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Health Equity, Patient Advocacy, and Podcasting
Episode 716

Matthew Zachary, Founder at Stupid Cancer and OffScrip Media

Health Equity, Patient Advocacy, and Podcasting

In this episode, we have the privilege of hosting Matthew Zachary, Founder and CEO at Stupid Cancer, and the founder of OffScrip Media.  Matthew shares the genesis of Offscrip Media and Stupid Cancer and how Offscrip is providing conversation at the granular level of human dignity. He talks about the vision of the company, how they hope to impact behavior change that can be measured clinically so it can become a covered benefit one day. He also talks about setbacks and challenges. Matthew is passionate about what he does, and he is loud and funny, so this is an episode you shouldn’t miss!

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Health Equity, Patient Advocacy, and Podcasting

Episode 716

About Matthew Zachary

10 years after surviving brain cancer at age 21, concert pianist and composer Matthew Zachery created the first health podcast, Stupid Cancer, the not for profit responsible for igniting a global movement, advocating for AYA adolescent young adult cancer programs and support that brought dignity in the face of health adversity. After stepping down as Stupid Cancer’s CEO in 2019, Matthew continues his legacy of building community, galvanizing the patient voice and blowing up the status quo with Offscrip media – the first digital health podcast network focused on advocacy, education, and empowerment.

Health Equity, Patient Advocacy, and Podcasting with Matthew Zachary, Founder and CEO at Stupid Cancer: Audio automatically transcribed by Sonix

Health Equity, Patient Advocacy, and Podcasting with Matthew Zachary, Founder and CEO at Stupid Cancer: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Saul Marquez:
Hey Outcomes Rocket listeners, Saul Marquez here. I get what a phenomenal asset a podcast could be for your business and also how frustrating it is to navigate editing and production, monetization and achieving the ROIC you’re looking for. Technical busywork shouldn’t stop you from getting your genius into the world, though. You should be able to build your brand easily with the professional podcast that gets attention, a patched up podcast could ruin your business. Let us do the technical busy work behind the scenes while you share your genius on the mic and take the industry stage. Visit smoothpodcasting.com to learn more. That’s smoothpodcasting.com to learn more.

Saul Marquez:
Welcome back to the podcast everyone, Saul Marquez here. Today, I have the privilege of hosting Matthew Zachary. 10 years after surviving brain cancer at age 21, concert pianist and composer Matthew Zachery created the first health podcast, Stupid Cancer, the not for profit responsible for igniting a global movement, advocating for AYA adolescent young adult cancer programs and support that brought dignity in the face of health adversity. After stepping down as Stupid Cancer’s CEO in 2019, Matthew continues his legacy of building community, galvanizing the patient voice and blowing up the status quo with Offscrip media – the first digital health podcast network focused on advocacy, education and empowerment. We’re going to have a great discussion with Matthew today and super privileged to have him here with us. So, Matthew, welcome.

Matthew Zachary:
We’ve got to get that boilerplate to less words. I’m so sorry you had to read all that.

Saul Marquez:
It’s very interesting things. And I mean, at the core of it, Matthe, kudos you survive brain cancer. Just I mean, right there, right? I mean, the first question that I ask all of our guests is why health care? What ignites your fire? Talk to us about that and just let us know more.

Matthew Zachary:
Well, I got drafted into it. You know, I always joke like no one wakes up and says, can’t wait to get brain cancer so I become an advocate one day. That was not what I was thinking at 20 years old college. I was studying to be a film composer. That was my who knows what the hell they want to do in the 19. I did. But I got derailed. My left hand stopped working as a early affect of not even knowing there was a tumor in my head. But I was diagnosed eventually. I did reclaim my left hand after five years, but I fell back on Plan B when I didn’t die, which was advertising, marketing and brand and creative. And I fixed Macintoshes in the 1990s. Any geeks out there that remember Mac OS7 join the club. That eventually led myself to find my first peer. We talked about like the need to not be alone and find someone that will judge you and talk about niche market. This guy’S name is Craig, he was also bald, Jewish from New York, went to my alma mater and was in the same a cappella group as me. And I’m like, where the hell were you? So that’s how I figured out. He said, like, how would you like to be a cancer advocate? And I said, What the hell’s a cancer advocate? So that was my trigger. I didn’t know at that point that it was possible for me to do anything besides just kind of trudge through my twenties, miserable, alone, depressed, infertile, impotent and scrawny and having no self-confidence. So that was the trigger that brought me down the huge rabbit hole for the last 18 years.

Saul Marquez:
Wow. Well, I’ll tell you what. What a great story. Obviously, you’re strong. You’ve made it through a lot. Many of us cannot understand what you’ve been through. And as a patient, going through the pain, gosh, it’s so important for us to have the right type of representation, the right type of team of a company, of a community, of an organization that understands. And so I love that you’ve gone through it, Matthew, and now you’re helping others. So talk to us a little bit about Off Script Media. What are you guys up to? How are you adding value to the ecosystem?

