Disrupting Care: How Neal Shah Is Revolutionizing Support for Families

Neal Shah’s journey, showcases the impact of caregiving on individual lives and the broader healthcare system. Raised in a close-knit immigrant family, Neal's values were shaped early by the examples set by his parents and grandparents. After building an impressive career in finance, a series of personal experiences as a caregiver—first supporting his grandfather through end-of-life care, then facing his wife’s severe illness—transformed his outlook and priorities. He became intimately aware of both the emotional toll and practical challenges caregivers face and the systemic flaws that make caregiving in America so difficult.

These experiences motivated Neal to leave his high-powered finance career to focus on creating social impact. He founded Carry Ya, a not-for-profit project that connects families in need with qualified, motivated student caregivers at affordable rates, disrupting the expensive, often impersonal agency model. 

Neal is also the author of the book "Insured to Death," which exposes the failures of the American health insurance system, and he launched Counterforce Health, an AI-powered platform that empowers patients and caregivers to fight insurance denials. Neal’s innovative, empathetic responses to systemic challenges underline his commitment to honoring caregivers as the backbone of the healthcare system and ensuring that their support, as well as that of care recipients, is financially and emotionally sustainable.

About Neal:

America's Chief Elder Officer. CEO of CareYaya Health Technologies and Chairman of Counterforce Health. Working hard to improve healthcare. Author of #1 Bestseller in Health Policy, "Insured to Death: How Health Insurance Screws Over Americans - And How We Take It Back". After a successful career as a $250 million hedge fund manager, deeply personal caregiving experiences inspired a pivot to social entrepreneurship. Now, determined to transform care delivery through technology.

Building a rapidly-growing tech startup to expand access to affordable care. Pioneering cutting-edge AI applications and neurotechology to fundamentally elevate quality of life for those needing care. Motivated by creativity and humanitarian progress.

Leveraging experiences guiding multi-billion dollar investments to make an impact on improving care for our most vulnerable populations. Leading with both heart and analytical rigor.

Building unrivaled technical capabilities and strategic partnerships to establish CareYaya as America's leading launchpad for care innovation. Together, let's build a better future for care! 

Thank you to sponsor: CareScout

Transcript

Natalie: 0:02

Announcer, Hey everyone, welcome to The Confessions of a reluctant caregiver podcast. We're happy you're here on the podcast. We're certain that you'll relate to the caregiver stories and find comfort with your honorary sisters. Now, before we start, I want to remind you to go to our website, Confessions of a reluctant caregiver.com. And sign up for our newsletter. It's full of useful information that you can immediately use now let's learn more about today's guests. Hey, Jay, hi, Natalie, I would sing the Good morning song to you, but it's afternoon, which means we're gonna be extra punchy.

JJ: 0:45

It is extra saucy. And I don't think you know an afternoon song, no.

Natalie: 0:51

Well, actually, isn't there afternoon delight? That 170s

JJ: 0:56

that's like a love song or something inappropriate, we immediately

Natalie: 0:59

went downhill. Okay, I'm not gonna sing afternoon delight. I have to think of something. Think of something else but our to Neil, who is our guest, by the way, which

JJ: 1:07

is, yes, we have a guest. He,

Natalie: 1:10

you know, let me get my voice.

JJ: 1:13

It's a boy. We

Natalie: 1:14

have a boy for the guests today, like we have had, we recorded earlier, and we had another boy, and it shows you that it's more common than people think of because people think of caregiving Jay as as a female dominated role. And I mean, it's built, it's been built into the culture of our society for hundreds of years, honestly, hundreds and 1000s of years. Probably I would have fallen into the hunter gatherer group. 1000 years ago, I would have preferred to be the hunter gatherer, because everybody knows I can't pull water, so my line would have passed out, really down, really fast, just

JJ: 1:52

gone. Okay. Let me get started.

Natalie: 1:54

You to talk about Neil, and because Neil is going to be super fun. I can already

JJ: 2:01

feel it absolutely, because he showed up in scrubs. Oh, that's right. Oh my gosh.

Natalie: 2:05

You gotta watch the video. The video is worth it, tube and watch this, because Neil's wearing the outfit that every one of us want to wear every day, absolutely.

JJ: 2:13

So let me introduce you guys. We are honored absolutely to have Neil Shaw with us today. He has an incredibly impressive background, but his best title, he is a CEO, but he's America's chief

Natalie: 2:26

elder officer. I'm not gonna lie to you. Forget that like I'm the chief energy officer. The fact that I found the elder officer

JJ: 2:35

totally his book. He has, like the best titles. His book is titled, insured to death how health insurance screws over Americans and how we take it back. So I'm like, dude, he totally pegged it for me too. He helped care for his grandfather through multiple diagnoses and end of life, but he also cared for his wife through years of cancer and serious illness. Those events inspired him to leave his career and start a caregiving movement, I'm telling you guys, that is spreading nationwide

Natalie: 3:07

too. He was voter and did something bigger,

JJ: 3:10

I know. So Neil, we are so excited to have you here. Thank you so much. We follow you. You're like a You're like an icon. You're like LinkedIn, like, ah,

Natalie: 3:19

if you don't follow on LinkedIn. You should, because just insightful, fantastic post, and I'm going to tell you, I'm always I feel smarter when I read things from him. So we'll make sure his information is in the show notes to get connected with him, because he's doing all kinds of cool stuff. But all of this came about from his past experiences, and so now we need Neil to tell his story. So Neil, I always start off with start from the beginning. You were born, but give us some background. Give us some background about your family and growing up and how care came into your life. But you got to give us some color so we know some things.

Unknown: 3:58

Yeah, sure. First of all, JJ and Natalie, thanks so much for having me. It's really an exciting opportunity. Yeah, I mean, I guess, where did I begin? You know, I grew up, like, pretty humble began, beginnings. I was born in India. Actually, my family immigrated to the US when I was a young child. And, you know, then grew up here under like, pretty modest circumstances. You know, it's like, oftentimes the life of immigrants is like, starting over, you know. So, you know, lived in like, pretty lower income household through most of my childhood and all the way, kind of through high school was, like, a pretty good, like, academic, you know, student, so ended up going to university and getting some scholarships. And, you know, then graduated from the University of Pennsylvania. And, yeah, initially started my career working in finance, you know, I mainly just as a way to, like, repay some college loans and kind of, like, what's the fastest way I can earn income. And, you know, it's like, really good at it. You know, very quickly out of school, I went into investment banking in New York City, you know, was top of the class there, and got recruited by a hedge fund. And. And you know, there, I learned very quickly how to do turnarounds of troubled companies and invest in and find opportunities pretty quickly over the course of three or four years, became a partner at a multi billion dollar fund where I was running the entire restructuring and kind of turn on portfolio. And then I just happened to kind of catch a lucky break in my career where 2008 2009 financial crisis happened, and I was the only person in the firm that knew how to, like, do bankruptcies and turnarounds. So I ended up getting allocated a lot of the firm's capital to investments that I was finding.

JJ: 5:32

How old were you at that time? I have to jump in. I was gonna say, because you're young,

Unknown: 5:37

yeah, in my early 40s. Now, yeah, 27 at the time. So it was, like, it was like, massive, like, career break. I mean, don't get me wrong, I was like, good, and I was working hard, but sometimes you just get lucky, you know, like, Right place, right time, so I generate a lot of returns for the fund. And as a result of that, at 31 when I was 31 one of the investors approached me to start my own investment organization. So I started that,

Natalie: 5:59

wait, wait, wait, you're going way too fast, though. Okay, you skipped over. You skipped over. Like, the fundamentals of where you get, like, this passion, like,

Unknown: 6:11

oh yeah. Okay, so childhood. Want to go

Natalie: 6:13

personal. You got sibling? Yeah, I need to know, yeah, no, I don't care about work. I need to know about, like, tell me where this part for care and serve came from. And to me, I think started with like my parents were immigrants. We came to the United States. I need to know where you're from, if you have any siblings, yes, about childhood and family values and things, because I think so much of caregiving comes from our past experiences. Thank you for bad and so because it shows your heart, my friend, not your brains.

