Today is World AIDS Day — a day that provides us with an opportunity to raise awareness about HIV, show support for those living with HIV and honor those who have died from AIDS-related illnesses. Learn more at WorldAIDSDay.org, HIV.gov and UNAIDS.org.
AIDS was first identified in the early 80s – right around the time when many members of ABIM’s Infectious Disease Board were entering the health care field. ABIM Vice President of Medical Research Lorna Lynn recently spoke with members of the Infectious Disease Board, including Antigone Dempsey, Jeanne Keruly, Jeanne Marrazzo and Jeffrey Rapp, about their experience on the front lines of the epidemic and why they devoted their careers to this area.
Though much has changed in how HIV/AIDS is treated and how patients living with the disease are stigmatized by society, the group agreed that there is still work to do to ensure that those living with HIV/AIDS in America and around the world receive proper medical attention and compassionate care.
While it was difficult for members of ABIM’s Infectious Disease Board to relive some of the memories from the early days of the fight against AIDS, they remain hopeful that medical advances, improved awareness and expanding support communities could end the epidemic.
Listen to the conversation:
Lorna Lynn: I’m Lorna Lynn, an internist and Vice President of Medical Education Research here at the American Board of Internal Medicine. You might know us as ABIM. I’m here in Philadelphia with some of the members of ABIM’s Infectious Disease board with Antigone Dempsey and Jeffrey Rapp, and we have Jeanne Keruly, another of our board members, joining us from Baltimore. Welcome, and thank you, all of you, for joining us today. Wonder if I could ask each of you to briefly introduce yourselves.
Jeffrey Rapp: Sure, I’m Jeff Rapp. I’m a practicing infectious disease doctor at Cedars-Sinai Medical Center in Los Angeles.
Antigone Dempsey: Hi, I’m Antigone Dempsey, and I’ve been working in the HIV/AIDS field for a little over 27 years.
Jeanne Keruly: And hi, I’m Jeanne Keruly. I’m been working in HIV since 1987. I am a nurse practitioner and do both clinical care and research.
Lorna Lynn: So, we’re here today to recognize World AIDS Day which is observed on December 1 of every year. It’s an opportunity to raise awareness about HIV, to share support for those living with HIV, and to honor those who have died from AIDS related illnesses. World AIDS Day was established in 1988 — nearly 30 years ago. Since then, we’ve seen so many changes in how HIV and AIDS are treated, both in the medical sense and public perception. As you well know AIDS was first identified in the early 1980s right around, or maybe even before some of us entered into the healthcare field. When I think back to those days, I remember a patient named Frank who I met during my first internal medicine rotation during medical school. Frank had AIDS, and his courage and his grace inspired me to focus on providing primary care to people with HIV and AIDS during the 1990s. So, we know that it can be difficult and painful to relive some of those memories, but I would welcome you to share some of your earlier experiences in the HIV/AIDS field, and tell us about what brought you to devote your career to this area. Jeff, how about we start with you?
[Time Stamp 00:02:17]
Jeffrey Rapp: Well, I think that I’ve been involved with HIV care since around 1984, and those were very, very bleak days. I think one of the reasons why I went into the field, ultimately, was because I really wanted to try and make a difference, because things were so desperate, and it wasn’t just about the medicine but was also about the human interaction that was just so important. Those were very, very tough days, but you had the sense that you were really getting in there, and rolling up your shirt sleeves, and really almost going into battle more than anything else.
Lorna Lynn: Antigone, what about you?
Antigone Dempsey: Sure, I mean for me it’s different, because I got involved in HIV not because of a career, but because I was diagnosed with HIV in 1990. Actually, this October is the 27th year that I’ve been living with diagnosed HIV. When I was diagnosed in 1990 I was a 22-year-old woman, and, you know, it was at a time when it was a shock for myself and my family. I remember going in and getting my HIV test, and, I mean, I was so sure I was negative because so many people had said, “Oh you don’t – you can’t have HIV, or you look so healthy,” that my mother was sitting outside waiting for me in the car, and I was supposed to go in, get my test results and come back out. And so, when I went in, the counselor brought me into a room, and she sat down, and she said, “You’re positive.” That moment, I mean, everything changed about anything that I had thought about myself, or knew about, you know, my sort of sphere. And I just remember I started crying, and I said, “Can you please go get my mother? She’s outside. Can you please?” So she got my mother, and I just remember, when my mother walked in, there were tears on my hands, and I was afraid that she wouldn’t touch me, and that she would be afraid of me. And that one moment completely changed how I felt about myself, how I felt about my body. I was lucky that my mother, you know, was educated enough and she took me up in her arms, and supported me. But I think that experience 27 years ago continues today, and that’s something that’s really important to remember. The stigma, it’s a legacy that stays with us. I don’t think there’s anyone today that tests positive that feels like, “Oh, I’ll be okay. This is a chronic, manageable disease.” It is now, but it’s still a remnant of this disease.