Matthew Zachary:
So just to predicate the preface is that I bring with me an understanding of what life was like before the Internet as a cancer patient and how we had to find our tribes and learn the hard way and work with others who were equally lost on building the infrastructure we have today that everyone should take for granted. Because why would you need to know that this thing was fought in 2002 in this bill passed? We’re here today. What our community does is off the heels of what I did, running and founding Stupid Cancer, largely as a traditional media broadcast arm for patient voices, because there wasn’t one. Yes, we were non-profit. Yes, we did programs and events and fundraising and all sorts of traditional nonprofit partnerships. But we were unique in the sense that I was the Howard Stern of cancer and got behind the mic every Monday live just for the cheap seats in the back millennial’s, Live meant you couldn’t listen to it if you missed it. So we had harnessed an opportunity that is replicable to run the Stupid Cancer show for five hundred episodes across fourteen years and forty million downloads. And it was really a phenomenon. And when I left Stupid Cancer for many, many reasons, which I did read about on LinkedIn, is I missed being behind a mic, I missed being a voice. And I didn’t just want to start a podcast because that’s what everyone does. Really was more along the lines of how can we look at, I would say the loss of traditional media in the noise of social media on how can people find access to voices and not videos or websites, and I’m not as competition to them, but as augment to the media’s brainchild DNA is essentially patient advocacy to hear voices of people to to feel not alone, to learn to have behavior change, to educate based on information you didn’t ever expect to have to listen to. That’s the antithetical no market approach to what we stand for. And it’s so contrapuntal to the way business is start-Up.

Saul Marquez:
I think that’s cool, man. I think that’s really cool and necessary. And I think the one thing and I want to hear this from you, but just getting to know you here right before the podcast that we’re recording, folks, we had a really great chat. Matthew seems to keep things very straightforward. We don’t beat around the bush. And a lot of times that’s what we need, you know, as if you’re somebody dealing with the chronic illness, a challenging disease. And so talk to us about what you believe Matthew makes Offscrip…

Matthew Zachary:
No t, damn it.

Saul Marquez:
Offscrip unique and different and valuable.

Matthew Zachary:
What we’re driven by the rage of angry patients and not by serial entrepreneurs looking to exit to Amazon in seven years. Nothing against those folks. I’m all for capitalism. But the idea of purpose driven media doesn’t really exist, at least from my crow’s nest, because you shouldn’t have to be a cancer survivor who happened to run a non-profit to have perspective on private sector business launches. I happened to be one. There are a few of me in this country and we all follow this creed of, yeah, we can do well and do good, but what does it actually mean? So at the core of this media company is the philosophy that the entire health care system isn’t broken. It’s designed not to work on behalf of consumers by intent. So which is again, if this is capitalism and the free market or whatever the regulations are, the point is that when you get sick, when something bad happens to you, that you were not expecting, whether it’s cancer, rare disease, a car accident or suicide in the family, whatever it is, you went to a shopping mall that you’ve never been in before. You have no directories, you have no guidance. Abe Simpson is not there with this Wal-Mart Blazer welcoming you into the store. There’s no greeter. So at the end of the day, who protects you to make sure you are guaranteed the liberty of choice and access that’s best for you? It’s as fundamental as that. So with that in mind, this isn’t about serving content we hope you can listen to. This isn’t splattering the wall and hoping a million people go to our landing page. This is about helping that one woman who has sarcoma and has to factor in infertility versus versus a limb resection. And what’s valuable to her. It’s that conversation at the granular level of human dignity that is the mission behind this entire business.

Saul Marquez:
That’s phenomenal. And this is the type of stuff that we need more of. Matthew, we we need more real and more raw, because that’s that’s what we find ourselves in when we get into these these circumstances, that mall that you’ve never been to, as you call it. And so talk to us about how you guys are making a difference, maybe an example of how somebody that found your content was able to make a better decision as a result.

