Latest / Get Real with Jim Weiss / Matthew Zachary, Host of Out Of Patients & Cancer Survivor

Transcript

Matthew Zachary, Host of Out Of Patients & Cancer Survivor · Get Real with Jim Weiss

0:00
Speaker 1: Hey, everyone, great to see you. Welcome to Get Real.
0:03
Speaker 1: I'm Jim Weiss, and in this episode, I'm speaking with
0:06
Speaker 1: Matthew Zachary. He's a three decade survivor of brain cancer,
0:10
Speaker 1: pretty remarkable hockey, the founder of Stupid Cancer, and the
0:14
Speaker 1: host of Out of Patients, one of the longest running
0:16
Speaker 1: healthcare podcasts, which I have one day hope to emulate.
0:20
Speaker 1: Today we're sharing our visions for consumer driven oncology, the
0:24
Speaker 1: potential of at home pre cancer detection tests, and much more.
0:29
Speaker 1: My man Matt is on a mission to transform how
0:32
Speaker 1: we talk about and treat cancer. I'm right there with him.
0:36
Speaker 1: Welcome Matt. Matt. You know you have a great mission
0:40
Speaker 1: to galvanize conversations about cancer and to normalize what is
0:46
Speaker 1: one of the more pervasive situations we've seen. There was
0:51
Speaker 1: something that my wife, I guess you know. My wife
0:53
Speaker 1: passed away from cancer New Year's Eve. One of the
0:56
Speaker 1: things she said, through the long journey that we were on,
1:00
Speaker 1: not that long in retrospect, but long enough, that cancer
1:04
Speaker 1: is a gift wrapped in barbed wire. That was something
1:07
Speaker 1: that she often quoted. I know what that means to me,
1:11
Speaker 1: but I'd love to hear how that resonates with you
1:14
Speaker 1: and in your work.
1:15
Speaker 2: I've heard it described also as the gift I wouldn't
1:17
Speaker 2: give anyone. But first, let me just say my condolences.
1:22
Speaker 2: There's no there's never a good homework hard for when
1:26
Speaker 2: this no hEDS on you. Her loss is tragic and
1:31
Speaker 2: reverberated in all the meaningful ways that it could.
1:34
Speaker 1: Yeah, I agree with that. That's the point of cancer
1:37
Speaker 1: being wrapped. It's not a gift that you wouldn't give.
1:40
Speaker 1: It's really you know, it is one wrapped in barbed wire.
1:44
Speaker 1: But I will say she became a different person after
1:47
Speaker 1: she had it, you know. And I think this is
1:49
Speaker 1: something you might relate to having survived it. But I
1:52
Speaker 1: think she saw things completely differently pre cancer post cancer
1:57
Speaker 1: in terms of and I've seen it with a lot
1:59
Speaker 1: of people, but in terms of her empathy and level
2:04
Speaker 1: of engagement and wanting to give back and participate. Things
2:09
Speaker 1: she didn't hear before she'd now heard things she didn't
2:12
Speaker 1: do before she would do. It was a very different person, yep,
2:17
Speaker 1: which actually makes it all harder leaving, because she was
2:20
Speaker 1: getting she was a better even a better person than
2:23
Speaker 1: she was even before. She was awesome before. But you
2:26
Speaker 1: were diagnosed with terminal brain cancer and adolescents. It's kind
2:30
Speaker 1: of unbelievable sitting here. You've survived. How did that change
2:34
Speaker 1: your path and outlook on life? Tell us a little
2:36
Speaker 1: bit about what was your pre impost experience.
2:41
Speaker 2: Sure, well, everything in context. This was thirty years ago,
2:44
Speaker 2: So everything I talk about is I was diagnosed over
2:47
Speaker 2: an answering machine first and foremost.
2:49
Speaker 1: Yeah, wow, that's a true story. Yeah that sounds right. Yep,
2:54
Speaker 1: pretty much given my experiences.
2:56
Speaker 2: Yeah, I was an aspiring musician, concert pianist, film composer,
3:00
Speaker 2: supposed to go to USC for film school, got early admissions.
3:04
Speaker 2: The summer before my senior year at Binghamton, my left
3:08
Speaker 2: hand stopped arpeggiating, and I thought that was very strange.
3:12
Speaker 2: But I was stupid and twenty one, so I just
3:14
Speaker 2: kept I did the amidaeus where I just switched my
3:17
Speaker 2: hands and no one knew. Then I got some headaches
3:19
Speaker 2: and I got weird, and you know, it wasn't taken seriously.
3:23
Speaker 2: And finally, toward the end of the fall semester, I
3:26
Speaker 2: had a seizure and peripheral vision. My eyes kind of
3:30
Speaker 2: went old. Morty felt in on me. Then maybe something's
3:34
Speaker 2: really wrong with this kid. And I had an MRI
3:35
Speaker 2: and they found this massive thing in my skull. So
3:38
Speaker 2: practically my life changed because I couldn't pursue my dreams.
