The Oncology Podcast

On Advocacy and Revolutions: In Conversation with Matthew Zachary

• Professor Bogda Koczwara AM • Season 1 • Episode 11

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Welcome to the latest episode of Supportive Care Matters. Join Medical Oncologist Professor Bogda Koczwara AM and advocate Matthew Zachary, founder of Stupid Cancer and the creative force behind the documentary "Cancer Mavericks." 

Matthew shares the profound journeys of pioneers who transformed cancer survivorship from the 1960s to the present day. From exhaustive research to heartwarming interviews, discover the intricate process of honouring those who fought tirelessly to improve the lives of cancer patients and survivors.

This episode traces the evolution of cancer survivorship, from the early days of merely surviving to today's focus on enhancing life quality. Explore advancements in genomics, the importance of consumer protection and the nuanced approaches required for effective cancer prevention and treatment. 

As we navigate through the personal and socio-economic implications of cancer survivorship, we offer crucial advice for newly diagnosed patients and those just completing treatment. Uncover strategies for overcoming the bureaucratic challenges of the American healthcare system and the necessity for mutual empathy between patients and providers. 

As we conclude, we discuss the need for another revolution in society's attitude toward cancer survivors, underscoring the vital role of community support - and the new role of consumer advocacy - in making the cancer experience a little less daunting for others.

Visit www.oncologynews.com.au for show notes and more information about Supportive Care Matters!

This conversation is proudly produced by The Oncology Network.

Bogda Koczwara:

American philosopher George Santayana once said those who cannot remember the past are condemned to repeat it. I'm about to meet someone who, single-handedly, is correcting that very error in cancer survivorship. I'm Bogda Kozcwara, and this is Supportive Care Matters. I'm Bogda Kozcwara, and this is Supportive Care Matters. And PS, a little warning about the language, which may be, let's say, a bit colourful. My guest today is Matthew Zachary, a cancer advocate, entrepreneur, podcaster, founder of the award-winning non-for-profit organization Stupid Cancer and a creator and host of a documentary, the Cancer Mavericks, which I binged on just very recently, and I think so should you, M matthew. Welcome to the show.

Matthew Zachary:

Thank you for having me. It's an absolute pleasure to be here.

Bogda Koczwara:

So we are having this conversation in June, and June is the National Cancer Survivorship Month, which is probably a good time to kind of look at the story of cancer survivorship, and your documentary, the Cancer Mavericks, which we'll put a link on in the notes, talks about the history of cancer survivorship, so perhaps that's a good spot to start. Why is history important? Why history of cancer survivorship?

Matthew Zachary:

Well, again, thanks for having me on the show. I had the opportunity to make my first documentary, an audio series, in 2020, because the pandemic kind of gave us lots of time, gave us lots of time. So I've always wanted to tell the story of the people upon whose shoulders I stand. That mentored me, that incubated me, that I didn't realize who they were at the time in the annals of impact over the past couple of decades and for me, advocacy means, if you do it right, no one knows. So that wasn't for glitz or glory or glamour or anything like that. They chose to give back in the way that they did, as the Ant Farm right, we're all underground working for change on behalf of other people who need not know we exist, and I was like, oh my God, can we at least let the world know these people existed in some form or fashion and they were standing upon other people's shoulders. That went back even more decades. So I sat down for a couple of months and I storyboarded as many names and as many stories as I was made aware of in my time in the industry, and we got some funding for it and we hired a production team. So I had the chance to work with a production team from Public Radio who did history series. This was audio. They've done video. So they spent a year storyboarding and identifying names and going through research and history documents and media files and television and they came up with this incredible 150-page script. And then they were deployed and they interviewed everyone dozens and dozens of people who, like from the 1960s and 70s names that even my mentors never heard of that were able to accomplish extraordinary things at very different times during Vietnam, during Reaganomics like all these were so perseverating on the things we knew were happening in the country. There were incredible things happening that we didn't know about. That they exist today because of these people, so it debuted in 2021.

Matthew Zachary:

It's won all these incredible awards and thank you for binging, thank you for listening to it, but I'm not really a student of history on paper, but the fact that no one's told our story on behalf of ourselves was not okay for me. And we stand upon the shoulders of greatness and the greatness stands upon shoulders of greatness, and the goal of it was all about let's have some perspective. That was it. History is a teacher passes prologue. You know good old cat poster metaphors, but what does it really mean today to appreciate how far we've come and we have better or different problems to have. That was the modus operandi behind why I felt this story needed to be told, and everyone that's listened to it is being given an incredible perspective about what they do, why they do it, how it got done in the first place and what it took to even start the engine.