[Time Stamp 00:04:53]
Lorna Lynn: Thank you for sharing that. I know in the earliest years there was a lot of stigmatization and fear with those who were living with HIV. There was misinformation about the illness, but the the reality was that the groups that were most affected by HIV—gay men and injection drug users—faced significant prejudice from much of our society. There were many people who worked very hard to combat the stigmatization and to build compassion for patients: activists, family members, friends of patients, and healthcare workers. I wonder if you could talk a little bit about how the relationships between providers and people living with HIV and AIDS have changed, especially about the role of the gay community in responding to the epidemic, creating services and systems of care.
Antigone Dempsey: Sure, I can start, and I’m sure others can add. For me in particular, you know, I immediately realized after I was diagnosed, “I need to find other people like me.” And so I was very lucky in that there were some services that were developed—and I was in San Francisco at the time—and those were developed mostly by gay men, in the gay community, to help their friends and their loved ones. And so because of that experience, and that work, and that effort, there was a support group for me, for young people, and most of the folks in the group were young men. And it was really hard to see that for me, as a young woman, I had my challenges, but as young gay men, you know, a lot of these young men were not being supported by their family. So, they didn’t feel that they could disclose their HIV status, because they felt they were already being outcasted for being gay and young. I think that a lot has changed. People came together. One of the other pieces that was really important for me, in terms of having the support group available and having providers available to me, is that people rallied together to make systems work for us, especially in the early days to help get you in, even though there wasn’t treatment at the time. I mean, we were dying, but we needed to go see providers. There wasn’t even viral load testing. All we knew was the WBC [white blood cell] count. That was the thing if you were having an opportunistic infection. So, I mean a lot happened. It was a time of crisis, a time to try to do what you could, and where there was very little that you could do except to try to provide dignity and support. So, I think that actually established a new way of developing provider-patient relationships. I’d never really been to doctors before. I didn’t know. They always just seem to tell you what to do, and you go do it. But I learned—my providers that I started seeing after my diagnosis—they cared about me. I mean, it was so much more than just seeing a doctor. They helped me feel okay about having this disease, have some hope, to take care of myself, and do the things that I could, like quit smoking, which actually turns out to be a really important thing to do. And so I learned that it was really a partnership. At one time I remember seeing my doctor, and I went in, and she wrote down on a prescription pad, “Meditate when you’re feeling stressed. “ She gave that to me, and I kept it and used it for years. It was so important for me. So I don’t know if I exactly answered your question, but you know, for me that was a very monumental, developmental time.
Lorna Lynn: Thank you for sharing it. Jeanne, I know you were involved in the early years and in some of the early trials. Could you share some of what those experiences were like for you?
Jeanne Keruly: Well they were in 1987. That’s when I got started in HIV, and you know we had one drug, and it [cost] very much. It was a drug, a single drug, zidovudine, you know resistant. We didn’t know about resistance initially, but one drug was a lot of toxicity. There were drug holidays, and really our role was supportive, and, you know, just [providing] a lot of comfort. You know, with stigma, it’s interesting because there was a lot of stigma then, but there is still a lot of stigma in the community, especially in Baltimore, for example, where we had a large drug-using population. So, even though we made tremendous advances, we still have patients coming in devastated with the diagnosis and really feeling very isolated. So, it’s so important that our patients have a home, some place to go to and individuals to really share concerns. I think that’s what’s been so special about my career in this disease. I really feel that we make very strong, very special relationships with our patients, because many of them don’t have a family or friends to go to. We are there for them so that they can stay well.
[Time Stamp 00:10:46]
Lorna Lynn: Jeff, you have been involved in this area since, as you said, the early 1980s. Can you share some of your views on what some of the biggest milestones have been from that time as we’ve made advances? While we certainly haven’t conquered all the problems, we are in a different era now than we were then.
Jeffrey Rapp: We are, I think. That period, between the early 80s and the mid-90s was just devastating on so many different levels. Then, 1995 really was a breakthrough moment when the cocktail, you know, the protease inhibitors became available, and it was really almost as if somebody turned off a spigot. I used to keep a list of all my patients every year that died. And every year it was a whole piece of paper. And then in 1995-1996, it was a half a piece of paper. Then by 1997, it was almost nobody. So, although, of course, people get opportunistic infections even today— it’s not a perfect world—it was just so dramatic when the protease inhibitors came out in the mid-90s. It was a completely different world.