3:42
Speaker 2: Ten years of training in jazz, classical film studies, ethnic musicology, composition,
3:49
Speaker 2: We're gone out the window and Plan B became Plan
3:52
Speaker 2: A when I just so happened to live and not
3:55
Speaker 2: die define their sort of statistical prognostications. I got a
4:00
Speaker 2: job at Harrison and Starr as an IT directors. But
4:04
Speaker 2: I was able to rebuild my life. But I didn't
4:07
Speaker 2: really have a purpose yet. I was just really callous
4:10
Speaker 2: and apathetic. But that's just how we treated cancer thirty
4:14
Speaker 2: years ago.
4:15
Speaker 1: I mean, do you know why you survived? Do you
4:17
Speaker 1: have any real idea? Do you ever think about it?
4:21
Speaker 2: So there's a book in the eighties by doctor Bernie
4:25
Speaker 2: Siel called Love, Medicine and Miracles. Nice Hamish Kite oncology
4:31
Speaker 2: surgeon kind of lambasted for believing that there's more to
4:36
Speaker 2: life than allopathic medicine to help the body. Ahead of
4:40
Speaker 2: his time, but gave birth to Tony Robbins and Andrew wyl
4:43
Speaker 2: and Wayne Dyer and all these incredible luminaries that we
4:46
Speaker 2: look at now for a spiritual understanding of mine body,
4:50
Speaker 2: and I think that's how it is. Love, medicine, miracles.
4:53
Speaker 2: I just got fucking lucky, Okay.
4:55
Speaker 1: I mean good to know it's sometimes better to be
4:58
Speaker 1: lucky than anything. We'd often don't don't talk about the
5:01
Speaker 1: importance of luck. In even the drug development business or
5:05
Speaker 1: all the things we do. Luck plays some role, and
5:08
Speaker 1: you know you got to be capable and meet that
5:12
Speaker 1: moment of luck to fully take advantage of it. I'm
5:15
Speaker 1: going to bring it back to where we started. You're
5:18
Speaker 1: a recorded musical artist, which is cool. Yeah. What are
5:21
Speaker 1: your thoughts about music as a healing force. I know
5:24
Speaker 1: it's been for me during my wife's journey. I'm lucky
5:28
Speaker 1: to be in Marin County and there's always a dead
5:32
Speaker 1: Cover band playing. In fact, the dead Cover band Seat
5:35
Speaker 1: you're Bob Weir and Phil Lash, who's now passed from
5:38
Speaker 1: cancer himself. I'm going Monday nights see Stu Allen at
5:42
Speaker 1: a local venue. I find it so truly healing. What
5:46
Speaker 1: do you think about music in all of this?
5:49
Speaker 2: Well, As a musician, I had sort of like unique
5:52
Speaker 2: inside understanding of what it meant to me before I
5:55
Speaker 2: was sick, and how that changed after I was sick
5:59
Speaker 2: was what it meant to me almost spiritually. And I
6:05
Speaker 2: was unable to play for about six months after my surgery,
6:11
Speaker 2: having played every single day of my life since I
6:13
Speaker 2: was twelve years old. And it changed the way I
6:15
Speaker 2: think about creating music, thinking about music resident frequencies and
6:19
Speaker 2: cluster chords and compositional style and influences. But then it
6:23
Speaker 2: came down to what was I going to listen to
6:26
Speaker 2: that spoke to me as a person, And I recently
6:29
Speaker 2: had a one would say overdue, but I would say
6:31
Speaker 2: at the right amount of time of spiritual awakening. And
6:33
Speaker 2: I've re embraced hermetic principles and harmonics and frequencies and
6:37
Speaker 2: vibrations and sound, and I have a tuny forks that
6:40
Speaker 2: I just listen to and harmonize against. And I think
6:44
Speaker 2: the power of music is end of one. People decide
6:46
Speaker 2: what's important to them. There are certain songs I can't
6:49
Speaker 2: listen to anymore. But there are certain songs I can't
6:51
Speaker 2: not listen to ever again. And I'm still writing music
6:54
Speaker 2: and I still have songs on my head, and I
6:56
Speaker 2: one day have an aspiration to make my famous third
6:59
Speaker 2: album that's been waiting since nineteen ninety nine. But art
7:03
Speaker 2: art is you just call it the artist survivorship, which
7:06
Speaker 2: is how you choose to get busy living and what
7:08
Speaker 2: that means to you personally. And it's not a choice.
7:12
Speaker 2: It's forced upon you to rethink what life means. It
7:16
Speaker 2: accelerates you in a way you weren't expecting, especially when
7:19
Speaker 2: you're younger. Having the mindset of an eighty year old
7:22
Speaker 2: when you're twenty two is conflict of interest. Mortality should
7:26
Speaker 2: not be in your mind's eye. You should be jumping
7:28
Speaker 2: off fences doing stupid things when you're twenty one years old.
7:31
Speaker 2: But music and art and creativity and therapy are the
7:34
Speaker 2: cornerstones of humanity and it's what defines our civilization and
7:38
Speaker 2: our species across all the time. That's not a direct
7:41
Speaker 2: answer to your question. But for me, I live and
7:43
Speaker 2: breathe creativity all day, every day, and I hear songs
7:46
Speaker 2: on my head every day, and I use that perfect
7:48
Speaker 2: question that I read a little bitch, and it kills me.
