Building The Noise with Marcus J. Hopkins: EPISODE 018

SPEAKER_04 0:00

This is the number one thing I want anyone who listens to this to take away. The purpose of health insurance in the United States is not to ensure that you have access to health care. The purpose of health insurance in the United States is to make a profit. And they do that despite being required by the Affordable Care Act to spend 80% of their revenues on health care. They do that by denying care. And in many cases, they know that around 11% of individuals who've had a treatment or a scan or a medication or a divide a medical device like a wheelchair or a walker denied coverage, they know that only 11% of those people will appeal that denial. And of those 11%, between 60 to 80%, depending upon the insurer, um, will get approved. You will be able to get what you need. That number is significantly lower for uh managed care and uh managed care organizations, which are private health insurers that um manage insurance plans for state Medicaid programs and ACA marketplace plans. It's about 1% of denials get overturned. And they know that people just won't go through the process. The purpose of health insurance is to make a profit.

SPEAKER_00 1:23

Welcome to the Building the Noise Podcast.

SPEAKER_02 1:26

Ladies and gentlemen, welcome to the Building the Noise Podcast. My name is Matt Turesco, and today I'm joined by Marcus Hopkins, founder and executive director of the Appalachian Learning Initiative, and a public health policy expert, truly no better, focused on HIV, substance use disorder, viral hepatitis, reproductive health, and rural health disparities. Marcus's work sits at the intersection of data, education, advocacy, and community reality. He helps translate complex public health issues into clearer understanding and more actionable decisions, especially for communities across Appalachia, where access, literacy, stigma, and infrastructure can shape outcomes and be the difference between health or not. On Building the Noise, we talk about what it takes to turn lived experience and community needs into systems that actually respond. Marcus brings exactly that perspective. Grounded, evidence-informed, and focused on impact. Marcus, welcome to the show. Thank you for having me, Matt. It's an absolute privilege. I want to start with you. Tell us a little bit about the Appalachian Learning Initiative and your focus there.

SPEAKER_04 2:39

Absolutely. Again, my name is Marcus Hopkins. I'm the founder and executive director of the Appalachian Learning Initiative. We're a 501c3 nonprofit organization located in Morgantown, West Virginia, and we focus on researching, uh, advocating for, and um really focusing in on adult literacy, adult numeracy, uh, public health, and the social determinants of health and learning in the 13 states, 423 counties, and eight independent Virginia cities that make up the Appalachian region.

SPEAKER_02 3:09

Wow. That I didn't realize it was 14 states that make up that region. 13 states. Okay. Yeah. Any work, because I I know that the uh the college there, WVU, has quite the education program. Um any work with the college at all?

SPEAKER_04 3:25

Um, so I have done some work primarily with the HIV program with uh the positive health clinic that's based at WVU hospitals here in Morgantown. Um and I would like to say that West Virginia University uh has been really focusing in on addressing the issues that are related to addressing adult learning issues and access to learning in West Virginia.

SPEAKER_03 3:49

Yeah.

SPEAKER_04 3:49

But what we've kind of seen over the past 20 years, um, you know, when I when I first entered college at WVU in 2000, um, at most, uh, you know, I was the heights, the heights of that, the WVU era. It really was. Um, you know, we had just kind of transitioned, we we were beginning the transition out of the college that burned couches in the middle of the stream.

SPEAKER_02 4:12

As an Ohio State grad, we did the same.

SPEAKER_04 4:15

We we did a lot of that. Um, and and really it kind of stopped in 2001 after I'd left. Um, but when I started uh WVU, I was actually an out-of-state student, although I'm from West Virginia itself. I graduated high school in Kingsport, Tennessee from Dobbins Bennett High School, um, where I received a phenomenal education at one of the best schools in the state. Um, it has phenomenal music programs, and I was involved in every aspect of the music and performing arts there. Um, but it also allowed me the opportunity to um take phenomenal levels of uh instruction in English literature, English composition, um, Latin. I took, you know, four years of Latin there, and um it was really, you know, a phenomenal uh experience. And then when I went to WVU, what I found was, you know, at the time as an out-of-state student, we were paying, I was paying maybe six sixteen to eighteen thousand dollars a year. Um, and that is now the average of what in-state students pay. And that doesn't even begin to take into account that West Virginia is the sixth poorest state in the country, um, and that access to education is increasingly difficult. Um so when I was working for the community education group here in West Virginia in 2020 19 uh through 2021, um, we were really, you know, caught in that nexus between when COVID hit and two concurrent outbreaks of HIV in the state of Virginia.

SPEAKER_02 5:46

Wow.

SPEAKER_04 5:47

Um so the thing that we discovered was that while we were developing educational materials to try to get people vaccinated for COVID and to adequately test people for HIV and link them into treatment, the people we were trying to reach simply were unable to read and understand the language that we were putting forward. So, you know, the federal recommendation is that you write everything to a sixth grade level.

SPEAKER_01 6:15

Yeah.

SPEAKER_04 6:15

But the reality is, in the most recent um information release that was released by the uh Program for the International Assessment for Adult Competencies, or PIAC, um, the most recent data release indicated that 57% of adults aged 16 to 65 in the United States as a whole are reading at or below an eighth grade level, including 28% of adults who read below a third grade level. So that's more than one out of every four adults who are below the age of retirement who read below a third grade level. And then when we take into um numeracy, which is the you know, analog to literacy uh as it relates to math, you know, we have 62% of adults who uh struggle to solve math problems with more than three steps. And so for me, when we're trying to explain complex topics like um risk statistics or you know, the reasons why you should get vaccinated, the reasons why you should get tested, the likelihood of you acquiring uh a transmissible disease such as viral hepatitis. Um, in West Virginia, we've had hepatitis A and B outbreaks, and we have consistently ranked since 2012 in the top three or four states for hepatitis B and hepatitis C. And a lot of that is due to uh injection drug use, which is rampant throughout the state of West Virginia. Um, so when we're trying to communicate these realities to patients, um, one of the things that we've run into is that they simply can't read or don't understand what we're trying to tell them. So part of what inspired me to start the Appalachian Learning Initiative was that I realized that this was not something that was confined to the state of West Virginia. This is something that expands throughout the United States and particularly in the rural and geographically isolated regions of the country. And not just Appalachia. We're also talking about the mountain west in uh New Mexico, uh, Montana, Wyoming, where rates of literacy and numeracy are also considerably low because you have less access to quality schools, you have less access to quality health care, um, you have lower rates of income, and you know, all of these things are tied together. Um I think one of the things that has frustrated me over the past few years is, you know, over the last decade or more, we have really focused in on addressing the social determinants of health. Yes. Focusing in on how language barriers, geographic barriers, financial barriers, educational attainment, and um, you know, where you live, the communities you live in, how those can impact your ability to um maintain good health, your ability to um uh gain access to services, to understand what those services are asking you to do, and to take control and be a good advocate for your own health. Um and it also, those social determinants of health also impact health outcomes. You know, there's a reason why many of the Appalachian states, including Alabama, Georgia, Kentucky, Maryland, Mississippi, New York, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, Virginia, and West Virginia, there's a reason why many of these states consistently have the worst health outcomes in the nation when it comes to obesity, uh, hypertension. Um, when it comes to arthritis, uh, we have higher levels of uh disability, particularly as they relate to mobility and um disabilities that require assistance. Um and part of that is that we're looking at it as a single issue. We're looking at the social determinants of health as they only apply to health. But the reality is that those social determinants also impact education and learning. If you're sick, if you are, if you are suffering from COPD, if you are suffering from genetic arthritis or juvenile diabetes or juvenile arthritis, how are you expected to then adequately learn? How are you being being accommodated? How are you expected to gain the information that you need to learn to read above an eighth-grade level, to learn how to do basic math problems beyond simple addition, subtraction, multiplication, and division? All of these social determinants impact every other aspect of life. And so I don't think of social determinants as really just impacting health. I think of them kind of as cyclical. Like each one impacts the other.

SPEAKER_02 10:51

Um that's a really great point.

SPEAKER_04 10:53

And and when you look at that, it's um when you start looking at things through that lens, it it really does kind of help you to get a better understanding of you know how all of these things are tied together.

SPEAKER_02 11:05

I think, you know, so many people hear health literacy um and think two different things, right? Um, health and literacy, what do they really have to do with each other? Is it my ability to understand health? Is it my ability to read in a healthcare setting? What does health literacy let's define it for the public so that they're aware, what does that really mean?

SPEAKER_04 11:27

So health literacy is a concept that has um a specific definition in different circles. But the way that um I like to approach health literacy is health literacy is the ability of patients to understand the information that is being presented to them, to understand the implications of any disease state or any health conditions that they're working with, and to be able to take those information and data and apply them in a real world setting. So when I go to my HIV specialist, um, I have been working in the HIV space for most of my adult life. Um and uh, you know, a little bit of my younger life as well. Um but I go in already having a high level of actual literacy, a high level of, you know, I don't want to say high because I'm not fantastic at math. I have a moderate level of numeracy. Um but uh, you know, when I go into my physicians, I can actually talk to them about the disease um that I'm going to see them for. I can talk to them about HIV, I can talk to them about the medications that they recommend and understand, you know, what the side effects are, how those are going to impact my life, um, whether or not I will actually have any side effects. Um and and more importantly, how other um comorbid conditions or concurrent conditions that I have are going to interact with one another, you know, looking at um medication uh contraindications or counterindications, depending on how they're used. And I think when we go to patients uh in areas that are geographically isolated or they haven't had a whole lot of exposure to information or they don't have access to high quality internet, um, you know, internet speeds that can support um actively browsing the internet or support telehealth or telemedicine visits, you know, when we go to patient populations, the the important thing is that we don't talk down to people, um, that we ask them specifically, do you have questions? Do you understand what I have at what you know, do you understand the information that I put forward? And specifically engage them in the healthcare process in such a way that they should feel comfortable saying, I don't understand. This is too this is overwhelming. I don't have a good grasp on this. And unfortunately, the American healthcare system is designed to spend five to ten minutes with a patient and go to the next patient because we are more focused on volume and trying to get as much as we can bill for than we are actually addressing the issues that are focusing that that are impacting us. I know it I know it well, my friend.