Unknown: 6:44

Okay, yeah, thank you. And I always tend to kind of, like, lead with that stuff, but you're right. Like, I think in like, thinking about, like, how, you know, who am I? Like, I'm a combination of my mother and my father, and they're quite different personalities, you know, and like, they're, like, it's very symbiotic. But, you know, I learned a lot of my analytical mindset from my dad, you know, who's, like, very analytically oriented person, and I learned a lot of care from my mom, and both of whom I'm, like, very close to and spent a lot of time with in my childhood, and also my grandparents. You know, I spent a lot of time with my grandparents, and you know, they all have like, different personalities, but yeah, I'd say I learned a lot of care and empathy, actually, interestingly enough, like, I'm like, a pretty spiritual person, and I do, like, believe in, like, a greater power, and sometimes I believe in, like, destiny and fate. And one of the things that's been reinforced to me since I was born and since my childhood, and I was like, born into like, pretty modest circumstances, is my mother, like, always, like, had like, this prophecy that she instilled in me that you are going to, like, do something for the family, you know, and you're gonna be, like, financially successful at a very young age. Like, you will be smart and capable, but you will experience crisis and kind of a change of your mindset in the middle of your life to then direct the rest of your life towards, like, significant humanitarian work. And it's, like, really interesting, because this was like, reinforced into me since I was, like, since as early as I can remember, this is, like, a prophecy, yeah, that is okay.

Natalie: 8:16

Your mom is like, yeah. I mean, she I'm like, I'm gonna, I'm gonna, I feel like I need to go, get near her so she can be on the right path. I mean, like I'm feeling your vibes, to be able to say, to have that kind of encouragement, and you able to pull Are you an only child? No, I have a younger sister. Okay, so you're the oldest. I just need to JJ, and I love to be like, what's your birth

Unknown: 8:41

order? What's your birth order?

Natalie: 8:45

JJ, clearly looks to be the oldest. I mean, she's got the most wrinkles.

JJ: 8:49

Oh, that was rough. She always throws out I'm the oldest, and Natalie is the middle, and we have a younger sister, so there's three of us,

Natalie: 8:58

yes, and I am yellow mustard. Neil, I feel like, understand, if you've watched the videos. JJ is gray. Poupon, I am yellow, with my mom, Emily, and Emily's the baby. Emily's just the baby, and there's no wrong. So what's the age difference between you and your sister?

Unknown: 9:14

Three years, three years. Okay, well, and you're right. Like, I think birth order matters a lot, you know. Like, it matters a lot. And, like, the, you know, upbringing, like, sometimes the eldest, like, has a lot of the pressure of, you know, kind of the family in a way, and then, like, maybe the younger one, it maybe is treated a little bit more with kid gloves, anyway. So I've kind of observed that, you know, there's, there's good and bad of all, but yeah, so that's it. That's So, that's our, like, core families. Like, yeah, it's mom and dad and younger sister. Would you say culturally?

Natalie: 9:44

Because I think this is important. Do you think culturally care was a priority? Something that was that your family talked about? Was there any kind of assumption? Like, of course, because you mentioned you were with your grandparents a lot, which we were, too. Yeah. We grew up with our grandparents and all of our cousins, all of our people. And every Sunday went to church. Everybody got together. We all got fat together. It was great, yeah, yeah.

Unknown: 10:12

I think that matters a lot. I think it matters a lot, you know, culturally. And, you know, like, an interesting thing you said earlier, where you were talking about, like, you made the joke about hunter gatherer so it's actually really interesting. Like, I've thought about this a lot, and I've read about this a lot that, you know, human history was a lot more equitable in terms of, like, the roles of men and women. And if you study how hunter gatherer tribes operate, it's a lot more egalitarian. You know, it's, I think the division of the sexes is a agricultural thing, which is like the last few 1000 years of human life, where roles were so significantly divided, and how you work and who's responsible or what. But I think a lot of like when you study and read about like ancient hunter and gatherer societies, there are way more egalitarian, and some of that is still true today in many different cultures. There's actually a great book I read a few years ago. I don't know if you're familiar with it, but it's like a big feminist book in the 1980s called the chalice and the blade. And I would highly recommend it, you know, if anyone hasn't read it, but it really made me, like, rethink history, because, you know, nowadays it's almost like prevailing view that, like, there's different types of expectations, but in like, studying ancient societies and their writings, and, you know, their imagery, there were way more egalitarian civilizations, you know, 1000s of years ago. And I think that's kind of something cool so. And anyway, I'll pause there, but I have another thought, no, no,

Natalie: 11:37

but I think culture plays a part our our past experiences play such a significant part in who we are and what was modeled to us. And because we're talking about this, we've never really talked about this before in the sense of, I'm a big fan JJ knows I'm big fan of Bruce Perry, and he as a psychiatrist, child and adolescent psychiatrist, but talked about how relationships work and how we learned from one another. And when we were in those hunter gatherer groups, we lived in multi generational households, and and the children learned what their roles were at certain certain ages. Because they lived in multi generational households, it was never really a question, because they they modeled and they observed what they were supposed to do at every age. And I think, you know, we've gotten away from that. You know, technology is a great thing, but it can also has it's we've become a bit more disconnected from our families. And it sounds to me like you were really kind of close to your family growing up, which naturally would, I'm sure your parents weren't thinking, will Neil help care for us? Will Neil help, you know, and your sister? Will there be questions? And now people really do question. I wonder if my children will help care for me. And then there's this question of, should they,

Unknown: 12:51

yeah, and, and it goes both ways. It goes both ways too. It's like, it's like, I think the thing works when it's like, not that everybody's kind of calculating, in a way, but it's kind of like implied, if, like, mutually beneficial, you know, if, like, yeah, grandparents, parents and children are spending a lot of time with each other, doing things for each other. So there's kind of like an implicit, you know, return, right? And I think the more you kind of, like, break that down, which you're right, like, that is one of the biggest, like, sadness of the way the modern society set up, you know, like, even now, like, I live very close to my parents. Like, I live 10 minutes drive away. I live 10 minutes for my sister. And like, we're, like, very focused on, like, you know, I have a young daughter, you know, my sister has two kids, and then, like, we see my mom and dad all the time, and it's like, you have to be very conscious about trying to create that, because modern society creates a lot of things. Of somebody gets a job here and they have to move, and somebody goes to school here, and then pretty soon, like, the family is, like, kind of broken apart. Yeah, I think you have to be very conscious about that. So yeah, I think that's one of the perils of modern society.

