactually intervene on that biology so we can sort of restore normal health?\nBWS: How do you sort of proportion your time or use your time?\nJB: I probably spend at least two-thirds of my time doing research and a third clinical.\nBWS: And the research does come out of the clinical—out of the clinical practice?\nJB: Yeah, I mean I do most of it at HCMC, though I partner a lot at the University of\nMinnesota on my research time.\nBWS: And then bring it back to the patients?\nJB: Yeah, most of the––I mean some of the studies that we do or have been involved with,\nhave directly impacted clinical care from that very study’s results. One of the larger trials that we\njust got involved with is called the START Trial [Strategic Timing of Antiretroviral Treatment\nTrial] and I was involved in a couple of different things in START. And that really impacted\n7\nquestions about when we should start antiretroviral therapy and it basically just for the benefits\nof individual patients, you should start as soon as you know you have [an] HIV infection. That’s\nbeen discussed quite a bit over the last twenty years and this was the first sort of randomized\nclinical study to show that it’s clearly beneficial to be on meds versus defer in any sense.\nSome of the other studies that I do though are really sort of just sort of advancing our knowledge\nand so the findings are really—help expand our understanding of why this is happening—aging\ncomplications and treatments that might be effective but the results themselves don’t necessarily\nimmediately impact clinical care. Some of it gets into understanding the biology underneath. So\nwe do little bit of both, but clinical studies that directly change clinical care are really great and\nfun to be a part of. But there’s––unfortunately, sometimes you need to do three studies before\nyou get to that one.\nBWS: NIH studies. So they’re national?\nJB: Yeah, the START Trial which I mentioned is actually an international trial that was in\nover 300 sites internationally and the coordinating center for that’s at the University of\nMinnesota. Part of my collaborations with that group I’ve been able to look at cardiovascular\ncomplications in that study. And then other studies that I work on coordinate out of HCMC are\nusually just at HCMC or there’s—I do some national and multi-center studies as well just in the\nstates.\nBWS: And these are—are these studies that you actually initiate or is this something that’s been\ngoing on that you see coming out of a variety of work?\nJB: Yeah, so the research that I’m involved with, aside from this large trial network, actually\nare things that are independently—yeah, so I go to the NIH with what I think is a good idea and a\ngroup of my peers either agrees with me or they don’t. I’ve had success in a couple fronts and so\nthey’re sort of independently funded investigator-initiated studies. That is our—I mean, that’s\nreally I think the challenge for society in our field is—are we going to support that kind of thing?\nReally I think some of the best ideas come out of independent groups as opposed to maybe\nclinical studies which might overlie with, say, industry or pharma initiatives. Then you have to\ntry to find research that both benefits patients and is attractive to pharmaceutical companies,\nwhereas this research I’m trying to do may not have any clear profit outcome. But it’s the\nknowledge we’re generating and we’re really trying to sort of, you know—when you generate\nthis knowledge in small steps, you really need to sort of, you know, do a lot of work to move the\npendulum along and get progress and get new treatments and change outcomes. So they’re hard\nto fund and hard to do, but they’re really rewarding.\n8\nBWS: How do you see—? You said that there were really rapid changes happening. Do you see\nthat—? You know, you said at the time—and continuing changes in the field?\nJB: Yeah, I mean I just think from the clinical side, you know, just the—if you go through the\ntimeline, if you’ve done this before, you know, in 1981 you have the first cases of PCP\npneumonia [pneumocystis pneumonia] patients and the syndrome being described and then, you\nknow, within three years you have a test and a new virus diagnosed HIV. And within three years\nafter that, you have the first medicine [AZT to treat HIV], and less than ten years after that, you\nhave really effective treatments [combination antiretroviral therapy] that just changed a\nuniversally fatal illness into sort of a chronic condition.\nBut that didn’t stop because then you have all these complications from therapy in the first phase\nof effective treatment—the HAART [highly active antiretroviral therapy] era, where you had a\nlot of complications from the medicines. And, you know, five, seven years after that, you know,\nit shifted a lot as we moved away from the drugs that were really toxic, replaced them with drugs\nthat worked just as well but weren’t as toxic, and that has even changed again. And so, I mean,\nevery five years the management of this infection is almost not recognizable to five to ten years\nprior. And, you know, the medicines—I haven’t been out of training all that long—twelve years\nsince I’ve been out of my infectious disease training, and the—some of the medicines are sort of\nnot even available any more that were available when I—so it’s not just that they’ve fallen off\nfirst line; they’ve fallen out of production. And so, I mean I don’t know if you can find a lot of\nfields where if you go, you know, thirty to thirty-five years, you go from not knowing what\ncaused the virus, to being—having therapies switch over three or four different times.\nEA: If you could say why that may have happened, just from your perspective, why did—why\nHIV medication and services did that? Was it outset funding? Was it advocates? Was it—I mean,\nwhat was it about—?\nJB: Yeah, I think, advocacy probably drove the vast majority of the initial progress but, at the\nsame time, I think the science has been so interesting, challenging, and has motivated a lot of\ninterest. So you have, you know, you’re drawing people into the field because of just [a]\nincredibly complicated virus and the way it invades the immune system, the way it’s set up for\nchronic infection, and how it causes illness. And then you have tremendous social advocacy.\nAnd so you’re just—I think you’re just pushing on both sides of the equation and I think it’s\nfueled—at different times you could see how the advocacy was maybe really important early\non—but I think as—at least in the U.S. maybe—the epidemic became a little more stable from a\nsocial standpoint, the science has been hugely important in driving advances. And so I just think\nit’s just a unique illness in the way it pulls both socially and scientifically.\nEA: What about the funding systems? Federal dollars?\n9\nJB: Clinically or—?\nEA: Yeah, yeah.