7:50
Speaker 2: But I could perseverate on various different songs and what
7:54
Speaker 2: it means to me and write music in my head
7:55
Speaker 2: every single day. Cursory of my daily experience and my
8:00
Speaker 2: term trauma. I didn't find my purpose until I met
8:04
Speaker 2: my first peer. And this is an interesting story. Also
8:07
Speaker 2: in nineties story because I was hit up over a
8:10
Speaker 2: Columbia list serve listeners people listeners by a gentleman named
8:15
Speaker 2: Craig Lustig who had heard me play piano. Because I
8:19
Speaker 2: had rehabbed a little bit but I couldn't go to
8:22
Speaker 2: grad school. I heard me give a concert from the
8:24
Speaker 2: American Cancer Society here in New York at a Relay
8:27
Speaker 2: for Life event in like two thousand and two thousand
8:30
Speaker 2: and one. Reached out and said, my name is Craig,
8:33
Speaker 2: I'm a fellow cancer survivor, and I'd love to know you.
8:37
Speaker 2: Little did I realize that Craig Lustig was on the
8:40
Speaker 2: board of directors of a very well established, highly influential
8:44
Speaker 2: Beltway group called the National Coalition for Cancer Survivorship, the
8:49
Speaker 2: oldest survivor led group in the country, started in eighty six.
8:53
Speaker 1: By Alan Stovlle by Allan Stoval, who then became my
8:56
Speaker 1: other mentor, who was my babysitter when I was growing up.
9:00
Speaker 2: Oh my god, yes, I'm telling you We're like brothers
9:03
Speaker 2: from another mother. At this point, now Ellen became my mentor.
9:08
Speaker 2: Craig was we're talking about peer to peer. Just for
9:12
Speaker 2: the sake of how ironic this was, he toicked like
9:16
Speaker 2: seven boxes on our first date. He was bald, in
9:21
Speaker 2: his twenties, Jewish from New York with brain cancer. He
9:25
Speaker 2: went to Binghamton and was in my a capella group
9:27
Speaker 2: and in an So upon that moment, I found purpose
9:32
Speaker 2: and I joined the Volunteer Advisory Group for NCCS. I
9:37
Speaker 2: got introduced to this. Everything went technicolor like in the
9:41
Speaker 2: Worzard of Oz, and I'm like, where have all of
9:43
Speaker 2: you people been for seven years? And that was how
9:47
Speaker 2: I started to sort of extradite myself from the agency
9:51
Speaker 2: world and fell into Livestrong's Heyday, fell in love with
9:56
Speaker 2: the brand, fell in love with the mission, found a home,
10:00
Speaker 2: give myself permission to be alive and forgive myself for
10:04
Speaker 2: what I'd done to my family and friends, and built
10:07
Speaker 2: a whole new identity for myself. So that really was
10:09
Speaker 2: when my purpose was born, because I didn't realize I.
10:13
Speaker 1: Could have one.
10:14
Speaker 2: Thanks to Ellen Stoval and craiglistic well.
10:17
Speaker 1: It's great that we have Ellen in common. She's from
10:20
Speaker 1: a small town like me. It's called Holmesdale, Pennsylvania, up
10:23
Speaker 1: in the Poconos, and that is the connector. But we
10:27
Speaker 1: also worked in the early days of her Septon when
10:30
Speaker 1: I worked at genen Tech, So again I got some
10:34
Speaker 1: experience through my work in telling this story. I actually
10:39
Speaker 1: had an event last night with the Cancer Research Institute.
10:42
Speaker 1: I've been on that board for almost a dozen years.
10:45
Speaker 1: That's focused on immunotherapy for cancer, and it's been around
10:49
Speaker 1: for a long time and played an instrumental role in
10:52
Speaker 1: the PD one development, et cetera. But you know, my
10:55
Speaker 1: years at genen Tech in the nineties early nineties, we
10:59
Speaker 1: did a lot of work with Ellen and obviously she's
11:04
Speaker 1: a legend in the space and has done so much.
11:07
Speaker 1: Given my work, I can relate to it. But your
11:10
Speaker 1: agency world work, how did that shape how you think
11:14
Speaker 1: about storytelling and healthcare and how to get rather than
11:18
Speaker 1: stumble upon it and have someone from lists or reach
11:21
Speaker 1: out to you. How do we end up in these
11:23
Speaker 1: places where we're actually getting the word out and inviting
11:27
Speaker 1: it in.
11:29
Speaker 2: I think understanding how authenticity, honesty, trust is a better
11:37
Speaker 2: use of sort of compelling narrative to sway interests cancer
11:44
Speaker 2: and healthcare is a not a demand market, so you
11:48
Speaker 2: can't really think about it as a consumer strategy. So
11:53
Speaker 2: my approach was the KEYI took from Livestrong, which was
12:00
Speaker 2: very egalitarian way to give people permission to belong somewhere
12:04
Speaker 2: that they never expected to be a part of, Like
12:06
Speaker 2: the club you never asked to join, but it's fun,
12:09
Speaker 2: come join us. We're sorry you're here. It was a
12:11
Speaker 2: level of brand empathy I had not seen at the time,
12:15
Speaker 2: because everything back then was very agendized and siloed and
12:20
Speaker 2: fundraisers and three Days and ribbons and wristbands and pink
12:24
Speaker 2: blenders and all that crap. And Phil Knyke did a
12:27
Speaker 2: great job having Lance the money to build the brand.