Lorna Lynn: Jeanne and Antigone, what do you see as some of the most important changes that you’ve witnessed over these years?
Antigone Dempsey: I’ll go first Jeanne. I think what Jeff just shared is the biggest piece. One of the things that I was able to participate in was some of the meetings around what was called the O76 Clinical Trial, which was the mother trial transmission. I wasn’t a mother at the time, but I was a young woman, and so I was invited to these meetings. Just to see the huge impact of that on women’s lives, because I worked with women as an advocate, and hearing their stories, I mean, you know, of them losing children, their children dying and doing some global work. That clinical trial completely shifted the transmission rates of mother to children. One of the things when I was first diagnosed that I thought was, “I can never have children,” because I never wanted to take that risk of 40% transmission. But actually eight years ago, because of these advances I decided, “You know what?” I felt like it would be okay to take that risk because it was down to 1%, the transmission risk. [There are] lots of other things that we can transmit to babies at a much higher rate. Because of that, I have a wonderful, lovely son who is a joy, and he would not be in this world today without that. For me, personally, that’s, one of the biggest pieces of advances, along with people living. I was able to live to be old enough, to be able to have a family, and have a life that I never expected. And I know I wouldn’t be here today without the support and work of the providers and of the medical community. So, I have a lot of gratitude for that.
Lorna Lynn: That’s a wonderful story. Thank you. Jeanne, what about you?
[Time Stamp 00:14:40]
Jeanne Keruly: So, I agree with Jeff. The drugs made such a difference from just watching people just die and having ceremonies once a month to remember all those that have passed to somebody coming in– I’ll never forget. I had a patient come in in a wheelchair [who] could barely move, had a CD4 count of five [or, too few T-cells]. We started him on therapy, and he’s been well for years now. [He] has his own business. When that happened, it was exhilarating to see people who were just on the edge, being able to offer them these new therapies, and then get well, and feel well, and be productive again. I mean it was just such a game changer. But the other thing , I think, that’s been really interesting, and that I’ve enjoyed about staying in this field is that I really do feel that we’ve had a lot of involvement with the patients in our programs. A lot of advocacy, a lot of peer involvement has made a difference in the way that we deliver service. Our patients that work on programs to help deliver services have made our care program better. I think HIV has services they really integrated very, very well.
Lorna Lynn: As I’ve been listening to you, I’m remembering my time as a primary care doctor, providing care to a lot of patients with HIV, and thinking about the impact on how we take care of other illnesses as well. I think that the connections between care providers, and patients, and HIV made us think that we need to get to know all of our patients differently, and that we are a community, and that we need to listen to the needs of patients, and families and understand that more. Jeff, I know that you have a practice that extends beyond HIV care. I wonder if you’ve seen this in other types of care that you provide.
Jeffrey Rapp: Well, I think the experience with caring for HIV positive patients was unique, and it really formed the way that I interact with patients who are not HIV positive. Because when you really think about it in the 80s and 90s, patients were pretty much alone. Their families had shunned them. Their government had turned their back on them. So there was a very, very small community that was providing a tremendous amount of support. The interactions that I developed with patients then became very important way after protease inhibitors came out, and HIV became so much more manageable, and it filtered over to how I [interact] with patients, overall, whether they’re HIV positive or not. I think that the relationship-building with patients was formed in those years, and it sticks with me now in every aspect of ID [infectious disease].
Lorna Lynn: So, what do you all see as what may come next in both prevention and treatment of HIV and AIDS? There’s been a lot of talk for a lot of years about vaccines. There certainly are approaches now for prevention that we wouldn’t have thought of about 25 or 30 years ago. What’s next?
Jeffrey Rapp: Right now, it just seems as if it’s ease, ease, ease. You know, a-once-a-day routine. Something that is simple, or even longer intervals. I think that the easier that you make it, I think the better results you’re going to wind up having. So, I see that as something that’ll just continue to roll out over time. I think prevention with PrEP [Pre-exposure prophylaxis] has really taken off over the last couple of years, and it’s growing exponentially, at least in my practice. So, there’s still some work to do. I still see zero conversions periodically, and I still see people who present with T cells of five, but it’s a very small number in my practice.