\nJB: Yeah, I think, you know, they’ve been really effective at providing access to the\ntreatments. I’m sure you could come up with criticisms and gaps in care and—I mean HIV is one\nof these diseases, I mean it—I think of it as being just relentless and unforgiving in terms of\nhaving any gaps. And so to the extent that sort of the Ryan White Care Act and other federal\nservices have allowed us to get access to medicines and supplement care that was otherwise not\nreally supported by the current health care infrastructure, it’s been really important because it’s\njust—for example, you just think about something like having high blood pressure. Patients\nmight be asymptomatic for a while; we try to convince them of the importance of treating high\nblood pressure, get them on medicines. If there’s gaps in care, if there’s a lack of follow through\nor whatever’s happening—a person can come back into care. You can put them right back on the\nsame medicine and get their blood pressure back down. It still works and you can still prevent\nthe heart attack or stroke that you’re trying to prevent.\nThat’s not sort of—HIV is not that forgiving, you know, and so you have these gaps and those\ncan be really kind of catastrophic. Bad things can happen when you fall out of care, stop your—\nhaving access to your treatment. And so the way that I think the federal program has been really\neffective is minimizing those gaps by providing access. The AIDS drug assistance program’s\nproviding access to HIV medicines sort of irrespective of other insurance that might be in play\nbasically addresses that gap for the most part. I think we still, you know, people on the ground\nlevel would still say there are gaps and we need to address those gaps, but compared to other\ndiseases, we’ve been able to really do that, and that’s the huge impact that I’ve seen with the\nfederal dollars. [It] is saying, “You know, okay, utilize the other insurance you have but we’re\ngoing to make sure you have access to medicines.” You just can’t have those gaps. People are\ngoing to get sick between them—their resistance—HIV is going to become resistant to therapies\nand so it’s mostly a success story I think.\nMoving forward, I think it’s reasonable to re-think, you know, how you want to utilize those\ndollars. Access to therapy right now is still a critically important thing to support, I think, with\nsociety’s resources, so if you’re thinking about government, federal or state funds, I mean, just—\nthat’s a high priority. People have to be able to have access to treatment. We know it works. It\nworks for prevention. When you shut the virus down and someone who has it, they’re less likely\nto transmit it. And it works for improving their own health. And then, around that, I think we can\nsort of continue to address gaps. I mean you just—anytime you have gaps in their ability to\naccess and have care delivered is really where problems come in.\n10\nEA: And does your research speak to any elements of this in terms of either going forward\nor—?\nJB: Yeah, I mean, I think, you know, you always have sort of pipe dreams and things you’d\nlike to sort of expand to. At my phase—so initially I think, you know, the way I’ve tried to grow\nmy program is take some focused areas and really do some high quality projects and expand\nfrom there. But I think in the broader sense of, you know, if I think about sort of research\ninitiatives, in a lot of ways they mirror some of the clinical challenges. You know. HIV\nprevention is a focus area. Curing the virus infection among people who have the infection and\nthen improving outcomes for people who have that infection as well, so that’s really where the\naging complications have come in. I’m trying to sort of improve their health outcomes. But that\ndoes and will overlap with other ways to improve their outcomes. And so, yeah, anything that we\ncan do to help diagnose people, get them linked to care, engaged in care, keep their virus\nsuppressed—is going have implications for improving their outcomes.\nTrack 1\n30:00\nAnd so in a broad sense, you know, expanding the [research] program within that sort of\nphilosophy is definitely something I’d love to do. And getting, you know, we’re trying to build\nbridges with care research going on at the university [of Minnesota] as well as preventions so,\nit’s a balance between staying focused and being broader.\nPC: But going back a little bit. I mean, all of these good things, positive outcomes are\nconditional on getting someone into care, maintaining their adherence to the medication—how\nmuch of your work—I know a lot of the work at the Positive Care Center is involved with, you\nknow, sort of some of the wrap around services that make it easier for people to stay in care.\nWhat kinds of issues do you see in—?\nJB: I mean that is the central challenge. I don’t know if you’ve kind of walked through, you\nknow, the HIV world is come up with this HIV Treatment Cascade and it’s just a way of sort of\ncategorizing between the point where someone has HIV and is not diagnosed, down to where\nthey are receiving treatment continuously and have a suppressed virus. You can march out: Are\nthey diagnosed? Are they linked to care? Are they continuously engaged in care? And do they\nhave therapy and is the therapy suppressive?\nAnd those are clearly where the clinical challenges lie and everyone—every story is unique.\nWhy somebody is diagnosed, linked once, and doesn’t stay engaged in our clinic—I think you\ncan make some general comments, but if you delve down into their specific situation it’s often\nreally unique. But, you know, I think there’s economic challenges. Certainly when people are—\n11\nif they’re poor and they have more chaotic lives and food insecurity, HIV sort of unfortunately\ndrops down their priority list. We see this all the time. You know, you can’t naively think, Oh,\nit’s got to be the most important thing in their life. On a day-to-day basis, if they’re feeling well,\nmaybe getting the next meal, paying the rent, keeping the heat on, is far more important, or\ndealing with some catastrophe that happened in their family.\nSo, and we just see that a lot and how—as a clinic, we’ve tried to be creative about if it’s a\nsimple fix—if we just need to bridge your heat bill for a month and then you’ve got something\nelse coming in—if we do that, then you can focus on your health care [and] we can keep that\nlinkage to care going. But, you know, somebody’s example of how we keep that linkage might\nbe completely different from another patient I have. So the challenge is, How do you come up\nwith programs that are flexible enough to be more broadly applied like that?\nEA: And are there programs that now can—are flexible enough that you could, you know,\n“Oh, this one needs rent support, I can give this to you”?