Building The Noise with Brandon Macsata: EPISODE 005

SPEAKER_01 0:00

It is such a paternalistic view of advocacy. And what and I I've taken it a step further, and I think it's paternalistic ableism. You know, you as a person living with a disability or a chronic health condition, you don't know what's best for you. I do. I know what's best for you. Um, I'm your provider. Let me take care of you. Uh, instead of allowing them to take care of themselves, giving them the tools to take care of themselves. Welcome to the Building the Noise Podcast.

SPEAKER_00 0:29

Ladies and gentlemen, welcome to the Building the Noise Podcast. I'm Matt Teresco, and with me today, Brandon Maxada, the consummate advocate's advocate. Um, Brandon has and I've known Brandon for geez, almost 11, 12 years now, it seems. Um we've worked together on the R Elevé research. He is um someone that I look to as a true expert, not just in advocacy, but in public policy. So, Brandon, welcome to the show.

SPEAKER_01 0:59

Matt, good to see you. Always good to um build some noise with you.

SPEAKER_00 1:03

That's right. Hey, and as as you said, we're building the noise so that the patient community, the general public, whatever you consider yourself, uh, at some point you're gonna be a patient. Let's not wait until you are a patient to tackle some of the big issues that are facing the patient community today.

SPEAKER_01 1:21

Uh and what a novel concept, Matt, to actually try to invest and understand what the patient has to say. Right?

SPEAKER_00 1:29

You would you say that, and I know that you're saying it tongue in cheek, but oh my goodness, you've been at you've been in the advocacy space for how long, Brandon?

SPEAKER_01 1:38

I've been doing this for 30 years.

SPEAKER_00 1:40

30 years, and companies will constantly say, We're doing the right thing by the patients, we want to know what patients want. That's not really always the case, though, is it? No, it's not. Yeah.

SPEAKER_01 1:54

And oftentimes it's um so many other mitigating factors, and and it's not the people doing the work. They're they're committed. They're there are the they're the doers, they're the believers. Um they genuinely want to be engaged with patient, patient advocacy organizations. It's it's the it's all the layers that go above them that complicate that that relationship. And what we as patient advocates have to do is figure out that maze and how to navigate it. Because there are cracks in the armor, and you can get into um the operational um structure, so to speak, uh, which leads to not only the funding, the funding's important because it pays the bills and keeps the lights on, but the relationships. Um, you know, being able to reach out to a company and say, hey, I can't find data on XYZ. Well, what better place than the manufacturer because they track everything, right? Um or do you know somebody in Congressman, you know, John Doe's office? I would really like to communicate with them. So it's the relationships that go along with that funding that really are what um allow advocacy organizations to succeed.

SPEAKER_00 3:04

Yeah, we're gonna dive into those relationships at depth. Um as I said, I started the L of A research 11 years ago. You were one of the loudest and first respondents when I started it back then, uh, and have remained so. And you've taught me a lot about this advocacy space, and it's been a privilege to be on some of the boards of the organizations that you've run. Um what I've always loved about the way you've approached patient advocacy is not just, hey, the patient is who our focus is, but more so that, yes, we might be committed to this disease state and patients that have this disease. But there are other folks in other areas uh of healthcare that could benefit or should have a voice in this discussion. Uh tell me a little bit about how that mindset came about. And I I guess truly you follow the Denver principles, right? Which is nothing about uh but I'd love to hear why you are such an innovator and leader and you take this approach of of building that that boat and moat around patients.

SPEAKER_01 4:14

You know, Matt, I I first started doing your surveys um at the request of my late mentor, Bill Arnold. He spoke very highly of you and said, This is a survey, I think he had done it one year, he found it very intriguing. And ever since then I started doing it. And I bring up Bill because one of the biggest lessons I learned from him was when you do this work, you have to leave your personal politics at the door. The minute you allow your personal politics into play, it clouds your judgment. And that is important when you're dealing with political parties. Um, because you make you may make an assumption that, well, that party is never gonna care about this issue or never gonna fund this issue, when indeed all you need to do is look at the historical record on just about any disease, and HIV is no different. Or it's a uh a region of the of the country, you may say, Oh, there well, this isn't, you know, they don't care about this issue in in that that region of the country or whatever. And if the minute you do that, it it clouds your judgment. So you have to be very open, and and there are times you have to bite your lip because you may really have a serious concern or issue with how a particular politician believes on one issue, but if it's on your issue and you align, that's what you have to focus on. Get it done, and then you can go back to having your animus toward them on the other issue, right? Sure. Um, and I think for me, as someone who's living as a patient, I'm I'm a long-term survivor living with HIV, almost um pushing it a quarter century, 25. Um, I've been living with this. That's just between us. That's just between us. Um, I'm, and you know this uh very well, uh I'm unapologetically pro-patient.

SPEAKER_04 5:58

Yeah.

SPEAKER_01 5:59

And it it boggles my mind that we have you know, drug manufacturers trying to influence policy, hospitals trying to influence policy, PBMs now trying to influence policy, government agencies trying to influence policies, and all these people who are fighting over where the money goes, that money is being spent for one reason for patients. And yet they're discounted on their participation, or there's certain restrictions put on their participation, or they look at it and say, Oh, here comes the patient, and all they're gonna do is bitch and moan. Well, maybe you should listen to that bitch and moaning, because if you think through that, you're probably gonna identify reasons why the system isn't working the way it's designed. And we know that is very common, whether it's a public program or a private insurance, doesn't matter. It's oftentimes does not work the way it's designed. So, yes, I am very loud, uh, which is I I love your podcast, Building the Noise. You know me, I'm loud when it gets to this, because I think without patients in their participation and their insight, policy falls flat.