12:30
Speaker 2: Lance the Man as a separate conversation, of course, but
12:33
Speaker 2: I'm a staunch defender of the Livestrong brand as a
12:36
Speaker 2: teachable experience. Coming out of the agency.
12:39
Speaker 1: World, you were involved working there, or as an agency,
12:42
Speaker 1: you worked on the brand.
12:44
Speaker 2: I had severed most of my consulting work and went
12:48
Speaker 2: full volunteer for them, but they had launched something very,
12:52
Speaker 2: very compelling, the first incubator in advocacy called the Livestrong
12:57
Speaker 2: Young Adult Alliance. Tons of a were starting to come
13:00
Speaker 2: out about the long term effects of cancer on younger people,
13:04
Speaker 2: on long term pediatrics, and that survival rates were finally
13:09
Speaker 2: starting to improve amongst every age group except the under
13:13
Speaker 2: forty crowd. So it was really a health disparity reckoning
13:18
Speaker 2: that came out of serious data from cogswag SEER, NCI, CDC, NIH,
13:24
Speaker 2: and it was a reckoning for aya's adlas and young adults,
13:28
Speaker 2: which were not words you said back then to create
13:32
Speaker 2: a sort of a patient rights movement. So out of
13:35
Speaker 2: the Livestrong Alliance, which I was a part of for
13:37
Speaker 2: three years, came what I feel is my legacy, that
13:41
Speaker 2: being stupid cancer.
13:42
Speaker 1: Right, So you launched run of the original podcast what
13:47
Speaker 1: was the early podcast world like? There weren't many on
13:50
Speaker 1: this topic, I know.
13:52
Speaker 2: So yeah, someone put a mic in front of you
13:54
Speaker 2: two thousand and seven to said talk. There was a
13:57
Speaker 2: nonprofit group called Vital Options at the same time, run
14:02
Speaker 2: by a woman named Selma Shimmel who herself was a
14:04
Speaker 2: young adult cancer survivor from the eighties, and she hosted
14:08
Speaker 2: the world's first terrestrial radio program in oncology called The
14:14
Speaker 2: Group Room. And she would slip like Howard stern level
14:18
Speaker 2: PLJ equipment from ASCO to ESMO to ASH and record
14:23
Speaker 2: interviews with people there and give out CDs afterwards. And
14:28
Speaker 2: her nonprofit was offered the opportunity to take her AM
14:32
Speaker 2: show onto the I'm doing air quotes the internet right,
14:36
Speaker 2: and she's like, we don't want to do this, you
14:38
Speaker 2: do this. So she basically handed the relationship to this
14:42
Speaker 2: digital streaming blog radio thing post dot com explosion to
14:49
Speaker 2: me and said, go run with this. It's yours as
14:53
Speaker 2: a public radio nerd. And I did college radio. I
14:56
Speaker 2: just had the chance to program a ninety minute show
15:01
Speaker 2: that was live, like live, like if you missed it,
15:04
Speaker 2: you're done over, like fifty six K dial up and DSL.
15:10
Speaker 2: And there was nothing there. I mean there were no
15:13
Speaker 2: talk shows, there were no TV shows, and you don't
15:17
Speaker 2: know your first because you just kind of show up.
15:20
Speaker 2: But on May twenty eighth, two thousand and seven, episode
15:23
Speaker 2: one of the Stupid Cancers, she went live and we
15:26
Speaker 2: had like seventeen thousand streams. I would contend that because
15:29
Speaker 2: we were first to exist. These were stories that had
15:34
Speaker 2: never been told before, to the mass market, to the
15:37
Speaker 2: bubble of healthcare. So every single Monday for an hour
15:42
Speaker 2: and a half was just raw and new because we
15:46
Speaker 2: were just like machetting through a jungle and building the
15:50
Speaker 2: dirt path for the next people.
15:52
Speaker 1: What was your intention when you launched Out of Patients?
15:55
Speaker 2: Well, I had stepped down from Stupid Cancer in twenty nineteen,
15:59
Speaker 2: and and I made arrangements with my successors and the
16:03
Speaker 2: board that instead of keeping the Stupid Cancer show, I
16:08
Speaker 2: would honor its legacy by launching a new show in
16:10
Speaker 2: its honor called Out of Patients in twenty nineteen.
16:14
Speaker 1: So I took a.
16:14
Speaker 2: One year hiatus, and then all the Stupid Cancer listeners
16:18
Speaker 2: became listeners of the new show. At the end of
16:21
Speaker 2: the day, they were four point eight million streams across
16:24
Speaker 2: Fournite episodes, so it was a decent amount. And you know,
16:28
Speaker 2: we had celebrities on and those with Spike, and we
16:30
Speaker 2: had politicians on or you know, notable people on. But
16:34
Speaker 2: every single show is based on one particular young adult
16:37
Speaker 2: cancer story, and then we built the news around that,
16:41
Speaker 2: we built pr around that, we built a specific topic
16:44
Speaker 2: for the day on that. But it was it was
16:47
Speaker 2: the Wild West, Jim. We didn't know what we were doing.
16:50
Speaker 1: Well it still is. I'm in the West. I find
16:53
Speaker 1: this wild that I'm doing this, But what's happened without
16:56
Speaker 1: a patient since then?