\nJB: Well, I can tell you that, from a clinic, you know, we’ve set up a fund to try to do that\ntype of thing—small, manageable financial support, you know, we—there’s a limit that each\npatient might get but, you know, we set up a program like that so we can address these, you\nknow, again small fixes that might help bridge these—this chaos—and keep them open to care,\nmaybe drive the HIV up the priority list a little bit. But that’s not supported by insurance\ncompanies—\nEA: Yeah, yeah.\nJB: These are sort of things that, you know, that the community—we do fundraisers and this\nis the kind of thing that where the gaps are left from whether it be insurance payers, federal\nprograms, you know, state or federal programs. Those aren’t well positioned to address those\ngaps. There’s still gaps. So I think, yeah, those are unfortunately left to a clinic level to be\ncreative and come up with soft money and funds that I can throw at that.\nEA: Yeah, right.\nJB: Wouldn’t we all like to have more soft money but—\nBWS: Where does the money come from for that? You said fundraisers?\nJB: There’s a—yeah, we’re trying to continuously sort of look for ways to sort of support that\nprogram. It’s called Fund in Need at the Positive Care Center. That’s the account that we have.\nWe have a hockey tournament each fall called Shut Out HIV, run by Chris Larson, our social\n12\nworker, who—it’s really been sort of a centerpiece fundraising event for that. But, you know,\nthis is where it’s wonderful to work with people who are motivated enough to spend all their free\ntime having a fundraiser to address these gaps within their clinic. I think, across the country, I’m\nnot sure that’s true in very many other places. Some of that’s the culture of Minnesota; some of\nthat’s because people who go into HIV are more likely to have been, I think, personally impacted\nby the disease. You just get a lot more people who bring a lot of motivation to it.\nAKB: And just to circle back, you were talking—I’m just curious. With the docs that we\ninterviewed in the first round, when they were providing HIV care, they were personally—they\nalso saw the stigma related to the patients, but they personally had a lot of stigma towards\nthem— people not wanting to shake their hand as the AIDS doctor, and then you’re coming in in\nthat kind of later area or time period. Would you say that you experience any of that in your\nprofessional career?\nJB: I think a lot of that—I’ve benefitted enough from medicine—I don’t think that happens as\nmuch as from a provider standpoint.\nAKB: Right.\nJB: I think there’s a lot of—there’s still a lot of—a lack of understanding I think in the\ngeneral public about the disease. I think that people understand that there’s effective treatment,\nbut they may not quite understand how effective it is and how much of an impact it makes on\npeople’s health. And so I think, you know, I just get a lot of questions about what I do and the\npace to take of that seems like there are questions you might get in 1996, 1997 or 1998, and it’s\ntwenty years later and so—but it’s not—they’re not afraid of me—\nAKB: Right.\nJB: and being around me as a provider and so there’s not a risk but there’s still a fundamental\nlack of understanding in some of the issues that HIV patients face, yeah.\nAKB: Like lack of education?\nJB: Yeah, just general public knowledge I think. I think it’s fallen off—I don’t know—we\nknow where this falls off but, you know, growing up in the ‘80s and ‘90s, it was part of your\nhealth class. I mean you just learned a lot about it [HIV] and learned a lot about transmission risk\nand different things and I think—I’m not sure—I think there’s just become a complacency\nbecause there’s an understanding that it’s not a death sentence and so the—I think with that lack\nof fear there’s just not a desire for, I think, people to understand it and continue to prevent it.\nWe’ve seen that translate, unfortunately, into risk behavior in certain groups as well. But—\n13\nBWS: Go ahead, talk a little bit about that.\nJB: There’s just—I think if it hasn’t been sort of covered—there’s at least in the last decade\nnationally, HIV incidence rates have gone down in all risk groups except gay men or men who\nhave sex with men in sort of the ages from thirteen to twenty-four where you’ve seen relative—\nstark relative increases. And it’s probably multi-factorial, but I think a lack of fear probably\ncontributes a lot so it’s—you’re not afraid because of all the success that we’ve had but then,\nwithout that fear, I think behavior—high-risk behavior does increase.\nPC: This question’s off on a little bit of a different tangent. With the—how good the\nmedicines have gotten and relatively easy to manage the clinical stuff—\nJB: Yeah.\nPC: do you see—I don’t know I think this is something Emil is interested in as well—and I\ndon’t know if this part of the conversation any more or not—but clinical care moving into\nprimary care.\nJB: Yeah.\nPC: Given the fact that it’s now relatively easy to manage the clinical things and what the\nimpact of that might be that given the fact that the clinical care maybe isn’t the most important\nthing anymore in terms of outcomes.\nJB: Yeah.\nPC: Because you’ve got manage all these other things.\nJB: So you’re thinking about the HIV specific—\nPC: Yes.\nJB: treatments and the management. Yeah, I mean it’s again, the success has been—it’s very\neffective. The treatments are well tolerated, robust; they can be combined into one pill. If things\ngo well, you just have one pill. Maybe, even if you’re on a salvage regimen these days, you can\nprobably do it with two pills. It’s really a different story that way. So if we can get people access\nto care and engaged in our clinic, we usually are on, you know, kind of on a maintenance phase\nwith the HIV treatment. We monitor, you know, and might tweak for tolerability or long term\ncure complication risk, but it’s not a highly active management. So, you know, in a good way,\n14\nwe describe it, “Well, that can be boring.” Right? (laughter) So we just kind of get through that\nand we’re done, you know. First two minutes of the visit, “Looks like you’re right on track.”\nBut the other stuff I think is—does dominate our time—but some of that stuff are clinical\nchallenges related to aging complications. You know, all of a sudden we’re dealing with\nsomeone my own age who’s had—one of my patients’ birthday is like two days from mine and\nhe’s had two non-traumatic fractures; he’s got bone disease [and] this is happening too young.\nAnd he’s also had some kidney trouble probably related to the virus and medicines. So you\nknow, all of a sudden you’ve got some chronic kidney disease management, heart disease risk.\nYou’ve got, you know, bone disease risk. So it’s actually still can be clinically challenging but\nit’s just a—becomes a complicated primary care set of challenges.