My Hero 360 Staff Writer on September 29, 2026

Am I Fighting Cancer or Health Insurance Companies? | Matthew Zachary

Kerri Fitzgerald speaks with Matthew Zachary, the founder of Stupid Cancer, host of the “Out of Patients” podcast, author of “We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare,” and a long-time patient rights activist. Matthew was diagnosed with a rare brain cancer as a college student in the 90s and has since dedicated his life to bringing a spotlight to the adolescent and young adult cancer survivor community.

19 Min Read

In this episode of My Hero 360, Kerri Fitzgerald speaks with Matthew Zachary, the founder of Stupid Cancer, host of the “Out of Patients” podcast, author of “We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare,” and a long-time patient rights activist. Matthew was diagnosed with a rare brain cancer as a college student in the 90s and has since dedicated his life to bringing a spotlight to the adolescent and young adult cancer survivor community. He leads a patient-rights advocacy group that is fighting to make healthcare affordable for Americans and pointedly explains that you shouldn’t have to fight cancer and your insurance company at the same time. Matthew shares ways we can make a difference by uniting on this apolitical, pervasive issue.

Kerri Fitzgerald:

Matthew, welcome to My Hero 360.

Matthew Zachary:

It’s a pleasure to be here.

Kerri Fitzgerald:

You’re a patient rights activist, an author, a longtime podcaster, a nonprofit founder… The list goes on, and we’re going to get into each of those areas. First, I want to start with the event that launched your career and your mission, and that is a diagnosis of brain cancer. You were 21, college student, when you received a diagnosis of this very rare type of brain cancer. Can you talk to us about that experience?

Matthew Zachary:

I was dragged into this world. Again, most are against their sort of predilections. At the time I was in college, I had my whole life planned. No one really knows what they want to be when they’re 19, 20, 21, but I did. I wanted to be a concert pianist. I wanted to be a film composer. I had nothing else to do except focus on that career after 10 years of training.

I like to say that man plans and God laughs. Out of nowhere, during the summer of ’95, I just lost the ability to arpeggiate. A lot of the fine motor coordination just went out of my hands. I got back to school, and like, “Oh, I’ll just do it this way.” Like in Amadeus, the movie, he just switched his hands, or he was upside down when he did it.

I was like, “You’re invincible. Nothing’s wrong with you.” I just dealt with it until my dominant hand, which is my left hand, couldn’t grip a pen anymore. The gripping was a problem. I had a laptop because I’m a total nerd, and I had trouble just typing on the keys, like touch-typing.

I finally went to the doctors on the campus, and this isn’t like a slant at SUNY physicians in the 1990s, but no one would assume that the kid whose left hand didn’t work had something really wrong with him. They casually said, “Just put your backpack on this side. You might have carpal tunnel, do some exercises, wear a little thumb sling from Walgreens… Oh, Epstein-Barr. You’re just tired. Relax yourself. Do yourself a favor, don’t work so hard. Play less,” was what they said.

“Just try to focus on these things…” Because I was playing all day, every day for everything at the school. Eventually, “Oh, you might have had a mini stroke.” Oh really? That’s just fantastic. Then they had some early-onset multiple sclerosis. None of that was accurate. Then the irony was I finally went back, but I really wasn’t feeling well enough. They said, “Here’s some Robitussin.” Robitussin for what ultimately was finally a scan; I started fainting, had dizzy spells, and my eyes went all googly. I couldn’t focus. Then I had these massive headaches, which weren’t there. They never thought it was something north of the neck.

Got home, told my dad. I think they nearly beat the shit out of me for not telling them anything during the entire semester. “What’s wrong with you?” Finally saw a neurologist; nothing was wrong with me.

Went to the physicians; nothing was wrong with me. “Maybe we should get you an MRI.” Our response in 1995 was, “What the hell is an MRI?” Let’s go back in time. We didn’t know what that thing was—a scary acronym. Went in for the radiologist, went in for the MRI, and this is where the story becomes such a ’90s time capsule. I write about this in the book, and I’ve talked about this for years. Had the scan, went out to lunch with my mom, and we got back to the house, and the answering machine in the upper bedroom was blinking. That wouldn’t normally happen on a Thursday. No one’s calling.

Maybe “Days of Our Lives” is calling. Some soap opera was calling. Another world was calling. Then we just knew right away that the only person that would’ve left a message was the clinic.

They basically said, “We found something; please come back.” Essentially, I was diagnosed with a brain tumor over a blinking answering machine in December of 1995.

Kerri Fitzgerald:

That is a ’90s callback.

Matthew Zachary:

That’s how I got totally dragged into this world.

Kerri Fitzgerald:

You went back; it was a golf ball-sized mass on your brain. I believe you were born with it, and it was growing your whole life?