SPEAKER_02 14:13

I know it well. Yes. So when you think about the challenge that's ahead of us, I mean, A, it seems like a problem that we can't just spend our way out of. And yes, we need funding, we need to uh build the right programs, but at the same time, what is it that you think that people just don't quite understand maybe about adult learning? Or adult learning specifically in Appalachia?

SPEAKER_04 14:37

One of the things that's been really frustrating is that we are at a time of such political division that we're really looking at places where the um primary issue is who do we trust? Who are trusted sources? And right now, if things have fundamentally changed since we were kids. The reality is that when I was a kid um and I was having trouble in school, it was my parents' responsibility to make certain that I was able to catch up. They were the ones responsible for making certain that I got my homework done. They were the people who were responsible who were responsible for for making sure that I was properly clothed and fed and getting to school. And we have switched to a system um over the past 20 years where education systems, particularly for elementary schools, K through 12, um, where they are not just expected to teach kids how to read, write, to learn history, to learn science. They are expected to serve as um the parents. They are expected to ensure that kids learn morals or the morals that not just morals, but the morals that their individual parents expect them to learn. And when those teachers don't teach them the morals in the way that those parents would like, the teacher is at fault. When the students are not succeeding, it is the teacher's fault and not the fault of the parents. When we have politicians and um the people who listen to those politicians saying that teachers' unions are greedy, teachers' unions are not greedy. Um, teachers do not make much more than the median income in the vast majority of the United States, and now they're being expected to pay out of pocket for school supplies. They're being expected to pay out of supply out of pocket to ensure that the kids get fed, that they're being asked to do so much more with so much less. Um and we see education spending being cut in the majority of states. Uh and that's problematic because that doesn't that doesn't set up generations of school students to succeed. Right now, the current generation uh that has become adults, Generation Z, is the first generation to be less competent than their parents. It is the first generation where they are less able to read, where they are less able to interact with the world, where they have lower social skills, where they're unable to enter workplaces without significant barriers facing them, uh, social barriers, communication barriers, cultural barriers. Um and that's not to say that this is their fault.

SPEAKER_02 17:29

So, Marcus, you were saying that this current generation is one that is the first to be less competent than their parents.

SPEAKER_04 17:38

Yes. Um, so the current generation of Generation Z kids, um, they experienced something that few other generations have. Uh their education was interrupted by a global pandemic. Not for one year, but for two years or three years, depending on the area. And because of this, excuse me, there were there were significant significant deficiencies that are still being made up for today. They lost one or two years of socialization, they lost one or two years of in-class education, which I'm a huge proponent of remote education. Um, but the realities were that in urban settings and suburban settings where you're more likely to have um high-speed internet that was capable of doing Zoom classes or capable of doing online classes, many uh you were more likely to receive educational feedback and input and opportunities than students who were living in geographically isolated and rural areas. In West Virginia and parts of um Virginia, the way that we attempted to solve this was by equipping school buses with high-powered Wi-Fi routers. And then they would go and they would park in parking lots, and then the parents would then have to drive their students to these stationary locations and sit with them in their vehicles while they gained access to educational opportunities. So this was a kind of ingenious solution, except for the fact that not only were the students required to learn in a car, um, the parents were required to take time off from work, to lose funds if they were able to work remotely, and to sit in a vehicle for the entirety of a school day. Which, you know, I don't know if you have sat in a combustion engine vehicle or an electric vehicle for six to eight hours of school instruction. It's a long time. And it's wasteful on gas at a time when, you know, luckily gas prices were low because nobody was using it at the time. Um, but we also, you know, it was a really disastrous situation that will have long-lasting implications and that colleges and universities have not been prepared to address. Um But I think that when we look at adult learning s adult learning systems, one of the things that's really frustrating is that um the federal government uh allots approximately $1.78 for every adult learner who is in need of who is in need of um excuse me, the sorry.

SPEAKER_02 20:32

No, no, no. Take your time, take your time. You gotta give it some time. Yeah, I get it. Um and as you're you're bringing up a really important point. If we look at politics, I don't care where anyone stands on the political spectrum, if we are taking money away from the pupil, or if we have put them behind the eight ball, as you've put thus far, with regards to, you know, my my kids are 12 and 13. They went through that. That was first, second, third grade, some very formative years for them to have to do on their own with our guidance. And you know, we were we are privileged to have in-home high-speed internet. So I can't even imagine for the kids who had to find access to a bus that had a router, right? In a God knows, uh, was it a parking lot, a field? I mean locally here in Morgantown.

SPEAKER_04 21:30

Uh, luckily in Morgantown, most of the places had high-speed internet until you get out into the county settings outside of the city. Um, when you got into those areas, we had school buses that were parked at local volunteer fire departments, at post offices, um, at banks, and they would just park there uh idling for the entire day. Uh, and then adults would be expected to drive their kids to those locations, find a parking spot that was close enough within range of the Wi Fi router, and then connect. The Google, their their Chromebooks to that, so that they could attend classes. And again, it was an ingenious solution, but they also faced other issues. So one of the things, particularly in rural uh and uh geographically isolated states, is that a lot of the students come from lower income families, which means that the only meals that they receive uh from the school are from the school, you know, breakfast or lunch or both. Um so when schools were shut down, students went hungry. They just didn't eat. So again, you have that thing where your hunger and your inability to access food is going to impact your educational outcomes.

SPEAKER_03 22:40

Yes.

SPEAKER_04 22:40

When you're hungry, you don't learn well. When you're tired, you don't learn well. When you're sitting in a car for six to eight hours, you don't learn well. Um, and some counties went really above and beyond. Uh, I know in Putnam County, Kanawha County, and Cabell County, there were local organizations that actively worked to um create take-home lunch kits that would provide the kids at these bus stop location at these bus locations with meals not just for themselves, but for their entire families. Um, and that was something that was really laudable. And it is unfortunate that the food assistance programs that was implement that were implemented in 2020 by the former Trump administration um went so terribly awry. Uh, and many of the funds were misused, particularly uh by unscrupulous um quote-unquote nonprofits or vendors that set up specifically so that they could get these funds only to You mean Brett Favre? Well, so Brett Favre is another interesting case, you know, Mississippi and gaining access to Medicaid funds uh and other well uh welfare style system funds to build a volleyball stadium for his daughter. Um that that was not quite the same. I'm really thinking more about the Ivanka Trump um food initiative that went terribly awry because a lot of these you know boutique vendors and uh you know contractors just you know manifested out of nowhere to take on these big contracts and either did not deliver the food or received the food and left it in warehouses to rot. Um and it it it's really frustrating that that is that is one of those situations that when people hear I'm I'm from the government and I'm here to help, that is what it's from. That is the kind of programmatic failure that gets people to not trust the government. And that's where we are. You know, when we're talking about adult education and who you can trust, right now we are in a political environment where we're being told not to trust teachers. We're being told not to trust colleges and universities because they're filled with elites. Never mind the fact that each of the people who are saying these things went to not just elite colleges and universities, but Ivy League colleges and universities where they achieved elite degrees that only the very rich or the very, very lucky can afford.

SPEAKER_02 25:05

Yep.

SPEAKER_04 25:06

Um, and so when we have issues related to adult education, um, there are usually a few things that people um have to contend with when trying to access it. One, again, the federal government spends about around a dollar seventy-eight per student who needs remedial literacy and numeracy education.

SPEAKER_02 25:26

Um and those are run- Is that because they see it as mainly a state thing?

SPEAKER_04 25:31

Um, it has never been a priority. Uh, throughout the United States, adult literacy has never been a priority. We've always focused on youth literacy um since public schooling became mandatory because they assume that by the time that you're an adult, it is your responsibility to make up for your own deficiencies.

SPEAKER_02 25:48

See, but I would say that, you know, I'm in South Carolina, which, you know, the the western part of our states in Appalachia. Um, even here in a you know, Charleston County is the richest county in South Carolina, there is zero reading assistance programs or dyslexia uh programs in our public schools.

SPEAKER_04 26:08

That is wholly unsurprising. Um, so fun thing, South Carolina is the only state in Appalachia that actively charges for adult literacy and adult education courses. And this is just adult remedial education. Really? Yes. Um so the way that it is usually structured is that um community colleges in most most Appalachian states take up the charge of um teaching uh adult literacy at adult numeracy. And in most of those states, those are offered free to adults who are specifically seeking those programs. In the state of South Carolina, they charge for those, although they do have programs where you can seek financial assistance. But as with every program uh set forth by state or federal governments, if you've ever tried to seek financial assistance, you might it's a labyrinthine, long process where you have to provide a whole bunch of information that you may not have access to and they expect you to have it and they don't communicate well.