JJ: 13:53

So I know that one of your first experiences, or at least the one that we had talked about in your history, was you helped care for your grandfather. Is kind of an introduction. So you said, you've got a daughter, you've got, of course, you got a spouse. Where does all of this fall? So when did you start taking care of your helping

Unknown: 14:13

care? Yes, this was, yeah, when I was younger, you know. So now I'm in my early 40s. This was in my early 30s. And, you know, actually, like, my grandfather went through like, a multi year, you know, kind of like decline process of, you know, through dementia, through kidney failure, through cancer, and then end of life care. And really, like, my family was doing a lot of the care, my mom primarily, and that was kind of like, I'm, like, the person in the family that everybody relies on for, like, research and care coordination just kind of, like, figure new things out, right? Research, yeah, that's my strength, right? I'm, like, an analytical person. I enjoy that. So, you know, there I went through that whole journey. It was my first foray into, like, like direct care. And actually the biggest realization. To me during that point was, you know, because there's a perception that, like, even when we were living in India before we moved here, like American Healthcare is awesome, which it is in many ways. But what you realize is that social care, which is, like a massive component of healthcare, is really lacking, you know. So, so when you are in like, you know, and you guys may have heard this from dementia support groups or cancer support groups. But, like, it's like, one person doesn't get dementia, the family gets the values, you know, because it's like, every it's like, okay, yeah, there's some medical stuff that can be done. You know, there's some therapeutics now and back then, they weren't even that effective, right? Like, nowadays, there's some that are moderately effective, but, like, much of it is like, what's the family gonna do? You know, it's like, home based care is not really supported. Medicare doesn't cover anything, like, your private health insurance doesn't cover anything. What's the hospital gonna do? You know, they're not gonna keep somebody around all day, you know, keeping your mom or dad or grandparents safe, yeah. So that entire thing falls on a family. And that was, like, my first foray into realizing the social care structure in America is, like, completely broken, like it is out of reach and out of affordability for many people to get actual care help, like, whether it's resource navigation, whether it's just having a nice person to give you a break so you can, kind of like, go do your job. My mom was managing her career at that point. I believe she was in her mid 50s at that time, and it was just like the amount of strain and responsibility was insane. And critically, the realization that we had through that experience is, every time we try to get care support, it was so bad. It was like, unreliable, it was high cost. It was really guilt ridden, you know, in terms of like, you would leave somebody with him, and, you know, if you came back from work, you know, he's in the room asking for help or a glass of water, and somebody's else goofing off in the other room, you know, kind of on their phone or watching TV. And, you know, I don't want to knock the Care Workers of America, you know, I believe there are very well intentioned people who are doing great work in this field, and many people who do view it as a calling. But I think it's really the economic structure of the care industry that that care work, which is some of the most important work in someone's life, right, especially for the person who is receiving the care is treated and have the same view on education, too. It's some of the lowest paid work in the country, which is kind of a that should be a damning of the society. You know that this is how we value care for our not just older population, this is how we value care for our children. This is how we value care for middle aged people going through cancer and children with disabilities. These are some of the lowest paying jobs in the country, and that is like an absolute tragedy, because what happens when the job is low paying, it's not done well, or that person is super stressed out, that they're they did a night shift last night doing something else, and then they're coming in during the day because they can't make ends meet. So it is really, I think the structure of the care system is so bad that you cannot blame the care workers. I think you have to blame the system.

Natalie: 17:51

I think you're exactly right. I'm gonna We're over time. I'm gonna jump into a break because I want to jump back into this. Because I think what we're doing is we're talking about direct care and your own experience, but we're also sprinkling in macro level issues, and when I say macro for our listeners, we're talking about system issues, a healthcare system and and why there's so much flaw. And when you're in the thick of it, you're trying to figure out, why is this so dang hard to navigate well, because the system is dysfunctional. Yeah, you, I promise it's not you.

Unknown: 18:25

Thanks for bringing that up. Because a lot of times I thought, What am I missing? Like, I'm not researching it enough. I haven't found the right option. Maybe I'll do more work and find something else. A lot of times you feel very isolated, especially if it's your first rodeo going through care. You're just like, I must be doing something wrong, you know, why am I not finding good help?

Natalie: 18:42

Exactly which never helps, but we will be right back

Unknown: 18:49

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JJ: 19:24

All right, everybody, we are back here with Neil Shaw, and let me tell you something. We're on our soapbox, so I'm sorry. We're talking about some macro level issues, but also, Neil mentioned something that that really touched me, and that truth is that you always kind of feel like it's your fault, like, what am I doing wrong? When actually it's some bigger issues. And you see that when you're a caregiver, and I know some of that stuff has really inspired you to get where you are today, to kind of, I don't want to get the spoiler alert, but Neil quit his job. But go ahead, Matt,

Natalie: 19:56

let's talk about the first instance of care because you've had multiple bowels. And it changed, actually, to the trajectory, like, your mother knew this goes back to your mother was right, yeah. She was Yeah. Let's talk about, like, this happens, your grandfather starts getting dementia, and what is, what's the family conversation like? Let's, let's get into, let's get, get back into the personal and say, Okay, how did we have this conversation? You're in your late 20s, 30s, early 30s at this point, what tell us about that, and what had the planning been for that, for your grandparents and that sort of thing,

Unknown: 20:31

planning close to minimal, you know, like, it's not like something you kind of and maybe some people plan for but you know, kind of unexpectedly happens to you. The family conversation was, how are we gonna manage the care, right? Like, in that case, like, everybody's working. My mom was working. So, you know, it was like, Okay, let's get care help. How do we keep him safe? You know, various times, how do we take him to dialysis appointments? You know, like, there was a lot of, like, coordination work, and we were trying to kind of patch it all together and suddenly learn altogether about, how do you get help? Who do you hire? How do you vet all that stuff? You know, full transparency. And part of the reason why I really am focused on why the system is broken. A lot of times we just thought we were just having bad luck, or we're doing it wrong. We're not getting good help. My mom ended up taking a lot of time off work, like just unexpectedly missing work here and there, then having to take breaks and take leave. Oh yeah, I got to the end. I mean, eventually she just left her career and did it full time herself, because it was so bad, you know, which, like we thought, okay, why is this happening? You know, is not, I don't. You know, when you're in this situation, you don't think this must not be happening everyone. Otherwise, everybody must be quitting their you know, work, so maybe we're just not figuring out where the good care is. But yeah, so there was like a real toll on that. And then I would say the bigger thing from the whole observation experience was it put so much strain and pressure on my mom through the care journey that after he passed, I think there was a long period of PTSD, you know, for her to recover from that because of just the combination of the sheer amount of work and the sheer amount of second guessing and guilt of, like, could I have done XYZ things better? So I think that that was, like, I mean, obviously on me too, you know, but I unfortunately didn't have a lot of time to think, because shortly after that, my wife became surreally ill, and then it's like, directly hit me.

Natalie: 22:26

Oh, and when it hits you, isn't it's weird, because it's you mentioned in the information that you sent us, you were, like, almost the secondary caregiver. And so it's interesting that your mom was the primary. Is that, would you say that was between she and your dad. Like, well, one, let me reverse, is your grandfather maternal, or it was her dad, so it was her dad, and so was it. And so then it would have been assumed, like, your dad, your female, this is the natural role. And everybody just was, like, okay, Best Supporting

Unknown: 22:58

Actress, yeah, in that case, there's two siblings. Like, it's her and her older sister, yeah. And I think it was assumed, like, just from a personality perspective, like my mom is, like, way more of the caring person. So it was kind of assumed that way, you know, that, like, she would do it.