Matthew Zachary:

We didn’t know this until after it was resected and went to pathology. They thought it was this. It couldn’t possibly be this. We talked about my Uncle Jay, but Uncle Jay did something else too. We’re going to get to him, I know. He sent the pathology around the world to all of his cohorts in all the countries that were doing pioneering genetic research to just confirm it was possibly this thing called medulloblastoma, which is, as you said, congenital. It develops in utero, and it historically only presents in mostly boys under the age of 8.

The fact that I had it stuck in my cerebellum all those years and it just decided one day, “Hey, I’m here,” was almost unprecedented clinically, which just threw everything else for a loop.

Kerri Fitzgerald:

Yeah. Now you’re young, you’re getting this scary cancer diagnosis. You underwent surgery, which had an 80% mortality rate.

Matthew Zachary:

Well, they didn’t tell us that until after I didn’t die on the operating table. Thanks, guys. Thanks, Doc, for that. Appreciate it.

Kerri Fitzgerald:

You underwent over 30 rounds of radiation, which you describe as absolutely horrible. What was all of that experience like?

Matthew Zachary:

You just feel victimized, like when someone robs your house, and you just feel like you’re out of control; you have nothing you can do. You’re just there. Someone robs your house; all your things are gone; your soul just leaves your body. That’s what it felt like. There were other factors that are very ’90s that don’t really matter 30 years later, like pure isolation. The words “mental health” meant nothing. It was, “You look great, walk it off, just smear yourself with Vaseline, you’ll be fine.” “Oh, you’re losing weight. That’s great. You look great. Your jeans fit again.” These are really the things that were going through my head. There was nothing back then in the vein of what we now call survivorship.

How does it suck less while you’re going through it and afterwards? Didn’t exist. There were no protocols. At the same time, because I had a pediatric tumor, I was with babies with cancer in the ward. As a 22-year-old or a 21-year-old, they thought I was the parent of a kid that was in there. I just felt completely displaced psychologically, with ducks on the wall and squishy things all over the place. Even the doctor, my oncologist, a brilliant man, Dr. Jeff Allen, had never really interacted with anyone over 14.

He’s like, “Can you hear anything, Matt?” I’m like, “Dude, I’m 21 years old.” I just felt out of place. I felt out of body. I felt unheard, unseen, unfelt. I kind of conflate what I went through is: I lost my life. I just didn’t die.

Kerri Fitzgerald:

You go through this radiation, and they give you a 50% 5-year survival.

Matthew Zachary:

Yeah. Quality when you’re 22, right?

Kerri Fitzgerald:

Yeah. What is that like at 22? “Oh, you have a 50/50 chance of being here at 26,” you said.

Matthew Zachary:

I kind of lean into the fact that I really was, I won’t say in denial, because it was just so surreal. I’m like, “Cool, I have a brain tumor. Wow, how awesome is this?” It’s really weird. Thankfully I’m not crazy. It’s something in my head. I remember vividly just channeling my inner invincibility, like this is not going to stop me. I never asked why me. I had never even put any thought into this could be the ending. Everything is over. I’m just going to keep… Because what else am I going to do? I’m going to focus on what I care about most because I have chutzpah, which most people don’t. I happen to be that guy who just wanted to push back. Just being told, “I’ll give you a 50% chance for 5 years…” Fabulous. I’ll die at 28 and be thrilled.

Kerri Fitzgerald:

Now you were recommended to do chemotherapy, which they said would’ve increased your survival by 5%. You chose not to take those odds. You were kind of done with the treatment; you’d been through so much already. What was it like making that decision?

Matthew Zachary:

Well, I didn’t know I had a decision to make, which is the start of all this narrative. I mentioned my Uncle Jay before, who was a world-renowned genomicist no one’s ever heard of who did all these crazy things in Bloomington, Indiana. He paved the way for early chemotherapy with Dr. Sidney Farber—these crazy things that, again, my life happened to be. He happened to be my dad’s best friend from 1958. Uncle Jay also stepped in, asked Sloan, and asked NYU. He was there every day on an old-school phone with the rotary, like, “What’s going on with Matt?”

“Jay, they want to give us chemotherapy.” It’s like, “Well, what kind?” “There’s more than one?” Who knows these things? Jay demanded, “I want to know what this protocol is. What are you mixing together to give to Matt?” We had no idea to even ask that question; I don’t remember them telling us those details. She’s like, “We’re going to give all this crap to you.” Jay found out the dosage of 2 of those chemotherapy agents. One of them is called vincristine; one of them is called cyclophosphamide.

There are a lot of them. I forget the names. Lots of syllables. One of them would’ve made me basically permanently deaf because the hearing loss is just interminable. One of them would’ve given me permanent nerve damage at the dose they wanted to give me based on what they felt the protocol was. Ultimately, here’s a 47-year-old godfather telling his 21-year-old son or 22-year-old godson, “You have to make a choice, Matt. Would you rather risk dying—a 50% chance of dying at 26, 27, or 28—but you might be able to regain the only thing you care about right now in your life, or would you rather potentially live to 80 deaf and with nerve damage?”