Bogda Koczwara:

You know, I think about this cancer history book, the Emperor of All Maladies, which is the sort of brick-size story of cancer. And I recall the time and I loved the book when I kind of went to it thinking which is the sort of brick-size story of cancer. And I recall the time and I loved the book when I kind of went to it thinking there's got to be a chapter on cancer survivorship, there's got to be a story of cancer survivorship in it and there isn't one. There are some perhaps Mary Lasker is mentioned and the war on cancer is mentioned but I can't think of a book or a chapter or any other source where it actually captures the complexity and the story of how cancer survivorship evolved. And, based on what you presented, it goes back much further than the day when the word was first coined. I think the term cancer survivorship was coined in 1985, but the story of cancer survivorship started with cancer survivors, which probably goes back to the 50s and 60s.

Matthew Zachary:

Yeah, I have profound respect for Dr Sid Mukherjee who wrote Emperor of All Maladies. I was indirectly part of the Weta PBS, the TV show they made based on the book mean. He's a doctor. That's his job is to tell the medical side of things, and science is really important and it gives us a different level of perspective about what it takes to bring drugs to market and how far we've come just understanding what it really means to treat this rogue. You know this horrible disease that's affecting everyone in the world. But I base cancer mavericks on the fact that I don't need to tell that story. That story's already been told.

Matthew Zachary:

This was about the people, not the disease. The people who rose up, who forced the government to change, who stood up, did the die-ins, you know, made all the noise Because if they didn't, what needed to happen wouldn't have ever happened. And unfortunately, that's what it takes in this country, this stupid country of mine, to get things done. And the moral arc of the universe bends towards justice. And it took 30 years for the word survivorship to appear in the 1980s. It took another 10 years for it to become legislative policy. It took another 10 years for it to become legislative policy. It took another 10 years for it to become practiced in medicine and it's now considered. This is what mental health is. So, 40 years, 50 years later, we now care what happens to you when you get cancer, instead of just treating your biology and saying, go, walk it off, you'll be fine one day instead of just treating your biology and saying go, walk it off, you'll be fine one day.

Bogda Koczwara:

Yes, but to get to that point of caring of what happens to you, there was somebody somewhere who says I am a person, I have got needs, I want to be heard. And that person speaks from the perspective of an individual rather than a professional. And I think that's perhaps maybe why those stories are important, because stories go behind a sort of professional description. It is more that there is a certain individual dimension to it, isn't it?

Matthew Zachary:

Well, sadly, it all came down to money. It really all came down to money because the more cancer survivors that live, the more money the pharmaceutical industry made. Because you're dead, you're not a customer. Honestly, there's a brutal truth to most of that, but the fact that society made such a noise and took so many cues at least in the 90s they took lots of cues from the AIDS movement. What ACT UP did was force medical research and force. They made voters Threatened. Voters became a threat. The breast cancer wars were all voters.

Matthew Zachary:

They were the ones that forced the first ever quality of life medications. There wouldn't be anti-medics without cancer advocates in the 1990s. There wouldn't be white cell boosters. This is not a brand conversation you want to amend. It was a huge thing to come out Quality of life medication, not quantity of life medication. So that to me is, when you force something to happen, it's not just because you want it to happen. You prove that you're voters. And again, regrettably I mean in this country especially they'll listen to voting blocs more than they'll listen to human beings that have needs.

Bogda Koczwara:

But that takes enormous amount of frustration and struggle and it's really sort of the story that you tell is the story of social change, advocacy with enormous amount of sort of power and force in it. Is that the only way? Is that where we're going in the future, or is it the American way?

Matthew Zachary:

That's a whole other podcast, the American way Right Again. Regrettably, the majority of the reason why things change in this country is because of voting. I mean here in the US everything's state-based, which is fantastic, because certain states this is probably not the best way to describe it, but many states are a form of eugenics, where there are better practices, better policies, better entitlements that just don't exist in other states. So you're likely to survive more, have a higher quality of life, get reimbursed for different things, be given programs, tools and services that help you fight your insurance companies or get fertility preservation or all these things that might be covered in your states, and most of the fancy hospitals are in all over the country. But it's all about the geolocation of what they want out of this and concierge service and brand value and competitiveness. So I'm not going to be too cynical about this because clearly, who doesn't want some kind of curative live with it strategy? But it comes down to influence and voting blocks and understanding how policy works.