\nAnd then, you know, looping back into the social challenges, certainly if somebody’s got life\nchaos and they’re not paying attention to any of that, that’s really where, you know, we’re\nneeding to draw from all this multi-disciplinary team that we have in the clinic. It’s just, you\nknow, whatever we can do, but at the end of the day, I think, you know, helping patients\nprioritize their health usually gets us there. In order to do that sometimes you have to help them\nsolve some of these other issues. So that’s really where, you know, social services more broadly\nin society—they’re lacking—it’s really hard to deal with all the health care challenges if they’re\nnot getting their other needs met.\nBWS: When you talked about the impacts of the medication, are you talking about post-1996?\nJB: I think it’s just sort of—\nBWS: Or it flows together?\nJB: Yeah. I guess I’m just thinking a lot of the issues we had post-1996 with drug toxicity.\nFrom ’96 through the early part of the 2000s, there was significant drug toxicity. That has\nlessened, but I think we still have considerations—we’re giving people chemotherapy, that, at\nthis point, is lifelong and so there really are I think, you know, considerable decisions to make\nalong the way and—but it’s certainly—the toxicity is manifold decreased from what it was, and\nagain, [is] another I think huge part of the success story. Not only were you able to effectively\ntreat the virus, then we were basically able to eliminate the toxicity from the drugs as sort of\nphase two.\nEA: Is there any kind of a barrier that you see that’s raised by the center that you’re in? Is that\na center that people don’t want to go into?\nJB: Yeah.\n15\nEA: Is that a center they don’t want to be seen going into? (laughter)\nJB: Yeah, all roads lead to Hennepin [HCMC]—the doors are open to everybody. It’s one of\nthe great things about it and one of the reasons I love being there. [It’s] one of the reasons that\nreally good people work there. So you can assure yourself that, you know, people that are there\ngenerally want to be there in terms of working there and get really, you know, get some of the\nbest providers, some of the best nurses, you know, the most talented people in the field work\nthere because of all those issues.\nBut, because the door’s open to everybody, it’s a pretty eclectic waiting room and I think it does\nhurt us from time to time in a community. We do want to be a place that everyone can get care at\nHCMC and I think, as part of that, though, you start to hear things like, Oh—so, I’m sorry. What\nI was trying to say was when you, as part of having everyone come there, I think the perception\nwe try to fight though is that only the poor get care there, or only the uninsured get care there.\nAnd so you just get those, Yes, the poor get care there but so do the non-poor and so do middle\nincome and so do higher income people and so do insured people and, you know, we like taking\ncare of everybody. (laughs) And so, but I think we do run into stigma in the community and\nelsewhere about people having this perception that we only see certain kinds of people who can’t\nget care elsewhere. It’s really not the case but it does I think sort of limit us in some regard.\nBWS: We talked a little bit—some of the early—again going back to your question about some\nof the early interviews—that physicians would say people didn’t either want to come to the clinic\nbecause it was associated with HIV care or they did not want the physicians out at—if they’d run\ninto them at other places, they’d say that they didn’t even know them because they didn’t want\nthat reflection on them.\nTrack 1\n45:00\nJB: I still think—the latter part—so patients might see me out in the community—it’s—I still\nhave—so I usually don’t acknowledge somebody that I take care of unless they’ve acknowledge\nme first, but I—it happens, you know, at least once a year so I’ll run into somebody and they\nstart panicking as though I have a sign on my head that says, “I’m an HIV doctor. Talk to me;\nyou’re my patient.” (laughter) And it’s so—I think people immediately panic about that. I just\nmake eye contact with people at restaurants or places and their face is red and they’re completely\npanicking and then, it’s okay, I’m not going to say anything and we move on. So, you know, I\nthink that tells me that, in their life, they may be comfortable [and] they may feel healthy, but\nthey haven’t told everybody. They certainly haven’t told everyone that is in the room where we\n16\nare currently or that restaurant or wherever so—so that gets back to the stigma question. It might\nbe quite a bit less, but clearly it’s something people still keep private in a lot of ways.\nEA: And does that make the research harder? Or is it a non-issue?\nJB: I mean I guess I’ve just always been amazed—I don’t work in other fields—but people\nwith HIV infection, there’s a huge thread of wanting to be part of advancing the knowledge. And\nthere’s just a lot of incredible sort of altruism and people just wanting to get engaged, knowing\nthat this is creating knowledge, moving in need of what may or may not benefit them, probably\nwon’t immediately benefit them. It’s a give-back. I just—I think it’s strong and it’s pretty\ncommon and across different groups. Now that may be true in other diseases; I guess I just don’t\nthink it is. I think there’s something about a desire—people feel, among the stigma and maybe\nother things, I think there is a lot of—there’s some gratefulness and there’s a lot of appreciation\nfor being scared and then being healthy again and saying, “I feel so great that I’m healthy again,”\nor at least some of my health conditions are better. You know, they’re thankful for that and they\nwant to give back and they want to give back for research.\nBWS: What about the social justice aspect? Is that part of that? Is that part of what you were\ntalking about when you mentioned it?\nJB: Yeah, I mean, for me, that’s just I think what’s fueled—I think a lot of people—it fuels\nadvocacy—that piece has come up. And I think it’s—I think you’ll find a lot of people that have\nbeen affected by HIV who then want to go work in the field. It’s just—it attracts that kind of\nperson. People are—HIV affects—disproportionately affects the poor and people who have it are\nsometimes treated unfairly and so that, I think, you know, from a social justice standpoint, you\nwant to address that. And so it just—I think it pulls people with a social justice, you know, drive,\ninto that field disproportionately.\nEA: What would you say as a researcher and as a person who’s trying to convince others that\nyou’ve got a good idea—? (laughter). Can you speak a little bit—has that evolved or changed in\nterms of federal funding for HIV, or is it as it always was, or are they looking at different things\nnow?