[Time Stamp 00:19:52]
Antigone Dempsey: So, I would say treatment as prevention is one of the—and I agree with Jeff on everything he said—but the whole sort of concept of, “If you are treated with HIV you cannot transmit the virus,” that’s a huge thing right now that has a lot of legs. There’s a home movement called U=U [Undetectable Equals Untransmittable]. It’s sort of community driven, and that’s actually—we talked a lot about the stigma—that’s made a huge impact on how people feel about themselves, and how they perceive themselves, and how others actually are perceiving them. So, I would say that’s one of the biggest things. And then the other thing, because I do work in the Ryan White HIV/AIDS program, is that when you get to the end of the day this disease impacts mostly poor people in the United States, people of color, folks who are drug users. So, you know, there are so many other challenges, and issues that are happening in their lives that go way beyond having HIV. And so, the better we’re able to manage HIV, the better we should be able to address the other challenges. And it’s harder work, actually, because to deal with poverty and all of the other issues that are happening in the United States beyond taking a pill, that’s even the harder work. And so, that’s where I think this disease really is different than a lot of other ones in that many providers and communities have come together to really rally around these things. Because in order to get to the doctor, to take the treatment, to be able to afford the treatment, you have to tie all these other pieces together—the support services, the training, the advocacy and all that. It’s not just about taking a pill. It’s about so much more, and the weaving together of that. To me, I think that’s going be on the horizon continually. There’s an opioid epidemic happening; there’s so many different pieces. I think that the medical advances are extremely important, and they help us be able to dig deep and do more.
Lorna Lynn: So, Jeanne, you’re in Baltimore, which is a city that I think faces a lot of these issues that Antigone is talking about: substance use, mental health issues and homelessness. How do you incorporate approaching these problems in the work that you do day-to-day?
Jeanne Keruly: So, it really takes the village. We need a lot of staff in addition to just medical providers providing the care. We have we have case managers; we have nurses; we have pharmacists; we have mental health clinicians. They’re all integrated in our clinic. Taking HIV medicine, for the most part now, is relatively easy. Patients can incorporate it. It’s like Antigone said, it’s housing, adherence for some of the other medications, like mental health medications, that are challenging for us. And so, without that village of other people really supporting the patient, it would be very, very hard. I think in some communities, like in Baltimore, we rely very heavily on our Ryan White support, for example, to be able to offer those things, because it really does make a difference in our patients’ lives.
Lorna Lynn: So, Jeanne both you and Antigone have mentioned Ryan White support. Maybe some of our listeners aren’t familiar with Ryan White funding, and what that means. Antigone, could you tell us a little bit about that?
Antigone Dempsey: Sure. It was legislation that was passed in 1990 by congress to basically support people living with HIV who are in low income, and it continues today. The program receives about $2.3 billion to help fund primary care treatment so there’s something called the AIDS Drug Assistance Program, which helps pay for medications, and for healthcare coverage, and the support services that Jeanne was talking about. The program serves over half a million people with HIV in the United States, which just over half of people living with diagnosed HIV in the United States. That’s it in a thumbnail.
Lorna Lynn: Thank you. So, I think we can all agree there have been a lot of advances made, but still an awful lot to do. I’d like to give each of you a chance, as we get to the close here, to tell us how we as a society, as the healthcare providers: How do we keep this a priority amidst all the other competing needs that we see in the healthcare landscape? Jeanne maybe we can start with you.
[Time Stamp 00:25:08]
Jeanne Keruly: Well, I sometimes feel that the community has forgotten how important it is to address this, because our patients are doing well. It’s just an acknowledgement that addressing all of the needs of an individual in order to maintain wellnesses is important. It actually takes individuals that feel comfortable with their diagnosis and their ability to have a voice in the community that says, “I’m well, I can do this, and so can you,” to really reduce, here in Baltimore, some of the stigma.
Lorna Lynn: Thank you. Jeff, what would you say?
Jeffrey Rapp: Well, I think going forward, as Antigone mentioned, the socio-economic factors are extremely important. The fact is that HIV medication is extraordinarily expensive, and not everybody is going to be able to afford it without some help. You always have to make sure you ask yourself, “How is this patient going to get these medications into their mouths?” And I think that if you fail to appreciate how expensive this is and to provide the support that’s necessary then you could regress, because we all know what happens when HIV is not treated appropriately. So, my concern would be that if the dollars aren’t there to help people afford these medications, you could wind up with a bigger mess on your hands again.
Lorna Lynn: Just in case somebody isn’t familiar with it, give us a ball park about what the cost of HIV medication might be.