SPEAKER_02 27:03

Worse than health insurance?

SPEAKER_04 27:05

No.

unknown 27:06

Okay.

SPEAKER_04 27:07

Because health insurance is by far the by far the worst. Not just health insurance, but really even currently, you know, one of the things that's going to be really frustrating is um before the current Trump administration took office, um, I have collected data points across around 180 different indicators, um, including uh various types of disabilities, income levels, housing, um housing insecurity, uh vehicle ownership, um, housing burden, which is where you it's severe housing burden is where you spend 50% or more of your annual income on housing, um, uh energy burden. So, I mean, multiple disease states. I have collected these data for a very long time. Um, and in December 2024, before the Trump administration took office, um, I went on a mad dash to download every single bit of information from the American Community Surveys, from Places surveys, from the Census, from the CDC, uh, from Atlas. I gathered as much data, I downloaded as much information as I possibly could because I personally listened and read, listened to and read what was coming out of organizations like the Heritage Foundation, where they specifically planned to take government sources of information offline. And literally the first day that the Trump administration took office, the very first thing they did was they started taking websites offline. They started, they told every member of the government uh that they could not speak to it speak to any public organization or make any public statements without first having those run through the administration for approval. They said that any publications that were going to go forward had to be approved by the administration before going forward. And then, since that time, the Trump administration has repeatedly been caught um manipulating data, uh, deleting data that does not align with their political viewpoint, um, and making it more difficult to access data. And in fact, if you go on several CDC pages, particularly those related to HIV, there is now a disclaimer that says a court order required them to restore the page, but the data that is contained therein does not align with, and I'm quoting, reality. Um, and this is particularly rated to anyone who is um gender non-conforming or uh that relates to um uh dispar health disparities across racial demographics.

SPEAKER_03 29:46

Yeah.

SPEAKER_04 29:46

So I had predicted um accurately that the information that was coming out of the current administration could not be trusted. Um and this has created an unfortunate situation where the data we're dealing with um are already two years old because there's usually a the two-year data lag between the time that data are collected and the time that data are reported. Um, so you know, when a government report comes out, such as the annual HIV report that comes out from the CDC, um, if the 2025 report is going to contain information from 2023. Um and that is true across almost every sector. Cancer actually has a longer delay. Um right now, the most recent uh incidence uh data come from 2022, 2023, and it's 2026, so we're looking at a four to three year delay, and the mortality data are usually a year ahead, so three to two, two to three years. Um but again, we come down to that situation of who can we trust? Yeah. And when you are already struggling with reading and with issues related to numeracy, when you have an administration, and not just the administration itself, but politicians who align with them and ad and um pundits who align with them coming out and saying that schools are teaching kids to be communists, or they're not teaching the the history of the United States in a way that is inspirational and that aligns with the viewpoint of the administration. For all of the claims of communism, there is nothing more communist than saying that the information that is being taught doesn't align with the administration.

SPEAKER_03 31:32

Yeah.

SPEAKER_04 31:33

There's nothing, there is nothing more, you know.

SPEAKER_02 31:38

I thought that was the point of our first amendment.

SPEAKER_04 31:39

Yeah. No, there's no, I mean, not even just it's not the point of the I, you know, the First Amendment is one thing, but you know, government-mandated speech.

SPEAKER_01 31:47

Yeah.

SPEAKER_04 31:47

Um, it is something that is really frustrating, and that's kind of where I feel like we've been heading um for the past 18 months. You know, we have been headed to a position where government officials are required to say things. Um, and even if you look at our Department of Justice, um, their official their lawyers have been told that they cannot in court say something that disagrees with the position of the administration. And that is fundamentally against the very fabric of what we were taught the freedoms of this country were to were to be. You know, we already went through McCarthyism where they accused people of being communist, and really that had nothing to do with communism. It really had to do with aligning with American priorities and getting people to fall in line. We have had in our nation a long history of propaganda that um expects you to be a USA is a-okay, and if you're not, you can get out. Um, no, they don't tell you that you have to actually pay a fee to get out. Um, you know, if it were as easy as, okay, well, I'll just book a ticket to England and move there, that would be great, but it's not. Sure. It's not that easy. It is you have to pay expatriation taxes uh based upon the the loss that they would uh the basically the the in the income revenues, the tax revenues that they would be losing based upon your leaving. Yeah. And you know, that's not freedom to me. That's not something that I think is great. So now we have now we have a population of adults, um, and what we've seen, at least in elections, that people who have lower levels of educational attainment tend to uh tend to be on the right hand side of the spectrum when it comes to political ideologies. And so we already have a population that it tends to be tends to have lower levels of educational attainment agreeing with the people who are telling them that seeking additional education is elitist.

SPEAKER_02 33:52

Got it. So really long-winded me to get there. No, but basically, why even um you know, don't worry about your literacy or numeracy, because by doing so, you're going against the party and it's a bad thing to do as well.

SPEAKER_04 34:08

I mean, and we're anti-American. Yeah, I mean, in our generation, yours and mine, we were sold this idea essentially from the time that we started school. It was that we had to go to college in order to make a better life for ourselves.

SPEAKER_03 34:20

Yeah.

SPEAKER_04 34:21

We had to go to college because if we didn't go to college, we weren't gonna get a good job. And that was a fundamental issue. I, you know, my my mother tells me this story when I was 18 and just getting ready to grade to graduate high school. I said to her very stupidly, I'm very willing to admit that I was not that bright at the time. Um, you know, I said to her, You owe it for you owe it to send me to college. You owe me that. And she lost her mind on me. And very rightly so, because you know, that level of entitlement at the time, I I wasn't aware that all of these the way that we were structured is that it was something that our parents owed to us. It was something that we that we needed to do to embedter the country. And now when I look back on it, um, you know, it's really frustrating to see that now with a college degree or a master's degree, we have people entering the workforce who are being asked to work an entry-level income with the advanced education that they were told was going to set them up with a better life. If your business is hiring an intro-level position and asking for multiple years of experience and multiple degrees, that's not an entry-level position.

SPEAKER_03 35:39

Yeah.

SPEAKER_04 35:40

That is a position that requires education. And you know, I think there's an I I I the cynic in me wants to say that when populations are less educated or have lower levels of educated educational attainment, that they're easier to control. That they're easier to manipulate, that they're easier to convince that this is the way that things should be, and that fighting back against that or demanding something better is unpatriotic.

SPEAKER_05 36:16

Sure.

SPEAKER_04 36:17

Um, and it worries me.

SPEAKER_02 36:19

Um yeah, I I would imagine so.

SPEAKER_04 36:23

And and and again, you know, I I know that we part of build building the noise is really talking about health. And that is something that ties in together. Um you know, when you have a population that has lower levels of educational attainment and they work in extractive industries, for example. So we're talking about natural gas extraction, coal extraction, uh, you know, working with working in natural resources. Um, when you work in those fields, because of the way that those extractions occur, you are significantly more likely to develop um health conditions related to those technologies. So, for example, you know, a lot of people, maybe not every, I was about to say everyone, but given the day and age, probably not everyone has heard of black lung disease. So black lung disease is something that was experienced primarily by people working in coal in the coal mining industry. And the United States government set up black lung clinics in the 1950s and 60s to address these issues because they realized that the workforce that was working in coal were dying.

SPEAKER_03 37:27

Can't have that.

SPEAKER_04 37:28

Can't have them in the in the mines. We need those, we need those people working in the mines. And the state of West Virginia um specifically has set up their entire economy to rotate around the existence of the coal industry and other extractive industries. So when I was briefly attending high school here in West Virginia before I moved to Tennessee, um, you know, in the 90s, even when I came back in the early 2000s, in early 2000 to, you know, teach band, um, there was hope in the state of West Virginia. You know, we were gaining access to new technologies really quickly. You know, in in the first year I started college at WVU, you had to call in on a phone to register for classes and know all of the class codes for every single class. By my second semester, we had transitioned over to an internet-based system, which still had its. But in six months, we completely changed the way that the university enrolled people into classes and made it easier and more accessible to everyone. And then, you know, we we we were getting businesses coming into the state. There were um economic development programs that were working to expand people outside, to expand cities outside of the coal economy and convert them over into clean energy technologies. And then in the 2000s, all of that stopped. The opioid epidemic hit West Virginia harder than any other state in the United States. By 2002, there were already articles in the in West Virginia that were demonstrating that people were using Oxycontin at extremely high levels, with 60 to 70 percent of the town having a prescription to Oxycontin. Um, then we saw higher levels of petty theft. We saw higher levels of um nonviolent crime breaking into places to steal things, to sell them, to purchase oxycontin off of the street. We saw in 2002 some of the first injection drug use-related HIV transmissions that the state had ever seen. We had never had them because it was not a big thing. Heroin never reached I mean, it reached West Virginia, but it was not widespread in the 1980s uh here. And then all of a sudden, we see infectious disease coming in. Um, injection drug use in West Virginia at one point over the past five years accounted for 74% of all new HIV transmissions. The national average is 7%. We had a higher transmission rate related to injection drug use than New York City, than San Francisco, then Los Angeles. And the response to that by the state was to shut down syringe services programs, to shut down syringe exchanges, to prevent people from sharing syringes and contracting diseases. Unironically, starting in 2012, when I was talking about the hepatitis B and C uh rates um in West Virginia, the vast majority of those were acquired through injection drug use. At one point in the state of West Virginia, our um hepatitis B rate per 100,000 individuals was 16.2, which is significantly higher at the time than the state average of than the national average of eight. Um our drug overdose rate. Yeah, our our drug overdose rates were more than double the next highest rate at one point. Um, and you know, it's it's really we live in a state where they just where our legislature, whether it was Democratic or Republican, made dumb decisions. Um in 2007, uh they decided that they needed to fund the teacher's pension. Great, but they decided to fund that by selling the futures from the tobaccos, from the big tobacco settlement that was supposed to be used for smoking cessation. West Virginia enjoyed the highest rate of adult and childhood smoking in the United States since the 1970s. And we've just sold off all of the futures, all of the future funds. We put those directly into the um teachers' pension. Also in 2007, they did something equally stupid where they decided, oh, well, now we have all of these people addicted to Oxycontin, but we don't want treatment facilities in our backyards. So we are going to place a legal moratorium on certificates of need so that we can there can only be nine total treatment facilities in the state of West Virginia.