\nJB: What’s being emphasized and prioritized, I think, shifts and changes. Federal funding has\nreally been hurting the last decade since about 2000. It’s been—the NIH budget has been\nrelatively flat. It’s been a really long period of contraction, if you will, in federal funding. So\nthat—it’s not unique to the field of HIV, but it is really a challenging time to convince somebody\nthat your idea is a good idea and that we should be doing this. But you do have to understand\nwhat the national priorities are. And so, of the dollars that are going to be set—put forth into HIV\nresearch, you know, they are prioritized and hopefully in—you’re focused on an area that has\n17\nbeen prioritized. I have been—I’ve overlapped enough but, yeah, I think that’s always a\nchallenge to do research. You have something that you hope is on a clinically relevant trajectory\nand you hope it fits with the national funding priority and then you hope that have your own\nexpertise sufficient in that area that you can make it work and that you have a good idea.\nI mean for me, the key is just—you just—it’s a—you can’t be on an island. You have to be\nworking with people who have overlapping interests. I really think it’s all about team science and\nbeing engaged with others who think about things a little differently, pull you in that direction\nand that’s when I think the best ideas come out. You incubate, you know, with a team and\nusually the idea that comes out is always better. And so—and if you’re involved in research in a\nteam sense, I think you’re in a better position to address clinical challenges that change and\naddress funding challenges that change, priorities that change.\nEA: And what about people who—I mean—so you’re into research and I’m sure there are\nother docs who aren’t.\nJB: Yeah.\nEA: What makes—what’s the difference? Does it make any difference in how they operate?\nDoes it make a difference in how you operate? What’s the difference?\nJB: Or why have I made my life difficult? (laughter) I don’t know. You’d have to ask them\nwhy they’re not interested in creating knowledge. To me, it’s just so—it’s just what—I mean, if\nyou’re going to do something for twenty or thirty years, I just—I feel like it just—it\nexponentially makes it so much more interesting and fun, you know. I want to understand that\npeople who are trying to help and give them the tools to sort of improve their health, deliver that\ncare right then, but then improve upon it. I think even people who don’t do research—there’s a,\nyou know, you might be involved with quality improvement, for example, initiatives. It’s a\nsimilar desire. It’s just, to me, if you’re creating knowledge, you’re creating something that\nwasn’t known before you did that and that to me is like so—I mean that’s a drug I’ll go back to\nfor a long time (laughter).\nBWS: Did you expect to do that when you were in medical school? Were you thinking—?\nJB: I was motivated more from the social justice standpoint going in and sort of—the\nquestion sort of drove into the research side, I think, during and through training. And then,\nespecially as I was getting out and things had changed so fast, there were probably more\nquestions—there’s always enough questions—but there were a lot of questions and things were\nshifting fast. I think that’s really where I got sucked up in it in the late ‘90s.\n18\nBWS: Are there other sources besides NIH? You said that federal funds are drying up.\nJB: Yeah, well, that’s really where my program has been—is going to the National Institutes\nof Health, largely because I’m—I mean I’m trying to do independent research that way but,\nyeah, I mean research programs, you know, I think there’s value in doing industry studies when\nthey align with patient benefit—you know, benefitting the patients. There’s, internationally,\nthere’s other foundations, you know, the Clinton Foundation and the Gates Foundation [Bill &\nMelinda Gates Foundation] and the Global Fund [The Global Fund to Fight AIDS, Tuberculosis\nand Malaria], have—but those are largely usually more international efforts. Another area of\nexpansion and growth.\nEA: In your connection with other researchers in this country and elsewhere, do you—how\nwould you describe Minnesota as being different or the same as—?\nJB: Yeah, I mean in some sense I think I’ve been involved with researchers at the U for a\nwhile and I’ve gotten involved with some at Mayo [Mayo Clinic] recently. I think one of the\nthings is there’s a lack of appreciation on the Coasts of exactly what’s going on here. A lot of us\npartner with groups on the Coasts but we also I think, you know, have a sense of being\nunderappreciated for some of the work that’s going on [here]. That might be one unique thing.\nAnd it’s not of lesser quality—it’s just that sometimes, Oh, you’re in Minnesota—they might\nknow you as being from, you know, your HIV cardiovascular niche. But then they didn’t really\nrealize, Where is Minnesota again? (laughter) Especially internationally, right. So I think, you\nknow, a lack of appreciation for actually how much really sort of cutting edge, sort of forefront,\nresearch is going on. But, you know, in terms of working team science, there’s a lot of the same\nchallenges. I think we—we’re better as a team and we’re better working together and so the\nextent we can break down barriers between say the University [of Minnesota] and Mayo and\nHennepin [HCMC], the better off we’re all going to be.\nEA: And are the same issues—are you seeing the same issues on the Coasts? Would they be\ninterested in your results?\nJB: Oh, yeah.\nEA: Because it’s, Hey, this is really—\nJB: No, yeah.\nEA: something we’re worried about too.\n19\nJB: Absolutely. I mean it’s globally, I think, so if you just––aging complications, that’s not a\nMidwest problem. It’s certainly happening anywhere where there’s been access to antiretrovirals\nfor a while and as scale-up initiatives in middle and lower income countries, and specifically like\nSub-Saharan Africa, scale-up initiatives to get antiretroviral therapy to a higher percentage of\npeople with HIV, you’re preventing progression at age––you’re shifting the spectrum of clinical\nchallenges over toward the same things we’re seeing, so it’s globally applicable. Absolutely.\nEA: This is kind of—this is what people are worried about right now and thinking about and\ntrying to figure out—\nJB: Yeah, one of the new projects I’m developing is really trying to get on the front edge of\nsome of this in Sub-Saharan Africa and look at some heart disease risk there. That may have\nsome similarities to what’s been described in western nations, but there’s unique issues in sort\nof—and again, trying to figure out the factors that are driving it so how can we prevent it by, you\nknow, mitigating each of those factors. Yeah, it’s really—it’s—the clinical challenges present\nthemselves anywhere. It’s just a matter of where you’re at with getting your patients diagnosed,\non therapy, and having their virus suppressed. That’s the priority and, as you do that, you just\nshift from AIDS complications to some of these aging complications, yeah.\nEA: We’ve been going about an hour so why don’t we take a—?\nBWS: Let’s take a break.\nEnd of Track 1\n57:19\nTrack 2\n0:00\nBWS: Will you tell us a little bit first—? We’ve talked a little bit about some of the anecdotal\nmaterials.