Jeffrey Rapp: Well, you know, it’s going to be variable, but an annual cost would be – well if you were going to pay the retail price, you would probably be looking at $15,000 to $20,000 a year, easily. Of course, there are other things that factor into that as well, but they’re very expensive. You’re going to wind up paying more with a lot of plans that have very high deductibles and co pays, and that’s something that you just really have to keep in mind. You don’t want to have to go back to people taking half of their doses just to extend the pills a little bit longer, and my concern is that we have become somewhat complacent, and you tend to think that things are going in an upwards direction, but you can just as easily go backwards as well.
Antigone Dempsey: So, I think for me, one of the things that I’ve been thinking a lot about because of my work, I think we’re all trying to figure out how we can get to the end of this epidemic. Because treatment has made such a big impact, but when you look at certain populations like young people, or people who are homeless, the rates of viral suppression in those populations are not as high as in the general population. So, in the Ryan White it’s 50% viral suppression for young people verses 83% for everyone else. So, for me the future is looking at data, looking at what do we need to be doing better, because I really believe—and I never thought I would say this especially, you know, thinking back to the 90s—but I really believe if we could both do treatment as prevention and get as many people as possible access to care and treatment, pre exposure prophylaxis, I think we could end this epidemic. We could do it. It could happen. That is the way we could end it. We don’t even need a vaccine anymore. We just need that. So, I think, we have the tools available to us. Do we have the resources and, sort of, the political will? But you know, we can get there. So, that’s the future that I see.
Lorna Lynn: And that is a wonderful message for us to close with. I want to let you all know it really has been an honor to talk with you all today. I want to thank you for your time, and for the remarkable work that you do. Thank you all so much.
Jeffrey Rapp: Thank you.
[Time Stamp 00:30:01]
Antigone Dempsey: Thank you.
Lorna Lynn: I’m fortunate to have the chance today to speak with Dr. Jeanne Marrazzo, our chair of ABIM’s Infectious Disease Board. Jeanne, we missed you when I had the chance to hear from three of your board members, Antigone Dempsey, Jeanne Keruly, and Jeff Wrap. We’re also eager to hear from you. So, thanks for making the time to speak with me today.
Jeanne Marrazzo: It’s my pleasure. Thanks for having me Lorna.
Lorna Lynn: Could you tell us just a little bit about your work?
Jeanne Marrazzo: Sure, so I am currently the Director of the Division of Infectious Diseases of the University of Alabama in Birmingham, and I have, for my entire career as an infectious disease practitioner, worked in the area of research in sexually transmitted infections and HIV, initially with a very strong focus on women’s health, particularly sexually transmitted infections and vaginal health including the vaginal microbiome. And more recently, in the last 10 years or so, [I] transitioned that interest to biomedical prevention with HIV infections, particularly in women. So, I have had a long standing interest in HIV prevention and also, kind of, emphasizing that HIV is an STI (sexually transmitted infection) and really trying to bridge both of those fields. I’ve also been a direct care provider for people living with HIV since my fellowship began in 1992, and obviously saw my first patient with HIV as a medical student in the mid-80s. So, it’s been a long road.
Lorna Lynn: Well, Antigone, Jeanne and Jeff all shared some very remarkable stories about the advancements they’ve witnessed since the mid-80s. What do you see as the most important changes in the care of people living with HIV that you’ve seen in that time?