SPEAKER_02 42:04

So they added con laws. Yeah. So that they could not open physicians could not open what the community needed. Correct.

SPEAKER_04 42:14

And specifically, they did not want these treatment facilities located in urban or suburban areas. They wanted them located in rural areas. And of those nine treatment facilities, seven are owned by a single company based out of Nashville. Are you not even in the state? Not even in the state. Acadia Health. They own seven, uh they own seven of the nine methadone treatment facilities in the state. Jeez. So we, you know, it it's it's not a big shock. And then in 2020, 2020 and 2021, we started looking into well, you know, what's going on with these certificates of need. Um, so not only were the certificates of need um regulated by the state, the person who was in charge of those regulations uh at as as uh administrative official also co-owned the company that co-owned the company that provided certificates of need for money. So he had a financial incentive to be in charge of the certificates of need. It just, I mean, the levels of corruption in our government it are insane. And then with the smoking cessation cessation, so we got federal funds to roll over to uh opioid cessation in West Virginia. And what they did was they took the five people who were working for the uh smoking cessation program, fired four of them, and then quietly rolled over the smoking cessation website into the opioid cessation website. And so the smoking cessation program functionally does not exist in the state of West Virginia and has not since 2021. And then, on top of all of this. I mentioned it at the very beginning. West Virginia has seen two concurrent HIV outbreaks in the state since 2018 that are ongoing. They have not been stopped.

SPEAKER_03 44:10

Really?

SPEAKER_04 44:11

You know, people remember Scott County, Indiana, because it had over 230 people diagnosed with HIV as a result of injection drug use in one small southeastern Indiana County. West Virginia has seen five to six times more than that and received no federal, no substantive federal funding, no substantive federal assistance. When the outbreaks first occurred, they sent the CDC here, and the state officials told them that they did not need them. So they don't need you. Yep. And we have two outbreaks of HIV. They used molecular surveillance to determine whether or not these were the same outbreaks. They are not. One in Cabell County, which is separated by one county from Kanawha County, the capital county. So two counties that are separated by Putnam County, they're two totally different HIV outbreaks in the same population. And they did very little investigation outside of the city. So when an HIV cluster or outbreak occurs, essentially what they do is they try to use, um they try to use epidemiologists to go out into the field to the areas where people go. And so when it comes to purchasing drugs, um, you know, because this is injection drug use related, people would come in from Kentucky, Ohio, and rural parts of uh western West Virginia up to Capital County to Huntington to purchase their medic to purchase their um heroin or their um pharmaceutical uh opioids and then take them back because they don't just use them in Huntington and stay there. They go back to the counties and the states where they're from, and then in their own sexual, social, and drug user networks, um they that is where infection can spread. That is where, you know, and there was little, very little field investigation to actually track down these people and deliver them the services they need. And then we have a bigger issue, and this is net this is nationwide. One of the issues with disease surveillance is that when you live in a rural or geographically isolated area, you have to travel an hour, two hours, three hours to get to a city or a suburban area that has medical services. So when you go there and you test positive for HIV, where do you think that HIV positive test is registered?

SPEAKER_02 46:36

Where you're tested.

SPEAKER_04 46:37

Correct. Which means So the counties are all skewed in their data. Correct. So already data collection for infectious disease is horrific. There it's it's often lacking basic information, including um sex, gender, which is separate from sex, which I feel like, you know, needs to be addressed because people seem to play them a lot, um, age range, uh, where they're from, you know, any other concurrent conditions. And when it comes to something like HIV, you know, you don't just take an aura quick test and then you get your positive result and then you walk away, unless you do, because they don't have the confirmatory or a shore test on hand to do a finger prick to send off the blood sample off to Ouraquick to determine whether or not the positive positive result was a false positive. And then once you've tested positive, then what? Well, if you're doing street-based medicine, which I will say um Sean, the HIV director in 2020, 2020, 2021, I don't know if he is still there, um, he was a trooper. He could not get organizations to go out and do field-based HIV testing, and so he personally went out and did it himself. Which I have lived in a lot of different states around the entire country. And I have never seen a state HIV director go out in person on his own time and do street-based medicine because nobody else would do it. And that's not a good thing. That is very laudable of him, but it's very damning about the street of West Virginia. But, you know, we need to really change the way that we gather data because I guarantee you that there are higher rates of not just HIV, but hepatitis B, hepatitis C, hepatitis A that are being counted in urban areas, in Huntington, in Charleston, in Morgan. But those people don't live there. That's where they're treated, that's where they're diagnosed, but they actually live somewhere else. And so there's the high potential that we are missing significant clusters of HIV in rural areas, and we just don't know. Yeah. We are cutting funds to investigate that. And that's fundamentally that's fundamentally problematic. Um but again, you know, this is what uh we have come to expect, unfortunately.

SPEAKER_02 49:05

Um it's the the um people have just given up. As you said earlier, in the 90s, maybe even into early 2000s, we had hope. Right. Hope for the future. Hope for the future that things will change, that maybe the next group of leaders will be better. And they won't it feels like that hope is gone. It does.

SPEAKER_04 49:28

Um and it's unfortunate because there are solutions, there are ways to do this right. Um, and every other country on the planet is showing us how to do it right. Um, I you know, in 2016, um I was working for uh I was a contractor for the Community Access National Network and ADAP Advocacy. And at the time I had um helped to create the HIV Hepatitis C co-infection watch. Um under the um very wise tutelage of uh Bill Arnold, uh, who's no longer with us away in 2020. He was truly an amazing man. And um sorry, 2021 is when he passed away. Um truly an amazing man uh and an excellent purse advocate, you could find no better. Um and so we went to the International Aid Society Conference in Paris in 2016. And before that, they had a hepatitis specific session the the the days before. And um a very wonderful physician from Australia was telling us about how Australia was on track to eliminate hepatitis B and hepatitis C in the entire country. And someone asked her, Well, how do we replicate this in other areas? And her response was, it's just not that hard. And I entreat her to come to the United States and try to replicate the success of the of the Australian uh government in eradicating hepatitis B and hepatitis C in their population, because Australia has universal health care. And they also have a private health care supplementary system where uh certain aspects of health care, uh, you know, some sort some types of reconstructive surgery, cosmetic surgeries, are covered by private health insurance, while the national health insurance covers the things that you actually need. When you go to a country that does not have national health insurance, that is as geographically wide and diverse, we have mountains, we have lakes, we have deserts, we we have forests, we have mountains, all of it. We are not a geographically homogeneous country. You know, you go to you go to England where it's an island and it's relatively geographically homogenous. It is, you know, uh demographically diverse, but the United States, we have pockets of huge, um not just racial but income demographic groups that are vastly different just from zip code to zip code. And reaching those people without an underlying federal um funding infrastructure is virtually impossible. It's it is that hard. It is that hard to eradicate hepatitis B and C in the United States when you have no funding to do it, when the funding is one-sixth of the entirety of just the HIV treatment budget in the United States. When you have, and that was before the funding cuts. Uh, you when you have something like Trump, the first Trump administration's ending the HIV epidemic. So this was a great idea that we were going to focus in on four pillars of um uh you know of addressing HIV, and we were going to start with the jurisdictions that had the highest rates. Funnily enough, despite undergoing being in two concurrent HIV outbreaks, every single state around West Virginia was an EHE jurisdiction. West Virginia was not, although the interstates go through West Virginia, and you know, as we know, HIV doesn't travel, it just stays in one place. Not going to travel through. Not at all. Um and we tried desperately to get them to include West Virginia as a phase one jurisdiction, and they said, no, no, no, no, no, no, not until phase two, no funds until 2025. 2025. We've had two HIV outbreaks since 2018, and you're telling us to wait seven years. Well, 2025 came, and guess what didn't come? EHE funds. Because the whole structure of EHE, which the first Trump administration set up, was specifically designed around three things. Um, one, uh, they looked at the 2017 counts uh for incidents of new HIV diagnoses in each county to determine the to each county and uh certain metropolitan health area determine eligibility for phase one. Well, our outbreak didn't start until 2018. Well, the program wasn't created until 2019. So they were looking at two-year-old data. West Virginia got excluded exclusive. And then uh the second was that your clinic or your HIV services had to serve at least two-thirds of the population had to be ethnic or uh racial minorities. West Virginia has a population of 5% minorities. We are one of the widest states in the nation, not as I realize that. But literally, there is no jurisdiction in the state of West Virginia where two-thirds of the population is going to be a racial or ethnic minority.

SPEAKER_02 54:35

Sure. So they're already behind the eight-ball.

