Listen In: Precshard Williams and Dr. Jessica Islam

Parmvir: December 1 is recognized internationally as World AIDS Day. Given the tens of millions of people who have died worldwide, and those living with HIV today, it’s easy to understand why this is part of the eleven official global public health campaigns marked by the World Health Organization (WHO.)

World AIDS Day is dedicated to raising awareness of the AIDS pandemic caused by the spread of HIV infection and to remember those who’ve died of the disease.

HIV can weaken the immune system, reducing the body’s resistance to other diseases. But why is cancer important to consider, and who is at increased risk of cancers and why? Learn more in this episode: “The Complicated Case of Cancer and HIV.”

Dr. Blue: Hello everyone. I am Dr. Brandon Blue. I’m an oncologist in the malignant heme program at Moffitt Cancer Center. And I’m the host of the podcast Cancer in Our Community, where we’re having conversations about Black health equity.

Welcome back for another edition of the podcast where this release coincides with World AIDS Day. So today’s theme will be an interesting intersection between cancer and human immunodeficiency virus or HIV.

To talk about this subject, we welcome our experts, Dr. Jessica Islam and Precshard Williams.

Precshard: Thank you so much.

Dr. Islam: Thank you for having me.

Dr. Blue: Welcome, welcome, welcome. So let’s introduce our experts today so we can really have a good conversation and explain to everyone why we’re talking about HIV and cancer.

So let’s start with Jessica. Jessica received her Ph.D. in epidemiology from Gillings School of Global Public Health at the University of North Carolina. And a Master of Public Health from Vanderbilt University School of Medicine in Nashville, Tennessee. Here at Moffitt, she’s an assistant professor where her work aims to improve cancer outcomes among vulnerable populations, including racial, ethnic minorities, and people living with HIV. She uses a multi-level approach to accomplish this goal.

And let’s talk about Precshard. He is a program manager at the CAN Community Health organization. He describes himself as a self-motivated, passionate public health professional and an educator who is dedicated to ensuring that zip codes do not determine health outcomes.

So, let’s dive into the conversation. Let’s talk to the people listening about exactly why we’re here today. All right. I really want to kind of clear up the definitions. OK. Because there’s a lot of misunderstanding of exactly what we’re talking about when we throw words around like AIDS versus HIV. And so Jessica, I know that you are an epidemiologist and you know, you’ve done a lot of schooling, as I just mentioned, but really, can you help us understand what do those terms mean, and what are we saying when we say AIDS or HIV?

Dr. Islam: Sure, so HIV stands for the Human Immunodeficiency Virus, and is a condition that attacks the body’s immune system, and in doing so, it makes it easier for folks to get sick.

The immune system is the body’s system for fighting disease. So when it’s compromised or weakened, a person becomes vulnerable to all kinds of bacteria, viruses, or other agents that can cause disease. So right now, currently, there is no cure for HIV, and as such, living with HIV is now seen as a chronic condition. While HIV cannot be cured, modern therapies and treatments are available that can help people with HIV live long and healthy lives.

Antiretroviral therapy, also known as ART, is a combination of medicines that slows down the effects of HIV in your body and can help people living with HIV stay healthy for many years. It can also lower or even stop your chances of giving HIV to anyone else.

If HIV goes untreated within an individual, the body is less able to fight off infections, and it can lead to what we call AIDS. AIDS stands for the Acquired Immune Deficiency Syndrome, which means the immune system has been made less effective by HIV. When this happens, a person is considered to have an acquired immune deficiency, but it is important to note that you cannot have AIDS without first having acquired HIV. People can and do live long lives on treatment with HIV and never develop AIDS.

So as I mentioned, HIV is now seen as a chronic condition. For my research specifically, I study the intersection of living with HIV and the downstream development of cancer as a person ages. I study this intersection with a health equity lens, given that the large majority of people with HIV in the US are marginalized populations, putting them at higher risk for acquiring HIV through different behaviors such as sexual and contact and transfer of bodily fluids.

Dr. Blue: Now, some of the people listening maybe never have heard the term epidemiologist, you know, so I think it would be interesting and maybe helpful for the people to just understand what you do exactly.

What does someone who has that title do? And can you explain why you’re here at a cancer center?

Dr. Islam: Sure. So as an epidemiologist, I also call myself a population health scientist. That means that we as a discipline, study the causes and the distribution of specific diseases. There are different types of epidemiologists.