Matthew Zachary:

In Washington DC I mean just recently. I mean again apolitically the Biden administration passed three groundbreaking law. I mean under Trump. I separate the president from the administration because it's too easy to just go down the stupid rabbit hole in this country based on the human being who happens to occupy the White House chair, so something as simple as the no Surprises Act, which is flawed.

Matthew Zachary:

But here in the country what that means is that now hospitals can't gouge you on your medical bills. They have to disclose certain things up front. They have to provide you with receipts. They didn't have to do that before. But the problem with that is you need to know the law exists to take advantage of it. So it creates another level of advocacy on the part of people in this country in terms of what navigation was. But navigation wasn't worth until 1978. So we're kind of going back and forth, looking at what history has provided us, and now again better problems to have. Navigation means don't get screwed by your medical billing division of your hospital when they charge you $4,000 for a little plastic nib of aspirin.

Bogda Koczwara:

So the task in the 70s was not to die of cancer, and the task in 2020 is not to get bankrupt as a result of cancer and all the things that follow with that.

Matthew Zachary:

I remember. So Livestrong really was an unsung catalyst here in America in the early 2000s. I know they threw the baby out with the bathwater when he got caught doping and lying. It was really unfortunate. I did a whole chapter in the documentary about the rise and fall of Livestrong with their former CEO, doug Ullman, who's a really good friend of mine. He was one of the few people that lifted me up out of the ether and said I'd like to be an advocate. So I owe him a lot in terms of influence and friendship. But Livestrong really was a very galvanizing brand I mean the yellow wristbands and Oprah and celebrities and it galvanized the country around.

Matthew Zachary:

Let's just not live Hopefully. Let's thrive in our quality of life and our lifestyle. Well, they say quality of life was tantamount to quantity of life. Like that was the first time ever that we were demanding that what in science we call iatrogenics right. We deserve right.

Matthew Zachary:

No one asked for this. We shouldn't go broke. We shouldn't go deaf. We shouldn't go blind. We shouldn't have late effects. We shouldn't have cognitive impairment. We shouldn't go deaf. We shouldn't go blind. We shouldn't have late effects. We shouldn't have cognitive impairment. Our children will live longer than us at this point. Now, what do they need to thrive? How do you become a productive member of society when you're under 40 with this? Or how do you hug your grandkids and not go broke and keep your job? The start of anthropologic shift in our culture that Livestrong really amplified Again. Survivorship was invented in 86 with the National Coalition for Cancer Survivorship In 96 and 98, they did the March on Washington and they finally got Bill Clinton to sign legislation on these things. And then finally Livestrong said damn it, we're here. It's like we're here where queer, we will not disappear for cancer, so we have better problems to have. Let's not get gouged by a system that didn't care about us because we kind of just died 30 years ago.

Bogda Koczwara:

So do you think that the tools that you need to apply in sort of in cancer advocacy, are they different now, or are the principles the same, or are the methods the same or different?

Matthew Zachary:

So I cut my teeth in the ad industry before I started to be cancer. So I got a sense in my 20s and early 30s. I got a sense of how you sell Doritos, metaphorically speaking, how brands work, how campaigns work. How do you manipulate people to if I'm going to quote Fight Club to buy shit they don't need with money they don't have. End quote Right, that's marketing, that's all advertising, that's consumer products and all the stuff on all the ads and everything like that.

Matthew Zachary:

Cancer has now become like a demographic in this country. People who survive, millions of people who now live with through and beyond, which is another live strong phrase with through and beyond, like I love that. That wasn't. No one knows that was a term. They invented that term with through and beyond, hopefully beyond, but that was really what they came up with. Millions of people now survive with through and beyond. So you're still a consumer.