SPEAKER_04 54:38

Right. And then the third thing that they looked at was existing funding structures and um how that they how they could build these up. Well, EHE was an idea. And it started out okay. But the problem was that they tried to create these new programs out of whole cloth with people who were not trained. With people who had to basically not when I say not trained, that's not because I'm saying that denigrating them. I'm just saying they didn't have the training necessary in order to um deliver the services that they need. They were expected to upscale their operations in six to nine months, which is, I don't know if you've ever tried to run a healthcare organization. That's really hard when you have to hire and train enough staff to meet that capacity. And then the reporting requirements were virtually non-existent. So, you know, there there were problems with EHE to begin with, but now you take into account that one of the states with the highest rate of injection drug use-related HIV with two concurrent outbreaks can't access funds for seven for for you know from 2019 to 2025.

SPEAKER_02 55:48

So, yeah, it's probably not spending the money. You know that there's all of these barriers, you know. Not to mention, as as you referenced earlier, too, you know, these are state-level issues at trying to provide a solution. We can't forget that the patients are still living day by day, yeah. And their lives are truly on the line as we think about what they're up against. I mean one of the things I I loved about you, Marcus, and in working together uh on ADAP advocacy work and um you know, trying to challenge the status quo is that you truly are an expert in health policy. You understand how the sausage gets made, so to speak, um, on uh from a policy perspective and the loopholes that are put in these bills on purpose, um, and what to look out for. When you think about health policy, why is it important that you know, not just advocates, but patients in general have an understanding of the healthcare policies that are coming?

SPEAKER_04 56:56

Um so I think one of the things that that that um has occurred this year alone, um as it relates to healthcare policy, is the state of Florida um at the in January decided that the state aid app program was facing a multi-million dollar debt, which conveniently aligned with the amount of money that was spent by the state government to spent by the state government to oppose the abortion and medica uh uh marijuana legalization propositions that had been on the ballot the previous years. Literally, the dollar amount was, you know, roughly exactly the same. Was it was it lawsuit on those? Oh, no, no, no. This was advertisements that the state government paid for opposing these amendments, opposing these propositions that were before voters. Um, so you know, they decided that the state aid app program was out of money. And so their response was immediately to decrease the um income eligibility requirements from 400% to 150%, impacting around 18,000 patients. Uh then they decided that they were going to remove Bic Tarvey from the formulary, which is literally the most prescribed pill-based HIV regimen on the planet, with more than 60% of HIV patients being prescribed BicTeg Revere.

SPEAKER_03 58:27

Yeah.

SPEAKER_04 58:28

Then they decided that they were going to eliminate insurance continuations. So the way that sub that state AIDAP programs are working since the ACA is that the Affordable Care Act allowed state ADAP programs to purchase health insurance off of the off of ACA marketplaces. Um, so if you were a patient with HIV and you were eligible for ADAP, they could spend ADAP funds to purchase health insurance for you, and then they would pay either the premiums or the deductible or the premiums or the co-pays or both, depending on you know the state or your need. So that meant that their outlays went from direct purchasing, which could have been, you know, $2,400 a month for a patient, to $104 for the premium and $35 or $60 for the copay. So it significantly decreased their financial outlay. Um, and then um they just dropped these changes overnight. So immediately Florida advocates um began, you know, raising the flag. You know, like this is a problem, this this should not be legal. Um so they went to the state legislature and some of the advocates with whom I've worked for 20 years told me that back in the day when we had ADAP waiting lists and people were waiting for months or years to get on ADAP so that they could receive life-saving medications, we would have 30, 40, 50 advocates at the state house actively working with legislators to try to get them to see the importance. And this go-around, they had 10 to 14. And this is a problem, and again, it's a generational problem in a couple of ways. One, the advocates with whom I worked, many of them have passed away. They were already in their 40s, 50s, 60s by the time uh by in 2006 through 2013, which is you know, 2013 was when the last eight-app waiting list was ended in Iowa. And um, you know, you look at the the just the knowledge loss, we have not adequately trained or prepared advocates to work in the advocacy space to actually do the jobs that were being done, to go and lobby lawmakers. We have largely transitioned over to a digital society, so in in-phase meetings are harder. Our our gas costs are significantly higher, every cost of life is higher, food costs are higher, hotel costs are higher. So going to the state house to do this kind of in-person engagement is significantly more expensive, and those jobs don't pay well. I would like to say that working as an HIV advocate for the last 20 years has netted me a fortune. But, you know, I am still an ADAP patient. I am still financially eligible to receive ADAP in the state of West Virginia. And this is something that is, you know, yes, West Virginia has a 500% federal poverty level. Um, that's phenomenal. But the cost of medications are so exorbitantly expensive that that is why those FPL limits are so high. And for a state like Florida that already has decent levels of poverty, um, sorry, and I say decent when I say decently high levels of poverty, that already has um significant levels of HIV transmission, to say that we're gonna kick around 20,000 people off of this life-saving program, and best of luck, let they they they were like, well, let me connect you to Gilead Sciences so you can use their um expanding access or extending access program. You're asking now you're asking pharmaceutical companies to already give their medications away in many cases, but now you're asking them to cover a year's worth of medication. Those coupon assist those patient assistance programs have a dollar amount limit. They have a specific dollar amount that you can spend before it just stops working. So then what are you supposed to do? Well, if the state aid app program is no longer covering the drug that you're on, does that mean you have to transition to another drug? Well, if you're still lucky enough to be on the program, absolutely. Yeah, great. Well, what if you can't qualify now because you know what if you can't qualify? Well, okay, well then I guess you're out of luck. And this is this kind of approach to healthcare is exactly how, specifically with HIV, that you create strains of the virus that are multi-drug resistant. Because if you stop taking your medication all of a sudden, there is a 72-hour half-life for Bictig rebeer. 72 hours. And then what happens after that? You need to take the next dose within 72 hours. You need to take the next dose within 72 hours. Or your body, specifically, the HIV virus is a is a retrovirus that uh mutates very quickly. And so if you just suddenly stop taking your medications, eventually down the line, in a month, two months, three months, six months, your body will not respond to the three combination drugs that are in BicTegravir, which means that you could be completely classed out of a medication, that that class of medications will no longer work on you. And this is how we create a worldwide pandemic. And then you have something like USAID being shut off. Yes. When they cut USAID and the PEPFAR program, you know, yes, the the argument against PEPPAR in the HIV community has always been, you know, well, why aren't we dealing with our issues here? Well, one, yeah, sure, because it's a global issue. Um, it's a you know, PEPFAR was a phenomenal program set up during the um George W. Bush administration um to expand access.

SPEAKER_03 1:04:26

Bush one.

SPEAKER_04 1:04:26

Yeah, Bush 2.

SPEAKER_02 1:04:28

Oh, Bush 2, okay.

SPEAKER_04 1:04:29

Yeah, during Bush 2. PepFAR was set up to treat um, you know, to expand access to treatments in Africa and other um developing countries that they just didn't have. And that was phenomenal. And then we cut off USAID because of Doge, because, you know, why not name it after a meme because we're that kind of serious government. And so now we have all of these populations around the planet, not just with HIV one, which is the pred uh which is the predominant HIV strain in the United States, but potentially HIV two, which is significantly harder to treat. And now all of their medications are cut off. And so then what?

SPEAKER_02 1:05:09

I excuse my ignorance. I did not know we had two different strains of HIV.

SPEAKER_04 1:05:14

Yes, HIV one and HIV two. Um HIV two is primarily found in um uh the uh Asian countries and parts of Africa uh and the Middle East. Um HIV one is primarily Western and Northern Africa. I mean it it's the same virus, but it's a different it's a different genotype. Uh it's kind of like how hepatitis C has multiple genotypes, you know, genotypes one through six, and then Yeah.

SPEAKER_02 1:05:41

So you know, Marcus. I have to ask, I mean, you are an expert of experts. What gives you the passion to do this, though, as you've referenced, you are up against it.

SPEAKER_04 1:05:55

So you know, it's it's funny that you ask that. Um a former employer. Employer of mine told me that I should get tested for autism. And this is this is at the age of 40.

SPEAKER_02 1:06:10

Did they do that politely?

SPEAKER_04 1:06:12

No, not at all. So this is when the this is when I had turned 40 or was about to turn 40. And so I went and and I and I went and got tested and I was diagnosed. And you know, they're like, this would have been called Asperger's, but we don't really call it that because Asperger was a Nazi who killed a lot of autistic kids.

SPEAKER_03 1:06:30

Oh gosh.