You can be an epidemiologist who focuses on environmental epidemiology, cancer epidemiology, infectious disease epidemiology, and even there’s a term for social epidemiology, which means these are folks who have a specific skill set and ability to apply a certain set of methods to study causes of disease from a social lens. Meaning, what are the different social determinants of health and what are the different factors that impact people’s development of different diseases. So I live at the intersection of multiple disciplines including cancer, epidemiology, infectious disease and social.

As an epidemiologist at a cancer center, my specific charge is to study the causes and the distribution of cancer within the population. Specifically here at Moffitt, we focus on our catchment area. One of the big components that we focus on is people living with HIV given the higher burden of HIV within the state of Florida. So as an epidemiologist, I study that intersection thinking about what leads to cancer among people living with HIV and how can we improve the burden and outcomes associated with cancer among this population.

Dr. Blue: I’m just happy that we have people who study and do things like what you do because, you know, I’m a cancer doctor and people come to me with cancer and I give them treatment. But what you’re doing is researching why they actually got cancer, actually how many people in a certain area have that cancer, you know, and can we make some of these connections because unfortunately we are catching people sometimes too late when the cancer is already spread and already, you know, kind of very advanced. So hopefully with doing some of the research you’re doing. We can actually catch people before they get cancer. So they actually don’t have to see me, you know, so I think that would be fantastic.

Now Precshard I want to focus on you because you are someone who’s in the community. You know, you are someone who is out there door to door, shaking hands, kissing babies, you know [everyone laughs], you’re really, you know, a man of the people, you know? And so, with your experience of, you know, talking to people about sometimes an uncomfortable topic. Sexual health and those kinds of things aren’t something that people are really open about, you know?

And so now that we’re talking about HIV and, you know, the kind of link that people have made to that, can you give us, maybe some insight on how you explain that to people. Like, how do you explain HIV to the community and what this disease could do to their body or to their life?

Precshard: Yes, of course.

Well, we take a different approach nowadays. I mean, obviously, we’ve come from a very dark place when we’re talking about HIV and AIDS, and when we want to really focus on the advancements that we’ve made, the progress that we’ve made, we really want to start changing the language that we use. So instead of going right in and talking about HIV prevention, we use the term sexual health, because it’s a part of your health.

So by coupling it with a person’s overall health, They come at it with a different perspective or a different lens. They’re looking at it as, Okay, this affects me in a completely different way. It’s not just about the shame that’s associated with the behavior around what I’m doing, when I’m doing what I’m doing. But more so my responsibility, not only to myself, but to my community to ensure that I know my status.

Dr. Blue: But one thing that I think that I’m curious of is, you know, people don’t talk about sexual health with sometimes even their own family members. So how do you get them to open up to you, someone they may not even know, and typically think of sexual health as something that is private. You know what I mean? So how do we tell the listeners, hey, this is something that should be discussed. Like, why should they open up?

Precshard: Well, I think it comes down to what Dr. Islam mentioned earlier, intersections, as she was talking about where her intersection is as it relates to her professional contributions to HIV and data.

When we think about an individual, we have to think about them in that same way. There are so many different experiences that might have brought this person to the place where they are today to even look at their sexual health a certain way. So with knowing that we have to have a deeper conversation that would take us in the direction of sexual health.

So we don’t just dive right into it. It’s more of an introduction. What are your thoughts around this? What do you know about this? And allow them to tell us a little bit about themselves and what they know. And that kind of gives me more direction on where I need to go with the conversation.

Dr. Blue: The name of the podcast is called Cancer in Our Community, you know what I mean?

And so I could just see people kind of trying to, you know, check Google or something to try to make sure they’re listening to the right podcast. They’re like, wait, why are we talking about HIV and AIDS? You know, this is a cancer podcast but Jessica, I know this is something that is very near and dear to some of the research that you’re doing.

So can you just help the listeners understand why cancer and HIV are even talked about in the same sentence like what’s that connection there?

Dr. Islam: Yeah, absolutely so going back to access to antiretroviral therapy now that people with HIV are living longer with access to that treatment they’re living healthy lives. Today, the average person diagnosed with HIV in North America can expect to live well into their 70s and 80s, which was not the case in the beginning of the US HIV epidemic.

Back in the 80s and early 90s, people who acquired HIV were left untreated and presenting with AIDS through different symptomatic manifestations including profound weight loss or wasting and thrush, which are different white lesions that may appear in the tongue or mouth and skin lesions. So it turns out that these skin lesions were a type of cancer known as Kaposi’s sarcoma.