Matthew Zachary:

So I'm looking at these trends now where protecting the sanctity of your quality of life with through and beyond cancer is really consumer protection as much as it is patient advocacy, because you deserve the right to thrive when something you didn't ask for interrupts that, and it's in the interest of all consumers as patient advocates. In my case, I consider myself a little of both patient advocate, consumer protection advocate. What do you need? What does your voice say? And just to wrap that up in a bunch to some of the questions I know we're going to talk about in a minute is that we've come so far in terms of drug development and access and molecules and genetics. We're moving in a direction where consumer advocacy is going to be more important than patient advocacy, with genomics and testing and markers and diagnostics. Now this is all like let's try to not be a patient in the first place.

Bogda Koczwara:

Because being a patient carries a risk of being quite vulnerable and of course, your voice depends on how much voice you have, and this is where some cancer types are more successful in presenting their case. Some populations are more successful in sort of presenting their case. Same, in a way, in consumer movement. How do you maintain equity in all?

Matthew Zachary:

this and can you do that? One of the more defining moments in the 2000s was when Lance was very public about the fact that there is no one cancer. There's 25 billion different types of cancer today. There were 200 back then, but now with genomics and biomarkers and all these things, this is an infinite number of types of cancer biology that are affecting the human genetic universe.

Matthew Zachary:

At this point Now I'm exaggerating, but that's the gist is that we now understand it more biologically speaking. But it was really a shock to the system when we were kind of throwing away the let's cure cancer model. There's no curing cancer. It's not one thing like you're going to take Tylenol and your pain goes away. So just getting that language into the culture was really important that this isn't one thing to cure. I know it's kind of still exploited. I don't like when people use the vernacular let's cure cancer. Fine, okay, enjoy that, own it. It's a Hallmark card, we can deal with it, that's fine. But now that we're understanding that cancer is a complicated biological disease that is naturally occurring in evolution, it's just when your cells go wild.

Matthew Zachary:

Cancer has been around. It's a protective biological defense mechanism. It exists to kill bad things in your body. It's just when it kind of goes awry. So differentiating it within body parts is going to be very difficult.

Matthew Zachary:

You can't attack everything one way and in a perspective we can look at how there are certain cancers you can prevent, like HPV cancers. There are certain cancers you can now detect a little early, like colon cancer with things like you know those home genetic poop-in-a-box tests. Those are great. There are liquid biopsy tests now. The 23andMe test can semi-predict, but it's very different. A breast cancer is a very different disease and there's 30,000 of those. Then a pancreatic, which is very, very hard to detect, that don't show symptoms, and then a brain cancer.

Matthew Zachary:

I was bored with my tumor. Like you can't prevent that. You know little kids. What are you going to do? Free MRIs in kindergarten? No, you're not going to do that to little kids.

Matthew Zachary:

So you have to appreciate the variability and it's not fair and it's not okay and there is no equity in terms of the biology of this and a lot of it still comes down to luck. But progress is still something worth experiencing and appreciating that we're in a place now where and again, I'm not a brand spokesman for, for, for Katruda, but it kind of became a miracle drug where it used to be. They were like five drugs in the nineties their old platinum, chemos and radiation and that was it. Now there's a bunch of stuff and it kind of applies to it's. Like you know, you can glue anything with glue.

Matthew Zachary:

So drugs like Keytruda, these biomarkers they all now can apply to multiple different types of cancers and your genetics things you can't control. The way you're born, your family, your DNA may not always be your destiny, but it's now a better way to understand what might be right for you, which is another rabbit hole of how do you know what's right for you? But I'm giving you perspective on how far we've come to understand how human biology and the uniqueness of our DNA and our genetics really does help you get through specific types of cancers.

Bogda Koczwara:

You're outlining something quite interesting that on one hand, we have so many new options and so many new solutions and treatments and advances, and the market and the science is driving all these at a breakneck speed. On the other hand, you're also outlining a long list of things that we cannot control, and I think it's a very, very Western concept that we tend to think that there is a lot that we can control because we have the science and the technology, and yet you outline well, there's the genetics and luck and things that you will never control. It's very hard to reconcile those two and as an oncologist, I see that when I see patients that I support who struggle with this tension. On one hand, you could have this long list of things that could be done and on the other hand, you can never be certain of how well they work.

Matthew Zachary:

And that speaks to sort of the ebb tide of progress is, in the 90s, cancer was like the shit happens store. You didn't want to shop in but there were four things that you could buy or someone else could buy for you. Yeah, and today it's like going to. You know, here in the states we have like a costco or like a bj's these massive, those two, yeah, there you go, all right, fine, yay, we've trickled out our stupid buying too much crap.