SPEAKER_04 1:06:33

But one of the one one of the um things with many people who are on the spectrum is that um there is a sense of justice, um, that we want equitable outcomes for people, that everybody should be held to the same standard, that nobody should be better than anybody else. That and one of the things that has allowed me to be successful and at times, you know, worked to my detriment is that I am very bad at recognizing hierarchy. Um, so you know, at a time when I went to an event with President Obama, I spoke to him like he was another guy in the room, which is great for cutting through the bullshit, which is really what it's about. Like I am able to cut through the bullshit and talk to people and get them to understand things because I don't mentally it's difficult for me to be. Right. You know, your t now I will say the one thing I'm very, very, very adherent to is that um anybody, particularly people of color and women who have earned advanced degrees, they have earned a title. I will always refer to them in public or any or in earshot of other people uh as doctor and their name, or that's because you know, they have worked and so hard to attain those degrees. Um, and it is, you know, we consistently see that women and particularly women of color are consistently called by their first names or you know, are not addressed by their titles, and that's something that to me like is unjust. Like they've worked that hard. Why should they not receive the same accolades? So that's something I'm very, very particular about. And I've even had people say, you don't have to, you can, you, you can call me uh Orisha Bower. Yeah, yeah, yeah. Dr. Bowers in public in private, I'm happy to call you Orisha. Um, and Orisha Bowers, if you're unaware, is used to be the um executive director of the uh National Harm Reduction Coalition, and she is a phenomenal advocate uh in living in the Memphis area, and I cannot recommend her enough. Um, she's wonderful. Um, but you know, for me, I have always believed that everyone should have access to the same opportunities. Um, not just health opportunities, but literacy opportunities, educational opportunities, financial opportunities, and not just access too, but access in ways that they need them. Um it is not enough for me to build a ramp to an entrance to a building and say, well, now this is an accessible building. Because if once you get inside, if you once get what if you get to the door and there's no button to automatically open the door and you're in a wheelchair, well then what do you do? You have to wait for someone to open the door, call inside. And then if you get inside, and the only elevator that allows, you know, this was a hotel in DC where we were hosting a conference um back in 2016. Um, you know, we went to DC and the only elevator that was wheelchair accessible that would not put them somewhere that there were a bunch of steps was the freight elevator.

SPEAKER_03 1:09:40

Wow.

SPEAKER_04 1:09:41

And it just, you know, that kind that's not accessibility. That's accessibility in name only. That is, you know, it is nominally accessible. Now well, they've got a ramp to get into the building, but once they're here, they can get up to their room, but they can't get to any of the conference rooms, they can't get to the ballroom, they have to use the freight elevator.

SPEAKER_02 1:10:02

In DC of all places.

SPEAKER_04 1:10:04

Yeah, I mean, and so it is something that drives me. It's something about which I'm passionate. When I when I see someone um who is struggling to read or, you know, struggling with math, my first instinct is not to make them feel shame for being unable to do that. My first instinct is to say, hey, what can I do to help? Um, and you know, even when I worked in retail and weighted tables, because I did weight tables and bartended, because again, advocacy does not pay a lot of money. Um I waited tables and bartended for 18 years, and I was really great at it, not and and when I worked in retail, I was really great at it, not because I focused on selling the highest dollar amount, but because I went in and I asked people, so what are you looking for? Okay, so what's your price range? Looking at your price range, here are some high, middle, and lower tier options you can choose from. Here are the advantages. So I go in knowing what I'm talking about. And if I don't know what I'm talking about, I will reach out to someone who does and connect you with that. Um, and I will say something that this is gonna be unpopular in the HIV space. Um, there is a significant issue in not just the HIV space, but in grant-making spaces. When I talk about grant making making spaces, um, particularly in HIV, 80% of funding worldwide globally comes from pharmaceutical industries. 80%. That is worldwide across the planet. And in the United States, Gilead Sciences significantly contributes around 60% of that.

SPEAKER_05 1:11:38

Yes.

SPEAKER_04 1:11:39

Um, and I will say exactly the same thing I've told everybody else. For all of the funding that Gilead Sciences and other pharmaceutical companies have provided to help with advocacy, not one time, not one time in 20 years has a single pharmaceutical representative or any pharmaceutical company employee ever, ever, ever, ever stepped in to say, you can't write this, you need to change that. And I am not, I am not quiet about the fact that I think that we need to fundamentally dismantle our for-profit insurance scam in the United States and replace it with universal insurance. I'm not at all quiet about saying that when they introduced uh when they introduced um their second hepatitis C drug at $96,000 for a 12-week course of treatment, that it was basically theft because they knew Medicare would pay for it. I have not been quiet about criticizing them. The only times I have ever been called to scale back what I was saying have been from national HIV organizations. From national HIV organizations. And when it comes to funding, there is a significant problem. Um, Vharmaceuticals, for example, has cut off, they have revised their funding structure with their program. Um so now the only people who can apply for Viv funding are people who have already received money from Viv. So no new organizations can apply for that. Which is great because you know, we talk about the need for innovation and the need to break out of these structures that have not served us well, but now the only people that can receive funding, funding from the organization that releases long acting that that makes the long-acting injectable medication, uh, the Cabotech Revere or Cabo Nuva, now they're saying that they won't fund new organizations because you haven't received funding from us. And so there's a hoarding issue that I talk about in in some of these fireside chats where large organizations um hoard contacts at these or pharmaceutical companies so because the dollars are limited. People know the dollars are limited, but you know who to talk to to see if you can possibly get $5,000, $10,000, $25,000. And I can't introduce you to that person, sorry. That's problematic.

SPEAKER_02 1:14:03

That is ridiculous.

SPEAKER_04 1:14:04

It's problematic, and it creates a situation where new organizations that are working to address healthcare issues, not just with HIV, but around the various disease states. Um, you know, people don't like to admit this, but a lot of funding that comes from our pharmaceutical companies is based on relationships. And if people are denied access to the people to with whom they should build those relationships, build one, yeah. Then we have essentially created an elitist structure.

SPEAKER_02 1:14:32

Yes, very much so. I bring it back to elitism. So it's it you bring up a great point, and and you know, the general public doesn't quite understand. Uh and and Brandon had a great comment on this that if you think by me taking industry funding that in any way I can't make my own decision. What he he calls it, paternalistic ableism. Absolutely. Right.

SPEAKER_04 1:14:58

Um, and you know, with three with um ADAP advocacy and and when I was uh still contracting with Community Access National Network, one of the big drums to bang was the 340B program. Um and, you know, I think anyone who has ever heard of the 340B program has probably only heard the words, and then just how the program works in and of itself causes their minds to explode. Because it is, uh, you know, for those of for those listeners who aren't familiar, um, you know, the 340B program was created in 1992 as uh part of the Veterans Healthcare Act and uh essentially mandated that pharmaceutical companies and drug manufacturers uh were required by this law to provide load for to provide significant discounts to providers in order to continue selling their medications on Medicaid markets and in Medicare. So in order to continue to sell their medications to the populations who needed them most, they had to agree to the 340B program. And so the way that I mean not just take a massive hit, but the way that it works is so not only do they have to provide a low price, a low purchase price to covered entities who have to have a pharmacy attached to them and it only works for outpatients. Um then once you've paid the lowest price for your drug, you sell the drug to the patients, and then it depends on whether it is monthly, quarterly, annually, um, they take the difference between the list price of the medication provided by the pharmaceutical companies and the price that you paid and the difference in between. Pharmaceutical companies are then required to provide covered entities with the difference between the top number and the bottom number, and that is taken in as revenue. So ADAP advocate ADAP programs, state ADAP programs, um, are a government-funded entity. And because they're funded by the government, they are required to report not just how much they receive each year in uh 340B revenues, but how those revenues are spent. Other types of covered entities, um, including multiple types of profits, uh, not sorry, not multiple types of nonprofit hospitals, uh, including disproportionate share hospitals, uh, sole source hospitals, um, children's hospitals, uh, cancer treatment facilities, so infusion facilities, um, black lung clinics, um, which are also which also have transparency requirements. Aside from a handful, so I think uh hemophilia clinics, black lung clinics, and HIV clinics, no other 340B covered entity is required to publicly report how much in revenues they bring in or how those revenues are spent. There is no transparency whatsoever. Uh, and as one um phenomenal advocate uh stated, the number one rule about 340B is that there are no rules. When hospital executives go in front of a congressional body in a hearing and say that if they impose transparency requirements, they will not comply. That is a problem.

SPEAKER_03 1:17:55

Yeah.

SPEAKER_04 1:17:55

That is a problem. And so 340B is one of those programs that literally, yes, it does allow rural hospitals and federally qualified health centers and cancer infusion treatment centers that are located in lower income areas and safety net populations, as they like to call them. Um, it does allow them to remain operational. But the reality is that we don't know how much of those 340B revenues are spent to extend or expand access to those safety net populations, which is the both the letter and the spirit of the law. You know, yes, one of the things that we like that that they like to say is that people believe that the 340B program, that funds from 340B are required to be spent on patients. They're not. That is not the selling you think that and that's a bigger problem. Yes, you just brought up a great question. What is a patient? So currently before Congress, there are two separate 340B bills that try to define patients slightly differently. And I have an issue, you know. You know, we we had a meeting with pharma, the lobbyist, the lobbying organization that lobbies for pharmaceutical companies, which is F P H R M A, not pharma spelled like a pharmacy. Um, you know, I asked them specifically, you know, right here the definition of a patient says that they have to have seen a physician uh that is prescribing them the medications within two years. Well, in rural and geographically isolated populations and areas, it is not unheard of for a patient to be on maintenance beds like a high blood pressure medication and just be fine and operational and receiving those medications without seeing their physician for years because nothing's changed. Not a lot changes. And so, you know, when we define patients that they have to see them within a year or within two years and have a face-to-face vision, it can't be a telehealth or a telemedicine visit. So now you want people, and and and I say this I'll just relate it to West Virginia. So there are two Ryan-White treatment clinics in the state of West Virginia, one in Morgantown where I live, and one in Charleston. And in between that are three hours on the interstate. If you live to the sides of those interstates, so then you have to travel an hour to get to the interstate, and then another hour and a half or two hours to get where you need to go to your clinic. And that is when you can see the in-person because there's no telehealth, there's no telemedicine opportunity there because they don't have the infrastructure to support it. So now you're expecting people to go there and back multiple times a year, and not just for medications and treatment, but to qualify for the AIDS drug assistance program, you now have to re-certify every six months or a year. So now we're asking them to do that multiple times a year. We're asking them to have to do it in person. We're asking them to provide information to which they probably won't be able to gain access over the internet because, you know, everything's done digitally now. We're asking them, you know, to provide information that they may not have. What if you don't have a home? What if your home address is literally just the address of the clinic? You know, we we are not a healthcare system, and we don't live in a country where there is grace. And and this is a this is another drum to bang. Uh sorry, I know that this has gone way over. Um, you know, one of the things that I think is vitally important is that we change the way that we change hours of operation. It is insane to me that outside of emergency rooms, there is not a 24-hour healthcare service to be found in the United States. That people who are expected to work emergency room only, right? Right. That the people who are expected to work a full-time job or even a part-time job have to, if you're receiving hourly wages and you're not salaried, you have to take time off of work to go to the doctor, which is only open during business hours.