So HIV and cancer have been inextricably linked from the beginning of the HIV epidemic. Because of this link, the CDC categorizes certain cancers as AIDS defining cancers, which include Kaposi’s sarcoma, Non Hodgkin’s lymphoma, and cervical cancer. These cancers occur at much higher rates among people with HIV compared to the general population, and are historically categorized as such due to the volume of people presenting with AIDS with these comorbid cancerous conditions at the time of presentation.

In the case of KS [Kaposi’s Sarcoma], it is infrequent that folks even need to go on to any cancer treatment, specifically, unless the cancer has been spread, then sometimes patients will be administered chemotherapy. Otherwise, Kaposi’s sarcoma actually goes away with ART [antiretroviral therapy] initiation. So with the initiation of ART and widespread availability, like I said, now that they’re living longer, the burden of AIDS defining cancers has gone down dramatically over the past two decades.

But as the burden of this category of cancers has gone down, epidemiologists have observed a shift in the distribution of types of cancers that occur among people living with HIV specifically we’ve observed an increase in the burden of what we collectively call non AIDS-defining cancers. So non AIDS-defining cancers include cancers such as prostate cancer, lung cancer, liver cancer, anal cancers, and also occur at higher rates among people with HIV compared to the general population. A number of these cancers are etiologically linked to certain infections, for example, anal cancers associated with the human papillomavirus, or HPV, liver cancer and hepatitis, and so on. So we can expect that after living chronically with HIV, an infection may eventually cause cancer if regular screenings or early detection does not occur.

But what is interesting is several of these cancers are not infectious in etiology. Certain health behaviors have been attributed to the higher burden of, for example, lung cancer, specifically an elevated rate of smoking or tobacco use among people with HIV in the US however, this whole area of risk and incidents and why is it elevated among people who are living with HIV in the U.S., is a whole area of research.

That talks about the risk side. Now, when we think about cancer outcomes, there are vast disparities among people who are living with HIV in the U.S. First, people with HIV frequently present at younger ages with advanced stage of cancer, meaning stage 3 or 4 when the cancer has become metastatic, which is when the cancer is less treatable and more likely to cause poorer outcomes. And they come to you, Dr. Blue.

I want to highlight that people with HIV are presenting with cancer at younger ages than the general population, which is an important point because as we know, cancer screening has guidelines, and the majority of these guidelines are age-based. So one area of my research is to think about ways to highlight this age-based inequity to improve access to cancer screening guidelines and to tailor it to people with HIV, so that they have access to these screenings, because as you know, if you don’t fall within the criteria, insurance is not going to cover your cancer screening. So this is an important disparity and one area of research that I specifically study. And I focus largely on lung cancer, which is actually the leading cause of non-AIDS death among people with HIV in the United States today.

And then the second piece. People with HIV are unfortunately also more likely to pass away due to cancer compared to the general population. This is the case for many cancers, including breast, prostate, lung, colorectal, as well as the AIDS-defining cancers we first talked about. And this disparity is also important because it’s multifactorial.

So first, there’s the biology. Why are people with HIV developing these cancers at younger ages? And once diagnosed, why are they more likely to die due to this cancer? What is it about these tumors, or what is it about the immune system of people living with HIV that may be putting this population at higher risk of death?

There are several folks studying biomarkers of accelerated aging and the tumor microenvironment, including Dr. Anna Coghill here at Moffitt Cancer Center. Now, the second piece, which is where I focus, is the social piece. My lab focuses on what are the social factors that lead to this inequity and mortality, and what is it about the quality of cancer care that may be contributing to these inequities.

This is important because we know that people with HIV are less likely to receive any cancer treatment, regardless of what stage of diagnosis. And this occurs across multiple cancer sites. And this ranges from curative treatment all the way through palliative care and end–of-life care when folks are near the end of the cancer care continuum.

So that’s what I study, why do people with HIV experience this inequity? What is it about their social and built environment that systematically has led to this drop in cancer care quality? And most importantly, what can we do about it? How do we intervene?

Dr. Blue: Now, I think that’s important for the listeners to really understand.

I mean, because really what Jessica’s saying is that not only would people with HIV get cancers at a younger age, but once they actually get the cancer, they’re dying more than other people without it, you know? And so I think that’s really important.