Matthew Zachary:
Well, what’s interesting is we’re a year old. This was crafted before we knew what coronavirus was and we had all these wonderful intentions of a launch and all campaign. And that got shot to shit because of everything that happened in 2020. So we had to pivot. And I hate that word. But the irony of like the loudmouth cancer advocate getting behind the mic during a pandemic when cancer patients had no idea what the hell the doing thing, and no one governmental institution or non-profit rose to the occasion, I was able to be a kind of voice of reason and collaborate with the groups that I worked with for the past 15, 16 years. And you don’t find out what Coronavirus what the hell it was. And then I got COVID myself and I was just another story about whatever, whatever. So it changed the way in which we were able to understand the power of voice when shit happens. So it moved forward. This one thing we were going to do last year, which we’re doing now in terms of how do we actually help, how are we just not a nice to have and we’re launching a ACRO a clinical research organization thinktank as part of our growth and expansion for this year to create the first audio intervention studies on the value of presenting patients with something to listen to besides maybe watch or read, and if that can convert their behavior to reduce stress, reducing all the things that we want to have patients experience as an intervention. Here’s the show you didn’t know you needed to listen to. We’re sorry you have to listen to it, but hopefully by listening to it will happen and can be measured clinically, academically to become a covered benefit one day like music therapy or or transcendental meditation. That’s the big idea is let’s just not be a nice to have fun, entertaining cancer show or rare disease show or health policy show. Is it possible and just suppose that just by listening will be just the same as just by watching this behavior changes has cost, benefits, health, economic gains, productivity gains, economic, all the all the stuff that we want to see happen by 2022..

Saul Marquez:
Yeah. I think that’s, that’s fantastic Mathew. And we’re starting to see more of it. You think four or five years ago was non-existent, but today I feel like CMS has made some moves to start recognizing some of these outside of the box therapies like music, like audio, like, you know, just the lifestyle as a therapeutic. There’s CPT codes for the stuff now and it’s phenomenal. So the time is right. And as we think about how we can use the arts to cure ourselves, I’m excited by it. And to think that you and your team are going to create the content to make that happen is exciting. However, all of this stuff doesn’t happen easily. I’m sure you’ve run into setbacks. Let’s talk about some of those and maybe one or two that you feel have been very defining and that you’ve learned a ton from.

Matthew Zachary:
Well, when you identify a whitespace, it’s fucking scary people. What? Really? How? I don’t understand. I guess I have a sense of reputation and recognition that I’m trustworthy enough to invest or I mean, we’re not dumb investors, but to commercially to build a commercialization strategy around an idea not akin to Bill Gates selling dos to Xerox with no code ever written in 1977. But the premise is basically there I was able to demonstrate a super cancer that the power of voice, which just to dovetail this is really just radio, it’s radio on demand, but that’s all podcasts are and it’s about voice talent as much as it is the message being conveyed by the voice talent. Anyone can get by on a mic, anyone could be theatrical. But to combine those in a way that is data driven is very unique. And that was the the the assumptions that I were making to my partners and my commercial friends and all the network folks that I know in the bio zero universe. This is a just suppose. It’s a think tank. It’s a membership based think tank to prove a concept. So the snag was really like, what? That can’t be a thing? Like how has it not been a thing and why can’t it be a thing? Let’s see if it’s a thing.

Matthew Zachary:
So obviously, the other struggle, of course, is like where a company building an entire seven figure startup strategy in a pandemic with limitations and we hate Zoome, we have to use Zoome. We have to hire people a resume. Just the general nature of building a company during a pandemic itself has been nothing but hurdle after hurdle. Learning how other people have been doing that has been very helpful. Going to LinkedIn, reading even Clubhouse now has these groups talking about how the hell are you doing this during the pandemic? I think the advantage we have is that this is all digital. We’re not doing in real life. This is content. People are now embracing audio more than ever because they’re bored as shit. We’re sick and tired of video, so I’m very long as it is short question, like nothing’s really easy. But if you genuinely believe what you’re trying to do is radically a radical departure from anything else that’s out there, enough people will believe in you to get it started.

Saul Marquez:
Well said, Matthew. And obviously in our space, there’s the importance of having that. You’ve got to follow the money, sadly, but true. So you’re aware of how to operationalize and and how this thing could get adapted and how the players get paid. That’s how you get the the benefits to the patients. And I love that you’re honed in on that. It’s critical as you think about what you’re most excited about today. Matthew, what would you say that is?

Matthew Zachary:
Well, there’s two things. One is a passion project that I finally get to do was kind of like a throwaway fun thing, which is I’m now a podcast documentarian. We are producing sort of my semi autobiographical documentary series called Cancer Rebels, which tells the fifty year history of specific advocates that got shit done that you never heard of, basically. How I led the open conversation, no one needs to know the sausage was made in 1998, but there was some sausage made in 1998 and it’s worth telling that story. In seventy one that was the war on cancer by Nixon. This coming December as of this taping in January 2021 is the fiftieth anniversary of that. So I’m telling that story of how we got from seventy one to the word survivorship to psychosocial research to the Breast Cancer Act up know blood on the fur movement that got everything really moving to the Livestrong days to pre Internet, social media and community aggregation to the government, embracing the fact that people aren’t dying anymore to genomics, to choice, to access to health equity. It’s been such a phenomenal storyboarded progression that’s ever been told. So that’s one thing that’s coming out at ASCO Virtual ASCO.

Saul Marquez:
When is that coming out?