SPEAKER_02 1:21:48

So you have to lose revenue.

SPEAKER_04 1:21:50

You have to lose revenue and then expend revenue in high dollar amounts to receive the care that you need. And this isn't just for individual patients, this is for pay for people who have children, this is for eye appointments, for you know, dental appointments, this is for every kind of healthcare appointment and not just healthcare. It also applies to the DMV. So if you have to have a driver's license, which if you live in a rural area or a geographically isolated area, you will not have access to public transportation. And if you do, it is sparing and rare. You have to have a personal vehicle. Well, when you are lower income, you basically have a poverty tax. So you have the cheapest vehicle you can afford, which is the most expensive to repair because the issues that occur with it are often the most expensive. Like you've your transmission goes out and you have to replace that. And that's often worth more than the car. Yeah. You know, then you're trying then you can't get to work. So then you can't make money. Then you can't do this, then you can't do that. And it's the the concept that things are only open during business hours, particularly as it relates to healthcare, is insane to me.

SPEAKER_02 1:22:58

Do you think that's a social determinant of health? It seems like it. 1000%.

SPEAKER_04 1:23:02

Not just as it not only is it a social determinant of health, I mean, it really places, you know, when emergency care is literally the only available care. What when people used to talk in the 2000s, in the 90s, 2000s, and and even now, you know, more people are going to emergency rooms for non-emergencies. Yeah, because they don't have an option.

SPEAKER_03 1:23:21

Yeah.

SPEAKER_04 1:23:22

That is the only provider of care for them in a three-hour drive. You want that, you know, and more to the point, we have such low levels of health literacy in the United States and literacy and numeracy, that a lot of times people don't know that the issue that they think is emergent is not emergent. Sure. They literally don't know. Um, and then you have people who delay care. You know, with rural populations, often we see can't, you know, cancer, HIV, and other infectious diseases diagnosed so late that they're already in the end stages. We have a lot of, you know, stage three and four cancer diagnoses in Appalachia because they have avoided care because it's not an emergency, because they don't know that something's wrong. Because to an annual screening, it's an hour to two-hour drive. Uh, and you know, one of the things um that I tell people about and they don't believe exists, and this drives me crazy. Um in the 2000s, it it started kind of in the 90s and 2000s, um, but it continues today. Uh in Kentucky, uh, Virginia, Tennessee, and North Carolina, kind of in that little four-state circle. Yeah. Um, they have annual health fairs where they will go to a fairground and they will park mobile medical units with dentists, with can't with um ophthalmologists to do uh eye exams, with um, you know, to with uh oncologists with basic health needs to do health screenings, to prescribe medications, to, you know, literally dispense medication prescriptions on site, and that's once a year. And they go there, and people will travel from 200 miles to get there, and that is the one time they can access healthcare at in a year, and get all of their meet, all of their needs met at one time.

SPEAKER_03 1:25:15

Yeah.

SPEAKER_04 1:25:16

And that's not something that should be relegated to Appalachian, Kentucky, or Virginia, or Tennessee, or North Carolina. That's something that, you know, that kind of meet the community where they are for no or low cost treatment, that should be standard. That should be routinized. That's not something that should be a one-time thing. That's something that people should have access to everywhere at all times. And we can't we cannot as a country bring ourselves to invest in the health care of our citizens. And it's really true.

SPEAKER_02 1:25:52

We we don't invest in health. We invest when they get sick. Correct. We don't have health care, we have sick care. Yeah. Um yeah, sorry. Yeah, go ahead.

SPEAKER_04 1:26:02

You know, um there was uh there was uh you know, I loved him. Uh I he was a phenomenal representative from the state of Florida, Alan, and I can't remember his last name. He very famously said that the Republican health the Republican healthcare plan was don't get sick. And he changed to another slide, if you do get sick, die. Um, and it was one of the most effective pieces of a floor speech I've ever seen by a representative that so accurately describes the American healthcare system. Don't get sick, and if you do get sick, die quickly because you're too costly.

SPEAKER_02 1:26:35

Sure. And it's it it's what many patients feel today. Yeah. So I have to ask you. My last question for you. If you were to go back to when you got diagnosed yourself, what would you tell that version of you? Knowing what you know today and everything you've accomplished.

SPEAKER_04 1:27:01

So um I was diagnosed on April 12th, 2005 in Atlanta at 8 Atlanta, and um when I went in, the testing process itself was something that I teach people not to do. Um, when I was the first person at 8 Atlanta and I walked in, and um this guy goes, Hey, welcome to 8 Atlanta. My name is Ryan, and I'm a volunteer, and everybody else is in a meeting right now, but don't worry, I have a checklist. So wait just a few seconds. So, you know, I wait in the lobby and I go back and he starts going through this checklist of questions, you know, like, why did you come in today? What makes you want to get tested for HIV? What are you going to do if the test comes back positive? And so that was the question. And I said, Well, I mean, you know, I grew up in the middle of the HIV epidemic. I I I know about it. Um, I'll just take the confirmatory test and then I'll figure it out. And he goes, I'm so glad. Hear that. I'm glad that you're not thinking of it as a death sentence. Well, I wasn't. I guess now I am. Thanks for putting that in my head. Yeah. So so he, you know, gives me the Aura quick test, which was relatively new. It's an oral swab, and then sends me out into the lobby. And when I get out there, there uh you know are two other people waiting in line, and the receptionist has arrived. Um and then Aura quick is a 15 to 20 minute test. So 45 minutes go by. And at this point, you know, I am aware. Like this is not going to go well for me.

SPEAKER_03 1:28:32

Yeah.

SPEAKER_04 1:28:33

He comes out carrying literally two arms load worth of rapid tests and drops them on the receptionist desks. And he goes, Hey, can you go ahead and take care of these tests for it for me? Because I'm going to talk to Marcus for a little bit. And I'm like, No.

SPEAKER_03 1:28:50

Wait.

SPEAKER_04 1:28:50

Well. Well. So I go back and so he goes through the checklist again. You know, what are you going to, what are you going to do if the test comes back positive? You know, again, I will take the confirmatory test and then figure it out. And then he reaches across the desk to me and places his hand on me and he goes, It's positive. And starts crying.

SPEAKER_02 1:29:11

He started crying.