So Precshard, I think this is kind of something that I really want to hear from you about like when you’re talking to the community and you’re talking to folks, do you bring up cancer? Do you talk about how you need to be getting screened and how, hey, if we find out that you have HIV, you got to know that some of these other things can happen like, how exactly do you kind of make that link when you’re talking to the people?

Precshard: So, when we’re talking to folks in the community about the importance of screening, We’re talking to them about the importance of screening for everything. And the reason why we’re talking about that is because with HIV, knowing that there is a risk for their immune system to be compromised, we’re talking about a lot of folks who may not even know they have HIV. And that’s where a lot of the challenge comes from in our line of the work as far as working in HIV prevention and trying to identify folks who are HIV positive and just don’t know it.

So in that moment, in that time, while HIV is replicating what is what we will say because HIV is going to affect the immune system start to replicate by attaching to the CD4 cells, but what in that replication process, the person doesn’t feel it, so they don’t know that they’re sick. They don’t know that they have a disease that could potentially make them sicker. So in that moment if there is other risk factors there, let’s say that they are smokers. If they could potentially already be battling cancer already HIV has a potential to make it a lot worse And that’s what we’re talking about progression

Dr. Blue: But one of the things that Jessica mentioned is that, in people who may have HIV and may unfortunately even develop AIDS, she’s saying that even if they develop cancer, sometimes they don’t even get the treatment for it.

You know what I mean? Do you know why that might be? Like, are you, are you talking to the people and have they given you any insight and say: This is why I may not go to the doctor.

Is it the doctors or what is it that could be potentially some reasons why people wouldn’t be getting healthcare that they need?

Precshard: I think there’s a myriad of reasons, right? And I think this goes back to the different intersections again. What brought a person to the place, to where they are, what experiences might have brought them there. If I spoke on some of what I would think my own challenges would be, I would think, health literacy, not really understanding how to navigate healthcare from the beginning to even start with, and then let alone being diagnosed with something that I may not understand, I may not see representation of this disease.

When I go into a healthcare provider, do they understand me? Do I understand them? How comfortable do I feel in that space? How much faith do I have in the fact that I’m going to be okay in the long run? And I think a lot of that can play into why a person may or may not show up for themselves when it comes to being an advocate for their health.

 My lived experience, as a person living with HIV, I was diagnosed in 2005. So, some people are amazed at my perspective on it because as a person who had no health issues prior to being diagnosed with HIV, I really didn’t have experience navigating healthcare. So it gave me that experience that I would need and then I did some peer work, so helping people advocate and be more involved in their healthcare and stuff like that. I learned how to go in there and have those conversations where you can tell your doctor you suck, you can fire them and you can move on and get another healthcare provider.

But there are so many people who don’t know how to do that.

Dr. Blue: How did you get the strength to do that, because most people kind of keep that, you know what I’m saying? What made you kind of be like, all right, I’m gonna own this kind of thing?

Precshard: Just a natural determination to live. You know, the stigma was much more difficult to navigate back then than it is now. And it was one or the other, either it was going to beat me or I was going to have to work with it and beat it.

And luckily I was working with an organization that I had already been connected to before I was diagnosed. So I had resources, and that really, really helped. And I ended up actually getting a job for that organization. And that’s how I became a peer. So, that same community kind of like raised me and that organization helped grow me as a professional in this work.

Dr. Blue: Now, I really want to try to be there for any of my patients that may have HIV, but sometimes I may just not know what to say or what to do. There might be even some providers listening, either primary care folks or, other cancer doctors and people like that listening, what do you think we could do to, open up or to help people when they come to us seeking help?

Precshard: Well, first off, thank you for that question, Dr. Blue. I think it’s so important and it’s just amazing to hear healthcare providers, professionals like yourself, who have contributed so many years of your studies, to being able to help people who are humble enough to say, what can I do to do my job better?

We just recently did a training, we at CAN, on cultural humility. And I think cultural humility is essential to health care providers. Coming to a place where you realize that you’re just not going to know all of it, and there will be a time where you just need to take a step back and allow that person to be in the driver’s seat and allow them to really show up in that space and celebrate them, celebrate those differences, celebrate those intersections that are in their lives.

I think a lot of times, as a patient myself, I’ll say, coming into a healthcare environment, I could feel so small. There’s so many moving pieces that’s happening in here from the front desk to the nurse and, there’s so little time for me to really bring myself into that space. So I think if providers just take a little bit of time to step back and really pay attention to this patient, not their diagnosis, but who they are, who they’re coming in as, I think that’ll make a world of difference.