\nJB: Yeah, so I mean, we were just talking about, you know, some patient examples that might\ncover some of these themes. And I think, I mean I’m sure I’d have plenty, but there’s sort of one\nin particular that I was thinking about when we were talking who has—he has HIV and he’s got\nheart failure and diabetes. And, along the way, you know, he’s struggled with having the\ndiagnosis embracing HIV treatment and we spent a lot of time—I’ve known him for probably six\nor seven years—we spent a lot of time while his immune system, his T Cells, were a little bit\nhigher, trying to convince him this is probably a good thing for your health and to try to kind of\n20\nease him into the HIV treatment. So it took about two or three years to get him on HIV\ntreatment.\nAs that was happening, he developed some heart complications and his heart function—he is in\nheart failure now—and then eventually he developed diabetes as well. So we’ve—soon we were\nspending a lot of time. We’ve got a care manager, which sort of is engaged in his care from our\nclinic—a care navigator, sorry, that helps him kind of navigate the system. We’ve got his virus\nsuppressed. We’ve been working on his diabetes management. That was challenging. He was\nreally not sort of embracing some of the therapy there—his insulin actually was more complex\nthan his HIV.\nSo we, you know, I mean years we worked with him. The nurses in clinic, case management, and\nthe care navigator—we’ve got a lot of people engaged and we’ve, you know, had a period of six\nto twelve months where, actually, medically things were looking sort of really good. He lives in\ntransitional housing where alcohol is not allowed and he comes back home one day and\ninadvertently had left a can of beer in his backpack. That’s discovered and he’s kicked out of his\ntransitional housing. So now he’s got life chaos as we’ve sort of discussed. And now his diabetes\nis not a priority immediately and his HIV is falling off the priority list. All these things are\ncontributing to how well his heart does. It takes time, but that sort of falls off and so he now—\nyou know, we built a wonderfully beautiful house of cards and there goes the housing and the\nwhole thing falls apart.\nAnd so, I mean, I just, you know, we’ve—we’re getting it back together and we’re trying to—but\nas a clinic, our ability to sort of fix that hole and address that chaos in his life is limited. As a\nsociety we can do that and I think, you know, the challenge for society is to stop blaming\nsomebody for what might be perceived as non-adherence or not following the track, and\nunderstanding that if we just actually had, you know, a little bit more support structure so he\ndidn’t have chaos in his life, he was engaged and he was managing his care well and he was\ncontributing back, you know, volunteering for the clinic and doing different things. So I mean,\nyou know, there’s contribution back onto society but I think what seems like, you know, charity\ncare really isn’t. You’re just—you’re just the foundation that needs to be there and actually\npeople make the right decisions; they do the right things. And typically when people—when you\nthink someone’s not doing the right thing or making the right decision, it’s really about\nsomething else—it’s some other chaos that’s making them—making their priority list different\nthan what you think their priority list should be. But—so I mean, it’s just, you know, he walks in\nwith a can of beer in his backpack and the whole thing falls apart. And that, you know, that’s—it\nshouldn’t be. Those of us who know him know that, you know, it didn’t have to go that way, but\nit’s just that’s unfortunately, [it’s] more common than, I mean—that’s why some of these people\nlose their housing, not because of something more sinister that is usually imagined.\n21\nAKB: And do you, the clinic, do you work with other HIV organizations and try to fill those\ngaps with them?\nJB: Yeah, I mean this is where I really draw heavily on some of the other support services we\nhave in clinic, you know, whether it be a social worker we have in clinic or case management we\nhave embedded in our clinic, working with other NGOs [non-governmental organizations] in\ntown. It is an area that I think we probably could do a lot better. There’s advantages to having\nNGOs spread out throughout our community, but it does break communication a little bit and can\nimpact efficiencies. Yeah, I think that’s probably an area we could do a lot better on. I mean\nMinnesota—one of the unique things about the epidemic is its—the HIV epidemic that is—it’s\nconcentrated in the Metro [Twin Cities Metropolitan area] and so services can be concentrated in\nthe Metro. We probably should have a lot more interdigitation than we do from state agencies to\nhealth care delivery to other NGOs. I think there’s good intentions, but probably not the\nintegration that there should be.\nEA: If you could restructure services in the Twin Cities; if you had your magic wand that we\nused (laughter) in your retreat [HCMC clinic retreat led by Angelica, focusing on broad\nprovision of healthcare]—if you could restructure things, what would you focus on? You know,\nnot to try and restructure the whole thing, but what would you focus on?\nJB: You mean, where would the money go?\nEA: Yeah, exactly (laughter).\nJB: Yeah, I think flexibility is a huge part of how some of these initiatives should go. I mean\nI think—I think it’s important, you know, to sit back and say which services should everyone\nhave and fund those. We sort of have this already but access to ARVs [antiretrovirals]—I’ve\nalready mentioned this one—but I think you could lengthen that list and sort of agree upon things\nthat we just need to make sure we get access for these thing for everyone. And then what I think\nneeds to happen in communities is little incubators so you have initiatives where you basically\ngive people the outcome and don’t restrict the process.\nAnd so, if you want more patients diagnosed or if you want more of your patients engaged in\ncare or more of your patients with viral suppression, that’s the outcome, you know. Give me\nmore patients with viral suppression and tell me how you did it, if you did it. If you didn’t do it,\nI’m not going to give you money anymore. I mean, sort of, so I think—doing that and not being\nafraid to do that. You know, we don’t know the best clinical model to achieve these challenges\nbut there seems to be a desire on the policy side—and I’m not a policy person—to prescribe the\nway we do it, when in fact I think what we could agree on is what we want as the outcome. So\nstate the outcome and see how—see who’s most effective at getting there. The emergence sort of\n22\nthinking, right? So give—and I don’t know that—I think we could—we have a manageable\nepidemic in the state such that—and it’s concentrated in the metro—that I think actually it could\nafford a lot of creativity that way, where you could, you know, have a couple different groups\ntrying it a different way, and it’s all happening in the Twin Cities and you just see what works.