Matthew Zachary:

You don't need culture to other countries. And now you're going to the store where there's a ton of stuff and there's no, like you know, the old guy in the smock that welcomes you to the store. There's no guy welcoming you to the store when you walk in and it's gotten more complicated because of pricing and you can get to the pharmacy benefits. And in whose interest is this? To make money off of you and whatever. That's a separate. Probably not this, not not the area that I swim in in the pool, but the complexities are kind of a better problem to have than either just dying and having four options. But this again is where the new level of advocacy and protection has to come in, because someone has to be the greeter at the door. There's some kind of window between you have something bad and here's when treatment starts, and then here's when treatment starts and here's, hopefully, when treatment ends. So this is a customer journey in the sense that, just like you know, you see an ad, for I keep going back to Doritos because I used to do Doritos in the 2000s at my NNZ. But, like you, learn about the new Doritos. You know how do I get them, you eat them and you want to keep eating them. So it's not apples to apples.

Matthew Zachary:

But if you look at that first, oh shit window, you don't know anything. You don't go to like cancer school to then get cancer. It doesn't work that way, right? You may be lucky enough, and lucky with an asterisk, to know somebody who's been through this. That could kind of be your guy. But that's all about luck. And the internet is, I think, the most unsung determinant of your access than anything else. And I'm a big proponent of trying to remember that the internet didn't exist 30 years ago or 20 years ago, even maybe 10 years ago, to the extent that it's a thing now and it's more of a shit show now than it used to be. And the luck factor of that oh shit window is unfortunate, because you're not prepared to know what to know. So you go to Google or you're at the mercy of your cancer center, or you don't think to know, or maybe you do know to ask for a second opinion, but you don't know what that means.

Matthew Zachary:

And I tend to joke in Yiddish. I mean, everyone knows what chutzpah is. It's like moxie and internal strife and whatever. Not everyone is born culturally with that congenital chutzpah. So, generationally speaking, we're aging out of a generation that would normally just say yes to the doctors and we're entering into. The boomers are now the ones that are going to understand how to question more. The boomers are now the ones that are going to understand how to question more, and the Gen Xers like me, the children of the boomers are the ones that are fully savvy and hopefully have the gumption, just by being Gen Xers who used to eat dirt in the 1980s, to what do we need to know? I read this on the internet because I know how to sift through information Not everyone knows, which again goes back to, this is a consumer issue as much as it is a patient navigation issue.

Bogda Koczwara:

And I think that really came across in the documentary of how important were consumers in driving change. So if you were to go to this Dorito analogy, it is not just that the shopkeeper says to you these Doritos are good, but there is actually somebody else who you might I don't know meet in a bar and say, well, the other Doritos are better, or that particular table has better plates with better looking Doritos, and I think that that's I don't know. You know, maybe I'm saying something politically incorrect, but I think as health professionals in cancer world, we probably underestimate the power of peers, friends, networks, communities, of finding people who kind of provide that sort of credible connection. So I don't think it's just the scientific knowledge that health professionals deliver and I think that that really came across in the documentary. Was that intentional or did I just see it that way?

Matthew Zachary:

No, I try to make the point in the documentary that there really only been maybe five or six great consumer rebellions in America in the last 50, 60 years that have forced the change we need. I touched on a few of them, obviously, when Mary Lasker forced and she was one woman but she was very powerful she shamed the president and forced the NCI to get funded and started the National Cancer Act. We mentioned the gentleman, harold Freeman, who created navigation in Harlem and got the Black Panthers to help breast cancer screenings. I didn't mention these, but the Americans with Disabilities Act and the Orphan Drug Act. Those were all 1980s, forced by people. Obviously, hiv and the breast cancer wars, coalition for cancer, survivorship, but Live Strong and Stupid Cancer and the young adult of survivorship, but Livestrong and Stupid Cancer and the young adult.

Matthew Zachary:

The Gen X revolution in the 2000s that I was a part of really helped force. Honestly, the best parts of Obamacare. Aca was really about pre-existing condition and who had the most to lose but Gen X and younger. We had the most to lose by pre-existing condition because we had the rest of our lives to get screwed by insurance companies who could judge us based on shit we didn't ask to have. So our big victory again, you can tear it apart as much as you want. They fought to get rid of it. It's the law of the land forever. No one's going to bother anymore. It was really to help kids and millennials and Gen Xers have a decent life without the scrutiny of insurance companies throwing you over the rails.