Dr. Blue: Yeah. Yeah. You know, sometimes I’ll be honest, sometimes we get very focused on the diagnosis, you know what I mean? We say, all right, this diagnosis, this is the way to fix it, because as doctors, that’s the one thing that we really want to try to do is someone’s coming to us. I hate to use the word broken, but we say, all right, well, let’s fix them.

You know, we, we really want to do that, but sometimes we really have to step back and, and really kind of look at the person as a person and not just a diagnosis. Cause you’re more than just your pneumonia. You’re more than just, you are a person that just happened to have COVID. You’re a person that just happened to have whatever it might be, HIV, cancer but it’s much more than that, so I do appreciate that insight.

Dr. Islam: I actually wanted to add, and really address that piece that you mentioned, Dr. Blue, about providers might be listening to this podcast and what is it that we can say or kind of support them in this journey of treating people who may be living with HIV and cancer as well.

And I wanted to say that this inequity in treatment delivery to people living with HIV was first identified in 2013. So it’s been about a decade that we know that people who are living with HIV are less likely to receive any form of cancer treatment, regardless of different clinical characteristics.

In the wake of finding this out, there have been a group of oncologists within the US who have paid great attention to this and have asked different types of oncologists: if you have ever treated a person living with HIV, how did that go? Like, what, what happened?

What were the different barriers that you face as an oncologist in order to provide high quality care to this patient? And a survey revealed that a lot of oncologists had concerns regarding the fact that there was no guidance, that there was no guidelines out there of what type of care do we deliver to this patient, what are the different factors that I should be considering when deciding what type of treatment regimen to recommend for this patient, is there something that I should be considering since this person is living with HIV, that I may not have been trained on that’s not in the forefront of someone who’s being trained in oncology.

And so, thinking about drug-drug interactions between someone’s ART and the treatment regimen that they may be recommended to, and also thinking about what I know about HIV, that this person may be frail and may have, other factors that may lead to poor outcomes because there are certain factors that physicians consider before even recommending a certain treatment regimen such as ECOG, which is like basically like how robust is the patient essentially, with lack of a better word.

That really revealed some insights into; how do we intervene on the provider level and now there are actually guidelines in 2017 that were published by the NCCN, which is the National Cancer Comprehensive Network. And so it’s in 2017, and the name of the guidelines are: cancer among people living with HIV.

And that provides very detailed information regarding what are the different factors you should consider, what are drug-drug interactions that may occur, and for these different cancers that occur at higher rates among people living with HIV, what types of regimens should be delivered, and the take home message is it should be the same.

As long as the person is immunocompetent and has been taking their ART, the treatment should ideally be the same for people who are living with HIV.

Dr. Blue: One thing that as doctors, you know we typically, fell short of really kind of knowing what to do in certain circumstances, especially when it’s things that can sometimes be uncomfortable, you know what I mean? And so I’m very happy that now we have these national guidelines to help us because sometimes things come up that just are outside of our awareness, you know what I mean?

And especially depending on how long it’s been since some of us have been to medical school a lot has changed. Not only has a lot changed but a lot of things have changed culturally. Things that used to be you know considered normal or just the way things were the culture is just evolving and changing and so we sometimes have to evolve with that. But sometimes we just need a little bit of help, you know I’ll say that because things do change sometimes that does put a group of people kind of behind other groups.

And so I do know that, with each new kind of innovation, it becomes some new opportunity for disparities to occur. And so I do appreciate, really the both of you being able to look at a group of marginalized people and say: Hey, we want to try to really help them and kind of make sure that, just because you have a certain either diagnosis or you come from a certain zip code doesn’t mean you don’t deserve great health care, and so I would really love for, I’ll start with you, Preschard, just to kind of talk about some of the outreach or some of the things that you’re doing to kind of help, close that gap and kind of make sure that people are really getting the right kind of health care that they need.

Precshard: Of course. So with CAN Community Health, what we do in an outreach setting is we first offer services in community through our mobile health testing unit. We have a Mercedes Sprinter that’s completely decked out with two different testing rooms on the inside of it, we’re able to offer rapid HIV testing as well as Hepatitis C testing, and that’s in as quick as 15 minutes for folks to be able to get their result.

If we do get what we would consider a reactive result because we’re not diagnosing someone off of that rapid test, it’s only an antibody test. We’re linking them directly to the clinic, so that way we can get them in for a confirmatory test and then if need be, linking them over to treatment services.