16:57
Speaker 2: Well, when I relaunched it, I wasn't quite sure or
17:00
Speaker 2: what the tone was going to be. I was very
17:03
Speaker 2: heavily siloed in the mission of Stupid Cancer to keep
17:06
Speaker 2: the content as relevant as possible to what we were
17:10
Speaker 2: accomplishing as a nonprofit enterprise. Who am I outside of
17:14
Speaker 2: Stupid Cancer? What is my personal brand.
17:16
Speaker 1: Outside of that?
17:18
Speaker 2: It really is to be like the intentionally angry, like
17:22
Speaker 2: George's George Costander's dad meets Lewis Black meets Mark Maron
17:28
Speaker 2: of Pallas, disdain for an establishment that profits off of horror.
17:33
Speaker 2: Maybe like a little bit Ralph Nader in the sixties
17:35
Speaker 2: consumer protection advocate, revealer of secrets, outspoken whistleblower kind of
17:42
Speaker 2: idea behind this, So the guests would span way outside
17:48
Speaker 2: of oncology sometimes. But my Guilty Pleasure episode three, I
17:53
Speaker 2: don't know how he found me. I don't know where
17:56
Speaker 2: it happened. But as a music major who studied all
18:00
Speaker 2: sorts of genres and worshiped at the altars of New
18:04
Speaker 2: Age musicians like Yanni and Enya and David Lands, John
18:09
Speaker 2: Tesh showed up and said I'd like to be on
18:12
Speaker 2: your show.
18:13
Speaker 1: That's a good one. Yeah, yeah, he's great.
18:15
Speaker 2: I saw him at Red Rock in the nineties. So
18:18
Speaker 2: having John tesh show. But episode three catapulted my show
18:23
Speaker 2: into the stratosphere.
18:24
Speaker 1: Yeah, I'm sure, like nowhere.
18:26
Speaker 2: So from there it started to attract lots of bookers
18:31
Speaker 2: and agents that want to have people on the show.
18:33
Speaker 2: But the most memorable ones are the ones who don't
18:36
Speaker 2: plan for and the ones that are wholly unscripted.
18:40
Speaker 1: So what's your mission getting up today? What do you
18:42
Speaker 1: hope to accomplish in the next five ten years.
18:45
Speaker 2: Well, I can reveal on your show that this has
18:48
Speaker 2: been stealth for a while, and I know no one
18:50
Speaker 2: else is doing it, so I can mention this now.
18:53
Speaker 2: Is if there's one thing I learned from Ellen and
18:56
Speaker 2: you mentioned the genetic breast cancer sit ins for her set,
19:00
Speaker 2: and I was very march on Washington.
19:03
Speaker 1: I'll put a plug in.
19:04
Speaker 2: As a precursor prelor to my answer is during the pandemic,
19:08
Speaker 2: it had the chance to produce a documentary series on
19:11
Speaker 2: Spotify which was a fifty year history of cancer patient
19:14
Speaker 2: rights movements, starting with Mary Laska and the War on
19:17
Speaker 2: Cancer and the Nixon Cancer Act, all the way down
19:20
Speaker 2: to Allen Stowell, the Young Cancer Movement, standard the Cancer DEI,
19:24
Speaker 2: And it really informed me again on what I think
19:28
Speaker 2: the country's been missing, which is we're overdue for another
19:31
Speaker 2: cancer patient rights movement. This's been too much systemic change,
19:36
Speaker 2: too many ways to beat around the system and create
19:40
Speaker 2: loopholes that harm people, and not enough real resistance in
19:44
Speaker 2: the streets anymore. And I'm not talking Occupy Wall Street
19:48
Speaker 2: or you know whatever. I feel like we are in
19:51
Speaker 2: a different place now for legislative reform by the state
19:54
Speaker 2: level in the form of consumer protection laws. Advocacy is great,
19:59
Speaker 2: access this is great, Lobbying is great, see force stuff
20:03
Speaker 2: is great. But I'm going to launch the country's first
20:06
Speaker 2: cancer pack and it's called We the Patients, and it
20:10
Speaker 2: will be live in September. And was listening whose eyebrows
20:14
Speaker 2: just raised up? I'm happy to talk to you about
20:16
Speaker 2: what we're planning under cover of night. But I found
20:19
Speaker 2: my next purpose. I found my next stupid cancer.
20:22
Speaker 1: Well that's great. It sounds really cool, And I know
20:25
Speaker 1: in my experience as I went through this with my
20:29
Speaker 1: wife and diagnosis was a big issue and we went
20:33
Speaker 1: round and round and round on misdiagnosis and non diagnosis,
20:38
Speaker 1: and you know, well that happened, rome was burning right
20:41
Speaker 1: in her abdomen. I think that's a really common story.
20:45
Speaker 1: I hear it over and over. I've had podcast guests
20:48
Speaker 1: who talked about this point. The bottom line, if you
20:50
Speaker 1: don't prevent it, we ain't going to cure it. You got, frankly,
20:54
Speaker 1: probably a little lucky relative to the average person, and
20:57
Speaker 1: that must give you all this purpose. But isn't it
21:00
Speaker 1: about prevention and early detection? And it starts with those
21:05
Speaker 1: rights there, then afterwards, of course there's all kinds of
21:09
Speaker 1: other implications. But I'm just curious to see what you're
21:15
Speaker 1: going to do here. I don't think as an either
21:17
Speaker 1: or no. We definitely need to have try to not
21:21
Speaker 1: get it, which is there. But once you're in it,
21:25
Speaker 1: who's protecting.