Natalie: 23:15

Oh, trust me, Neil, JJ and Emily are way more caring than me. Like, I'm the fourth person out of my mom would probably ask for, and that's but I think this is important for our listeners to hear. Just because you're the oldest doesn't mean you're automatically nominated to be the caregiver. Just because you it really leans into a number of factors. It's but it's not as it's not as clean as a diagnostic, yeah, as a diagnosis, if you think about it, it's not that clean. So, like, it's about based on a number of factors. Where do you live? Who's got the personality? What's the relationship like? What's Can you even do it? I mean, if you really think about it, what were some of the roles, if you don't mind, before we go in to talk about your wife. What were some of the roles that you played, being really a caregiver, to the caregiver, not only just to you, supporting your grandfather, but even supporting your mom, how

Unknown: 24:09

you and your sister? Yeah, yeah. And thanks, thanks for sharing that. You know, I would say actually, in, like, reflecting on it, probably not as much of an emotional support role, and more of, like, outsourced helper or researcher role, you know, because, like, that's what I'm good at, you know, I would say, you know, like I'm based on my own personality. I was like, okay, what can I do, given the skills and the energy that I have, and what kind of things am I not good at, or, like, maybe less naturally good at? So yeah, I played a role of, like, let me take tasks off your and help you figure things out, because I like doing that and I'm good

Natalie: 24:44

because I'm doing it again. You've because here's the thing, you felt successful, if you really think about it, you've felt successful in doing those pieces. And I can tell you, Neil, we are absolutely the same way. JJ plays to her skill set. I played mine. And Emily plays to hers. And we're just fortunate. We always say we're fortunate that we there's three of us, because we don't know how people do it with only one,

Unknown: 25:08

yeah, yeah, it's, I think it's very hard if you're doing this by yourself. It is extremely hard,

Natalie: 25:15

even more with solo aging. So I don't have children, and so I'm trying to basically get as many children nearby that are my friends kids to be like, Hey, you're Aunt natties. Yeah, gonna be really friendly when she's older. I mean, don't ignore the part now you're

Unknown: 25:29

right. Building a community. I think it. I think when you go through these kind of prices like that, it's like, you know, the word community is often thrown around in our society, is like, a kind of a thing. But I think, like, that's really when it matters, you know, like, Do you have a community around you, whether it's your family, whether it's your kind of, like, adopted family, in terms of, like, your friends and people in your neighborhood and things like that, but like, a strong community of, like, cohesive bonds, you know, where people have done things for each other, I think it really matters when things like this happen. And I think it's like sometimes people cruise through life under appreciating the value of having a strong community, whether it's a community that they were, you know, blood born into, or that they created themselves. I think it's very

Natalie: 26:05

important Totally agree. So let's go in to you notice. Neil, I talk, do all the talking. JJ, just waiting for me to take a breath. That's true, but let's so you have this experience, and I appreciate you sharing that your mom would basically, I mean you, what you shared is your mom struggled. She was the primary caregiver for your grandfather and that you guys were, and she ultimately quit her job, which is unfortunate, which is so not uncommon, and I would assume, like you all, like so many of us, spend well more than the average, quote, unquote, $7,000 a year in providing care, because your mom quit in her job alone. Just shows the income, right there. You just, I

Unknown: 26:49

think that's that stuff is undercounted. You know, count that, you know, the the lost income, you know, it's like the cost of care even is high.

Natalie: 26:58

Yeah, exactly so, so you have this experience, you're moving along at the same time in your career. So you get married at some point, like you're, I mean, you're a whiz kid. I mean, basically you're Doogie Howser of the finance. Yeah, that's what I've decided. You're Doogie how's the finance. And so life's moving along. You get married, meet your wife, and then what happens,

Unknown: 27:21

yes, got married. Yeah, my wife got married. And, you know, we were married for, I think, around less than three years at the time when she became severely ill. And, you know, went through breast cancer, is triple negative, very fast growing K factor, and, yeah, went through major series of health issues, including multiple hospitalizations, a lot of side effects from treatment, treatments that weren't working, multiple surgeries at like, very early on, went through a severe hospitalization that landed her ultimately in the ICU in a medical coma for Three weeks with like, bilateral pneumonia with sepsis. So like, like, at one point, had, like, over 50% probability of death. And, you know, I so I was like, kind of thrust into direct caregiving through that experience at the time that I had achieved, like, the pinnacle of my career, you know, where I'd been working my butt off since my early 20s. And by the time I was 35 I was running a $250 million investment fund, you know, with me as, like, the kind of the main person that the investors had invested with, and then I had a team of people working with me. So, yeah, it was, like, extremely, extremely sudden, and it was like, a tremendous amount of pressure, where that work itself was very stressful. You know, I was already working 6070, plus hours a week on that, and then I was thrust into these emergent situations, managing my wife's care of, oh, by the way, she's in a coma. You have to make all the medical decisions. And I'm like, basically just living at the hospital for close to a month. And I'm like, full sabbatical, if, like, I'm not doing work.

JJ: 29:02

Does everyone know? I know you're the head, but do have you fully disclose, like, all of these health issues, or it's like, no, you don't know.

Unknown: 29:08

I mean, I've, like, my team knows. My team knows to an extent, but I'm like, I'm not trying to scare them, you know, because, like, this is all their livelihoods, you know. So I don't want them to panic. Like, I got it under

Natalie: 29:18

control. You got a lot of pressure there, because you just wrote, you just said, this is their livelihoods, and I'm the lead.

Unknown: 29:25

Yes, it's like, there's a lot of responsibility. Because think about it, like, at that time, okay, the like, a lot of things in your life could collapse, right? Like, you've built something that is paying a lot of people's salaries, and you have to disappear for a month, which is, like, not easy to do in, like, a relatively smaller organization. So you have to, like, have responsibility for, like, okay, you know, these people need to make sure they have a stability of, like, a way to earn a living. At the same time, your wife is in a situation where she cannot make medical decisions, and several medical decisions. Had to be made on treatment, and you are now suddenly, you know, at an age of 35 legally, you are the person deciding somebody else's medical fate, and you're trying to calculate and think about what to do. And, like, I didn't come from like, medical background, so I was like, Well, if I do this and she survives, or this and she doesn't survive, it's like, can you imagine, like, the amount of stress, like, oh my god, that if you make the wrong call, or you make even the right call and just goes the wrong way, you will have to live with that for the rest of your life, you know? And that's like, somebody else's life that you're accountable for, and they didn't give you any training. And the different doctors are, like, giving different recommendations, you know, I would ask many of them, what would you do? And, you know, one of them would say one thing, and then the person at night would say another thing. And I was like, I mean, it's like, really, if I don't know if you guys ever been in these situations, it's like, extremely, extremely stressful, because you don't know what the right call is.

Natalie: 30:53

Well, and I'll say this, I know that you know Jason. Most people know that Jason had had a neck cancer, but what they don't know is 10 years ago, he had back issues, and he and it was, do we have a back surgery that could basically impact him in a very different way, permanently, and because he was 49 or do we not? And so we went with three opinions, because we thought three. There's a reason bit boards have odd numbers, I pray, made the decision based on what did two out of the three say. 66% decided that this was the way to go. I'm gonna, I'm gonna pause this for a second and take one more break, and then we're gonna keep on going so we'll be right back.

Unknown: 31:35

Care forward is a technology platform that connects volunteers with seniors, the disabled and those with chronic or complex health conditions, offering support, like transportation, home visits and more details online@careforward.io

JJ: 31:50

All right, everybody, we are back here with Neil Shaha, and we're talking about, well, we're talking about decisions that can alter someone else's life, that you have to live with the rest of Your Life. Basically, your wife has had multiple health issues. She's been in the hospital. And tell me, tell me we know that you're really not. Tell you're you're sharing a little bit at work, but not a whole lot, because you don't want to scare anybody. Tell me how you move through this situation, what it teaches you, but also what you do with it. Tell me about, about

Unknown: 32:21

that? Yeah, I think, I mean, I moved through it. I think kind of like, best I could, one step at a time, at the moment of, like, I kind of manage and navigate the care, but like, ultimately I ended up taking, like, sabbatical, then going back to work, then sabbatical, going back to work, and like, ultimately, just made it very difficult decision to kind of like, wind down the fund because I felt like I could not responsibly continue the work. That was, like a very, very difficult, drawn out decision. You know, it was almost like admitting defeat. You know, after, like, I've worked that hard to get to kind of like, pinnacle of my career and have earned the respect of a lot of, like, friends, colleagues, people I've known, you know, for a couple of decades, to then just like, make the difficult decision to walk away was, like, very isolating and very sad, but I thought that it would have a big impact on, like, my wife's health outcome, because it was like, touch and go for a while on what would happen. Yeah, I think that the other kind of, some of the other things, like, I learned during the process was, like, it was very isolating, like, as a middle aged, like, not even middle age, I guess mid 30s. Man in New York City, there was not a lot of, I'd say, not in a bad way, but there wasn't as much empathy as I would have expected. I think it's because of, like, the way society is a lot of people I found a lot of like, young or men in their 30s or 40s, kind of maybe have a more I don't know what the right word is, but more old school way of thinking about care, that, okay, that, Oh, why are you doing that? You know? Why isn't somebody else doing that? So I

Natalie: 33:47

think they have, like they asked you, where her parents at? Why aren't her parents helping you with this? Yeah, I think some Yeah, exactly like people could say you're another woman that you could find to help. That sounds sexist, but it's really true, because nobody questioned me when I'm caring for Jason. But if Jason were caring for me, they'd be like, oh, and I know JJ would probably be gonna step in either way. She stepped in either way. But should we find a no, it's almost like, should we find a woman?