\nEA: And you mentioned the term flexibility and that goes back to your early point, early on in\nthis oral history, where you were talking about the flexibility to meet the unique needs of each\nclient—\nJB: The gaps, yeah.\nEA: The gaps, and fill them. And that’s the flexibility you’re talking about.\nJB: Yeah, I mean if you’re a clinic and, you know, you see every patient’s got a different\nstory, but the gap is always the same in terms of, well, maybe if funds for our program, positive\ntransmission at HCMC Fund in Need—but that’s a flexible, you know, way to address our gaps.\nBut there are—it can only address small gaps, so yeah, you can apply that thing on a larger scale\nto bigger gaps. But that’s exactly right. I think that problem with having flexible policy is the\ntrust and oversight and accountability and regulation, but I think if you do things on a smaller\nscale, and they work, then you can operationalize it a little more formally. But until you’ve got\nthe best method of care delivery figured out, I think you should be more focused on the outcome,\nnot the process.\nEA: And from your unique position of, I mean, having gotten into the field maybe later than\nsome of the other doctors we’ve talked to, do you see constraints related to, “People who get\nHIV deserve to not have the best care,” or if people do this, they earned it. Do you see any of that\nI—?\nJB: The blame they get now?\nEA: The blame, the—coming in at—coming in when you did?\nJB: I think that—I definitely still see that. So this is something that you might see from the\npeople in your community reflecting on the patients I take care of, right? Yeah, and I think that’s\nwhat gets into the education piece and there’s—I think it’s an important role of anyone in the\nHIV field to be sort of sitting down at social functions and gently educating our community, but\nit’s also really sort of a painful process to have to do that and have the same conversation over—\nEA: Over and over, yeah.\n23\nJB: And over again. Yeah, but I think it’s just—how is it any different than someone who\nchooses to smoke and has a complication from smoking? How is it any different from somebody\nwho has, you know, something you can trace back to their diet or is influenced by their diet? It’s\njust, you know, somewhere between 40 and 50 percent of deaths are often estimated to be due to\nor linked to behavioral life style factors, and so, why is this any different than that?\nPC: Because it’s related to sex.\nJB: Yes. And that’s why—and I just don’t buy into that—\nPC: I know, I know.\nJB: Yeah, you’re treating a human being—\nPC: Right, right.\nJB: —so there’s a fifty/fifty chance that what’s happening to them is due to their own\nbehavior (laughter).\nPC: At least, yeah.\nEA: At least (laughter).\nJB: So somehow that’s sort of how I try to talk about it with people and it’s sometimes not\neffective and sometimes it is.\nEA: Can you talk a little bit about other diseases and the learnings from either your research\nor learnings in general—\nJB: Yeah.\nEA: about this and what impact it might have or it may have?\nJB: I mean I think you could do—so maybe take them as first clinical and then research\nprogress. I mean, so on the clinical side I think it just gets around this whole issue about, you\nknow, being flexible and addressing gaps in people’s lives, helping them reduce their chaos so\nthey can prioritize their health. I don’t see that as being unique to HIV. I think that is—it might\nbe more important in people of lower socioeconomic status, but it’s probably also important to\npeople at any socioeconomic status. They’re not prioritizing their health is often a problem with\npatients we’re seeing who are sick from something. And it doesn’t always have to flow with\n24\nincome so anything that we’re doing—so, for example, if you took diabetes and, you know,\ninstead of—in HIV, our outcome might be suppressed virus, and with diabetes, it’s control of\nyour blood glucose. If we just sort of abandon all preconceived notions about how we do that and\njust say, “We need to improve the blood glucose. How can we do that? How can we use our\nresources to do that so this person’s healthier and they go back to work?” And it might be they\nneed more lab tests, but it might not be. It might be they need more access to housing and it\nmight be a whole lot of other things. So I think—and it’s—it’s because of the social justice piece\nand others, I think it’s been—it’s a little further along than HIV in terms of—at least of people in\nthe field understanding that.\nI’m starting to work with an investigator at Hennepin [HCMC] who is really interested in\nunderstanding the patient experience and having the care be less disruptive for them. They—\nthey’re—they were working on diabetes and then they, as we were talking, they were like, you\nknow, “You’re already further along than we want to be. We should do some studies on HIV and\napply that to diabetes” (laughter). So I think on the care side, that’s the most obvious thing to me\nis, even though we’re delivering care and our goals are health related, sometimes though\nresources have to be spent on what is looked—at what is perceived to be non-health expenditures\nto achieve the health outcome because healthy people are more productive and contribute back to\nsociety and are economically viable. It shouldn’t be a hard argument to make, but it is.\nEA: And what about—?\nTrack 2\n15:00\nJB: And so, on the research side, I mean I think if we’re talking about aging complications\nhappening more frequently, a lot of that biology is not unique to HIV so there might be levers\nthat are pulled that are speeding it up or altering it but it’s still happening in human beings and\nit’s still happening to their heart or whatever and so there are more parallels and commonalities\nwith what happens in patients without HIV. It might just be happening more frequently or at a\nfaster pace. So a large amount of that research is actually quite applicable to whatever disease,\nyou know, you’re looking at. If I’m looking at heart disease risk, a lot about what—but when\nwe’re looking at the biology and the mechanisms involved—a lot of that actually has\nimplications for treating people with heart disease or people who are having more risk for heart\ndisease.\nEA: And so are there—? As part of that research, the assumption I’m making is that people\nwith HIV will age faster in some areas?\nJB: Yeah, that’s––\n25\nEA: Their systems will age faster than they would have if they had not had HIV?\nJB: That is the sort of, you know, at risk of oversimplifying it, that is essentially what we’re\ntalking about, whether it be a more rapid aging or sometimes the term accelerated aging is used.