How does that work? The helplessness was there again because they had the balls to not even consider me as a human. “Oh, here’s a brain cancer survivor who is a pianist. Maybe we shouldn’t give him the chemo that’ll ruin his life or disclose that to you upfront.” My parents supported me. Jay was right there with me, and he got a big hug. We finally went back in May, and we told them, “We don’t want to do your chemotherapy because I don’t want to go deaf. I want to play again.” I didn’t get into the details like, “What the hell’s wrong with you?” In hindsight, in my mind, I would have this whole conversation with them, and I just said no. I walked out, and that was my last day as an active acute cancer patient at Sloan Kettering.

Kerri Fitzgerald:

Wow. You talk a lot in your book, which we’re going to dive into, but you talk about how there’s a focus on curing the cancer, but not necessarily the humanity of the patient.

You talk about weighing quality of care and quality of life. Tell me more about that and how important the quality-of-life aspect is.

Matthew Zachary:

Those words, quality of care and quality of life, were brought into the narrative by one of my mentors, Ellen Stovall, who was the first CEO of a group called the National Coalition for Cancer Survivorship. That was the first American policy group that talked about living with, living through, and ideally beyond the concept of, oh, if you don’t die or if you’re just suffering, can we suffer less? It turns out suffering less winds up helping people not die.

The focus on wellness and self-agency and self-advocacy and mental health and maybe anti-emetics or things that help your white cells were all new ideas. I was treated like a piece of meat. I didn’t know I was treated like a piece of meat because there was no awareness to even know what I didn’t know I could have had. It wasn’t until years later that I realized I could have had all this, and that’s what just kind of set me aflame. This again, ’90s context, it’s okay. We have different terrible problems today.

Kerri Fitzgerald:

Sure. Absolutely. This set off your mission, your track in life…

Matthew Zachary:

My Shrek quest.

Kerri Fitzgerald:

Yes, exactly. To really represent that adolescent and young adult voice, or AYAs, which is defined as ages 15 to 39 experiencing cancer.

Matthew Zachary:

Yeah, that was a government-defined age group. We kind of just went with that.

Kerri Fitzgerald:

You are the founder of Stupid Cancer, which is the largest AYA community in the world. You talk about, you write in your book, “I finished my cancer treatments, but I’d never really be done with cancer. None of us are. I was forever changed by the diagnosis and the treatments.” You specifically champion AYA cancer survivors. What would you say is missing from the representation or focus on this particular group of cancer survivors?

Matthew Zachary:

Well, like any cause, progress is an ebb tide. Then you learn what you were missing along the way as you make the progress. AYA were not letters that went together. When I met my first cancer buddy, Craig, who was leading the AYA thing, we should have these letters together. When I met him, it was totally by accident my first cancer buddy. Like The Wizard of Oz, everything turned color. I finally met cohort groups working on, it was Gen X at the time that we deserved X, Y, and Z, that we were the outlier group. We weren’t babies. We weren’t old people with their Florida summer homes getting leukemia.

It wasn’t better or worse; it was different, because it’s harder to paint in your 20s when you’re well. The whole argument was: what do we need as a community to build?

There were plenty of policy people, research folks, doctors, nurses, nonprofits that did financial planning and fertility planning, but there was no sort of national umbrella, tongue-in-cheek, comedic, angry narrative. I should also add that instead of going to grad school, I worked for an ad agency for 10 years.

I learned about the non-misogynistic Don Draper world of, “How do you sell shit to people that they don’t need with money they don’t have?” I wanted to build Stupid Cancer as a brand, not like a something-something-something-foundation. That’s kind of where the spark was to fill that. The ebb tide was really that once we identified people having gone through this, or in the 15 to 39 group, then what about our caregivers and our girlfriends and our boyfriends and our parents?

Then the ebb tide was: what about all the kids that survived in their single digits that were now in their late teens, 20s, and 30s? Then what about all the older parents who have Gen X children managing their parents’ cancer? Then it’s like, Black people get cancer too. We can now identify, once we have these baseline standards, how to meet the needs of disparate communities—the gay community, and now today it’s the trans community. It’s a brilliant sort of exercise in realizing where progress yields additional equity.

Kerri Fitzgerald:

Right. At the time, survival rates for AYA cancer survivors were lagging, right?

Matthew Zachary:

It’s worse. It’s worse now.

Kerri Fitzgerald:

It’s worse? Wow.

Matthew Zachary:

It’s worse for different reasons. Most of the time, the data back then was people like me who just get misdiagnosed, and you get diagnosed later in life. Young adult cancers aren’t traditionally solid, which means some of them, like you can do testicular exams, breast exams, or melanoma exams. Those are sort of semi-preventable measures, even though we just don’t do them because we’re invincible. Most cancers in young adults were sarcomas, blood cancers, and gynecologic cancers. You can’t see them. There’s no ovary self-exam that you can look together for.

