Matthew Zachary, a 25-year cancer survivor and founder of Stupid Cancer, didn’t always know what it meant to be a cancer advocate, or the complex and rich history behind the term.
He’s hoping to shine a light on the robust history of the survivorship movement through a docu-series podcast, “The Cancer Mavericks: A History of Survivorship,” which explores cancer activism from the 1930s onward.
“This is all being done in the lens of a pseudo semi-autobiographical way, where I’m kind of reacting to history, and observing history, and forecasting the future,” Zachary, who narrates the podcast, said to The Cancer Letter. “What advocacy meant in the sixties is very different from what it means today, and will be very different from what it will mean 10 years from now.”
Zachary focuses on the Bernie Fishers of the world, doctors who changed the face of medicine despite putting their reputations at risk and facing backlash.
“I think it just takes a specific kind of person, who either has the gumption out of the gate, or is pissed off just enough to realize that they can do something so radical, so counterintuitive, as to believe it’s possible to change something that is just seemingly immovable in that space,” he said. “Whether it is one doctor saying ‘I’m changing medicine, I don’t want to do this anymore, we need to reinvent the way we think about oncology writ large for the next hundred years,’ and end up chastised and reputationally lambasted for their radical thinking that people should be treated like people.”
Episodes will be released monthly through the end of December 2021 to commemorate the 50th anniversary of the signing of the National Cancer Act of 1971.
Zachary spoke with Alexandria Carolan, a reporter with The Cancer Letter.
Matthew Zachary: I’m a 25 year cancer survivor and was given six months to live when I was 21 in 1995, wandering the earth, not knowing what the hell was going to happen to me.
I happened to find a peer in the middle of nowhere, who was another young adult brain cancer guy who happened to be on the board of the National Coalition for Cancer Survivorship—and I got thrown into the deep end of the pool pretty quickly in 2002—only to be asked, would you like to be a cancer advocate? To which I responded, what even is a cancer advocate?
He said, “That’s what I said when I was asked if I wanted to be a cancer advocate.”
Then I got into the nonprofit game, I quit my career in advertising and marketing, and spent 14 years running Stupid Cancer that I created from scratch because I was really pissed, and I met so many people along the way.
I learned all this rich history. These people have been doing this since the eighties and the nineties. I think, when I left the organization, I was like “well, how did we get to then? Surely things happened before the eighties to get to where we are.”
I looked at Emperor of All Maladies by Siddhartha Mukherjee, and it was great, but it’s jargony and it’s sciency, and it’s nerdy and it’s academic. No offense to sid, it’s a great piece. But it flew over the heads of anyone. And I was like, why has no one told the story of these unsung people that even—I didn’t know—who the hell they were—let alone people I thought knew who they were, who didn’t know who they were.
In my spare time, I realized that Offscrip Media had the capability of producing its first long form audio series, a history series. What the hell happened between 1971, when the National Cancer Act passed, to now 50 years later. Does anyone have any idea the shit that people had to go through to get us from then to now, and how much easier it is today than it used to be by comparison, even though we think shit’s really hard today.
That’s where it all started from. I was really upset that no one told this story. I thought, well, if no one is going to tell it, I am. And there you go. That’s where a spark was lit to begin the quest of storyboarding and figuring out how the hell me, a non-documentary person, produces a documentary.
MZ: It’s an eight part series, so it’s sort of chronological for the first couple of episodes. You really do have to go back to the thirties and the forties and the fifties, and really get some context on what that word cancer even meant to society and culture—let alone medicine, for years and years.
We kind of pick up in the mid-to-late sixties, when people just started to realize this is not okay. The sixties were turbulent enough as is, let alone this massive uprising of society, on how—you’ll have to listen to the episodes to get all the data that our production team put together, and the clips they pulled on how media, radio, television, for that matter, talked about cancer. It was insane to know that this was actually a little narrative in America in that decade.
They had, as we say, the chutzpah, the moxie, the wherewithal, the balls people had to question the government, to question medicine. These were just civilians, regular voting American citizens that got really pissed, along with everyone else that decade. Episode one picks up where a small group of committed citizens decided to change the world. They got the national cancer act passed in ‘71. That’s how we start the series.
MZ: This is all being done in the lens of a pseudo semi-autobiographical way, where I’m kind of reacting to history, and observing history, and forecasting the future. What advocacy meant in the sixties is very different from what it means today, and will be very different from what it will mean 10 years from now.
What we had to fight for in the sixties, what our parents and our grandparents had to fight for, was just the right to live. Just to be acknowledged that this is not OK. How about some government money? How about the National Cancer Institute? How about there being all these systems that should just exist in the first place?
That’s what advocacy meant in the sixties. In the seventies, it was like, can we just stop dying, please? I’m glad there are some kinds of systems that are thinking about this, but we’d really like to stop dying. The eighties were like: Can we possibly live? And if we do, what the hell does that mean? Who should we be? Where do we go? What do we do? The nineties were like, fuck all of that. We’re equally pissed more than ever before.
We need more money, we need more funding, we’re going to march on the government, we’re going to demand things.
We’re doing die-ins and sit-ins at pharma conferences. We lost our shit, like a network, mad as hell. In the 2000s we were like: Are we living now? Is this a thing? What does that mean? And diversity started to matter.