SPEAKER_00 7:07

Yep. You know, I want to go back in in your story and and really get a sense for how you got into this. Um you noted that your diagnosis, but patients every day are faced with that that challenge of now what? So what got you into advocacy? What was it that made you say, you know what, yes, I'm I I have this condition, but there's more to life than just this condition?

SPEAKER_01 7:39

Uh my first intro into patient advocacy was in a past life, I was the assistant administrator slash marketing director of a hundred and three-bed assisted living facility. So elder care became a very central part of my life. I lived, breathed, and sweated every single day. And when I saw how uh payment parameters were set up that were unfair to certain patient populations who were aging, when I looked at the last lack of resources, when I looked at the fact that, and this is mind-blowing, that we're paying folks minimum wage to bathe, toilet, feed our mothers and fathers. Back then, uh, not to date myself, you know, to be in the the 90s, late 90s, and you know, minimum wage back then was what, six bucks an hour?

SPEAKER_00 8:35

Yeah, 525,$6.

SPEAKER_01 8:37

Depending on which state you were in, think about the the profanity of that, that we're paying minimum wage people who are taking care of lives. Their lives are in their hands. So elder care was my intro to it. And then um a few years later, I literally fell into a job that was in um focused on disability rights and disability advocacy. Sure. It was an organization that represented um community, nonprofit community providers to supports and services for developed people living with developmental disabilities. And I fell in love with it and um got to meet some of the most amazing people living with disabilities who were um leaders, thought leaders, uh movement leaders. They inspired me, they challenged me. Uh John Kemp, uh, who was as a child was the one of the first poster child children of Easter Seals, uh became a dear friend, and he, you know, he was very a very central part of my life. Um, Rebecca Coakley, who, you know, has been in all sorts of roles over the years, a little person, uh one of the most passionate people I ever met, you know, got introduced to her very early on, and and so many others, and then boom, all of a sudden, one day, I'm now a patient. I've been diagnosed with HIV. And I wasn't just diagnosed with HIV, I was diagnosed with full-blown AIDS. Wow. My immune system had just collapsed. And and for me, I I think one of the reasons why I accepted that diagnosis so easily was because of the people in my work world who had become my friends. And I'm like, if that person can live their life without arms and legs, or if that person can live life with the challenges of of um being hype challenged, my little friend, little people friends like to say, then I can I can live with this this condition, uh, especially at now, you know, at that point there were medications on the market. I retroviral. So, and then in that is where it really became very personal for me because now I'm living it. And then because it was personal, it made me really evaluate the way systems are set up, and they are truly set up to sideline patients, and that just was not acceptable for a little Italian boy who likes to run his mile. He sees something he doesn't like.

SPEAKER_00 10:54

Yep. So you talked about when you were diagnosed and how it was easier because you you had people around you. What would you say to a newly diagnosed patient today that thinks this is it, this is this is I don't have any support system, I don't have folks with me. What what do we tell them to do? Live your life.

SPEAKER_01 11:21

Um and it's it's it's I don't want to make it dismiss it. I don't want to make dismiss the seriousness of the condition. If you don't take care of yourself, this is a really bad thing to have.

SPEAKER_04 11:34

Yeah.

SPEAKER_01 11:34

But I I say live your life because you know, if it means changing some lifestyle habits, change some lifestyle habits. Um, but it if it's if it means you know, going to your doctor every month, every quarter, every six months, then then go. And if there are and and I'm gonna circle back to that because I can already see the my flank being, you know, people coming at me on my flank, how could you say something so broadly? Um and your medications. I mean, we know with HIV that if you're adherent, meaning you take your medications pretty much when you're supposed to. We we all make mistakes, we all have hiccups in life and whatever, but you don't have to take it every single day. But you know, you should be in the 90th percentile when you're taking your meds. Your health, your life expectancy is the same as a person who's HIV negative, right? Um that wasn't the case back when this first reared itself. People lived maybe a year. So I, you know, and I get there are challenges, transportation, housing, stigma, you know, provider stigma. I mean, no better place do you see provider stigma than young black women going to, you know, going to see something about a childbirth and maternity care. Yep. Uh maternal health is just is probably one of the worst examples of provider stigma and discrimination. These these poor women are dismissed left and right. But I think there are still things that you can do as an individual to live your life. And that's not to say it's gonna be easy. There aren't gonna be times you're like, wait, what? And I have I was I know what that feels like. Uh and you know this story. At the time I was diagnosed, here I am working for a disability organization. I have insurance. I get my insurance the first month. I think my I had like a$20 copay for my HIV meds. The next month I go to get my meds filled, and they tell me the bill's$1,300. I'm like, what are you talking about? I have insurance. They run the insurance again, they're like, nope,$1,300. Lo and behold, I had a pharmacy rider on attached to my health plan, and the annual out-of-pocket maximum was$1,500 a year. Okay, I blew through that in the first month. That's why I imported drugs that I didn't know from Canada, that I didn't know whether they were HIV drugs or if they were counterfeit. I just knew I could get them for$300. So I know what it's like, you know, personally know what it's like when you confront a barrier and you're like, oh my God. That's why I went on the age drug assistance program. That's why I'm so passionate about protecting and enhancing age drug assistance programs. Um, because that was for me for six months of my life was a lifeline until my insurance situation changed. And now I had legitimate coverage, uh, not a$1,500 cap. So it boils down to if you think you're worth it, then then live your life. It doesn't the diagnosis doesn't define you. Just as your all anything else in your life, your your sexuality, your gender, your race, your age, do they contribute to who you are and your lived experience? Most certainly. Should you embrace all of those things? Most certainly. But don't let a single thing define your life, and that goes for an HIV diagnosis. And here's the Italian, and I'm sorry, but and if somebody has a problem with your HIV status.