Matthew Zachary:

So we helped create an incredible equity forever in this country. That wouldn't have happened if we didn't make a lot of noise in the 2000s. Where I'm going with this is I don't think we've ever had something as big as that since. And now that we're moving into better consumer protection, better advocacy, better organizational skills if you take advantage of the internet in a good way, there are incredible opportunities to mobilize the right Americans around the right issues and force more systemic legislative changes and to force the big companies that aren't in healthcare the AI companies or the search companies that aren't in healthcare, the AI companies or the search companies or just consumer product companies that if you want us to buy your crap, you got to do this now because one bad tweet and you're out of business. So I believe that we're due for another great voter consumer advocacy revolution in this country.

Bogda Koczwara:

Overdue. So the next survivorship revolution coming up.

Matthew Zachary:

Yes, and it's all about money, honestly, and that's unfortunate. This is human, this is our society. It's all about who makes the most money when patients and consumers win.

Bogda Koczwara:

I can think of one area of revolution, and that is access to cancer drugs that perhaps are not the latest and greatest, but the regular, cheap drugs that nobody bothers to produce and yet they need it for cancer treatment.

Matthew Zachary:

Again, in whose financial interest is it that every patient gets on the right medicine they need when they need it? Ideally it's the patient, but in this country we know the patient isn't the end user. The prescriber is the end user, and I'm all for incentives and free market. I'm all for that. If you can make money helping people, make money helping people, but make sure those people are actually helped and not impeded by additional market forces that will profit if you don't get the right medicine for you.

Bogda Koczwara:

There's a revolution coming. Can we manage that without a revolution? There are certainly downsides to revolutions. As far as history is concerned, perhaps outside of survivorship.

Matthew Zachary:

Yeah, have you met my country? We're kind of a mess right now.

Bogda Koczwara:

Well, yes, let's pick the topic of personal costs of revolutions. As a survivorship revolutionary yourself, you've had your personal costs that you had to grapple with. Do you have the stamina to carry on?

Matthew Zachary:

what they never knew they needed and in the case of disempowered patients, it's they never knew they needed to know their voice mattered or what that meant to them and how it can get done. I didn't realize. When I entered this world by accident, I was already seven years out of treatment. I didn't know what advocacy meant. You know traditional story I was alone, I was scared of my tests every year. I didn't have any friends. Many friends. I had friends. I had many friends. I had no real path or arc or purpose. I just had some degree of okay, I'm here now. I'm working in the advertising industry. I should have been a film composer. What do I do with my life?

Matthew Zachary:

And it wasn't until I learned at that time what cancer advocacy meant, which again back then was like we deserve to live was what advocacy meant. Just to dovetail for a second, there was a wonderful public health report that came out from, I think, the CDC or the NCI here in the States I'm going to botch the name. It was like Lost in Transition. I think that was it Lost in Transition.

Matthew Zachary:

Yes yes, yes, from Cancer Patient to Cancer Survivor, when they realized health, economics and anthropology and sociology, we're going to have so many people that don't die. What do we do with them? And that's a good problem to have, and that's what we fought for. Like, if we're not going to die as much anymore, as much anymore, what do you do with us? How do you make us productive citizens that still want to buy crap we don't need with money we don't have? That's really what my take on that was.

Matthew Zachary:

So what does it mean today? There's a version of that today, which is I need to be on the better medicines. I need to help companies make money off my survivorship because I deserve to live the way I want. So how I choose to survive is a more elegant way of saying I deserve to survive because it used to be. I would just want to live. Please save my life. But now it's please save my life so I can go to college, or so I can hug my grandkids, or so I can buy this or get a home, or we have the right to become functional consumers again when this gets in our way.

Bogda Koczwara:

So now, going back to that moment when you were an aspiring cancer advocate, not exactly knowing what that means, and now where you have a much better sense of the history of survivorship, what would your advice be to somebody who is finding themselves at that spot in their life just diagnosed, just finished cancer treatment, at the crossroads, trying to find themselves? Any words of advice?

Matthew Zachary:

Yeah. So again, compare and contrast. Back when I was asked how'd you like to be a cancer advocate, I was like what the hell's a cancer advocate? And the story there was you can make someone else's experience just suck a little less than you went through. It was like all right, done, count me in, that's great, whatever it means, I'm going to make cancer suck less for the next me. That's kind of what that meant back then. It was like welcome to the club. No one wants to join. I'm here to help you. No shit exists right that you didn't even think to ask for Today.