21:26
Speaker 2: You from going bankrupt and being told no and forcing
21:29
Speaker 2: your doctors to do the wrong things and bringing to
21:31
Speaker 2: pocrities and causing suicide and medicine, So it's both at
21:35
Speaker 2: the same time. I would contend that still as an
21:38
Speaker 2: advocate for young adult cancer, there is no prevention, there
21:42
Speaker 2: is no risk reduction. Maybe self exams if you're willing
21:46
Speaker 2: to be taken seriously by a general practitioner. But the
21:50
Speaker 2: trends are out. All the work we did has been stellar.
21:54
Speaker 2: The strategic plans that Live Strong were all enacted. Everything
21:57
Speaker 2: we wanted to have happen happened. We can't control an
22:01
Speaker 2: increase in the population and science data of corerectal and
22:05
Speaker 2: pancredit cancer in young adults. I have no doubt that
22:09
Speaker 2: it is environmental, but you can't prevent environmental factors. Your
22:14
Speaker 2: telomeres are not going to rebel against you when your
22:17
Speaker 2: epigenetics are fighting against your inner white cell matterifest there is,
22:23
Speaker 2: So what can we do for the populations that are
22:26
Speaker 2: most vulnerable under the age of forty forty five? For
22:29
Speaker 2: these tests aren't available. Genomic tests are great, but you're
22:33
Speaker 2: still at the mercy of likely your employer benefits. Of course,
22:36
Speaker 2: you're not on Medicare or Medicaid, so that'll always be
22:40
Speaker 2: an issue the young adult cancer and the long term
22:42
Speaker 2: pediatric cancer situation. I'm all for genetic testing as a
22:48
Speaker 2: risk reduction factor, but do people really want to know
22:52
Speaker 2: their risk?
22:52
Speaker 1: Is the whole other podcast we can have in and
22:55
Speaker 1: around the concept of empathy. Why does empathy continue to
22:59
Speaker 1: be a missing piece and healthcare comms, like you said,
23:02
Speaker 1: people don't want to know their risks, you know, but
23:05
Speaker 1: everybody's going to get hit by the bouncing ball.
23:08
Speaker 2: Well, there's no short answer to why empathy is lacking
23:12
Speaker 2: in healthcare comms except I could put two words out there,
23:15
Speaker 2: which is complacency in compliance. Which is the death of
23:18
Speaker 2: humanity in all comms. Is it has to be sterile, stripped,
23:23
Speaker 2: de risked, and depersonalized. You can say these words over
23:27
Speaker 2: and over again. Stop putting happy people in cancer ads.
23:30
Speaker 2: I feel like I want to punch something, maybe not
23:33
Speaker 2: hard enough to break my fists. But every time a
23:35
Speaker 2: farmer d comes on and you're seeing dancing people with
23:38
Speaker 2: rheumatoid moderates a severe dying tomorrow syndrome, and your shote
23:44
Speaker 2: effects are dying tomorrow. Anyway, how are we the only
23:47
Speaker 2: country on the planet? I think New Zealand maybe that's
23:49
Speaker 2: allowed to spend twenty six point two billion dollars a
23:53
Speaker 2: year on TV ads and radio and printed digital that
23:57
Speaker 2: should be banned tomorrow.
23:59
Speaker 1: Now. Obviously I started a firm focused in communication and
24:03
Speaker 1: social and digital, but not pure play advertising. And it's
24:08
Speaker 1: not that we don't have that. We don't really tend
24:11
Speaker 1: to do that as much. But I think there is
24:14
Speaker 1: a way through what we're doing, frankly, and more of that,
24:19
Speaker 1: more just real people, real stories. Like you said, it's
24:23
Speaker 1: all whittled down to the most vanilla communication when as
24:29
Speaker 1: you and I both know, it's raw, it's debilitating going
24:33
Speaker 1: through chemotherapy, any therapy. Frankly, there is a level of
24:38
Speaker 1: difficulty that's pretty intense. Now, irony is some of the
24:43
Speaker 1: things we want could happen, and some of the things
24:45
Speaker 1: we don't want could happen exactly. So where we left
24:49
Speaker 1: survivorship and all the things we want to advance. Obviously
24:53
Speaker 1: you're launching the pack for that reason. But where do
24:56
Speaker 1: people go now?