It became this more diverse approach to citizenship and liberties, which moved us towards the genomic age, where it’s not about getting napalm, your genes determine whether you live or die, which is also contingent on whether you are rich or poor. It really is an extraordinary arc across these eight episodes that are debuting Q3, Q4, 2021.
MZ: I want to qualify, there’s an army of people behind me. We hired award-winning producers from NPR, and PBS, and CBS, and Slate, and they did all of this extraordinary reconnaissance—going through archives, listening to news clips, pulling information from TV and radio from 30, 40, 50 years ago.
I can’t really get into the granularity of your question—you have to listen to the series. All of that is articulated in the episode descriptions that you can find on Apple Podcasts and Spotify. When I first presented the team with the storyboard, there were 300 or 400 people that I storyboarded. We had to whittle down this Sequoia tree into a toothpick. Essentially, what does it mean to be a Cancer Maverick?
What qualifies? What does that stand for? Who’s the listener? What do we want that person to hear and do and think across eight episodes? Whether it’s the doctor who invented cancer navigation, the people who took a risk and drove to Albuquerque in the middle of nowhere in 1986 to start this national movement of survivorship and invent the word survivor, or women who fought to fundamentally change the role toxic masculinity played in breast surgery.
Whether it was people who just rose up and said, you call me a victim again, I’m going to punch a kitten. You have to look at the specific ways in which unique heroes just pick their poison and jump into the lake to swim and change everything.
MZ: The series has shown me what I think we already know to be true, especially in this highly tumultuous society we live in today, that the loudest people get the most attention. But when you’re willing to do it for good, it matters more.
I think it just takes a specific kind of person, who either has the gumption out of the gate, or is pissed off just enough to realize that they can do something so radical, so counterintuitive, as to believe it’s possible to change something that is just seemingly immovable in that space. Whether it is one doctor saying “I’m changing medicine, I don’t want to do this anymore, we need to reinvent the way we think about oncology writ large for the next hundred years,” and end up chastised and reputationally lambasted for their radical thinking that people should be treated like people.
What a concept for women to rise up and say “Screw you, men; women will determine what’s best for us in breast cancer.” And they made that change. Or the black Panthers, who took an active role in breast cancer screenings. Who knew this? That’s maverick, that’s crazy shit, that’s just saying, I’m sick and tired of this crap. I’m going to rise up like anyone else who’s done that in the past and currently, to demand social justice.
MZ: Yes it has. I would say the boat wake of the efforts of these, again, unsung American heroes you’ve never heard of, makes so much sense because this all came down to human rights.
I’ve found that it was such an unexpected communing of all races, Indian Americans, Native Americans, African Americans, Hispanic Americans, Caucasian Americans, they all got together just to demand that we have the right to live. We have the right to not die from cancer and the government should do something.
Fast forward to the 2000s and these breakthrough drugs and these medications that make you not throw up and have better white cells and take care of your quality of life—we wound up living better with cancer, increasing survival rates, reducing mortality, creating better screenings to detect them earlier.
That’s a good problem to have, because now we can worry about your mental health, and your fertility, and your employment issues, and your financial issues, and your survivorship late effect issues. We didn’t even know those things would be a glimmer of something to worry about when we were just dying of cancer.
Here we are in the 2020s with precision medicine and genomics and biomarkers, where it’s not even about where in your body that cancer is, it’s what your genes are. We’re again in this health equity conversation of rich versus poor, where the haves have, and the have nots have not. Who has access to a genetic test, or a screening, or some kind of diagnostic, where you don’t have to have cancer, you can detect it earlier and it’s cheaper and it’s easier and you live. What if you’re poor? You die.
Here we are, 50 years later, and the institutional racism of this country rears its ugly head in medicine even more now that people aren’t dying as much. On top of the pandemic and on top of all the other absolutely necessary uprisings in the chaos of modern day justice.
MZ: Not everyone knows what advocacy means, but everyone knows what justice should mean. In any context, it’s not a competition. And the only thing that’s ever changed anything is the American citizen willing to stand up to bullshit.
MZ: History is a teacher, and this is a story that’s never been told before. As word spreads, as people listen to the series, as people learn from these predecessors we never even knew we had, the future has yet to be written about what society is going to do by gaining this basic understanding of how far we’ve come with perspective to the issues we have today.
I would like to believe that the 2020s will begin a brand new era of advocate. Now that everything is genomic, this is not about cancer. This is about disease. This is about just living your life with the dignity you’re entitled to. You shouldn’t go broke from this shit, and you have the civil liberty to pursuit of happiness.
Shouldn’t someone be protecting the American citizen who happens to enter the “shit happens store” of cancer, or rare and chronic disease? Who’s making sure that you get to live your best life? Odds are we’re going to be living better lives—but now how do we build the equity up?
Not just the equality, but the equity, where everyone is entitled to the choices that they didn’t even know they had, to make decisions that are best for them, to live the life they need, want, and deserve.
MZ: No one’s ever been able to say “know your history” for cancer. You can go back to Emperor of All Maladies, there’ve been many books about the biology of cancer, the medical advancements in terms of gene codes and mammograms and whatnot.
These are about people. Stories matter, and these stories have never been told. Hearing that there were people who got this done is so important to gain that perspective.
I’m really hoping that we start to see an upsurge of the next generation of health advocates, patient advocates, and consumer health warriors who are going to equally demand better of a system that typically doesn’t give a shit about you, because all they care about is profit.
Until such time, as it’s profitable to guarantee this to patients, we have to fight.