Matthew Zachary:

Fast forward, you know, matthew Zachary 2024, I've moved to a place now which is more along the lines of helping you learn how to game the system from a lifestyle perspective, how to not get screwed by your hospital billing system, how to fight a prior authorization issue that you deserve to have. Basically, how to consumer navigate the healthcare system with all the tricks and things that you know, like what they don't want you to know, right, for example, like I went through a prior authorization nonsense crap last year, and again I think your Aussie listeners will make fun of me because you may not have this same debauchery in your country. But here's what happened to me is my wife I'm under her plan, we got married, I'm under her plan, she's a full-time employee at a school. She's a speech therapist, part of a union and we've had decent coverage and they never questioned our prescriptions and we've been on the same medicines. Whatever we needed was never, always get the kids and whatever. And then all of a sudden last year her employer changed their policies so like 30,000 people had all new healthcare without being told. The company got sued by the union for not negotiating with them and we had to essentially start from scratch with all new doctors. So I'd been on a medication.

Matthew Zachary:

I'm on a proton pump inhibitor, which one of the few late effects I have is my GI system is all trained right from radiation. So I don't really have GERD from eating like crap. I just have GERD from my stomach not working no matter what I eat. And I don't really have GERD from eating like crap. I just have GERD from my stomach not working no matter what I eat. And I've been on this product called Dexilin which is made by Takeda, and I've been on it brand since it was FDA approved in 09. All of a sudden this new insurance company says, hey, you don't need that, why would you need something you've been on for 11 years? We're going to go back on over-the-counter Prilosec who cares?

Matthew Zachary:

So I had to go to war against CVS and Aetna and I didn't know how to do that.

Matthew Zachary:

So I had to talk to my friends on how do I clap back and force this to happen. It took a year A year and I'm buying this out of Canada that I had the privilege of being able to do, because I couldn't take Prilosec, or even they wouldn't even approve the generic, which doesn't work for me. Eventually, I learned that you can contact the pharmacists union in your state Again American story. You can call the state based pharmacists union Again American story. You can call the state-based pharmacist union, talk to them and say I'm getting screwed by my insurance company, and they will. Through friends that I've been trying to get in touch with for a year, I was approved to get back on the brand that I needed. Right, helping Americans know how to deal with that is as equally important as how to deal with the actual disease itself. That is where I'm at now, 20 years later itself. That is where I'm at now, 20 years later, and what advocacy means to me is protecting Americans from the utter disgusting behavior of the healthcare system upon them.

Bogda Koczwara:

What advice would you give health professionals of overcoming those challenges? What can I do as an oncologist?

Matthew Zachary:

Retire. Sorry, I had to. I had to. This to me is the great divide, which is it's too easy to throw blame at everything, and I'm a big fan of the bell curve theory, and I'm a big fan of the bell curve theory. You can't be angry at the median, because it's always the fringes that cause the most trouble and the most noise and get the most attention. And with that perspective, it's so easy to throw providers under the bus. It's so easy to say yeah, they have no empathy. And I'm a patient advocate that is also a provider advocate.

Matthew Zachary:

Pharmacists, doctors, nurses, social workers, oncologists, nps, pas these are human beings that are living under crushing professional circumstances, unlike they've never seen before in our country. And burnout and mental health we're all about mental health for this and this and this. How about being a doctor or a nurse or a oncologist Hard enough to watch kids die on a good day? When you're trying to be a good doctor, then having your crushing healthcare system make all these demands of you to see more patients in less time and meet quotas that's despicable. So there's a perspective on empathy that has to be mutual. We expect Hippocrates, in a sense, to kind of go both ways. I want to make sure that anyone treating me or my children, even if it's an orthopedist or a primary care doctor, to have a great life that they deserve to have with themselves, their friends, their family, their children, so they can be the best professionals and be present when they need to be channeling Hippocrates.