24:57
Speaker 2: Well, if I put my creative head on or my
25:00
Speaker 2: former nonprofit hud on, what makes up for the death
25:03
Speaker 2: of empathy and top down is grassroots up, and some
25:05
Speaker 2: of the nonprofits are not really made or built to
25:08
Speaker 2: be media properties. Their job is to do X Y
25:11
Speaker 2: and Z. I ran Super Cancer very much like an agency,
25:14
Speaker 2: was a very well branded ecosystem with brand promises and
25:19
Speaker 2: all the usual things you would put together in a
25:21
Speaker 2: sort of brand planning docket for a client. So when
25:24
Speaker 2: we worked with industry, we're our alliance on the dwindling
25:28
Speaker 2: advocacy budgets that come downstream from marketing. We work with marketing,
25:33
Speaker 2: but they allowed us to be the empathetic voice of
25:36
Speaker 2: the campaigns instead. And we're one of the few nonprofits
25:40
Speaker 2: that actually helped get a drug to market through approval
25:44
Speaker 2: processes for phase three to implementation because they let us
25:48
Speaker 2: be us. So what is possible to have the nonprofits
25:52
Speaker 2: working on the behalf of the dearth of empathy that
25:55
Speaker 2: comes from top down to get the right messaging to
25:58
Speaker 2: the right consumers to make good decisions. We're not here
26:02
Speaker 2: to endorse a particular drug, but like you said, the
26:04
Speaker 2: stories or it really motivates people. Patients don't want to
26:08
Speaker 2: be marketed too, they want to be spoken with And
26:12
Speaker 2: I think that could possibly be the one big hurdle
26:15
Speaker 2: that still exists.
26:16
Speaker 1: So we're not meeting the needs of patients and providers
26:20
Speaker 1: when it comes to sort of the mental health to
26:22
Speaker 1: burn out, the emotional toller care because we're talking at them,
26:27
Speaker 1: not really with them.
26:28
Speaker 2: Well, medicine's about curing what's wrong with you and not
26:32
Speaker 2: helping you heal.
26:33
Speaker 1: What advocacy groups are doing it right in your mind.
26:37
Speaker 2: I know all the seventy eighty ninety groups that are
26:39
Speaker 2: all out there, and eighty percent of them are mom
26:42
Speaker 2: and pops and they're just trying to do their jobs
26:45
Speaker 2: like the rare disease university right. I would argue fifteen
26:50
Speaker 2: percent of the remainder that will do math right yet
26:53
Speaker 2: are too big. They're too big, they've been around too long,
26:56
Speaker 2: they haven't adapted, they're just modicums. And there are many
27:00
Speaker 2: five percent or kind of a nimble ones. They're in
27:02
Speaker 2: the middle of the goldilocks zone of ones that can
27:04
Speaker 2: work really, really effectively with pharma, with biotech, with life science,
27:09
Speaker 2: with startups. It really is like, what's your goal? I
27:12
Speaker 2: feel like I'm a nonprofit whisper trying to answer your
27:15
Speaker 2: question here. I could be the arbitrary who worked for
27:17
Speaker 2: what campaigns? But it's the nimble ones. They're not too big,
27:21
Speaker 2: they're not too small. There's a very very small goldilock
27:24
Speaker 2: zone of cancer groups that are ready, willing and able
27:28
Speaker 2: to do the job.
27:29
Speaker 1: I do think the podcast, the Internet, all of that
27:32
Speaker 1: has helped free people to find support and solutions, and
27:39
Speaker 1: I think I'm more optimistic than not. But Ultimately, we
27:42
Speaker 1: said before stay out of it. Detected early, that's your
27:46
Speaker 1: best bet. But what would it look like to you
27:49
Speaker 1: if the system treated cancer patients as consumers? We talk
27:53
Speaker 1: about psychographic profiles. We learned a lot in what we did,
27:58
Speaker 1: Like any other market segment, I always talk about what
28:01
Speaker 1: if we could make healthcare advertising and marketing as cool
28:05
Speaker 1: as it would be for sneakers. And I do think
28:08
Speaker 1: pharma I have heard this many of them want to
28:11
Speaker 1: act more like consumer products companies. Would that help the situation? No?
28:18
Speaker 1: And here's why.
28:20
Speaker 2: And I've been adamant about this because I used to
28:22
Speaker 2: use a term called consumer oncology, which is now like
28:25
Speaker 2: basically a concierge medicine to help you get unscrewed when
28:29
Speaker 2: things happen. Is that in consumer you're building a demand
28:34
Speaker 2: market for product people don't know they need. And illness
28:38
Speaker 2: is not a demand market. It's a supply market. And
28:40
Speaker 2: noone wants to be shopping in that store. You're not
28:44
Speaker 2: supposed to know what to do when you enter the
28:48
Speaker 2: sixth store because you don't go to cancer University to
28:52
Speaker 2: get sick. One day, you can research the latest car
28:56
Speaker 2: buying guides to get the car you want, and they
28:58
Speaker 2: will make sure they'll do anything in the power to
29:00
Speaker 2: sell you the car you want. But in healthcare, at
29:03
Speaker 2: least in this country, you are not the consumer. You
29:05
Speaker 2: are not the end user. You are a byproduct of
29:08
Speaker 2: other transactionals that happen outside your realm, and you are
29:13
Speaker 2: ultimately victimized to make a decision that someone else has
29:16
Speaker 2: to make for you. Despite how much self advocacy you
29:20
Speaker 2: can muster, walking around hades with a jacket on that
29:25
Speaker 2: you can't take off.
29:26
Speaker 1: What would a true consumer driven oncology system look like?
29:31
Speaker 2: Guaranteed navigation, consumer protections, banning bankruptcy, banning prior authorization, and
29:38
Speaker 2: making sure your doctor doesn't want to kill.