SPEAKER_00 15:04

Exactly. Yep. And for those of you that don't know, that's the Italian salute. Um but uh yeah. I watered it down too, man. Yeah, I saw that. The I think one of the keys though, too, as you referenced, is that there, you know, you were working for an organization that was out to assist others. You that's become your life's work. But it's so vital for patients to recognize that there are groups out there that are there to support them. As you noted, the the age drug assistance program, obviously ADAP um doing a lot of work to write the ship, so to speak, um, and and keep or get 340B, then that program re-arranged in a way that focuses on getting the dollars to the right people and not a a uh an income stream for health systems. Uh there's all there's rabbit holes we could go down left and right on on that discussion alone. But the the fact that there are advocacy groups out there, there are people like yourself that want to help, that want people to come to them and to hear what you've just said with regards to live your life. It's okay. Yes, you're gonna probably have to uh of course mourn what's happened. That's okay. Absolutely, you have to keep living. Um, and there are folks out there that are there to help you. Um I think even people in the advocacy world don't quite understand how impactful and pivotal the HIV AIDS community is to all of advocacy.

SPEAKER_01 16:44

Uh would you mind advocacy in the 80s?

SPEAKER_00 16:47

Yeah, would you mind giving our audience a a bit of a an overview on what uh how this all started, potentially with even Act Up and moving into today, where now we have, I think it by last count, over 20,000 disease state advocacy organizations helping patients.

SPEAKER_01 17:04

Listen, for for those who are old enough to remember, uh it was in a very dark time in this country when AIDS reared its ugly head. Uh for the younger generations who don't know about it, maybe read about it or you know, have some general vague idea, um it it came out of nowhere in the sense that, okay, we heard some story about a patient dying of some rare cancer. Yeah, it's okay, well, there's a couple, and then the fact that at first it's showing up in only gay men in big cities. Well, you know, this is the early 80s. Um different time. Kids weren't coming out as gay in nine years old in school. Yeah, yeah. They weren't coming out at 39 years old when they were adults. Um there was no social media back then either. Media back then, there was very little um behavioral health and mental health programs designed for people you know coping with trauma. And I say trauma because if you ask anyone about their coming out as a gay person, it's traumatic because of the societal pressures on it. Um so here you have this disease, and and nothing worked, right? So these people, these poor patients were literally suffering, and the stigma that was fueling it, you know, there are stories of hospitals where nurses wouldn't even provide care because they didn't know am I gonna get it. Yeah. You know, one of our board members, ADUP Advocacy, one of the organizations I represent, uh, one of our board members, Wanda Brendel Mouse, she's a retired nurse. She tells stories, she was one of the nurses who was like, wait, I swore an oak. I have to take care of these patients. But co-workers didn't weren't doing that. So it was a very dark time. And to have the the advent of retro, well, let me let me stop. Our advocacy movement came from the bottom up, and it came from the bottom up fueled by anger. Anger at a society and a government and a system that was failing them. And there are you could go online and read stories about people who literally went to funerals almost every week of their friends, their neighbors.

SPEAKER_02 19:14

Sure.

SPEAKER_01 19:15

And act up literally like shut government offices down, they shut shut manufacturer offices down, they shut streets down, uh, they were political activists, they were society activists, and they forced the government's hand. They also pressured pharmaceutical manufacturers, but they enlightened the general public. The general public started to see wait, that could be my brother, that could be my aunt, that could be my neighbor, could be my uh my classmate from 20 years ago. Um, and and the mood changed, and the mood of the country largely changed with a young boy by the name of Ryan White. Yeah. It was a school-age kid in Indiana who got diagnosed with HIV through a blood transfusion and faced, you know, the school, kicked him out, there was all sorts of discrimination. They made a TV movie about it. What would we do without a TV movie? But in this case, it enlightened this country. And then fast forward, with the, you know, as the medical advances were happening in the advent of antiretrol virals, now you need funding. You need government funding to put these products in the hands of the people who need it most. So you had manufacturers who knew they had to work with the advocates, they didn't trust them. These are the people who have been railing against us for years. And then you had the advocates and the activists who knew they needed power. What more power than a pharmaceutical company, but they didn't trust them either. And it took people like Bill Arnold who brought them together and said, we're only going to get to this spot if we come together and join our forces. And it really defines modern day advocacy today. Um, what happened in terms of the creation of the Ryan White Care Act, which is the nation's um HIV care delivery system, and everything that, you know, what the advances that happened put care people in contact with care, and then all of a sudden they were healthy. They weren't getting sick, they weren't dying, they weren't costing the state millions of dollars. And it was like the light bulb went off among the politicians and the elite in Washington. Like, wait, this is a good program, this is a good way to go about doing it. But for advocates and in industry, they were like, this is how we change policy. And that's the reason part of the reason it opened the doors to patient advocacy as a as a field, as a passion, and as a change maker.

SPEAKER_00 21:46

Sure. Tell tell the audience a bit about the Denver principles and and where that all stemmed from.

SPEAKER_01 21:55

Um I'm gonna just narrow it down to the the coin phrase that nothing about us without us.

SPEAKER_04 22:00

Yeah.

SPEAKER_01 22:01

How you know and it it is it is so paternalistic the the way things have have often been done and are still done where policy decisions are being made, money priorities are being made, therapeutic decisions are being made, and you're not asking the person who is the reason you all are there. You're the reason you're all having these conversations. Uh the patient. What a novel idea to sit down and talk to patients. Um that's what the that's what embodied the dental principles was you know, now we we have we know what this condition is, we have a name for it, we know how it spread, we know how it doesn't spread, we know there are therapeutics, you know, all these different things we know why we need money, where we need to spend it, but these decisions cannot be made without us. We have to be at the table.