 I’d like to also add that we’re really proud of our partnership with Moffitt Cancer Center because we’re also merging our efforts in outreach together to bring more awareness to the community about the importance of screening for both HIV and cancer, and I’m really proud of it because in a sense it’s going to destigmatize HIV.

Though we’ve made a large stride and great, great advancements in treatment, we are still struggling when it comes to stigma, and combating stigma and talking openly about HIV or just sexual health in general. So I’m very confident in this partnership with Moffitt that we will be able to change that.

We will be able to change the way people view just doing health screenings altogether.

Dr. Blue: Yeah. And what about you, Jessica? I mean, what would be some things that you are trying to do to really close that gap to kind of make sure that people don’t get left behind.

Dr. Islam: So I study social determinants of health and how these factors at multiple levels, including the individual, the health care system, our society, and our built environment, which goes back to of what has been mentioned prior in terms of a person’s zip code or the county or the neighborhood that they may be living in, how all of those factors impact cancer care delivery and quality to people with HIV ranging across the care continuum.

So that means starting from cancer screening, diagnosis, treatment, all the way through end-of-life care. So I’m going to go back a little bit to taking into consideration that this podcast is all about the Black and African American community. So, race and ethnicity are sociopolitical constructs that are man made identities, but have important implications for the health and well being of adults living in the United States, given our history and the historical factors that have impacted our built environments, including basic things like access to education, access to healthy food, how our cities are constructed to promote walking, and the availability of fresh air or open spaces for exercise and walking.

The categorization of race ethnicity due to systemic factors in the United States is a root cause of social determinants of health, meaning that how we as a people in the United States are categorized socially, truly influence downstream factors that impact our health. In the case of HIV, the majority of burden continues to lie among Black and Hispanic or Latinx adults, men who have sex with men, folks with lower income who are on Medicaid with limited resources.

And this epidemiologic distribution of disease or of the HIV, in the US is also true in the state of Florida. My research helps to highlight how these marginalized groups living with HIV will develop cancer and how they are treated for cancer. And then coming to the most important piece, what can we do about it?

I study causal mechanisms through which we know lead to poor outcomes and how we can intervene. This type of information is critical to inform community based programs and organizations such as CAN to improve cancer care delivery to people with HIV.

And as such, partnering with organizations such as CAN is really critical to the success of any interventions that a scientist might believe will improve cancer outcomes. Because things really change when you’re on the ground. And truly the experts in roll out are community organizations, community based physicians, and the community that we’re targeting themselves.

Everyone needs to be at the table.

Dr. Blue: Yeah, I mean, it really sounds like between the two of you, are able to kind of be that bridge, between science and the community, and how do we get people from the community to the science. That’s actually changing and evolving and actually making things better for people.

But then, how do we make sure that once people come over here, that they feel comfortable, that they feel appreciated, that they feel like: Hey, this is something that can actually help them and that they can trust the healthcare system. So, I do think that I really appreciate you guys both would be really being out there in the community and really trying to make sure that we help everyone.

 I do know that, if we think back before, there has been a lot of changes, in culture, meaning that like when people first brought up HIV and the word AIDS, we talked about the word stigma, like it was a very negative connotation that was associated with that. There was a lot of fear as well.

People, previously would die and unfortunately kind of pass away, wasting away, with this condition. We talked about how there’ve been advances and how really at this point, a lot of times it’s a chronic condition because of all the advancements that we’ve made, but what I think is a little bit unclear is how do we kind of merge that connection and say, all right, well what about this stigma? What about the culture that’s changing? And how do we make sure that even though there’s something that may have a certain association or stigma attached, people still need to get these cancer screenings that you guys have described.

So how do we do that? How do we make sure that even though it might be something that previously was once thought of one way. Now things have changed and we can actually make it livable and better for someone. So can you guys just help us understand? We’ll start with you, Jessica. How do we make sure that, we do consider that stigma, but to let people know that we’ve made advances and some of the things that you see on TV and in the movies aren’t necessarily true today.

Dr. Islam: Yeah, that’s a super important question because stigma underlies all sorts of inequities that persist among people living with HIV in the United States, and it’s still an issue today, so I think first and foremost is to be upfront and to ensure that we are all being intentional about the fact that stigma still exists today within our society.