29:40
Speaker 1: Themselves, right, I mean that's probably true, because that's one
29:44
Speaker 1: of the things we face too. They're burnout and their frustration,
29:48
Speaker 1: and I think that's only getting more intense. Yes, it is.
29:54
Speaker 1: If you could change cancer care from the ground up,
29:56
Speaker 1: what's the first thing you'd focus on? What's the pack on?
29:59
Speaker 1: A focus on.
30:01
Speaker 2: Basically banning bankruptcy, guaranteeing navigation services from a third party
30:06
Speaker 2: usual by the state, like a DA, and ensuring an
30:09
Speaker 2: the shining Hippocrates so there's no burnout in medicine.
30:13
Speaker 1: Do you think AI can help? That? Probably can negation.
30:17
Speaker 2: I don't know if you're auditing swallowing doctor Elizabeth Potter.
30:20
Speaker 2: She's become a famous celebrity surgeon now for United Healthcare
30:26
Speaker 2: and calling them out for all their bullshit. She just
30:29
Speaker 2: put up something today that she had to do, like
30:31
Speaker 2: a flap on a breast cancer patient, and she was
30:36
Speaker 2: asked to do peer to peer if United because they
30:38
Speaker 2: wouldn't approve an overnight's day, which you clearly need for
30:41
Speaker 2: this type of surgery. And the peer that she spoke
30:44
Speaker 2: to was neither a surgeon or an ecologist, more like
30:47
Speaker 2: a medical intern who had somehow authority over what she
30:51
Speaker 2: thinks is best for her patient, with that person having
30:54
Speaker 2: zero medical understanding of the prosecured hand. It should be
30:58
Speaker 2: illegal for health insurer to do peter peer without having
31:03
Speaker 2: a peer actually be a peer period. That's one example
31:07
Speaker 2: of a protection. And if that peer isn't even licensed
31:10
Speaker 2: in that state to fellow those states' laws, they should
31:12
Speaker 2: also be banned from doing that. That is protecting the patient.
31:17
Speaker 2: And yes, we want to empower the doctors to make
31:19
Speaker 2: the most informed decisions hippocratically best for their patients, all
31:23
Speaker 2: for the right amount of regulated oversight, but now they're
31:27
Speaker 2: just causing harm and that is unacceptable.
31:30
Speaker 1: All right, Well, I don't have anything to add to that.
31:33
Speaker 1: I think you answer that great. I want to ask.
31:36
Speaker 1: I always ask my guests two things, and I'm going
31:39
Speaker 1: to be excited because you're a real music guy. I'll
31:43
Speaker 1: start with the first one and we'll go to the
31:44
Speaker 1: second one because you already mentioned guilty pleasures. But what's
31:48
Speaker 1: your desert island album? If you're cast and lost in
31:52
Speaker 1: a desert island, what would be the album you'd bring?
31:55
Speaker 1: Bill a Joe Glass Houses? Okay, straight up, I'm gonna
32:00
Speaker 1: go listen to that this weekend. My wife loved Dilly Joel.
32:04
Speaker 1: That's awesome. I hadn't heard that one yet, but that's
32:06
Speaker 1: a good one. Guilty pleasure? What is it? Marshmallow fluff? Hm?
32:14
Speaker 1: I may go look for that this week See. This
32:18
Speaker 1: is why I asked, so that I have more guilty pleasures.
32:23
Speaker 1: We could obviously go on for hours, Matt, We'll do more.
32:26
Speaker 1: This was so awesome. I'm so glad I got to
32:29
Speaker 1: meet you. I can't believe we haven't hung out. Even
32:32
Speaker 1: the Ellen stoveall thing really, you know that codified.
32:35
Speaker 2: And we have to have dinner when you're in New
32:36
Speaker 2: York next time, right, and and I do get there.
32:39
Speaker 1: Thanks for spending some time with me. I really appreciate it.
32:42
Speaker 1: I know our listeners will. They're going to learn a lot.
32:46
Speaker 1: We'll stay in touch and do more. Thanks. No, I
32:49
Speaker 1: appreciate it.
32:49
Speaker 2: Thank you so very much. And just a quick plug
32:51
Speaker 2: for my documentary The Cancer Mavericks. Yes please, I would
32:55
Speaker 2: encourage everyone to have a listen to it. It's Cancermavericks
32:58
Speaker 2: dot com. Nice and easy, have a listen. It's an
33:00
Speaker 2: eight part Spotify series Ken Burns endorsed on the history
33:05
Speaker 2: the fifty year history of cancer patient whites movements in America.
33:09
Speaker 1: Terrific. Yeah, we'll promote that sounds awesome. Thanks again, Jim,
33:13
Speaker 1: take care of you too. Man. Hey, everyone, thanks for
33:17
Speaker 1: joining me on the Get Real podcast. You know, I
33:20
Speaker 1: hope you feel a little healthier hanging out with me.
33:23
Speaker 1: You know, it's gonna be a lot of fun. Passing
33:26
Speaker 1: this along to others. Please subscribe below, Please share. I'm
33:30
Speaker 1: excited not just to talk about healthcare, but a lot
33:33
Speaker 1: of other fun topics. It's about making healthy talk about healthcare.
33:39
Speaker 1: It is not a lecture. This is supposed to be
33:41
Speaker 1: fun and look forward to spending more time with you
33:44
Speaker 1: in the future.