SPEAKER_00 22:50

Yeah. So a lot of discussions I've had with the patient community lately have been, of course, centered around AI. Um and there's a lot of fear about industry and others, um, not just implementing AI, because there's there's obviously some benefits to it. Um in in some cases, it's it's signaling to doctors to ask further questions. Maybe they missed something. But in others, we're hearing um how do we maybe synthesize and create hypothetical patient voices and do message testing instead of going directly to patients, which can quote unquote be messy. Uh, we can just use AI of synthesized patient input and and do it that way. Um, what are your thoughts? Obviously, it flies right in the face of nothing without us, uh, nothing about us without us, uh, but where where you see AI uh both as benefit and negative?

SPEAKER_01 23:48

I mean there's so many layers to that because it's we're already seeing studies of where prior authorization denials are being driven by AI. Yeah. I mean, prior authorization denials in and of themselves are evil, in my opinion.

SPEAKER_00 24:04

Okay? Yep. I think that that should be a malpractice opportunity, so to speak, from a policy perspective, that insurance companies should be having to carry malpractice insurance. Though they say they don't practice medicine, you and I both know that denial is practicing medicine. It is.

SPEAKER_01 24:24

So to then add in a layer that some computer program, and I I don't mean to be dismissive with AI in that way, but some computer program is some algorithm is saying, nope, you don't need this. Um if that's the case, why even go to the why even tell people to go to the doctor? Why even tell people to go, you know, the all the thing about preventive medicine? Why why get your annual physical? Why? Because it's gonna boil down to you go to get something done and you're told, well, no, you don't need it.

SPEAKER_04 24:53

Yeah.

SPEAKER_01 24:54

Well, then why did I go to my doctor, right? So I think there's there's that level of it. And then in terms of any drug manufacturer that's looking to replace the true contact with patient, whether it's at the clinical trial stage and the early development of a drug, to the rollout of that drug, to the um the access points for that drug, I think they're doing themselves a disservice. If if I think the front line is patients, you're you're gonna gain more insight from a patient directly. If you want to complement it with an E, not an I, um that's fine. That that's one of those things where you you look at what are different ways you can enhance the knowledge that you you are gaining. Um but I can also, Matt, push that back on patient advocates who right now are looking to AI to do a lot of their advocacy. You are doing yourself a disservice. And you know, we we talked a little bit about advocacy and patient advocacy in the history. This is a natural progression of there was a time where advocacy was parked out in front of a federal agency with signs. Sure. Um showing up at members of Congress's offices. And if you couldn't get to Washington, D.C., then their district office. If you couldn't get to their district office, say you're in a state like Montana where you know the district office could be 250 miles away, then you saw when they were going to be at the county fair, and you go up to them and say, you know, Congressman Matt, this is unacceptable. I need this drug, access to this drug, that's been replaced by let me send a tweet. Oh, I've done my part, you know. Let me create a Facebook page and get a bunch of supporters uh to like all my posts, but how many of those supporters live in your state? Sure. So it's like uh many, I think our advocacy has been in some ways enhanced by social media. Yeah. In a lot of ways enhanced by social media, but at the same time watered down our effectiveness. Um I think it's provided a convenient way for people to say, oh, well, I did my part. Um and and even I'm I'm hearing like with the mess that's happening in Florida, Florida's aid app is once again in crisis. People are getting kicked off the program, and those people who are boots on the ground and going up to Tallahassee or trying to figure out where legislators are in their in their districts are saying we need more of you showing up. And if you go online and look at the advocacy that's being done online, the Facebook posts, the Twitter posts, the LinkedIn post, there's a lot. But if you're listening to the folks who are the boots on the ground, they're saying there's not enough bodies showing up where we need bodies to protest, to advocate, to talk, to educate. So and now you have the AI element that makes it even more, well, we can just create this AI patient talking about what they're dealing with and how they can't access this and it'll replace. So I I think it goes both ways. I have no problem with AI being involved in advocacy, the same way I have no problem with it being involved in a a drug manufacturer trying to get a better feel for how does this drug product fit in the market? Yeah. Access, but if you're using it as the sole or primary way of educating your company on it, you're you're doing yourself a disservice and you're doing a disservice to your consumer.

SPEAKER_00 28:26

Completely. And and I think that you bring up another interesting point, which is does industry really know who their customer is?

SPEAKER_01 28:34

Oftentimes no. And and at the same time, it's it's one of those things that for those who do understand the importance the patient advocacy voice plays in policy-making decisions. I'm I'm wearing a Red Sox hat, so I'm gonna I'm gonna dump on my Red Sox, and maybe industry can learn a lesson from this analogy that there are few teams in Major League Baseball that have more money than the Boston Red Sox. Yep. Just the Yankees, I think, right? Well, it depends. Um The Boston Red Sox are awful this year. Yeah. They're awful. Because the up the front office, the owners are not investing where they need to invest. Drug companies in many cases are not investing where they need to invest. You should be spending a lot of money on your marketing because without people taking your medication, you don't have your sales. Without your sales, you can't do XYZ. Yeah. But you should take a fraction of that money. And when I say a fraction, I'm talking like a tiny fraction of that money and invest it in advocacy budgets because these people, me, the patient, Matt, you the people, me people, are the ones who can put a policy over the finish line or bring it to a screeching halt. Yeah. So, and I don't think most drug manufacturers get that. I don't think the C-suite levels get it. I think those below the C-suite level do get it in many cases, not all. Um, and I think that problem is in large part fueled by a different conversation you and I have is advocacy as a long-term game plan. No better where do you have to look than HIV advocacy? It took years to get the world, the country, the government to change. These companies are running on quarterly profit earnings.