Jeanne Marrazzo: Yes, it’s a really fascinating question, and especially fascinating to think about it from the perspective of someone who spent most of their career—my career—in Seattle which has a pretty great public health system and excellent consortium of researchers, pretty great resources, and then having moved almost two years now to Birmingham, in the deep south, where those things are different. And so what I might have given you as an answer two years ago is going to probably be very different than what I would say now. I think there was so much that those folks said that really resonated with me. I mean very clearly the ability to at least physiologically make people healthy very quickly with incredibly effective well-tolerated medications is a huge change. Because having been through the era that they talked about, that was just something that I’ll never forget and is seared into my memory, certainly as I think it is for you. I think what hasn’t changed, and what was so interesting particularly hearing Antigone’s story, and actually Jean and Jeff alluded to this, is the stigma. Because coming to the south, I have had an amazing refresher of what stigma looks like and how it plays out in a patient’s life and in their family’s life. So, in Seattle, it was pretty uncommon to be on the infectious disease consult servers and to see a young man, a young gay man, admitted with advanced-stage AIDS. I mean, by the time I left, that was really unusual. People who are dying in a hospital of HIV or had a CD4 count of five is just—as Jeff mentioned, you still see those people—they’re usually people who have fallen out of care, have other challenges to maintaining their health. As soon as I started doing inpatient consult service here, my first consult – two week consult period—I admitted, or we admitted, three young men who were diagnosed with opportunistic infections that were signs of advanced HIV, and it was their first diagnosis. So, seeing that diagnosis in a young, relatively well-educated population (i.e., they had some school, they know what HIV is, you know, it’s not the 80s), it was a real eye-opener for me. And the other component of that was that there were families who were involved, but it was not okay to talk about this in front of families. There were many things about that experience that reminded me so much of the days of being in the ICUs [intensive care units], trying to talk to families about the fact that their son had advanced AIDS and PCP, and their parents didn’t even know he was gay. So, it was really a remarkable reminder that Seattle has a great public health system, and it’s out in a very progresses part of the country. But it’s very easy to say the things that have appeared to advance in those settings are happening in all westernized, industrialized areas, and that’s just not true. The stigma here, it’s really profound. The other area that we really see stigma in here—and it’s going to be, I think, the most challenging issue—is just even acknowledging risky behavior. So, getting young men to recognize that you can prevent HIV with a pill, mainly Truvada and PrEP, is an uphill battle, because they generally won’t come to an HIV clinic, for sure, to get that kind of protection. So, I probably went off on a little bit of a tangent, but I think Antigone’s comment about stigma really struck me. And the other thing that was so dramatic about her story was the immediacy of the stigma that she felt that at one moment she was fine, she was part of society, and then the next second she was different, and she felt different, and she knew everything had changed. And I thought, “That’s incredibly powerful,” and think about that multiplied by every person you have to tell, every person who needs to know, and every interaction you have with a healthcare system. So really, really, really amazing story.
[Time Stamp 00:36:53]
Lorna Lynn: You know Jeanne said that it takes a village, and I think both she and Antigone spoke about how healthcare providers become the support system for many patients, especially those who face a lot of stigma and don’t have the support from family and friends that we wish everyone would have. The importance back in the 80s and the 90s, particularly of the gay community, in advocacy work for all patients with HIV and AIDS, hopefully you’ll be seeing more of that in Birmingham in a coming time. What do you think about that?
Jeanne Marrazzo: Yeah, I mean I think one of the things that they both said that I loved was: we created systems to take care of people. And we did have to invent systems, because it was a completely new landscape. It wasn’t like cancer, oncology care. It was young people where the social networks were different. The medication, the medical issues were different. I think nothing could be truer, and I actually think that’s happening pretty much everywhere, certainly happening here. The challenge here is not that we don’t have people who are doing that. We do. The challenge is to have broader community involvement and acceptance, because you can’t really keep something marginalized and solve it at a societal level. And when you have incident rates of young black men of 10% in the south, that’s not marginalized. That’s pretty mainstream. So, you really do need to broaden the dialogue, and people are – it’s happening. We just actually, here in Birmingham, got designated as a Fast Track city, which is an initiative. We’re the 13th city in the United States to try to get to the 90, 90, 90 initiative by 2030. So, I think it’ll happen, but you just can’t use the same approaches that we used in many other parts of the world, and – and I think that’s true for Africa too. I know you and I have talked about some of the work I have done in sub-Saharan Africa, and some of the studies we’ve done which didn’t go as planned because, we don’t always know what’s going to engage people, and what people are really going to need and want. And maybe asking them to take a pill to prevent HIV is not necessarily the terms that they’re interested in engaging in. So, it’s really brought home that there’s really no one size fits all as we create systems for people to work. It has to be actually embedded in their culture, in their community, and in the society that supports them, or it’s just probably going to fail.
Lorna Lynn: You mentioned 90, 90, 90. Can you explain what that is for anyone not familiar with that?