Part of that was that we get different cancers at that specific age group. It’s just a fascinating data point, how things skew differently. We address those things. It’s hard to educate primary care. When you hear hoof beats, you should somehow think of a zebra and not horses. I love that expression, which I stole from a rare disease group.

Today, it’s different because some of the blood cancers, or the treatments that didn’t exist in the ’90s, are there now. With genetic treatments, it doesn’t really matter how old you are; they’re used to identify what’s right for you. The environment has taken such a huge hit in the last 30 years, and our food supply has taken a massive hit, and this is non-conspiratorial. Colon cancer is on the rise; lung cancer is on the rise, non-smoking lung cancer is on the rise because what we breathe, what we eat in America isn’t food. I say it’s differently worse and differently better, but awareness of what they now call early-onset colorectal cancer is a champion issue of the young adult community. It’s this endless uphill climb, but we constantly chase the ebb tide.

Kerri Fitzgerald:

That’s great. There are unique features about being a young adult that you kind of touched on. Fertility, family planning in the future… If you don’t have access to this information, how do you even know what questions to ask or what decisions to make while you’re navigating your cancer journey?

Matthew Zachary:

Well, we tried to create standards of care, best practices, guidelines, mandates, and legislation as interventions. Because if you’re 23 with this, you don’t know what to look for… Even before the internet, and now with the internet, it might be too much shit. The only people who can help you make objective decisions in the moment you need to are the care teams, unless you’re scouring the internet and hoping you find stuff, but you don’t think to look for young adult fertility cancer stuff.

Those are not search terms. We spent years trying to integrate the knowledge of, when you’re not 8 or 80, here’s the conversation you have going back to quality of care for young adults. It was the strategy, and it’s still implemented now, but you can’t enforce or mandate guidelines to that extent. Most of the young adults I get to speak with today were given the fertility Miranda rights, opportunities to bank their sperm or do oocyte preservation, but insurance just says, “Go fuck yourself.”

That’s just another thing where we need young adult cancer foundations to offset the costs of what we deem rights to biological parenthood.

Kerri Fitzgerald:

Yeah. You talked about some of this work you’ve been doing over the years. What would you say is some of the proudest or biggest successes you’ve seen Stupid Cancer be able to accomplish?

Matthew Zachary:

I was most proud of the fact that the country really needed a dark humor brand that broke the ice for the entire country. We were coming out right as the breast cancer wars, everything was pink and just nauseous. LIVESTRONG was fantastic, but it was like this… I’d like to teach the world… the same Coke commercial with yellow wristbands. It was great. It was just very docile, but well-executed. It did unite people around the idea that we can live with this.

I think Lance’s quote before he crashed into the farm is, “Cancer may leave your body, but it never leaves your life.” I embraced that. He did a couple of really good things, but Stupid Cancer was this antithetical concept. What I was most proud about was that it surprisingly worked, and it united millions of people. If you want to cry in the shower, go over there. If you want to focus on your body part, go over there. But if you want to go out for a drink, which you can’t get away with anymore, society has changed a lot. We invented the cancer trade show, the cancer bootcamp, the cancer meetup. We had the first Tinder for cancer app before apps were a thing in 2015 that failed because of hashtag internet in 2015. We just pioneered… We had a road trip that went around the country, with billions of media impressions. It just defined a generational understanding that cancer isn’t just for young and old, but it’s different when you’re here.

I’m most proud of the fact that the brand created this global appreciation for dark humor, making fun of it, and just having a steam valve release when everything has to be so serious over there.

Kerri Fitzgerald:

Yeah. It kind of ties into that age group where you are a little cynical, and it’s stupid cancer.

Matthew Zachary:

Well, if I can tell you the most important thing that hasn’t aged well, that I’m just so proud of, and people that are still around remember it, one of our events was in Las Vegas… famous last words, but I’m not done yet. George Maloof, who owned the Palms Casino, had his grandson treated by the chairman of the board of Stupid Cancer. We had the opportunity to basically rent out the Palms for 4 days, almost like carte blanche. We decided to take our New York trade show to Vegas in 2012, and 800 people showed up. We had the best time. We did research, we did insights, we had panels; the entire life science community came. I mean, Monster Energy was a sponsor. Not okay in cancer land today, but I’m just most proud of the fact that we broke every single rule because it needed to happen to pave the way.

Kerri Fitzgerald:

Absolutely. Now you also have a long-running podcast, award-winning podcast, now called Out of Patients in its current iteration. You’ve been dubbed the “pod-father of healthcare” [with] over 19 years and 1200 episodes. You’re sharing stories of people who have had to navigate challenges as you did in the health system. What originally made you want to start a podcast and give voice to these kinds of stories?

Matthew Zachary:

I didn’t. First of all, that wasn’t a word.

Kerri Fitzgerald:

Well, yeah, absolutely.