And it’s something that we should be continuing to monitor, and evaluate, and measure. Because if you don’t measure something, you don’t know that it’s there, right? So this is something that is important to continue to measure and ensure that we are addressing if it does come up at multiple levels, including the healthcare system, individuals, families, and our society as a whole.

So that’s first and foremost. Second, I think podcasts like this, education, and ways to get the word out into the communities that are being, you know, disproportionately impacted by these sorts of issues is super important because stigma is actually one of the major barriers to people getting tested, accessing any sort of care, people talking about sexual health, and, and if you don’t talk about it, then you’re not going to be able to learn about it. And if you don’t learn about it, then you’re putting yourself at risk of getting exposed to a certain disease, which is highly preventable.

That’s one thing that I think we should all talk about a little bit more, is about the fact that HIV is highly preventable. There are different types of medications that you can take called PrEP, which if you know that you may be exposed or you believe that you may have some sort of predisposition based on your interactions in your community, those are medications that you can take in order to reduce your risk and ensure that you actually don’t develop or acquire HIV.

And also, just regular interventions that we use on a day to day basis to reduce the risk of any sort of STIs like condoms and whatnot. So I think that’s also important to ensure that we’re talking about the issue because the stigma is really what leads to a persistence in this outcome within the populations that it disproportionately impacts.

And when we think about cancer, I mean, gosh, there are so many ways that stigma manifests itself within the cancer care continuum. I’ve talked to patients living with HIV and cancer who have come to Moffitt, and without going into too much detail, I know that a lot of folks have shared with me on a personal level that they haven’t told their doctors, and sometimes they haven’t even told their families that they have HIV.

Their families may know that they have cancer, but they don’t know that they are living with HIV as well. And so, that really struck me. And it was such a light awakening moment for me to realize that stigma is such an issue still today because as you mentioned back in the 80s when we didn’t have treatment, when we didn’t have any sort of intervention to improve outcomes among this population, that to me made sense.

Okay, people are scared to get this, this infection because they don’t want to die simply. They don’t, they’re seeing their friends die and they themselves simply don’t want to die. But nowadays, even if you acquire HIV, you can take antiretroviral therapy and live a long life like any other person.

And that is so critical to understand. That a person living with HIV, if they’re taking their medication, if they have access to their medication, they’re not only at lower risk of developing cancer, but they’re not transmitting it to other folks. And I think if we as a society, if we acknowledge that and understand that there’s this piece, I think we should talk about that and ensure that folks know to reduce stigma within our society today.

Dr. Blue: Precshard, what do you think? I mean, stigma it’s like what they call the elephant in the room. You know what I mean?

It’s, it’s just right there, in people’s face, but it affects so many things. So, what can we do or what is your organization doing to really help make sure that: yeah, the stigma is there, but it’s something that we can get around and work around.

Precshard: Absolutely. So, just like you said, the elephant in the room addressing it, right? But there’s ways that you address it in acknowledging that one size is not going to fit all. I truly believe that by educating around these issues around these diseases, that we will then eventually be able to combat the stigma that is preventing us from being able to make even more strides at ending these diseases in our communities.

When we’re talking about bringing that educational piece though, thinking outside of the box, we’re not just talking about commercials anymore. We’re not talking about just putting a poster up anymore. We really need to put it in their faces now. I think of traditional events. We at CAN, we try to think about how we can start to integrate some of the work we do into some of our traditional spaces that communities and different cultures may be able to celebrate.

Things like basketball games, where you won’t normally hear about HIV. It doesn’t have to be big and in their face, but it needs to be present. Understanding that just because it works for this culture may not mean that it’ll work for the other culture. And then also having folks who can, put a face to it.

A lot of times folks don’t really believe the information unless there’s somebody who’s really walking that. I’ve had experiences when I’ve done peer work in the past where I would talk to somebody about the importance of reaching viral suppression and they couldn’t understand it. But if I use someone like Magic Johnson, they’re like, Oh, the Magic Johnson pill, you know?

And what that said to me is that that resonated with them because there was somebody. Somebody that maybe they saw on TV, maybe they are popular, maybe they do have a huge following, but they’ve associated that person with it. And because they’ve associated somebody with it, now they now believe that, they can too be in that place.

So I think that by having people who can speak more of it, survivors, us putting them on the front of these campaigns, allowing them to speak more about their experiences, and how we don’t have to allow this to be the end. I think that that would really put us in a different place.