[Time Stamp 00:39:41]
Jeanne Marrazzo: Sure. So, the 90, 90, 90 goals are something that came out of a number of efforts in the last five year or so, and has been sort of codified by UNAIDS, and WHO [World Health Organization], and CDC [Center for Disease Control and Prevention]. What it refers to is that by a certain point, in this case 2030—although some cities are on track for 2020, and some cities already achieved it amazingly—it means that of everybody who is living with HIV, in a certain jurisdiction, town, city, state, country, 90% of those people will know that they are infected. That first 90 is about diagnosis. The second one is that of those people who know that they’re infected, 90% of them will be engaged in care, and by engagement in care that doesn’t mean that you just go see a healthcare provider and check into the clinic. It means you are retaining care, and that you have a regular relationship with a healthcare provider that’s providing care for your HIV by the way. And then the third 90 is, “Okay, we know you have it. We got you into care. Now can we suppress your viral load—your plasma viral load to zero— and render you not only healthy, by virtue of being suppressed, but also being non-transmissible, or non-infectious?” And I think that Antigone did a very nice job talking about the U=U initiative, which is undetectable equals untransmissible, and that basically means that you got somebody who’s made it through all these three barriers, or three boxes. Then at the end, you’re in care, you’re healthy, your virus is totally repressed, and you’re not going to go out and be able to infect somebody else, even if you have unprotected sex. So, it’s really a path forward in thinking about the epidemic. And there have been models that say, “If we can reach the 90, 90, 90 goal in a portion of the population, then we can end the epidemic,” and that’s what she was referring to—and I think Jeanne Keruly might’ve mentioned it too—that we ideally would love an HIV vaccine, but we really have the tools to end the epidemic now, even before the vaccine is perfected.
Lorna Lynn: That’s amazing news.
Jeanne Marrazzo: It is amazing. Yeah, it is amazing. You know, you just have to be very thoughtful of how to wield those tools in the populations that are going to have the most impact, and that’s where a lot of energy has gone, and I think where it’s appropriately gone.
Lorna Lynn: Since we are talking in advance of World AIDS Day, you’ve told us a little bit about your work internationally, and I’ve enjoyed our conversations we’ve had over the years about that work. I wonder if you could say a little bit more about what you see as the biggest obstacles that we need to tackle, and how we can work better as physicians in the United States and with our colleagues internationally to do so.
Jeanne Marrazzo: Yeah, so I personally think there are two big challenges. I mean these are gigantic societal changes that as physicians I think we have a responsibility to be role models for, advocates for, and certainly understand them. The first is that women are inferior citizens in many countries. They can’t make decisions about their sexual and reproductive health. They can’t make decisions about their financial health and sometimes their social situation. So, they don’t often have access to the kinds of care they need to take control of their health, and by that I mean reliable contraception, reliable prenatal care, and reliable vaccinations for children and for themselves. So when you superimpose something like asking them to take a pill a day, it presents something that they can’t really, necessarily think is going to be their biggest problem tomorrow. That becomes a really big challenge. Many women have so much more formidable challenges in the parts of the world, particularly in Sub-Saharan Africa where HIV incidence is so high. So, this kind of can get relatively de-prioritized, and, as I think I’ve mentioned to you, when we get our large study of PreEP in women in South Africa and other countries, we have fantastic retention. Women came to the visits, they loved the study; they got the STI screening; they got contraception. But as you know, they don’t take any products. They told us they were taking the study products, because they wanted to stay in the study and get care. So, to me that’s like of course people want care. So, they really need healthcare infrastructure, and they need attention to their sexual and reproductive health. That’s a big challenge for women worldwide. And if you look at maternal morbidity and mortality rate, it’s so unbelievable in some countries. It’s just amazing to me. I think the second problem is acknowledging sexuality and sexual health. If you look at the group of people worldwide who still get HIV at the highest rates, on a level of dimension that’s similar to the young women in South Africa, its men having sex with men, pretty much in all countries, certainly in the United States. That is the highest risk group, and why is that? Well, as I mentioned here, certainly in the south, there is still an incredible amount of stigma in some communities and in some areas about same sex behavior, and everything that goes along with that. So, the lack of, I think, acceptance, disclosure, the presence of shame and stigma really gets to the heart of why it’s hard to have really meaningful conversations about prevention with these young men, and to access them. That’s also playing out in other countries. So, really interesting emerging data that reminds people that if you look at the prevalence of same sex behavior in any culture, it’s pretty similar. It’s just that the disclosure is so low because of the consequences in the countries that criminalize homosexuality, that there is really not a very good understanding of how common it is. That said, areas of sub-Saharan Africa start to look at this, for example the cultural region of Kenya, Cape Town and the metropolitan areas in South Africa, Kenya, it’s definitely a major player. It’s just a matter of trying to get those data in often hostile environments. I think Uganda is a great example that every once in a while this kicks up its head, and there’s all these horrible demonstrations against people who are gay. So, I think that the stigma and shaming and vulnerability that really profoundly affect those two populations are underpinning so much of what we’re seeing. And those are challenges that we need to face at a societal level that are not going to be solved by just getting a new a new pill out for preventing HIV.
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Lorna Lynn: Despite all the progress that we’ve made in the past three and a half decades there’s still a lot that we need to do. I wonder what you see coming next in the prevention and treatment of HIV and AIDS.