Matthew Zachary:

So my message to providers is you need a revolution, and I know it's even harder to stand up to health systems because they'll just fire you and fire robots. Harder to stand up to health systems because they'll just fire you and fire robots. But I think there's a long time coming that the provider universe and the unions and the associations start to mobilize and really start to stand up and do what patients did and force the system to acknowledge they exist. Here's a better way to make money if you treat us this way, as they exist. Here's a better way to make money if you treat us this way. I'm being a little utopian here, but my observation which is not my focus for 25 years is that providers have to start organizing better and clapping back against a system that is completely intentionally abusing them to make money, with little concern for what happens to you when you go home and try to sleep at three in the morning and are suicidal.

Bogda Koczwara:

What you're describing to me is that there is a potential for learning from each other and perhaps joining forces in such a way that providers and advocates are on the same side of the barricade because, effectively, they're hoping for the same things.

Matthew Zachary:

That's exactly it. The great unifier here is that fine patients had their revolutions and we're slowly improving, and progress is a thing that we have to have perspective on. But I'm not going to say this in a nice way, but I've yet to see and maybe there have been. I just haven't seen genuine protections, legal protections given to providers that shield them from endless crushing defeat and nursing shortages and medical school shortages and pharmacist shortages and people expatriating to concierge care or private practice, and this is systemic of something that shouldn't be a thing. So equity goes both ways, hypocrisy goes both ways If you can't take care of yourself, you can't take care of anybody. So we need to be empathetic towards our providers and not so cynical toward them, because I would like to believe and I do from a Bell Curve perspective they're all trying to do their best and oftentimes their best is being puppeteered by a system they hate being a part of. And I'll end there.

Bogda Koczwara:

So I'm going to take you back to the motto of stupid cancer. You already referred to the term making cancer suck less, but there's also another motto that I really liked, and that says get busy living. So for cancer advocates, for cancer healthcare providers, is this as simple as that. What you've just outlined is perhaps a little bit more complicated, isn't it?

Matthew Zachary:

Like any good brand slogan, it's self-interpreting. Just do it, nike, right? Yep? And that's the brilliance of a good brand is you allow everyone to interpret what they want out of it and love it or hate it. Right, just do it. I don't want to do pushups. I know I should Just do it. Fine, get Busy Living or Get Busy Dying was a line from the Shawshank Redemption, from Stephen King's book and the movie with Morgan Freeman and Tim Robbins, and I took a lot from that film. It's one of my top Mount Rushmore films. My top four films is Shawshank Redemption.

Matthew Zachary:

Get Busy Living or Get Busy Dying is a choice, and how do you embrace the chaos? How do you go through hell and keep going? How do you self-identify, whether it's faith or karma or materialism, whatever it is that you anchor yourself to, if you even have an anchor to it, you have no choice. There is no past, there is no future, there's only now. And, without getting too spiritual, it also comes down to your belief system in yourself, your role in your own life and the life of others, and I used to say the following everything in your life happens for a reason and you could choose to choose not to acknowledge what you have to do. But the choice is yours and it's always hard to make. But you have to own your choices and be the best you can be every step of the way.

Bogda Koczwara:

Choose or choose, not Get busy living.

Matthew Zachary:

Very Yoda.

Bogda Koczwara:

Very Yoda. I think that's a very good, very spiritual way to finish Cancer Survivorship podcast and really focus on what survivorship is all about, and that is living, and if that's the point that we get to, that's a very good place to be. So thank you very much, matthew Zachary. It's been a whirlwind tour of many years of cancer survivorship and many, many good slogans, good lessons.

Matthew Zachary:

Good slogans.

Bogda Koczwara:

Don't forget the revolution, and I think, as a healthcare provider, we're going to start thinking of how we could really throw in a revolution for the very same purpose. So thank you for speaking with me tonight, and chances are that we have to have another podcast where we're talking about key movies relating to cancer, survivorship. And those of you who haven't listened to the podcast yet, the final episode with your mom discussing the movies was probably my favorite.

Matthew Zachary:

Yeah, that was a special little bonus we threw in there.

Bogda Koczwara:

It was fantastic, so thank you very much for joining me.

Matthew Zachary:

Absolute pleasure.

Bogda Koczwara:

That is all for Supportive Care Matters, a podcast created by me, Bogda Kozlara, for researchers, clinicians, policymakers and patients passionate about improving the lives of people affected by cancer, Thanks to Mark Tai, who composed the original music, and the Oncology Network, our producers. For show notes, go to wwwoncologynewscomau. Subscribe to this podcast at your favorite podcast provider and rate us. It will help others find us.