Matthew Zachary:

Another one of my mentors, her name was Selma Schimmel. Selma worked with Craig, and she was diagnosed in the early ’90s in her 20s, so she was like 10 years older than all of us, but really felt like she was in the club. Selma came from radio. Remember radio?

Kerri Fitzgerald:

Yes.

Matthew Zachary:

AM/FM dials and everything? That’s where Don’t Touch That Dial came from, and no one knows what the hell that means anymore. There are no dials anymore. Selma hosted an AM talk show in cancer, and she would wheel this Howard Stern-level giant radio equipment from cancer conference to cancer conference and do live AM radio and interview people live. The way she kind of kept it sustainable was that those live recordings that were aired were put on CD Rom. Remember CDs too? I’m so old. Selma’s nonprofit was approached by an early dotcom company. Again, more famous last words, you say dotcom.

They did, I think, what they call it… Internet talk radio over streaming modem crap in 2002, ’03, ’04. Selma was like, “I don’t really want to do the internet. It sounds creepy and weird.” We didn’t have any safety nets. There were no VPNs back then. We didn’t even know what it meant. We were just terrified of putting our credit cards on Amazon back then.

She said, “Just give it to Matt. We’ll dump this on Matt. Matt, you want to host a live talk radio show?” “Sure, why not?” In February of ’07, I had just launched the website. There was no infrastructure. It was me in a bedroom with no money and no board of directors, which is like an idea. I was like, “How would you like to do this?” “Why not?” I was an NPR nerd. I did radio at college, and I just knew how to program a show, and I just programmed a 1-hour show based on segments, based on, I don’t know, like This American Life, whatever the hell was running back then.

I let the LIVESTRONG young adult world know, “Hey, I’m going to go on the radio.” We just called it a radio show, but it’s on the internet. They’re like, “Oh, can we come on the show?” I basically booked an entire year in 5 minutes. The Stupid Cancer show launched on May 27, 2007, as an internet talk radio show, and it was live.

If you missed it, tough shit. Everyone just kind of gathered around the fireplace every Monday for this live conversation, and it just streamed, and it was over. About 3 years later, iHeartRadio came out with an app for iOS 3, I don’t know. iTunes finally let you have something there. It wasn’t called podcasts yet, although the word was just starting to evolve. I was the only one on the planet doing this, and that’s quantifiable.

We really tried to figure it out, because I think MTV’s Adam Curry had a talk radio show on the internet. Adam Carolla from whatever the man show with Jimmy Kimmel had a show, I think Martha Quinn, but no one was talking about healthcare or cancer. I was kind of, again, happened to be Selma’s friend, happened to say, “Why not?” I happened to be the guy. Here we are 19 years later, and I’m still doing it.

Kerri Fitzgerald:

That’s awesome.

Matthew Zachary:

Yeah. It’s a very strange story.

Kerri Fitzgerald:

How would you say you’ve used the evolution of your now podcast, formerly talk-radio, to drive your patient rights advocacy goals?

Matthew Zachary:

I still channel anger. There’s a quote in the book that I’m living… Mr. Rogers quote that’s been living in my head since I was like 4, which is, “What do you do with the mad you feel?” For years, we just fought to not die. We fought to live with quality, equity, and dignity. That’s what the conversation was. We deserve research, advocacy, clinical trial integration, studies, mental health, survivorship. That’s pivoted now because we’re in a different space where the narrative is now; a lot of that’s there. It’s not great—it’s better. It’s different-better. The bigger fight now is what I want people to do with the mad that they feel: look at how health insurance has become the single most malfeasant abuse of power that’s disenfranchising millions every day because they just want to pocket money and tell you no.

How I’ve used this show is almost culturally calendar-driven. What are the trends? The secret to the best editorial calendar is not to have one. I’ve never had one. I follow where the narrative goes, and I talk about the things that matter in those moments while maintaining kind of an evergreen status that’s not necessarily timestamped.

Everyone did pink shit in October. I never did pink shit in October. Well, why? Oh wait, we know breast cancer exists for 1 month a year. Okay, that’s really stupid. It’s just been this way of identifying the culture critic in me on what we can yell at because it makes no sense. Even with ACA coming out and all of its flaws. We finally have protections for preexisting conditions, which is another conversation; maybe that’s going to go away.

Young adults can now get insurance at 26; insurance can’t do X, Y, and Z. It’s regulated. It was kind of an imperfect, beautiful bill, not the current beautiful bill, which is the worst bill ever in history. It’s a long answer to your question. I tend to follow where the wind goes and where the trends go. Now I’m apparently in politics.

Kerri Fitzgerald:

Well, everything’s political.

Matthew Zachary:

Everything is political, yes.

Kerri Fitzgerald:

Healthcare is no different. One point on what you just said… You talked about awareness. I think it was in your book; you say, “We don’t need awareness. Everyone knows what cancer is. We need action.” Following the news, following timely events that are happening seems like a natural way to go to…

Matthew Zachary:

Well, it’s also like herding cats because there’s so much noise.