Unknown: 34:15

Yeah, I think it's like, I think yeah, that kind of stuff is like, maybe, maybe said like, like, they wouldn't say that exactly to my face that way, but it's implied. It's implied. And then I think the other thing that was kind of interesting also is like, from a stage of life perspective, typically at that stage, okay, for 35 like a lot of our friends, and this is where I would say, give them the grace that maybe it's not their fault. Many of them are a phase in a life where a lot of my friends had also recently gotten married, or maybe had been married for a few years. Many of them were having children, and we had gotten married, we did not have children at that time. So while their life is kind of in this directory of, hey, I'm entering a new phase of life, of like, I'm going from, like many of my male friends were, like, single male, to then marriage, to then kids, and I'm the. One at the group dinner talking about, oh, my wife's really sick. Oh yeah, this treatment didn't work. Oh yeah, I'm making decisions. It's almost like you become kind of like the Debbie downer,

Natalie: 35:12

oh, my god. Almost said Debbie Downer. I thought that's gonna come across harsh, but it's true.

Unknown: 35:17

Yeah, it's a reality. You know? It's like, Hey, I don't have anything fun to report. Somebody's like, Oh, I just had a kid. Oh, man, I'm doing this thing. Oh, I'm doing this thing. I'm like, Well, I've now walked away from my career, and things are not going well, health wise, and I'm super stressed out. So it's like, who wants to hang out with me? Yeah, seriously. It's like, I can see that. They're like, Oh, hey, this sucks, because all my positive stuff in the group of five or six people. It's like, okay, this person's only talking about the stress that they're having. So I'd say give people the benefit of the doubt. You could see why there's, like, a little bit of more of a distance, you know, while people are very empathetic and supportive, like tons of people sent us food, flowers, you know, visited, you know, and checked in on us, whatever, but there was still that, like, a little bit of unspoken thing, of, like, look, I'm at a phase in my life where things are looking up. I don't want to hear all this negative stuff all the time. And I get that, you know, I think this is a big thing in, like, human psychology. Of like, sometimes people just don't want to hear about bad things, even though that's a reality of everyone's life, whether it happens to you at 35 or 70 or 50 or anywhere between. There's gonna be difficult things that happen in your life. But yeah, many times people have, like, less appetite for, you know, tolerating that. So yeah, I found it became, like, extremely isolating, extremely, extremely isolating. And then especially when she had left her work, you know, I had left my work, and there was just like illness and challenges to go through. It was like a very difficult and lonely time for a while.

Natalie: 36:46

So let me ask you this. I thought you were gonna lean in, Jay for a second. I didn't wanna step over top of you, like I always do, kinda thinking about, I appreciate the conversation that we just had about you really gave people permission to be able to kind of step back how much of that was your own, your own stuff. In saying respectfully, and this is where it comes back to reluctant caregiver. I mean, truly. I mean, none of us want, let's be really clear, none of us want to be caregivers because we want our original role. You wanted to be a husband. You wanted to be a grandson. You know what? I mean? Like, it's not that we don't want to do care, but we don't want to be put in that role because of what it really ultimately means. And there's a lot of loss of control, but you're given a lot of like. You've you've given you said out loud, probably what a lot of people think, and they don't want to say out loud. But how much of that Are you sure you didn't put any of what your own like? Maybe I would feel this way, or I assume they're feeling this way, and nobody ever said it. Do you know what I mean? How much of that put on others to say I'm going to pull myself back some because I don't think they want to hear it, because, hell, I don't want to hear it. I mean, I tell that's what I did. I had to, I didn't think anybody want to hear because I'm depressing? Well, good

Unknown: 38:03

question. I actually, okay, good question. I'll say this actually, interestingly enough, one thing I discovered through that care journey, which I guess maybe is like, counterintuitive, I actually like being a caregiver. You know, I like the act of giving care, which is, like, very surprising to me, because, like, up until that moment of life, I view myself as, like, just highly analytical person sometimes, maybe not in tune with my emotions and stuff like that. But I like being a caregiver, you know. I like helping somebody, you know, whether it's like a close family member or even just somebody not. I like the act of like helping somebody who's suffering or struggling. So the act of care I enjoyed. And, I mean, that's saying that loosely, there were a lot of times high, high stress, yeah, but, but I like and find deep meaning in the work, you know, whether it's within family or for someone else. But I also, like, I would say I'm attuned to other people's like, feelings and kind of the way they're interacting. And I think that, like, yeah, I will talk about the stress of it, and hey, this is what happened. And I could just read the room that it was kind of like, no one would explicitly say to your face, yeah. But it was like reading the room that, yeah, people just like, have a limited tolerance of hearing about it when they're in a certain phase of life, you know? So I think it was like, more like, I don't think people and but you're right. Like, maybe it's me misreading it, but I could just tell that people would be a little bit more regarded if, like, I think, frankly, many of them would be like, I don't know what to say, you know, because I think many of them have not gone through that experience.

Natalie: 39:40

Yeah, I think that's part of the issue. And I don't think, and not to imply it's one person's fault or the other. I think there is a little I think people are sensitive on both sides. I think people and I think about my past experiences, like, when we've I've come upon, like, my aunt had cancer, and like, Oh, that's terrible. I'm so sorry. And then, but as good southerners, most people. Are like, Oh, that's okay. No, it's not okay. You just start to say thank you. Thank you for being sorry for me. Thank you for for showing empathy towards me. And I think you're but I do think you're right, because people are in different phases of their life and it's hard, and then they don't know what to say or don't know what to do. Yes, that's consistent. And then as caregivers, we also have to give permission to this is what I need from you, and there's a vulnerability that is different than you may have experienced, not you personally, but you listeners may have experienced, and it changes the dynamics of the relationship, because my husband lost a lot of friends during his journey, and I know that people that had supported our mom initially, are not around, yeah, and, and so it changes relationships, and it is stress of care and the situation, and I think it's all the things that's why it's so complicated. It's messy.

Unknown: 40:55

Yeah, I agree. And I think, I think to that point about changing relationships, I actually think that some of the things, what I realized, you know, through this life journey, is, and I'm not saying the bad way. There's a lot of people who are around in, like, more of a fair weather relationship when it's, like, fun and happy and kind of just like, things are good on the up and up. And then you realize, like, who's really in your corner when things go bad? And I kind of feel like, okay, you know, had a fortune of, like, maybe a life trajectory up until that point where it was just, like, fun and upwards for like, and then you go through this big, difficult phase in your life, and then it, like, makes you really realize, like, who's there through ups and downs. And I get it, it's like, friends. Maybe the expectation is very different, but I think that was, like, really eye opening to me that you need that down to see who's really real, and not just who's like, you know, there for the good

Natalie: 41:46

times, yeah, oh, that's, I mean, I already can tell that's going to feel like a clip Jay, because it's the truth. Who's going to be there for real, who's going to be through thick and thin. And sometimes you have to just give permission for people to exit your life. There will be people in my life, and then there are people not, and that's okay,

Unknown: 42:04

yeah, yeah. Or you just know, maybe, and not even in, like, let's say in a no judgment way, or judgment free, whatever you want to call it, then you just recognize that's what it is, that this person's nice, but it's just, this is just like, fair weather friend and sure, let's, let's have fun. But no, deep down, yeah, not count on, you know.