Matthew Zachary:
June this year.

Matthew Zachary:
All right, man, keep us posted. In fact, when you’re done with it or at least launch it, come back on, tell us about it, because, yeah, I’d love to share that with everyone listening. I’m sure you’re thinking. Yeah, that would be a great series.

Matthew Zachary:
Well, it’s going to be a big, about ten episodes working with the CDC, the NIH, all the Beltway. I love it. It’s exciting. So that’s my sort of pet project for the year. But what I’m most excited about genuinely is to prove through evidence based, outcome driven, whatever the clinical trial of an audio podcast is, that it is possible to create a covert audio as a covered benefit to improve patient outcomes, get them enrolled in a trial, reduce the stress, make them more aggressive, give them more to talk to the doctor, keep them on their prescriptions where there is a way to do that, especially in the the black community, the Inuit community, the Asian-American community. And in addition to that, just speaking to all the commercial officers and the CEOs that are listening to the show, all the amazing genius stuff that you’re doing to bring to market is irrelevant. If a human doesn’t know it exists and they’re at the mercy of whether a doctor is incentivized or not can follow or not, a prescriber is only limited to what they can possibly do to guarantee that patient knows your amazing diagnostic exists to prevent esophageal cancer or get this screening. We’re out of space now, which is good to have. You don’t just kind of die anymore. Good problem to have. But how do you live now with choice? That is what I’m most excited to bring to market. We can quantify some kind of righteous guarantee that that poor schmuck in the mall you don’t want to shop and is made aware of things that help make their life better, that can profit the industry.

Saul Marquez:
Yeah, I love it, Matthew. And the mission is fantastic. And coming from where you’ve come and the experience that you’ve had, you’re amazing for doing this. So I appreciate you sharing it with us today. I guess, as we start to wrap up our conversation, Matthew, where can people learn more? How can people engage? What should they do to share? And so tell us how to do all that and give us a closing thought.

Matthew Zachary:
Well, I invite first of all, your listeners, to subscribe to my podcast, which is called Out of Patience, which is just so perfectly tongue in cheek, so demoralising. I’m looking for great guests. I’d love to have you on my show. I think there’s there’s a fabulous appetite for this going forward. I’m excited to see my audience scaling. And we have a bunch of other shows on our network. We’re kind of a gimlet model where we’re producing a network of other shows on Canibus, the National Organization for Disorder’s, which is very appetizing to the genomics community. We launched this show called Nord Pod, which is available to do podcasts. Brave New Weed is our cannabis lifestyle show. We have a really funny Laurel and Hardy type of show with two cardiologists called Am I Dying? It’s about hypochondria meets car talk. It’s hysterical. They’re just like too damn funny for themselves. And we’re onboarding some other talent to create more, more stuff. So check out Offscrip.com. Out of patience. I’m the only Matthew Zakari somehow on podcast. So just find my name and I’m there. But yeah, I welcome feedback input. Tweet me at Matthew Zachery or @OffScrip. We’re growing. It’s exciting. We want to do great things with great companies.

Saul Marquez:
Well, Matthew, thank you. And everyone will provide links to Matthew’s podcast Out of Patience links to off script inside of the show notes. So go to Outcomes Rocket.Health. And in the search bar, everybody knows we got a new awesome search bar. You could find anything you want. It’s so good. Type Offscrip, no t Offscrip. And you’re going to find all of those links there. Make sure you listen, make sure you share, because the work Matthew and his team are up to is is so important and it’s going to make a difference. So, Matthew, thanks again for coming on here and sharing your passion and mission with us. We really appreciate it.

Matthew Zachary:
Thank you, Saul. It’s a pleasure.

Saul Marquez:
Hey, everyone. Saul Marquez here. Have you launched your podcast already and discovered what a pain it can be to keep up with editing, production, show notes, transcripts and operations? What if you could turn over the. Keys to your podcast busywork while you do the fun stuff like expanding your network and taking the industry stage, let us edit your first episode for free so you can experience the freedom. Visit smoothpodcasting.com to learn more. That’s smoothpodcasting.com to learn more.

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Things You’ll Learn

  • If you genuinely believe what you’re trying to do is a radical departure from anything else that’s out there, enough people will believe in you to get it started. 
  • Help people be more aware of things that make their life better. 

Resources

Website: https://stupidcancer.org/, https://offscrip.com/

Twitter : @MatthewZachary, @OffScrip

https://podcasts.apple.com/us/podcast/out-of-patients-with-matthew-zachary/id1482032829

https://podcasts.apple.com/us/podcast/nordpod/id1511001441

https://podcasts.apple.com/us/podcast/brave-new-weed/id1228461096

https://podcasts.apple.com/us/podcast/am-i-dying/id1522545775?i=1000483217136