Kerri Fitzgerald:

That’s true.

Matthew Zachary:

But again, it goes back to: what do people need to feel? Which is, as a theater kid, it’s like, how do you make the audience care about what you’re saying? I don’t think anyone gives a shit about what anyone has to say unless you know how to make them feel and react and think and do. This is a helplessness situation now, because again, helplessness 20 years ago, 30 years ago was that we just felt victimized because there’s nothing that’ll help us feel any better about what we’re going through.

No peer support, again, no mental health, no fertility. All that stuff I hopefully think we take for granted today. Most young adults who have access to these things don’t know. They stand on the shoulders of my cohorts of 50 people who fought for this stuff. Just like this community of Black doctors I spoke to don’t know about how cancer navigation was invented by a luminary Black doctor in Harlem.

These are the historical aspects I try to bring into this, but it’s just that self-victimizing way of, “what do we do with the mad?”

Kerri Fitzgerald:

Yeah. I want to turn to your book now. I have it here. It is “We the Patients: Understanding, Navigating and Surviving America’s Healthcare Nightmare.” Just recently published in May of 2026. Everyone should go out and buy it.

In it, you detail not just your own experience that we’ve talked about here, about your brain cancer journey, but you also talk a lot about the history of healthcare. I found it very informative… Things I had no idea about the healthcare system we’re all living in. You write, “America has the most expensive healthcare system in the world, and yet in 2025, our life expectancy was ranked 48th, which is 4 years shorter than other developed countries.” What do you think it’s going to take for people to join your call to action to change the American healthcare system?

Matthew Zachary:

Yeah. The running sad joke is we can never really have nice things because capitalism has its pros and cons. I’m not anti-capitalist. I’m pro-free market, but there should be regulations on abuse of power. Starting with the HMO Act of 1973, that’s when everything started to just go to shit. There’s a wonderful story about how Hillary Clinton and Bill Clinton, again, bad names these days but brilliant policy folks, were developing this universal healthcare strategy. It wasn’t really universal healthcare. It was squished by Newt Gingrich, one of the worst politicians in American history.

Why we can’t have nice things is because profits matter more to capitalism than maintaining the safety and the sanctity of your voters. Everyone’s divided on a single issue… Israel, trans rights, immigration, and whatever the hell it’s going to be. We haven’t reached the point yet where healthcare is a single issue.

Where I’m at now is, I think what people can do in my larger vision for what America can be is to finally start bringing all these angry people together across party lines. I don’t care who you voted for; you probably didn’t vote to go broke when you get sick. You probably didn’t vote for your doctor to be vetoed by an insurance company when they know better.

You probably didn’t vote to have a stranglehold on administrative burden when you have to be your own advocate and get an MBA and fight back, that you didn’t even ask for. No one should fight their cancer or their disease and insurance at the same time. No one voted for that. When you are sucked into and crushed by American healthcare, you don’t know what to do with the mad that you feel. But I believe today the narrative, and I write this in the book, and I talk about this all the time, if we were to organize, not as a labor union per se, but as a single-issue voting bloc, not a PAC, not a lobby group, we would be 30 to 40 million Americans who agree on one thing.

We do not want American healthcare to profit at the expense of our capacity to vote. There should be… Make all the money you want, maybe don’t make all the money you want—but there are ways to still have equity and profitability and do less harm to your constituents. But until we are constituents, until they feel that we could be a threat to their electability, that, to me, is the next five years of how we organize.

Kerri Fitzgerald:

Disease and cancer don’t care who you vote for. We’re all universally impacted by this.

Matthew Zachary:

Right. Denials can be asthma medication for your kids. I’m involved with the endometriosis movement that’s fighting for access to brilliant technology that makes that shit suck less. I’m involved with the medical burnout space. I work adjacently to the menopause movement, because it doesn’t matter where you are on the spectrum, if insurers can say no and have that power, and their lobby is like 100x the NRA money. What can we do? What elected officials’ money and states respond to most is if you’re like 20% of every district in your state and you can codify that; they’ll listen to that.

We’re starting to see these trends in the states where, even without organized voter blocs, they see what people are angry at. Whether it’s private equity buying hospitals and crushing systems, Arkansas, of all states, Sarah Huckabee passed a law that banned pharmacy benefit managers, terrible acronym, from owning pharmacies because when they own the pharmacies, they control the costs and they inflate the shit and they just bilk the consumer.

The fact that they can’t do that is a good thing, but that’s the trend we’re seeing.

Kerri Fitzgerald:

That vertical integration is really a killer.

Matthew Zachary:

Yeah. They own the bank, they own the doctors, they own the pharmacies, they own the PBMs, and they own basically everything else in the employer platforms.

Kerri Fitzgerald:

You think this is stuff that people still don’t really understand because it is such a complicated system?