JJ: 42:23

So, Neil, I know that you're my neighbor, basically. So tell me about somehow you have transitioned. You left New York City. So tell me how all of this occurred. Because you change, you'd left your career very successful. And some people may say this man was crazy. First of all, why would

Natalie: 42:39

he give up all that money? Because that's like, he's successful. He's doing this. He's living a great life. Tell me how

JJ: 42:45

you what, what all this meant to you, and how you made this change in your life that fulfilled your mom's prophecy.

Unknown: 42:51

Basically, yeah, yeah. Thanks, yeah. I actually, I threw my wife's care journey, you know? So I initially, like had to, because it was just, there's so much care to do. And sorry, things beeping. There's so much care responsibility and such a impact on the outcome that I was like, if I do the care myself, and I'm like, there at all the oncology visits, I'm kind of like, there, thinking, researching, maybe there will be a better probability of beating the cancer. So, you know, end up kind of like, really, just going all out and obsessing over it, you know, then, you know, knock on wood, you know. And part of that whole journey was just like, kind of coming back home, getting care support from extended family. And then, you know, actually, you know, she had her final surgery here at Duke. And you know, then, you know, after radiation, like, was in remission, which was like, awesome outcome after all these difficult years. And at that point, you know, I saw I left out of necessity, of like, the immediate, like, emergent situation, of like, have to leave because that'll impact the outcome. But then after, you know, she had recovered, then I spent a lot of time, like, soul searching and thinking, Okay, I could just go back into what I was doing. And, you know, may not be able to pick it up exactly where I left it, but pretty quickly, kind of get back there. But I'll say fully honestly, it was like, eye opening life experience in a way, of like, it made me second guess what I had been doing with my life previously. Like, I have a lot of skills. I have, like, a very hard work ethic, you know, and like, I have, like, brain power that I can, like, dedicate to something. And then I'd realize, like, the initial reason for entering that industry was just because I came from like, lower income background. I was like, Okay, how can I just quickly make a bunch of money so I don't have to, like, worry about finances for myself or even for my parents, you know, for their retirement. But then you realize, like, what's the point beyond a certain point? There's no point. You know, it's like, I'm not a very materially interested person. I don't have, like, big tastes or anything. I don't like to buy expensive things. So then it's like, what's the point? You know, just because you're in something, you're just kind of going down because of momentum, but, like, you're not you. So, so I think when you have this traumatic experience, at least for me, it leads to a lot of, like, soul searching, if, like, one you're face to face with your loved ones mortality, but you're also face to face and makes you. Think about your own mortality. That's right, you know, like, if I were to die next year, what will I've spent my precious time on Earth doing? I wouldn't. I wouldn't at that point, I wouldn't have been proud of that. You know, it would have been like, okay, cool. I did something. But that was like, a really, not best, and, you know, best use of the talents and the energy that I have. So that was, like, really the catalyst of, like, okay, that combined with I've been in so many caregiver support groups and talked to so many people that are dealing with this situation, as bad as I felt for myself of having to walk away from a career, I was like, well, like, lot of people have it way, way worse, you know, of like, people have walked away from careers where they don't have a fallback, they don't have savings, they're taking care of their loved one, and then they're just gonna be completely screwed on their own after that. So I think that years of that journey, and talking to so many people just like, I think, yeah, it's like, been like, an awakening of, like, just how bad the system is. So yeah, it was, like, after a lot of like, thinking it was like, Okay, I want to, like, dedicate my life's work to fixing this to the best that I can of like, caregiving is very difficult. It's the system is so broken that I was like, Okay, let me just, like, put my energy into that and just kind of

JJ: 46:10

go, your level of empathy is just amazing. Because you said you were in these groups, these caregiving groups, first of all, and you say, I see these people that had it worse than I did. And you think about that,

Natalie: 46:20

I would think that would be really hard, but I love that you're just like, I think I'll just tackle, you know, an entire system, industry

JJ: 46:27

problem,

Unknown: 46:28

right? Naive that. Let's put it, do it together. We're gonna

Natalie: 46:33

that is like, Neil, in another life, you were a social worker. I'm gonna tell you, in another life you were a social worker. And I think your mom saw at a young age that you had heart and a heart for other people. And as symbolic, of course, you've got a heart on your Oh, yeah, yes. You have a heart for other people, and not just blood relatives. You definitely have. And that is not, not something that is necessarily born in everyone. And so you thought, I love that. You said, I'm going to take this gift that I've been given and which is in that skill set, and I'm going to do something different. And so, and did that start? So what started first was it Kerry, because that's how I came to know you. What started first?

Unknown: 47:19

Yeah, that started kind of carry Aya, like, it was, like, I was like, What can I do, given everything that I've seen and experienced myself and everything I'm seeing caregivers go through, so initially, you know, I kind of went through, like, a lot of like, ideas of like, Okay, where is there the biggest impact you can make? You know, I think you guys are right, like, there's, like, there's a, you know, looking back, there is like, an amount of like, naive optimism that I think sometimes is required. Because, don't get me wrong, it has not been easy. It is I got in, I realized it's broken for a reason, and like, I just underestimated how uphill of the battle it is. But sometimes, if you don't have that naive optimism, you never get started, you know, so, but yeah, I had kind of, like, this naive optimism, of like, you know, a series of challenges that I'd experienced, I'd seen other people experienced, but I think some of them being caregivers, having a hard time getting a break. A lot of times, the caregiver just needs an ability to some somebody else to take the burden off them so that they can go do something for themselves, whether it's they have to go work for income, or whether it's they have to take a break to just spend time on their own. I felt like that was like, kind of, given that I didn't come from like a medical background, the quickest thing I could make an impact on was finding a way for caregivers to kind of get that help, and given that I'd navigated the entire care system myself, of like, everything from, like, getting help through agencies informally, finding caregivers, you know, actually had had experience like, even hiring students, like, I'd kind of gone through the whole thing, and I'd gone through a lot of people that I've met over the years in support groups, try every single thing possible. I'd kind of observed that the lived experience, that the best thing in that kind of underground economy of care was people already knew, finding students, you know, finding really most of most of the time, it was like contacting your local nursing schools professor and finding students who are empathetic and want to do this work, and then managing it yourself, like everybody knew is like a Wildcat secret, that that is some of the best care, but it's a lot of manual work for you to do. And I think almost to the person in the you know, care economy, most people knew the hiring care through these agencies. And I don't want to offend anyone, you know, I appreciate people are doing these and running these businesses, but most people knew that the agency based care. It was just like, not great, but like, they were like, that's the best I got. I don't have the time to manage all this myself. So that was, like, really kind of the inspiration of, like, starting carry out. It was like, I think there's a way to help people solve this problem, and I think there's a way to do it, both affordably and to do in a high quality way, mainly because when you experience. Means low quality care. You feel very guilty, like if you go do your job because you left your mom, dad, spouse, whoever, with kind of a subpar caregiver, you carry that guilt with you to your job, and you think about it all day, and you may, and many people have to learn repressing mechanisms because you don't have a choice. You know, I think that's like modern life we live in. But I think that has, like, a second order impact on the person they know, you know, they know and they feel bad. You know, they feel bad that I wish I could have done better, but what choice to have? So I really wanted to fix that, because I think that that guilt has a lot of,

Natalie: 50:36

well, guilt is also then the next step is isolation and and holding those feelings in. And we know the impact that holding in negative thoughts, feelings, emotions, and the impact on your body and your overall health and wellness that that can have on you. And so to not to I always say, I have to get the negative out. I can't hold that in and carry it and it's too heavy, and you don't have to carry it. So you started carry Ya, ya, which is, this is how I found you. And I thought it was really cool. And then you decided, no, I think I'll do some other things too, because it not like that wasn't successful enough. But let's go ahead and let's go to the next level.