Dr. Blue: But what do you say to the people who are listening, who are scared, as Jessica mentioned, they are alone, probably because nobody knows about what they’re dealing with. What should we say to them? Because again, there might be basing it off of, all the other movies and all the things that they may have read about it, but what can we tell them about 2023 HIV that may not be in the news or may not be on the latest blogs or whatever, but it’s really important for people to know.

Precshard: It’s important for people to know that we’re not living in the same days that we were years ago, decades ago. It’s important for people to know that they are not alone. Though people aren’t out loud and proud and wearing it on their shirts, there are people who are living and thriving, managing these diseases.

There are people who are working in these fields, in these industries who are passionate about the work. It drives them every day to be here, to be in a place to help folks like them. So I think those are the messages that we really want to be able to drive home, that there is help and that they’re not alone.

Dr. Blue: We appreciate you both really for really having a great conversation. But, sometimes it’s like drinking through a fire hose, you know what I mean? It’s just so much information, and so we always try to make sure that people can at least get something, get a drop, get a, get a sip of water. You know what I mean? Just enough to take home with them. So, Jessica, I’ll start with you. If you could say one thing and say, if you couldn’t remember anything else in this podcast, remember this one thing, what would that be?

Dr. Islam: That would be cancer is preventable among people with HIV.

And even if one is diagnosed with cancer while living with HIV, it is treatable. And cancer patients with HIV should receive the same equitable care as someone living without HIV.

Dr. Blue: And Precshard, what would you say? Give people a glass of water, a little bit of taste of exactly one thing to remember if they don’t remember anything else.

Precshard: I would say contrary to popular belief or understanding that following in Dr. Islam’s steps, I would say that HIV is completely preventable and treatable.

Dr. Blue: Well, this was a pretty serious and deep, kind of theme. But we know that there’s things that bring us joy in life, right?

The both of you offer people hope, with your research and with your outreach in the community. What you do is really super important. But, when you’re not working, when you’re not, in the streets, with the people, tell us a little bit of what fills your life with joy.

Are you driving that Mercedes Sprinter? You know what I mean? And hitting the highway doing a hundred, what is it that you guys do in your downtimes as things that just kind of bring you joy and put smiles on your faces? We’ll start with you Precshard.

Precshard: I like going to the gym. Being a person who does manage the disease, it’s super important to make sure that health is on the forefront of my mind.

And then on the other part of that, I’m a Black Southern boy, I love to eat. So I have to push away from that table too often. But I also have to actually put the work in. So getting into the gym has become a hobby of mine.

Dr. Blue: Yeah, it’s always good to take care of our mind, body and spirit, you know what I mean?

And so I do think that’s super important. What about you, Jessica? What do you do when you’re not trying to cure cancer and HIV?

Dr. Islam: Yeah, so I just wanted to say I love this question and the focus on ensuring that we think about hope and joy, even when we’re thinking about these important and heavy topics.

So I’ll just say that my family brings me great joy. I’m married and I have two cats whom I love dearly. My parents and brother live in Tampa as well. So they moved here when I moved here for this job. So it gives me great joy to have family time and enjoy my identity as a daughter, sister and wife outside of the day-to-day grind of being an academic.

And yoga. I love yoga. Breathing is key. It gives me a time to check out, try my best to empty my mind, and just enjoy a good stretch.

Dr. Blue: Yeah, you know, I tried to do yoga a little bit. I don’t have the balance, and I would just fall all the time.

Dr. Islam: It takes practice. Yeah. You gotta keep at it, though.

Dr. Blue: I tip my hat to you, it just wasn’t for me, but thank you.

So, before we wrap up, I just want to make sure that the listeners know that we will be sharing all the key links about the topics and things that we discussed today in the show notes, all right. So you’ll have links to provide for some of these resources. So as Precshard mentioned, you’re not alone.

You know, that there’s actually information out there and people and organizations out there that can give you what you need. And to Dr. Islam to Precshard Williams I just want to say thank you to both of you. The work that you do is so amazing and we really just appreciate you taking the time out of your busy schedules to educate the listeners, educate me and really everyone today.

So I just want to say thank you.

Precshard: Thank you for having me.

Dr. Islam: Yeah, it was a pleasure speaking with you both, and thank you for having me, and I just wanted to give a quick plug, if you’re interested in my work, you can follow me on Twitter @JessicaYIslam, or if you have any questions, feel free to send me an email at:

Dr. Blue: Alright, thank you both.

Precshard: Thank you.

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