SPEAKER_04 30:33

Yeah.

SPEAKER_01 30:34

You cannot, those two things do not jive. So you have to have a certain understanding of advocacy that our advocacy budget cannot be tied to earnings. Because if that's the case, you're gonna be stuck where you are, and you're gonna end up with really bad federal policy called thing with something called the IRA. Yeah. You know, and now industry's paying for it. And guess who's next? After industry pays for it, we're gonna pay for it. We're not gonna have access to the drugs that we need, there's gonna be less innovation. Um, and I I blame the IRA happening on a miscalculation by industry, and they did not invest enough money in patient advocacy voices going to Capitol Hill saying, whoa, stop.

SPEAKER_00 31:24

Yep. And and you know, in doing this research, we've seen that the typical advocacy budget is somewhere around one percent of an annual revenue, right? Of for our company. The marketing budget, as you referenced, is somewhere between 16 to 20%. Which makes sense, right? But at what point does the industry begin to recognize that commercials on television don't do nearly what they think they do as much as as I've been hearing this new sales funnel, so to speak, is patient to patient. And that takes advocacy to truly understand and and to move a message. Right? What are your thoughts on how you know, let's let's focus on the HIVAIDS community, on how those patients approach understanding the options that are there for them and then making the right decisions. I know you've done a lot of research here.

SPEAKER_01 32:24

I'm gonna drop a name who I know you love and admire, Warren, um Erites. Warren um was one of the first people that I knew who went on a long-acting injectable for HIV. At the time it was um the shot, I believe it was every month when he started. Um at the time I was still taking oral medication, I was taking a dinosaur regimen. Okay, I was still taking sysva. Uh when I tell people that I was still taking systiva, they're like, wait a minute, what? Um I'm one of those people that if a drug has a side effect, me too. I get it, right? So what I had to go through, my body had to go through to get on the right regiment, took took almost two years.

unknown 33:06

Wow.

SPEAKER_01 33:07

My first two years of living with HIV was just, I mean, there was one time I thought Mike Kyson was living in my gut. Just constant pain, constant pain. Sure. One stop was stopping my was stopping bone marrow production in my body. Wow. My regiment almost killed me. Um in less than 24 hours, I was burning 106 fever. It was the medication that was doing it. So when I got on the regiment that worked, that the side effects were pretty manageable. My attitude was if it ain't broke, don't fix it. Fast forward. Now I again, this was a dinosaur regiment that I was on. I Warren, who I I love and admire, uh he's you know he's grown into a personal friend. He's on Cabinova. Any chance he got, Brandon, look at Cabinuva, look at an injector. No, I don't need to. So one day I'm like, you know what? I'm at my doctor's office, she brings it up, we have a conversation, I decide, sure, let me try it. Best decision I ever made. Okay. I had been seeing commercials, I had seen print ads, I had, I'm in policy, I had read all sorts of publications about long-acting injectables and the benefits and all that stuff. It took a friend, it took a colleague to say, This is my experience with it, Brandon. I also didn't have adherence problems. I took my meds every day like clockwork, but this has changed my life. And he was right, and it's changed my life. Well, that was a patient, that patient-to-patient relationship that changed that. I've paid it forward. I I have gotten three people to get off the oral medications with taking um a long-acting injectable, taking Cabanuva, and they'll all each of them will say the same thing. Wasn't the commercial, wasn't the doctor, wasn't the print ad. It was a patient saying, This has changed my life for the good.

SPEAKER_00 34:55

Yeah. Yep. And and that's so vital for folks to hear. Because I know when I was going through, you know, both getting on to opiates and then trying to get off of them. I was reaching out to as many people as I knew, not clinicians, but folks who had been in my shoes to try to understand what do I do to not go through ridiculous withdrawal? Um, or what's the right, you know, the right medication that isn't overwhelmingly sedating, right? Patience. We all talk, right? Um, and that's where so much value lies. And I think that the hard part, as you originally referenced, is for the C-suite of these companies to understand that there's this old school, as you referenced the word, paternalistic mentality that almost like Steve Jobs, people don't know. We need we're gonna tell them what they need to know. And that's just not the case in healthcare. Right? Um, I want to get back back to you and and to the organizations that you're a part of. Can you tell the audience a bit about both PLUS and ADAP and your focus there?

SPEAKER_01 36:04

AIDAP Advocacy, uh, ADAP is age drug assistance program, uh, what I referenced earlier. It provides uh life-saving anti-retroviral drugs to patients living with HIV and other drugs, to people patients living with HIV who otherwise couldn't afford them. You know, they're they're underinsured or have no insurance. Um and this program has saved literally hundreds of thousands of lives over the last several decades. Um it is the embodiment of a way a government program should be run. It's one of the most efficient programs there is. Um at Rewind almost 20 years ago, there was there was there was trouble brewing, and my late mentor um saw it coming a few years before everyone else. And he had always said, and again, this is the gentleman who told me, leave your personal politics at the door. Sure. He had told me, Hey, if you couldn't get Republicans and Democrats to sit down and get more money for a program like ADAP, then you weren't gonna get anything in HIV done. Uh care delivery and HIV policy. Um, and the program had been perpetually underfunded, and what was happening with the economic pressures, um, you know, the costs of some of the newer drugs were coming and hitting the market, um, more people were trying to access the program, the fact that people are living longer, there were lots of things boiling all up at once. Lo and behold, waiting lists started. So here you have this whole initiative to telling people get tested, know your status. Uh, this is when we were learning that the the faster you treat HIV and the harder you hit in terms of you know hitting it with the antiretroviral drugs, yeah, the better the long-term health. So we're the message our country was sending was know your status, go get tested. You've tested positive, get access to medication and take them every day. By the way, we're not going to give you all the money to do it, get in line and we'll get to you when we can. It was just the optics were awful. And he Bill felt that it was we needed to have an advocacy organization dedicated solely to this issue. And he came to me, and at this point I had known him several years, and I said to him, I said, Bill, I'm not a policy wonk. I understand policy on Ryan White, the Ryan White Act, on AidApp, but there are people who are far smarter than me in the policy world who I think would be a better fit. And he said, No, I want a political wonk. I don't want a policy wonk. We got enough policy wonks. There are there aren't enough people in our world who understand the politics of public health and how to navigate.