\nIn some research circles, the semantics are debated endlessly but exactly that—it’s accelerated\naging, more rapid aging. And whatever comes along with aging is a profile of what we’re seeing.\nEA: And so is that more rapid aging—is that—in your research, has that been across the board\nor it’s the heart and the kidneys but not the—some bigger—?\nJB: Yeah, I mean, that’s a good question. I think it’s probably not all across the board, If you\njust look at a slice of America or any western nation, you know, heart disease and cancer are up\nright there at the top, so those are the ones that end up being at the top as well. And our patients\nwith HIV who have the HIV effectively treated but the, you know, bone has risen as a serious\nissue—and some of that might be drug toxicity still, you know— but a lot of the end organs, the\nkidneys, the liver, the heart, the bone. I didn’t mention neuro-cognitive with advanced HIV and\nAIDS progression, obviously dementia and different things were quite common, though that’s\nnot progressing to that extent. What we’re calling kind of sub-clinical neuro-cognitive function is\nfelt to probably be significant an issue—something that doesn’t impact the ability to kind of go\nthrough life normally for the most part, but actually probably is a subtle deficit. And so neuro-cognitive\ndysfunction is a huge area of interest as well.\nBWS: What about dementia? Not dementia?\nJB: Well, I guess I think of it as a spectrum and before that happens there’s probably—\ndementia would be the tip of the iceberg. What’s happening well before that, I think, is what a lot\nof people are concerned about.\nAKB: Can we go back to something you said that was quite striking, given that you’ve been\ndealing with this for thirty years. You said that we don’t know the best clinical model. I think\nthat’s a pretty—\nJB: I guess I think about that in sort of where I’m sitting in the year 2015, when we have—\nevery time you overcome a hurdle, there’s another one sitting there so we’ve—it’s not that we\nhaven’t done anything well. It’s that we’ve done so much well that’s what left in front of us, I\ndon’t think we’re—I think we’re facing society challenges, poverty challenges, and I think that’s\ndominating our care for these patients as much as actually fighting the virus. Because we’ve\nactually done really well at delivering care to fight HIV, but if the goal is improved health, that’s\nwhere I think we struggle—is how does our health care system help people improve their health\n26\nif they’re not actually getting access to the therapy or if it’s getting interrupted because every\nthree months something changes in an agency which requires another form or which cuts their\nmedicines off or something to that effect.\nSo, I mean, some of it—I mean our health care system just has a lot of flaws and I think we’re at\na point where the virus—we can treat the virus effectively. We can’t cure it but we can actually\ntreat it really effectively, and we’re butting up against just the failures of our health care system.\nAKB: Right. Because, as you said, and made very clear, is dealing with somebody with\nHIV/AIDS in your clinic, you have to look at all of the aspects of their life in order to keep them\nin continued care.\nJB: Yeah, I mean, it’s just—it’s a, you know, my priorities for that are to be as healthy as\npossible, but if that’s not their priority, then we sort of have to just figure out how we can align\nthat better.\nEA: So as you think about the future a little bit here, I’m interested in both, from your\nperspective, where the research is going to go—that researcher side—and then also where you\nsee care going for people living with HIV?\nJB: Yeah. On the research side, I think the priorities set out right now are to try to\naccomplish, you know, big goals in prevention and cure. I think—I hope there will always be\nemphasis on improving outcomes, normalizing health, but if we can effectively shut the\nepidemic down through prevention and cure initiatives, that sort of precludes the need for the last\ncategory. And we know, you know, they talk about vaccine and cure and I don’t know if there’s\ngoing to be a vaccine or a cure. The research now that’s going on is incredibly complex and light\nyears ahead of what was happening ten years ago, fifteen years ago, but the virus’ ability to\nevade and persist has been remarkable and so we haven’t cracked that nut. I suspect we will but,\nuntil we do, the medicines really, really work and will shut the epidemic down if we could get\naccess to the entire world population. So it’s not quite so ‘pie in the sky’—if we really treated the\nworld, we probably would shut it down. At least from the prevention side, that works and, you\nknow, should be done. And I think—I’m not sure we have the will but we definitely have the\nmeans to do it. Yeah, so I mean that’s where the research—so I started there, but it leads over to\nactually active, you know—\nOn the clinical side, a little bit of it is just, yeah, it’s just getting access to everyone who has it I\nthink is huge. That’s more of a global challenge, but it doesn’t mean that we’ve solved it in the\n[United] States. You could go through regions of this country that have horrible access to care\nand treatment for HIV. We in Minnesota have supported it well in general, but I still think you\ncould identify gaps. We’re not perfect. We’re above average, per usual, but we’re not perfect\n27\n(laughter). I think getting sort of that access to care and removal of gaps is really where some of\nour clinical priorities should be. And I didn’t mention, but I think inherent in all this is\ndiagnosing—getting a better sense of who has HIV to start with, so that’s a really part of the\ninitiatives. There’s a really small percentage, 20 percent or so, of the epidemic that is\nundiagnosed, and eliminating that so we at least can get them into care is another part of it.\nEA: Anything else you want to say? Any unanswered?\nBWS: Anything else you’d like to say?\nJB: I don’t know. I hope I watch this or listen to this in twenty years. That would be fun\n(laughter).\nAKB: Or see it.\nJB: Either way, I’d rather listen to it.\nBWS: See what you’ve said about the future in the future, in the future?\nJB: Yeah, or even just if any of it’s relevant, yeah. Who knows, given the last twenty years.\nEA: Given the last twenty years, who knows?\nJB: Probably not.\nPC: It’s a dynamic field, for sure.\nEA: Cool. Well, this was great.\nPC: Very good.\nJB: Again, again thanks for thinking of me and including me.\nBWS: Thank you very much.\nEnd of Track 2\n24:12\n[Total Interview Time: 1:21:31]", "_version_": 1710339053600112640, "type": "Moving Image", "collection": "p16022coll534", "is_compound": false, "parent_id": "26", "thumb_url": "https://cdnapisec.kaltura.com/p/1369852/thumbnail/entry_id/1_ftmc0hbu", "thumb_cdn_url": "https://dkp5i0hinw9br.cloudfront.net/363f7d3aaef7e9cd87bafdd23c73e101bff40194.png", "children": [ ] }