Matthew Zachary:

I think that’s by design.

Kerri Fitzgerald:

Sure.

Matthew Zachary:

Because no one goes to cancer university to get sick in 5 years and knows exactly what to do. They prey on, and I don’t use the word ignorance because ignorance means you’re consciously deciding to avoid facts and objectivity. We are not ignorant. We are impossibly uninformed about how to do this, and that’s the advantage they have.

Kerri Fitzgerald:

One of the great things about your book is you include some kind of hacks and patient rights information to help people understand there are options even in the current challenges. There are things that they can do, like appealing denials. I think decimal points of denials are even appealed, right?

Matthew Zachary:

Again, these are all things we shouldn’t have to do, but if there are ways to help people know how to do them, we can at least figure out little loopholes on our own. You’re right—denial across the board, again with asthma, endo, cancer, whatever it is—most denials that happen to be appealed are overturned. They make your life miserable doing it, but they are at least overturned; 2% of denials are actually appealed, and they count on that, and they’re denying on purpose now, not even objectively.

Kerri Fitzgerald:

Yeah. And using AI to do it.

Matthew Zachary:

Oh God, that’s like Skynet shit. We need to fight back with different Skynet. We need a Skynet for patients.

Kerri Fitzgerald:

Yeah, absolutely.

You give a compelling example in your book about the state of healthcare in America. You say, “Why do we tolerate it? Would we accept a car that got worse every year but cost twice as much?” I liked that. What are some actionable demands you’re fighting for that you think can actually move the needle?

Matthew Zachary:

I channel Ralph Nader a lot, and for those that don’t know who Ralph Nader was, look him up. Ralph Nader was a pivotal American figure in consumer rights and consumer protections. He was a weird politician, but he lived in health policy and health economics. He worked with the auto insurance industry, the auto industry, and the Consumer Protection Bureau of the United States back in the Kennedy/Johnson era. He wrote a book called “Unsafe at Any Speed,” shaming General Motors for how terrible they made their cars for safety and that more drivers were dying on the road. The auto insurance industry, which wrote all these payouts. It’s like, what if we gave the seatbelt concept, where fewer people would die on the road, and you’d make more money by increasing your policy rates?

As much as there’s a good use of capitalism, the incentive was better and safer, not cheaper.

What’s beautiful about consumer protections—it solves for equity. No matter where you come from, how rich or poor you are, your zip code, your education, everyone gets a seatbelt. Fewer people die on the road; insurance makes its money differently: safety. Where I’m going with this is: what are consumer protections in American healthcare?

We shouldn’t have to have them, but the harm that they’re causing now is different harm than medical harm, hospital errors, and whatnot. Harm is the causation of this downstream waterfall of financial ruin, administrative burden, billions of dollars siphoned off to their—I think Mark Cuban called them a cartel—waste and fraud in Medicare, not Medicare Advantage, in Medicare, in the cost to employers, health systems, and the human beings that are living with that; that’s harm.

The concept that I’m kind of proffering up is: what is the seatbelt law? What is the consumer protection seatbelt for voters when they enter American healthcare? We kind of dam up that river so the seatbelts just avoid the crash. It’s just a metaphorical economic idea that I didn’t really set out to make a thing, but apparently that’s what most people are taking from the book. I’m a health economist, which I’m not. I take no credit.

Kerri Fitzgerald:

No, it’s great. It’s eye-opening what you write in the book and the parallels you shared with the seatbelt.

Matthew Zachary:

What is the seatbelt to prevent the harm of denial delay?

Kerri Fitzgerald:

Yes, absolutely.

Matthew Zachary:

Which, again, is the universal concept that I believe most of America would get behind.

Kerri Fitzgerald:

Yeah. I want to talk a little bit about GoFundMe and crowdsourcing in general and how that has sadly spiked. Almost two-thirds of personal bankruptcies are associated with medical expenses. You talk about this revolution, pointing to 19 million cancer patients and survivors.

Matthew Zachary:

Alone. Forget the wraparound people.

Kerri Fitzgerald:

Yes. Plus 36 million caregivers…

Matthew Zachary:

Oh, that’s right, I did write that.

Kerri Fitzgerald:

You said it could be a very powerful voting constituency. I want to ask you more about We the Patients, your nonpartisan healthcare affordability movement. What are some goals of that organization?

Matthew Zachary:

This is a beautiful work in progress. There’s nothing official going on yet because it’s all in planning. I don’t care if UnitedHealthcare knows about this. They’re not going to like it. But in order to form a more perfect union, if I may quote one of our founding documents, you have to start organizing people around a single issue. Bipartisanship is hard to come by these days. How do you earn the trust of communities that want this not to exist?

I didn’t know this; I’ve learned this on the fly. The best way to do that is polling: Harris Poll, Quinnipiac Poll, Fox News Poll, CBS Poll, but not a political poll—a consumer poll, which apparently has never happened in American history. There has never been a populist consumer polling company that gets the sentiment based on zip codes and heat maps of how Americans genuinely feel on a day-to-day basis about their health insurance.