SPEAKER_04 38:40

Yeah.

SPEAKER_01 38:42

So um I took it on and been doing it for 20 years and love every minute of it. Met some amazing people like you. Um, but I've I've also worn many hats over the years. The other organization you referenced, which you serve on my board of directors, is an organization called Plus Inc., and it focuses on addressing health disparities in the U.S. And it goes across all chronic disease states, rare disease states, um, you know, chronic health conditions, and and how do we best achieve uh a place of health equity? Uh lots of time spent on social determinants of health, which now apparently our federal government doesn't think is a thing. Um let's just ignore 60 years ago.

SPEAKER_00 39:29

That's why you're at the White House today, correct?

SPEAKER_01 39:31

Well, you know, I I I have that up, you know, for two reasons. And this is a message to patient advocates that advocacy can be fun.

SPEAKER_02 39:37

Yeah.

SPEAKER_01 39:38

I mean, right? So I'm I have a fun background, but also in our country, what is even in today's world, what is one of the symbols of power? The White House. I'm a patient standing at the White House. The message I'm trying to send is you, as a patient, have power. You have a lot of power. You have the power to influence decisions. And you brought up 340B earlier. 8AP advocacy has done a lot of work on 340B because 340B rebates account for over half of an ADAP budget. And for those of folks who are listening don't know about 340B, it's a it's a federal program, it's about 40 years old, and basically it was a beautiful deal struck between the federal government and drug manufacturers, where the federal government said if you want to sell your products and on Medicaid drug formularies, you have to offer discounted drugs to community healthcare organizations, what we call covered entities, at a discounted price. You can keep the spread, and that spread you can use to expand services. Unfortunately, like most programs, it morphed into something more into a revenue stream than actually providing care to patients. We can get into that conversation. But when I first approached industry partners about this program, I said, listen, watching the 340B debate and the fight between you, the drug manufacturers, and the hospitals is like watching the front line of World War I. It's moving like one foot a day back and forth. Nothing's happening. And the reason nothing's happening is there's no patients involved. Patients don't even know what 340B is, they don't know understand the value that it could bring to their lives. Um and they're not involved in any advocacy on it. And we took a torch and said, we're gonna light this torch, let us run with it. And the beautiful nature of it is industry said, okay, let's do it. And my argument was I believe on 340B reform that patients and drug manufacturers probably agree at least 80% of the time. Yeah. Not 100%, not even close to 100%, but probably 80% or more. And one of those things that, okay, well, we disagree, we disagree, but if we can get real reform done on this program, more patients are being served. You, as drug manufacturers, are financing this program. You know your dollars are being spent the way they're supposed to, not on you know, a private jet or a beautiful waterfall in a hospital or um you know ballot initiatives in California.

SPEAKER_00 42:10

Uh people that think he's joking, just take a look at the University of Miami health system. But keep going.

SPEAKER_01 42:16

They they financed their their their football coach through 340 B parmates, which are supposed to increase access to care, funding things like mobile health clinics, right? Um and to their credit, they did. Uh, you know, and and but it's also exposed one of the ugly sides of patient advocacy because we get accused all the time of being pharma shills um that were bought and paid for by pharma. And to me, that gets back to a word we've we've we've mentioned a couple times here, Matt, you and I, and it's it is such a paternalistic view of advocacy. And what and I I've taken it a step further, and I think it's paternalistic ableism. Yeah. You know, you as a person living with a disability or a chronic health condition, you don't know what's best for you. I do. I know what's best for you. Um I'm your provider, let me take care of you, uh, instead of allowing them to take care of themselves, giving them the tools to take care of themselves. So we've been very confrontational in pushing back on that. If you want to call us a pharma shill, then you're a paternalistic, ableistic. Yep.

SPEAKER_00 43:23

Yep. Not to mention, not to mention, if that's anyone in Congress or the Senate that's saying that you're a shill for the industry, what does that mean about the donations that you take from corporations? Is it that you can't make independent decisions either? Right?

SPEAKER_01 43:42

That's always one way. There's there has been a lot of research on people give to candidates, people give to um nonprofit charities like St. Jude's or uh United Way, and people give to patient advocacy organizations because they align with the value. Not because they're trying to buy them off. Right. There has been so much research in this space that it's it's it's really ridiculous. And I think it does a true disservice. And and I will say on our 340B project, it's it's it's now in its third year. Not once has a funder, a pharmaceutical partner said, you cannot make that statement. You cannot submit that letter. You cannot make that par state that include that paragraph in this letter.

SPEAKER_03 44:28

Yes.

SPEAKER_01 44:28

Not once, right? They've given us the dollars, they've given us the editorial discretion to do our advocacy, and we're back to we agree about 80% or more of the time, and they're in trust, they're trusting that, right? Yeah, and it's it's working.