Unknown: 51:15

Well, okay, so yeah, so sorry, I totally glossed over what Carrie is. So basically, so I started carrying, which is like a social impact project, which was basically, how do we connect people with great caregivers at, like, the most logically affordable rates, so we run completely for free, like, carry out charges, no fees, markups, anything like that. And initially it was just, like funding it myself. And it was like, we built this technology system similar to, like, Uber or Airbnb or whatever you want to call it. And we said, If anyone is caring for a family member, you can go to the site and you will get wonderful healthcare students near you. So we started in our area, in Raleigh, Durham, so at like Duke and UNC Chapel Hill and NC State. And you know, pre med students, nursing students play

Natalie: 51:55

sport. Let's be clear, yes, UNC or North Carolina has and Virginia is honestly another one has good, a good college system that allows for you to pull interns and students that are in healthcare track. So I think, I think that's an important component to it. I think it'd be harder in some of your more rural states.

Unknown: 52:16

Yes, 100% agree. The South, you know, a lot of the South has a disproportionate number of, you know, college students, and also disproportionate number of older adults. So, you know, that was kind of like a really, like realization. So we started that, and, yeah, we now running carry out for about three years. And it started from, like a local Raleigh Durham thing with like a couple 100 students at Dugan UNC to eventually got to like 1000 to eventually, you know, got to like, 5000 and now it's spread nationally. We have now, I think at last count, like 44,000 students across. We're at over 35 universities. It's like, really cool. It's like,

Natalie: 52:52

thing Neil, it's little thing,

Unknown: 52:56

yeah, it's like, blown up, and it's like, really cool. Because, like, it's, it's in most markets, it's the most affordable care option by like 30 to 40% you know, in areas like Boston, you know, the local care companies are charging 42 to $45 an hour. Yeah, and, you know, and you know, no offense anyone, but most of the caregivers are not doing a great job in those situations because they're not getting paid most that the interesting break in the care economy is that the caregiver does like 99.9% of the hard work, right? They're actually on the job doing it the care matching organization, which would be the company, is doing like 1% maybe at best, of the work, which is like upfront marketing and sales and administrative work. But the economic value that these companies are capturing is over half. So in Boston, the care company is charging 45 and capturing 25 to 30 of that, and then paying the care worker like teams per hour. That's why the care sucks, and that's why the family pays an arm and a leg. So what Carrie I does is we will connect you with pre med student at Harvard, nursing student at Tufts, whoever you know kind of is available for 20 bucks an hour, and then you pay, and the student gets and we fund the whole thing off grants and social impact funders, and that, I think, is like, a big change in the care economy, because the caregivers are super happy, motivated. They're getting paid reasonably well. The family is, like, able to afford a lot of care. So a lot of people we serve could not afford to care in a traditional way. And, yeah, the impact is scaling now around the country with like, a pretty lean team, and I think that's kind of like a cool you know, both sides win

Natalie: 54:30

well. And so I'm gonna, I'm gonna stop us for a second, because we're, I know we're at the end of our time, and we're gonna end up going a little bit longer. So if folks want the extended version of this? Definitely go to our website and you can grab the edition. So, because we're going to keep going a little bit longer. So the other because, again, if you don't know Kerry Yahya and I know for our listeners on UK health radio, this is a United States based but this is a concept that I'm sure Neil was like, oh. People, it's anywhere kind of idea you can do this. And so I think my answer is, be inspired. And so because that's

Unknown: 55:08

what might extend the UK we have, BBC is going to do a story on us there. I'm actually, I'm doing an interview with BBC like next week. So yeah, coming

JJ: 55:15

to the UK soon, we'll see.

Unknown: 55:17

Fingers crossed, please.

Natalie: 55:19

Are you kidding me? It's not even a question, I feel like I'm like, I need to get you with a friend of mine. Aditya, if you're not listening to this, Adi is about to be your friend. Neil and so, powerhouse, 18 year old, and so, um, so I want to go in, and I want to spend the last handful of minimum minutes that we have, because you also, normally, we don't promote, like, lots of things like this, because we really talk about your experience, but what you've done with this is so different. And I think there's things that are such a give back. And again, your mother was right, but you have this book called insured to death, how health insurance screws over Americans, which cracks me up. I just I love that right here. I love that there's a gun on it, because nothing says, Nothing says, oh, that's, that's pretty dicey, yeah.

Unknown: 56:05

Well, see, see the denial letter has the shadow of a gun, because that's what I think the insurance companies are doing when they deny critical care. They are basically dooming you, you know? And I think that's like, that's not, you know, they've lost sight of their mission

Natalie: 56:17

well. And I think so, here's my question, because I know that you have what is the next step, because I know you're using AI, and I know you have like ideas of like, how to help other caregivers navigate. So let's talk about strategies to navigate the system effectively so you don't feel like, respectfully you've been given a death sentence.

Unknown: 56:40

Yes, so I think that also is from lived experience. In managing my wife's care for several years, there were so many critical things we were denied. You know, whether it's therapeutics, whether it's hospitalization, bills after that, whether it's surgery and surgery related bills, these were things that were supposed to be covered by insurers. And I think that's a critical thing that's happening across America, that the health insurance companies are breaking the social contract now, whether or not legal contracts. I mean, they can all play games and figure out ways around it, but they're breaking the social contract that if you have health insurance and you've been paying into it for 1015, 20 years, and then something bad happens to you. That is the time you need the funding, not you need extra stress because things are being denied. So I experienced this significantly during my wife's multi years cancer care, and I was very frustrated. I was in a fortunate enough position where I could just punt on the frustration and pay everything out of savings and deal with the bills later. But not everyone is in that situation, right? And even even in that situation, it created a tremendous amount of stress when I, you know, should be focusing on care, and when she should be fighting illness. There were various times during her own chemotherapy, though, she was spending hours and hours on the phone, fighting bills. And I think that's like insane, you know. And I've observed so many people dealing with this, and I think that what pissed me off is that many people are dealing with this who don't have savings, and then they are foregoing critically needed care, which is then making their health worse. So I observed this, but I thought, Okay, this is just happening this group of people that I know, but then over time, in running Carrie, I see this is happening to a ton of older people as Medicare Advantage is now the prevailing way that most people are getting Medicare, and it's private for profit plans and so many family caregivers are drowning in denials by Ma plans for their mom or dad. So I wrote the book to kind of research and bring awareness to it, but I also like used a lot of our team's time and energy to build AI tools to help people fight back. Because what I observed is, when people get claims denied, 99% of people don't fight back. They're intimidated, they don't know how to do research and all that, but of the 1% that do bother to fight back, half the time you win. So I was like, well, the critical problem is we need to make it easier for people to fight back, to create well structured appeals, you know, with medical evidence. So we built an AI system where people kind of upload their coverage, policy, their denial letter, their health records, and it will then go ping a bunch of research journals and billing code databases and figure out any fixes to why, almost like having a lawyer and a doctor in your court spending 10 hours on your case, but do it in two minutes and for free. And that was like, really the whole inspiration. And we were like, how can we help people fight this broken system? And police to say, we've been now running it for a few months, and over 70% of people are winning, which is amazing. And yeah, we've gotten some like impact funding to kind of accelerate, which we'll be announcing over the next couple weeks. But it's like, yeah, it's a free tool for everyone to use. Where can you find the tool? Sure, it's called counterforce health.org so you know, C, O, U, N, T, E R, force health.org, and, yeah, you can just kind of set up a free account, and, you know, use it as much as like. The most pleasant surprise is clinics are using it, you know. So it's not just patients that are

Natalie: 59:52

pissed. I can see clinicians being able to use it, practitioners who are trying to get

Unknown: 59:56

doctors, nurses, social workers, they are so sick of this health insurance system. Them, you know?