Some people fly through; if you haven’t experienced it, fine, be a me versus we. More people are living inside it than aren’t, and you don’t need everyone. A polling company solves the data gap in how we really feel in the districts. We can have fun with these polling engines that aren’t political.

One of the questions we’re going to be asking is what’s an EOB? Eggs on bacon, right? We can have this conversation with America as a polling company. Then, once we have that brilliant data on the true sentiments of just the right percentage of people, we can extrapolate that this represents 8%, 10%, 12% of the cancer community, of the voter industry, of the diabetes… No one wants this to be in America anymore.

Then we codify. I hate the comparison; we’re going to do what the NRA did without distorting constitutional rights because there’s no right to healthcare, but we have the right to protections from it. As a constituent voter bloc fighting for protections in the states that eventually go federal. That’s what We the Patients is going to be.

Kerri Fitzgerald:

Amazing.

Matthew Zachary:

It’s complicated, but it has to happen.

Kerri Fitzgerald:

I think one of the big cruxes is the complexity of it and steering a battleship, almost.

Matthew Zachary:

Right, because there’s so much downstream. It’s too noisy. I’m not saying don’t get into nonprofits. We’re still going to need GoFundMe. It’s going to get worse before it gets better. Politicians don’t give a shit about anything except getting reelected. But when you can say, and the NRA, I think it’s 4% of every 1 of the 435 congressional districts, roughly based on blue and red states, this could be up to—I mean, you said 19 million patients alone, 30 million caregivers.

This is more than half the country. This could be a 20%… I’m sorry, I’m doing math, 60 million Americans potentially. This could be that huge constituency that’s never been codified and organized on this 1 issue that none of us want. It’s very similar to the gun rights issue; 80% of the country wants reasonable gun protection, right? It’s like, this isn’t like, I’m not going to get into politics here, like, AKA-47 stuff, but most Americans, writ large, and the polling engines support this, don’t want this crazy stuff.

They don’t want school shootings. They don’t want mass shootings. Then they blame mental health because that’s the lobby. With that amount of power, we can do anything we want and kind of go back upstream and work differently as a power, civic power. That’s the word I learned.

Kerri Fitzgerald:

Yeah. It’s a powerful opportunity if we can make it happen.

You have these incredible goals, ideas, and vision for what healthcare could be that you lay out in your book. You’re also a very rational, down-to-earth kind of guy. I want to ask you, in 5 years, what do you think we might see in the healthcare system?

Matthew Zachary:

If I could be truly idealistic, growing up in the ’80s and ’90s, I remember Bell Atlantic and AT&T just cannibalizing the country with the phone, with landlines, and what we had to go through in that time to break them up and create the baby Bells, which led to the smaller AT&T, Verizon, T-Mobile, that was so, I guess, underrated in how most Americans had no idea we were getting protected from that level of harm. I know there’s a slow-burning movement to break up big insurance. I don’t know how that happens. I don’t know where political will comes from, but I’m dreaming big; we break them up. Period. End of subject.

Kerri Fitzgerald:

All right. Well, that sounds great.

Matthew Zachary:

Yeah.

Kerri Fitzgerald:

How can people connect with you, learn more about you, get your book, get in touch?

Matthew Zachary:

Having been on the internet since, God, 1998…

Kerri Fitzgerald:

You have quite a footprint.

Matthew Zachary:

…Before Google. I’m pretty searchable at this point now, just Matthew Zachary, but it’s matthewzachary.com. LinkedIn is really where most people can find me. I’m just now understanding Instagram as a 52-year-old man with 16-year-old twins. I have an intern doing some TikTok stuff that scares the crap out of me. My podcast is “Out of Patients with Matthew Zachary.” I write on Substack. I have a blog. I just do just enough to help people figure this out.

The book is everywhere books are sold. I prefer you don’t give Jeff Bezos your money. I recommend bookshop.com, the leading independent online bookstore. It’s at Barnes & Noble and in stores. It’s everywhere you get your books. It’s a Wiley publication, and thanks to Wiley for all of that.

Get angry with me, and let’s do something with the mad we have.

Kerri Fitzgerald:

I love that. Well, Matthew, we like to conclude our interviews with the same question of everyone. What would you tell your younger self knowing what you know now?

Matthew Zachary:

It’s going to get a lot worse before it gets a lot better.

Kerri Fitzgerald:

Seems like that’s applicable to the system we’re living in.

Matthew Zachary:

Yeah, very consistent.

Kerri Fitzgerald:

Well, Matthew, thank you so much for joining us on My Hero 360 today. Your story, your book, your passion—it’s incredible. Thank you for everything that you’re doing, and thanks for sharing with us.

Matthew Zachary:

The pleasure is mine.

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