SPEAKER_00 44:43

So and this is where I really want to give you your flowers. Um, you know, when it comes to advocacy work, and you know, if anyone's listening that's in industry, that's looking for a partner organization that not just says, oh, we can educate patients, but can actually bring you the receipts, um, and has done it for decades. This is where Brandon has always outshined any uh anybody else. Um, you know, as Brandon, as I'm I'm sure you're aware, uh, as we all are, there's a lot of infighting that can happen in the nonprofit world. Um you've never shied away from including as many different types of organizations as possible in the work that you do. I mean, I remember one of the most recent uh 8AP fireside chats, and I want to say there was about, I don't know, somewhere around 10 to 12 different therapeutic area and professional societies in the room, though we're talking about 340B and particularly how that impacts 8Apps and the drug assistance program. There were others in there that their lens was just 340B or just independent pharmacies, or you know, how that matters to XYZ disease states, but it's you're leading that coalition of people without calling it a coalition that has actually moved the needle. And this is where I would implore industry that is looking for a partner on any, not just policy work, but on educational campaigns and addressing social determinants of health, as Brandon referenced earlier. This is what he does. This is what organizations that do it well look like. Um, and I've been doing this research for almost 12 years now. I've seen good ones, I've seen poor ones. Brandon stands in a league of his own, and in the organizations and the people that are a part of his organization are second to nut. Um you had brought up this paternalistic ableism, and and I think that we can agree industry to uh a sense in the C-suite has that mindset on what's the value of advocacy. We can we can reach the patients ourselves, we can educate them ourselves, which is blind you know, completely blind to the fact that they don't have the trust. Um what I really want to dive into is let's go personal. How do you describe to Sebastian the work that you do?

SPEAKER_04 47:25

I want to go to your meetings all the time.

SPEAKER_01 47:27

You mentioned the fireside chat. ADAP Advocacy started hosting fireside chats, which are a small, um, intimate setting, deep policy dive, and it's it's a it's not all HIV specific. Um sometimes not everyone agrees in the room, and it's it's it's genuinely to foster dialogue on policy. And you know, we do things like receptions and dinners, and typically there's an icebreaker. Um, Sebastian came to, we had one in New Haven, which is where we spent our time. Sebastian came to the reception, and I think at the reception there were 50 people, and he greeted everyone at the door, brought him over to the bar, and he said, My papa's buying everyone drinks. Uh brought him over to the food and explained what was, I mean, he just he loves it, right? So he he on board meetings, you know this, starts off a plus ink board meeting saying hi to everyone. Yeah. Um listen, and I he we were we were featured in a uh one of the positively aware, their uh annual you know, living with HIV um, you know, awareness campaign. Uh, you know, he's on the I'm holding him laying on the couch, and you know, the message is I'm a single father living with HIV and I'm living my life. Back to what I started with living my life. I always wanted to be a father. And when I got that diagnosis, not once did it cross my mind I can't be a father. That wasn't changing, right? It got delayed, but it it doesn't change. So, you know, I just I just tell him that I spend my days trying to help people. Um, and and in large part that's that's what it is. And there are there are very often challenges. Um, we got egos in this space, um, you know, and that's common anywhere, but uh, you know, I don't I have seen my role in this it is to elevate other advocates, younger advocates. And it's one of again, I mentioned the lesson I learned from Bill Arnold. Leave your personal politics at the other lesson he taught me was elevate people younger below you because we're gonna need younger, we're gonna need new leaders as we all age out. I got into this advocacy work, I was in my 20s. I can assure you, I'm not in my 20s anymore. I just last week. And I'm now that person who has to start looking at down the road of who's gonna step up. Um and some of the most amazing people I have helped get to this their their pedestal now, or they're a voice leading the charge. Guy Anthony started Black Gifted and Whole. I mean, he's like he's family uh to me. I mentioned earlier Wanda Brendel Moss, though she's not uh younger than me, you know, she came to our very first AidApp conference. She was the first time we had an advocate from North Carolina, and she was scared. Beep. Um and I just I challenged her. I said, speak up, don't be afraid, don't be bashful, stop what anyone says judges you for what you say, just be authentic. The next year she brought nine other advocates from North Carolina, yeah, ten advocates from North Carolina, but you know, so it's finding those voices who can elevate themselves and put the good fight in.

SPEAKER_00 50:40

Yep. Now that that's it's it's so vital as you reference, and the turnover that we see in this space is unlike any other industry. Um so it's it's vital that we we train up that next group.

SPEAKER_01 50:53

Um, and that's one of the things that that manufacturers have to also, as they're realigning you know, how they can use advocacy more effectively, uh, align with advocacy more effectively. You know, I mentioned earlier the advocacy is not based on a quarterly earning. You have to have a long-range plan in effect.

SPEAKER_02 51:14

Yeah.

SPEAKER_01 51:15

And there are and they make mistakes. I mean, I think one of the mistakes that industry is making right now is they're giving money to national organizations to try and influence state policy. I can tell you, as someone who is a political creature by nature, yeah, and I know a lot of folks who serve in state legislatures or they're the chief staff person of the legislator, they don't like it when a national organization comes knocking on the door saying, This is why you can't do what you're doing in your state. You have to have a tie-in, whether it's you have a you have board members who live in the state, that opens a door for you. If you live in the state, that opens a door for you, you know. Um, unless you can make that personal tie to why you as a national organization are getting meddling, is the word that's meddling in in our backyard. You're you just you do you're doing yourself as a company a disservice. And you can look at the track record of state legislation where national organizations have tried to lead the charge, in almost every case they fail. I'm not saying always. There are wins, sure, but there are far more losses than there are W's.