Natalie: 1:00:00

And here's the thing though, Neil, is that we have to remember, because, I mean, I've got my friends in the health plans, so and so, and I also know who those people are, in the sense of, they're human beings and they want what's well. But you know, it seems interesting that you'd use AI to fight AI, because the health plans are using AI, are instituting and integrating AI into the decision making process for claims, and then you get it once you start getting denials, that's when you start getting peer to peers with like healthcare professionals, like a physician. And so that's But it's interesting that you've gone that direction, which it makes perfect sense, because if I'm a person, I'm going to ask this question, because this we got to get into sister questions, we're way over time. But, yeah, okay, so, but I will say, if I'm a person, will my information that I upload be remain secure, and will it be used? How does the machine learning? Because people are going to be like, well, that's my protected health information. And how is that information use, is it sold? I mean, and PR to be able to back in and get, basically take all my money from my bank account?

Unknown: 1:01:07

No, no. Great question. Yeah. So the information is fully secure. It's not sold to anyone. We run the whole thing off grants, an interesting kind of, like, way we've built a system for clinics and like, full HIPAA compliance is that you get an option to you can de identify all the information on your machine so that is scrubbed and then sent into the server without your name and any identifying patient information. Or you can leave it in, you know, because it then, if you de identified, it creates the burden of you have to manually add it back in when you get the letter. Otherwise you don't. But yeah, it's fully at your option, wow. And you know, from a clinic's perspective, the clinics have, like, full HIPAA compliance, you know, where no information is transferred. And then for people who want, like, an even greater one, we're happy to, like, sign business associate agreements, you know, to maintain HIPAA compliance and do it for hospitals, but we're helping, like, we kind of designed it with multiple tiers of like, if you're, like, just an individual patient, you can use it however you need. If you need, if you want to go for convenience, versus, like, full data privacy for clinics also. And then we're like, designing a better system for rural hospitals, because, believe it or not, rural hospitals are reaching out to us, and they're like, I'm drowning in this stuff. So can you guys help? So I think there's a way, you know, to your point about AI, I think it's like part of the premise of my book is that the insurers, you could use a charge word like weaponized, which I would prefer, but used AI if you want to call it, the insurers used AI first and used it and abused it for years, and individual people, small clinics, rural hospitals, have to do the return manually. So if one person is taking one second algorithm to deny something, and you have to take eight hours of research to write back, yep, most people just fatigue didn't give up. And as you see, insurance then will make a lot of profit off that. So yeah, I thought that you had to democratize access to these AI tools so that it can be kind of a fair

Natalie: 1:02:54

fight. Wow. This has been, you know, I'm going to tell you, this has been the most interesting conversation. I'm going to give you one question, Jay, because you got one sister question,

JJ: 1:03:03

okay, what? First of all, thank you for making everything to the caregivers at no charge. We have a big heart for caregivers, and they don't have a lot of extra funds. First of all, that was my first thing. I absolutely love that you could probably wear all about that first so question, one thing that you that big, overwhelming goal that you want to see happen for the insurance

Natalie: 1:03:26

for the healthcare industry, what does the future look like? Oh, yeah,

JJ: 1:03:28

like. What do you want to see? What is the one healthcare for? For healthcare in general, what do you want to see?

Unknown: 1:03:34

Okay, yeah, for healthcare in general. I think my maybe one overarching philosophical goal is the recognition the family caregiver as the largest healthcare workforce in the country, that I think that people who are caregiving do not get the respect they deserve, like they are doing literally frontline. They are the frontline doctors and nurses in millions of homes across America. That's partly why I wear scrubs like whether it's to inspire the students or to inspire the family caregivers, that this is America's healthcare workforce. It's 63 million people, by latest count from AARP, that they are doing American health care, and they're keeping not just the health care system afloat, but they we, all of us right, like we are keeping the society afloat. And I think that caregivers would be behooved to be better supported. You know, like, think about how much money our healthcare our healthcare system is, $5 trillion economy, like the amount of money we're paying for drugs, the amount of money we're paying to hospitals, the amount of money that the Medicare Advantage plans and health insurance plans are making a profit, and what are the family caregivers getting? Absolutely nothing. You know. I think it's like unbelievable, like, unfairness in the system that you know, if somebody in your family is sick, you don't get anything. You know, like they pay 32,000 bucks a year to Biogen for this dementia drug, why isn't? Why isn't $32,000 available to the family to decide, do I want to take the drug, or do I want to pay for care, whether it's to pay for external care, or the family member to get paid if they have to quit their job. So I think that that a big overarching change would be like that the meal. Million so people who are, like, the actual hidden healthcare workforce get the recognition and support they deserve, and get, like, the financial support they serve.

Natalie: 1:05:07

Oh, I'm gonna tell you, like we could just go on and on and on. This has been so fantastic on a direct level, on sharing your personal story, as well as showing you know, how can you go and change a system. And I'm going to tell you, for those of you who are listening, if you feel overwhelmed and that you feel like, who am I? I'm one person. I can't do it. Neil just said, Yes, you can. And there's more of you out there, and along with these sisters and Neil, and there's so many great people out there and who are really trying to make an impact. It's amazing when we all get together, because you really can make significant change. Now I'm going to ask you the absolute last question. Okay, absolutely. This is the flippant question of the entire conversation, because we've been super serious. But what I don't know, when you have free time, because I feel like, oh, look, Neil works more than me, but in your free time, what do you do? Just for you guilty pleasure, what's the

Unknown: 1:06:09

Yeah, for you, my guilty I love to read. I like, I know that sounds cheesy, but I love to read random stuff. Like, I love to read books about all kinds of like, you know, like neuroscience, of like, how the brain works, where is consciousness? I love to read a lot of, like, philosophy books. I love to read a lot about ancient history, you know, kind of, what were cultures like in the past? Yeah, I just like, I love to read any kind of random, yeah. So if you guys have any book recommendations, let me know.

JJ: 1:06:41

Yeah, he's a sponge. Yeah, I'm going to

Natalie: 1:06:42

send you some book recommendations, because from the psych side, but it's all neuroscience. And so I think it's things that it's really about relationship and connection, and how do we come more together? And and you're really demonstrating how you can make technology work to help humankind. And so I love that. I love that so Jay, you want to close?

JJ: 1:07:03

Natalie, Neil, thank you guys so much and everybody else, all our listeners, until we confess again, we will see you next time. Bye, bye.

Natalie: 1:07:14

Well, friends, that's a wrap on this week's confession again. Thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find a video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details

Unknown: 1:07:39

are included in the show notes below. We'll see you next Tuesday, when we come together to confess again. Till then, take care of you. Okay, let's

Natalie: 1:07:51

talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I, at Confessions of a reluctant caregiver, have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors or hosting company. This podcast is copyrighted, and no part can be reproduced without the express written consent of the sisterhood of care LLC, thank you for listening to the confessions of our reluctant caregiver podcast.