SPEAKER_04 1:29:12

He starts crying. And so I'm sitting there, I mean, already I'm not aware at this point that I'm on the spectrum. And so my response is, are you gonna be okay? Are you gonna make it? And he said, I'm sorry, it's just really hard to deliver this news. And I just don't do you need my phone number. And I'm like, this is a testing clinic, not a bar. I appreciate the concern that if I need someone to talk to, but this isn't it's wholly inappropriate. Um, and then I went to work. Uh, you know, I got my result and I went to work and I told my manager, and my manager, this was in at a macaroni grill in uh Dunwoody, Georgia, and he's just like, Well, you know, you may you need to make sure you call everybody and tell them. And I'm like, I mean, yeah, I get that. He's like, Are you gonna be safe to work here? And I'm like, Yes. It is 2005. We know that HIV cannot be spread in a restaurant. It is not 1985. So I called my mom, called my dad. Um, you know, dad said, Well, just make sure you're still alive to see your sister graduate. Like, you thanks. Thanks, Dad. Mom was like, I can't believe you did this. You're so smart. What what like what is wrong? Like, you know better. You knew better. Yes, I did, mom. Yes, that's how it works. You're trying to kill me, or yeah, mom, that's how it works. I get no die. Um, so again, a great. I I love my parents. It's we have this kind of again, didn't know I was on the spectrum, back and forth, like New England, Northeastern kind of uh antagonistic relationships between all of us. Where you know, we show love we show love through insults. Um and um at the time, uh and this did not change until I think 2010-2011, um, the treatment protocol for HIV was that um you could not be prescribed HIV medications until you were diagnosed as AIDS. So the way that HIV works is that when you're diagnosed, um, they take two numbers that they're concerned with. One, your CD4 count, these are your T cells, and the other is your viral load, which is the number of actively replicating copies of the HIV virus in your system. Um, the confirmatory test showed that I hadn't reached that my T cells had not dropped below the 250 mark that was required to be diagnosed as AIDS. Uh, and then in 2007, in October, um, I developed a pararectal abscess, which um I attempted to get treated twice at the ER. The first time they said it was cellulitis and prescribed me back trim, which I'm allergic to sulfur drugs. And if you've ever lived in Fort Waterdale, uh, you have to walk in the sun. And so I developed second degree burns of photosensitivity caused by sulfur drugs. Uh, I was briefly in a medical textbook used in Florida for a photosensitivity reaction to Back trim. Um and then went to the hospital for that. And they switched me over to a different drug, and then I literally crawled physically on my hands and knees into my workplace uh because I was the head trainer at the Macron agrillment plantation, Florida. Um, I'd worked for seven different locations at that time. And uh I was supposed to train people that morning, and they sent me to the hospital. And while I after I'd had the surgery, um, you know, they uh, you know, I just said, hey, tested positive in 2005, and I haven't really, you know, paid any attention since. Can you please run my numbers? And so the blood work came back, and my viral load was only 250,000, uh, which is surprisingly low because my CD4 count was 67. Um and 67 is quite low. Uh, and that's 67 CD4 cells per milliliter of blood. So that's how that number works. Um, you know, I was uh referred to Dr. Margaret Gorenzik at um at uh St. Joseph's Hospital, I believe it was St. Joseph's um in Fort Lauderdale, it was a private hospital. Um she used to be at the Cleveland Clinic in Ohio. Um she was phenomenal. Uh and she told me, Well, you don't have a lot of AIDS, they're just really angry. Um you don't have a lot. Uh and at the time, the only single tablet regimen that was out was a tripla, which had a huge number of side effects. And so they put me on a three-drug regimen that I had to keep refrigerated and had to take at the same time. Uh Lexiva was the one I had to keep refrigerated, and at the time it was prescribed by weight. Um, at the time, I most of my adult life before 2013, uh, I was 105 pounds with a 23 and a half inch waist as a professional dancer. Um, I was a performer, I was strong but wiry. Um, and they prescribed me for a normal weight adult. And so that don't work. Yeah, no, no, it actually caused me to hear things in an like I would hear something, and then like 45 seconds to a minute and a half later, I would hear it again. So I made so many multiple rounds of drinks. Like, oh my gosh. Can I have a rum and coke? Sure. And then I would make another one, having just heard it in my head again. Uh oh my goodness. So much alcohol wasted in a single in a single Friday night. Um, they went back, they corrected the dosage. Um, but what I wish I had learned um is kind of what I already knew. Um, one of the very first things when I went back to college at East East Tennessee State University, I briefly moved back to Tennessee um after I left Fort Lauderdale to stay with my mom for about a year and a half before I moved to Los Angeles. Um and um when I went to my college professors, the very first thing I did after the first class was say, Hey, um I have AIDS. I've been diagnosed with AIDS taking medications that have side effects. Um there are gonna be some times when I won't be able to get out of bed. There are gonna be some times where I will seem distracted in class. Um, I'm asking you to work with me. Uh if, you know, if I miss a test, uh, I will email you and let you know why. I will come and do the work and make sure that, you know, I will do 100% of the work. I just need some accommodations. And luckily, every single professor I had, including the amazing Dr. Kelly Dorgan, um, Professor Dr. Kelly, Professor Kelly Dorgan, um, I was working I was majoring in health communication and she was my advisor. I could not have could not sing this woman's praises enough. She was really the person who turned me. I had originally wanted to go for sociology, um, focusing on uh population level health with and in rural health, and she switched me over to healthcom. And she actively worked in research um around cancer and other infectious diseases in Appalachia, um, and you know, working with health communication and communicating effectively. Um you know, everybody worked with me. And then when I transferred out to school in Los Angeles, everybody worked with me. And one of the things that I wish more people knew is that um know your rights. Um HIV is considered AIDS is considered a disability in a lot of places, um, and uh discriminating against people based upon their HIV status is uh federal as against uh federal law. Um and uh there are still many, many, many, many rules in multiple states and in some pieces of federal legislation, particularly in the housing arena, where they are allowed to deny housing to someone who is living with HIV.

SPEAKER_02 1:36:27

Really?

SPEAKER_04 1:36:28

Uh yes. Um there are significantly don't be afraid to be an advocate and to be your own best advocate. And don't be afraid to advocate for yourself. Um, don't be afraid to educate people. And a lot of times, you know, one of the things that I hear regularly is Google it. Well, I don't know if you've noticed, but Google now has AI, and Google has been fined by the European Union and they are now being held liable for false answers that are provided by their AI to the tune of several hundred million euros.

SPEAKER_02 1:36:59

Um but not in the US because they get away with their user agreement. Yeah.

SPEAKER_04 1:37:04

Right. So I mean the the the reality is Google it is not a good enough answer. People can do healthcare research, um, but you know, one of the things that I think that we're seeing right now with a record measles outbreak in the United States for the first time since 1969 is that doing your own research often results in catastrophic outcomes. Talk to people who are experts, and people living with diseases themselves are often the best experts because we have to learn on our feet.

SPEAKER_02 1:37:36

Yes. We have to learn on their feet. And that's where industry, in my opinion, really needs to do more work in engaging with patients. Healthcare is the one economic vertical that does not recognize its end user as its customer. Correct. Um, you know, I think we're we fall because of it.

SPEAKER_04 1:37:57

Yeah, I you know, I think one of the things that again that we talk about, um the IRA, the um the inflation reduction act included a provision that allowed state allowed Medicare for the first time since uh the passage of Medicare Part D to negotiate drug prices with drug manufacturers. And drug manufacturers pay this. Um, in part because you know, Medicare is essentially their only absolute guarantee place where someone's gonna pay the price of their medications. Um and um I'm not gonna say that the Trump administration's most favored nation's pricing boondoggle is effective in part because um the creation of Trump Rx.org.gov um was supposed to be a clearinghouse where you could go to find cheap medications that you could pay out of pocket for, but really ended up being short-term agreements. For example, you know, the one to get uh Wigove Wagovy injections or pills, um, in order to get the reduced price, you had to get them by March 30th of this year. Um the website went live in January. So you had three months. Yeah. Not even. Yeah. So um um, you know, the the the kind of it is an easy sell to consumers to say that medication prices are too high. Um, but one of the things that we don't often talk about is why are why are health costs so high in general? And it is because we have a for-profit healthcare system. It is because we have a system that hospitals have to negotiate not with a single payer, which is universal healthcare, you know, where they negotiate a rate with just one payer. No, they have to negotiate with tens, twenties, hundreds, scores, thousands of different healthcare plans, each of which are different based upon your zip code or the plan that you've got. And they have to negotiate with these individual insurers for various rates, not just for services, but pharmacies have to do that for every medication. State Medicaid programs have to negotiate prices for everything. And when you spend that much time negotiating on drugs, the purpose, and this is the number one thing I want anyone who listens to this to take away. The purpose of health insurance in the United States is not to ensure that you have access to health care. The purpose of health insurance in the United States is to make a profit. And they do that despite being required by the Affordable Care Act to spend 80% of their revenues on health care. They do that by denying care. And in many cases, they know that around 11% of individuals who have had a treatment or a scan or a medication or a div a medical device like a wheelchair or a walker denied coverage, they know that only 11% of those people will appeal that denial. And of those 11%, between 60 to 80%, depending upon the depending upon the insurer, um, will get approved. You will be able to get what you need. That number is significantly lower for uh managed care and uh managed care organizations, which are private health insurers that um manage insurance plans for state Medicaid programs and ACA marketplace plans. It's about 1% of denials get overturned. And they know that people just won't go through the process. The purpose of health insurance is to make a profit. And as long as that profit motive is there, hospitals are going to respond to those rates by increasing their prices to make up the difference. Providers are going to have to increase their prices so that they can get paid. And now, you know, when when Trump the previous Trump administration said, well, every hospital has to put up their list of their prices for everything. Awesome. That's virtually impossible because not no one person from person from patient to patient to patient pays the same price for anything. Sure.

SPEAKER_02 1:42:06

So at the same time, there are plenty of hospitals that also just flat out refuse. They refuse to become you know, I I'm uh I'm a big believer that, as you said, the purpose of health insurance is not um to keep you healthy. Um it's to ensure that the system gets paid. It's to move money, it's to make a profit to make a profit for those that are in it, not for you to get better. Well, Marcus, this has been an eye-opening conversation, an unbelievable opportunity for our audience to learn from you, to hear about the issues from a self social determinative health, health equity conversation to look at their own literacy and to look at their own ability to understand their conversations with their provider, but also to know that there are services out there, programs like yours at Appalachian Literacy, uh sorry, Appalachian Learning Initiative that are trying to help them get on that level playing field and and educate themselves so that they can be the best patient that they can be. But as you said, don't Google it. Don't go it alone. Find an advocate, find a group, find the support system, and ensure that you know your rights as a patient.

SPEAKER_04 1:43:36

Thank you so much for your time. Um, if you'd like to visit our website, we're at www.aply.org, a ppli.org. Um, we have a lot of different resources on there that we're currently working on building out. Uh currently, up through Mississippi, we have public health data across more than 20 different indicators of health. And we also have a directory of all of the adult education providers that we have been able to contact and confirm that they're actually providing services on a county and state level basis.

SPEAKER_02 1:44:04

That's fantastic. We will make sure that we mark that in the notes for this episode, that they will go out with your uh email. I'll also make sure that it is um on our website, advocatebridge.org, which is one-stop site to uh allow patients to find the advocates or financial support resources that they may need. So we'll ensure that you're also listed there.

SPEAKER_04 1:44:26

Thank you so much, Matt. You have a wonderful day.

SPEAKER_02 1:44:29

Thank you so much. Have a great one.