SPEAKER_00 52:25

The wins are typically when they Yeah, right. There you go. The wins are typically when they identify that, oh, we we're going about this the wrong way, and maybe we should get some regional or state groups in that uh might be able to lead the charge, uh, we'll step back.

SPEAKER_01 52:40

They're better off taking those advocacy, state advocacy dollars and giving them to a state grassroots organization or a local organization, um, and they exist. And if if somebody says they don't exist, they're they're being intellectually dishonest and they're being lazy. They exist. You just have to find them. And if you don't know where to start, where they are, that gets to my point I said earlier about the relationships of industry and patient advocacy. It's more than the check. Yeah, it's the relationship. And I may come to you and say, I need data, or can I you have a contact in Congressman Matt Teresco's office? Yeah. And vice versa, you should be able to come to me and say, Brandon, do you know of any advocacy groups in Nebraska? Yeah. Because almost every single state I personally know where there's an advocate or an advocacy group, and there are people who know just as many, or if not more, than I do. So there are so many resources that are untapped. Um, and I think that that's one of the things that industry, we as patient advocates have to try and educate industry on, too.

SPEAKER_00 53:39

Yep. No, and and that's a fantastic point because as you reference these national nonprofits trying to do work locally, the same as can be said about industry trying to do the work on their own. It doesn't work. The trust isn't there. Go to groups like yours, go to the local grassroots community-based organizations. They have the trust. Allow them to utilize their trust capital. As long as you're in alignment, they will do that work. Um, don't try to meddle in it, right? Uh, and as you referenced, the relationships are always the biggest thing. The money, and at times, yes, listen, we have to keep the lights on. We have to be able to do that work effectively, and it takes dollars to do it, but there's so much more than just the dollars. And that's why year after year in our report, it's not the best organization is the one that spends the most. It's the one that has the most transparent and partnering approach to building those relationships and working hand in hand. Um, and it it it will remain true in this age of AI, I think, more than ever, um, that people are searching for real. Uh, my final question for you what would you go back and tell your 20-year-old self if you could?

SPEAKER_04 55:00

Oh god. I would bore that 20-year-old to death. I'd be like, okay.

SPEAKER_03 55:06

You shouldn't have gone there, you shouldn't have done this.

SPEAKER_01 55:23

And I and I say that and I joked earlier, but you gotta have fun, right? It's like a silly background. This work is is hard. It's emotional. In in our HIV advocacy space, and there are others, cystic fibrosis, cancer, you lose friends all the time. Just last week I learned that a gentleman leading advocate in the state of Tennessee for many, many decades, uh Larry Frampton, uh passed away. Uh wasn't related to his his HIV, but um died way too young. Um and he the Larry Larry Larry is who brought up a whole new generation of HIV advocates in in Tennessee.

unknown 56:08

Sure.

SPEAKER_01 56:08

We made App Advocacy used to host an annual conference in Washington, D.C. It was your typical cookies cookie cutter conference, you know, keynote speakers, breakouts, all the jazz. And we did it for 10 years, and I think Larry came to nine of the ten. Wow. He came as a participant, that eventually grew into he he was a panelist on our you know discussions to even he moderated one of them. Um he just was you you lose too many of your friends, and yeah, it's it's it's sombering when you see uh colleagues get diagnosed with something or they've got a complication and you know they're struggling to pay for it. Um enter 340B. There's that's 340B is supposed to exist, helping so that they don't have to uh expose their pride and go on and go fund me.

unknown 56:58

Yeah.

SPEAKER_01 56:59

Right. And I I think it's the message to myself would be have a little more fun doing this because it's draining. Yeah. Draining because you have a system that's built against you. Um you have powers that be who when you do speak up, they I they label you based on where your funding came from. Uh, you know, get back to that funding piece. If pharma wasn't funding patient advocacy, there would be no patient advocacy.

SPEAKER_00 57:29

There wouldn't be, yeah.

SPEAKER_01 57:30

Government's not funding it, hospitals aren't funding it, PMMs aren't funding it, payers, Blue Cross, Blue Shields, Cigna, there sure as hell ain't paying it. Nope. Yep. And sure there are big donors who pay for it, but they usually have their own private agenda and they fund certain things. There would be no patient advocacy.

SPEAKER_00 57:48

So America don't have the discretionary funds at this point either. Right?

SPEAKER_01 57:55

Have fun. You know, it's fun. Have some fun doing it. I love that. I would still do this. You know, I wouldn't, I wouldn't change that. I fell into it by accident. Um, it it grew into it. I was very sick, I've been very successful doing it. Yes. Um, but I would I would say to myself, have a little more fun.

SPEAKER_00 58:12

Well, you still got a lot more time, and that's why your meetings are so fun. Um, and I look forward to the next one. Absolutely. But with that said, ladies and gentlemen, thank you for for listening today. Um, you can find more for on Brandon at both plusinc.org or dot com. I'm sorry.org. Plus plusink.org as well as 8app advocacy. Um feel free to give him a follow. Follow the work that he does. Sign up for the 8app newsletter as well as a wealth of information that will help you to understand 340B and really how it's been uh co-opted, is I think a good word for it, um, to not to no longer be a support system for patients, but be a revenue generator for health systems. Uh Brandon and I will do a whole nother discussion on that one alone. Uh and I I know at ADAP's website uh there uh have been webinars that I've had the privilege of being a part of uh that you can check out there on 340B. But Brandon, I really appreciate your time today and uh look forward to seeing you soon.

SPEAKER_01 59:18

Matt, I don't know how an hour goes by so fast, but when it takes that's usually how it goes.

SPEAKER_00 59:23

Always, always. Pleasure. Thank you, sir.