Jeanne Marrazzo: I think that people are really interested—in addition to the implementation piece, which is trying to get the tools that we have out to the people who need them, and I’ve already talked a lot about the barriers there—I think that the drive towards longer acting products is really pushing the field. And so by that I mean injectable long lasting products—both for treatment and prevention—and also vaginal rings that women can use. People are also very interested in multipurpose prevention technology. So, that means for women having a product that might protect against unintended pregnancy and HIV acquisition, hormonal contraception mixed with an anti-retroviral. I think those are aspirational. The injectable products are being studied now, and actually, for treatment, look pretty good. And so you can imagine that you might come into an HIV clinic every few months for your shot, and you can have a one in everything. But that’s not going to be for everybody, and I think that the key thing going forward is to realize that people need choices. There’s no one size fits all for any of this, and we know that because of Truvada and PrEP, right? Not everybody wants to take a pill every day. On the other hand, women may be very happy to use a vaginal ring for contraception, and oh by the way, that’s great! It actually protects against HIV as well. The long-acting injectables for prevention I think are really still on the horizon. The studies have begun pretty recently, and there are still a lot of ethicacy and safety questions that we have to resolve before those become part of the repertoire. But I would say that innovation in drug delivery using these alternative systems, on top of the implementation pieces of getting the things we know work to the people who need them—to me, that’s really where the exciting stuff is happening.
Lorna Lynn: So, there’s a lot of promise for more to come.
Dr. Jeanne Marrazzo: I think so!
Lorna Lynn: Dr. Jeanne Marrazzo. I want to thank you for your leadership in the field of infectious disease, for your contributions over these many years for preventing and treating HIV and AIDS and other sexually transmitted infections. For our listeners, if you want to learn more about World AIDS Day, please check out one of these websites that can provide you with more information: WorldAIDSDay.org, HIV.gov, and UNAIDS.org. Thank you again.
Jeanne Marrazzo: Thank you.
Antigone Dempsey, MEd, is the Director for the Division of Policy and Data for the Department of Health and Human Services Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau. She is a member of the American Board of Internal Medicine Infectious Disease Board. She served as co-Chair for the Centers for Disease Control/HRSA Advisory Committee on HIV and STD Prevention and Treatment (CHAC) from 2008 to 2014. Additionally, she also served as liaison to the Presidential Advisory Council on HIV/AIDS from the CHAC. She began her work soon after her HIV diagnosis at age 22. She is committed to creating systems that help people live healthy, productive and meaningful lives.
Jeanne Keruly, MS, CRNP, is an Assistant Professor of Medicine in the Division of Infectious Diseases, Johns Hopkins School of Medicine at the Johns Hopkins University, and she has an adjunct appointment in the School of Nursing. She is the Director of Adult Ryan White Services and is a care provider in the HIV/AIDS Service. She is board certified by the American Nurses Credentialing Center as an Adult Nurse Practitioner and a member of the American Board of Internal Medicine Infectious Disease Board. She is also a board member of the HIV Medicine Association and the Ryan White Medical Providers Coalition.
Lorna Lynn, MD, a board certified internist, is Vice President of Medical Education Research at the American Board of Internal Medicine. She has leadership responsibility in providing clinical oversight for ABIM’s evolving approaches to assessment. Dr. Lynn has served on committees of the National Quality Forum and the National Academy of Medicine addressing care coordination, interprofessional education, conflicts of interest, and clinician well-being and resilience. She is a member of the Board of Directors for the American Board of Family Medicine.
Jeanne Marrazzo, MD, MPH, is Professor of Medicine and Director of the Division of Infectious Diseases at the University of Alabama at Birmingham. She is internationally recognized for her research and education efforts in the field of sexually transmitted infections, especially as they affect women’s health. She is a Fellow of the American College of Physicians and of the Infectious Diseases Society of America. She is the Chair of the ABIM Council, and also chairs the ABIM Infectious Disease Specialty Board. She is board certified in Infectious Disease.
Jeffrey Rapp, MD, a board certified internist and infectious disease specialist, is in private practice and a member of the attending staff at Cedars-Sinai Medical Center in Los Angeles, California. His office-based practice is focused on both HIV-related medicine and general infectious disease consultative care while he additionally functions as a consultant for in-patient care at his hospital. He serves as a member of the ABIM Infectious Disease Board. He is the co-Chair of his hospital’s Antibiotic Utilization Review Committee and has co-chaired the Infection Control Committee.