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From Brain Cancer to Patient Power: Challenging the System and Building a Movement for Change · Amplify: A Podcast Powered by Patient Voice Partners

0:01
SPEAKER_02: Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
0:11
SPEAKER_02: I'm Ursula Mann.
0:12
SPEAKER_00: And I'm Brent Cordy.
0:14
SPEAKER_00: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
0:21
SPEAKER_02: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
0:40
SPEAKER_04: Before I even go further, Anne-Marie, those words really leave people feeling jolted.
0:46
SPEAKER_04: What comes to mind when you hear the words brain cancer?
0:49
SPEAKER_04: And as you're thinking of today's show, what were you thinking?
0:52
SPEAKER_03: I thought about somebody with the experience of brain cancer.
0:56
SPEAKER_03: I pictured someone much older.
0:59
SPEAKER_03: I did not picture the activist, the brilliance, and the momentum that he has been able to apply to his life coming through this experience.
1:08
SPEAKER_03: So for me, what I thought of when I started preparing for the episode and then how I'm showing up to the episode completely has been turned on its head.
1:18
SPEAKER_03: And I hope our listeners today are going to have that same experience.
1:22
SPEAKER_04: I think that's very thoughtful, Amory.
1:24
SPEAKER_04: And certainly ideas around what happens to people at different ages.
1:28
SPEAKER_04: Matthew, who we're going to be talking to today, is a 30-year brain cancer survivor.
1:33
SPEAKER_04: And to be told at a young age to get your affairs in order is something I really want to talk to him more about.
1:39
SPEAKER_04: A little bit more about Matthew before we get started.
1:41
SPEAKER_04: He really is the unfiltered voice of reason.
1:44
SPEAKER_04: After surviving cancer, he went on to be the founder of Stupid Cancer.
1:48
SPEAKER_04: And he's also the founder of We the Patients.
1:51
SPEAKER_04: What makes Matthew really special is all the work that he does.
1:54
SPEAKER_04: He's an advocate for healthcare disruption, policy, patient empowerment.
1:59
SPEAKER_04: And he joins us today from New York, fabulous city.
2:02
SPEAKER_04: And all the work that he does with patient rights to activism.
2:06
SPEAKER_04: We're very excited to dive deeper and better understand the situation and what happened.
2:11
SPEAKER_04: So, Matthew, welcome to today's show.
2:14
SPEAKER_01: Hello.
2:14
SPEAKER_01: Thanks for having me.
2:16
SPEAKER_04: So, Matthew, take us back in time.
2:18
SPEAKER_04: You were a young man.
2:19
SPEAKER_04: You started experiencing some symptoms.
2:22
SPEAKER_04: What happened?
2:23
SPEAKER_01: So I feel like this is the Golden Girls Picture at Sicily, 1877.
2:27
SPEAKER_01: So picture at Binghamton 1995.
2:30
SPEAKER_01: I was a senior.
2:32
SPEAKER_01: I had just began my senior year, and I had been studying music as a classically trained pianist, jazz, film, Broadway, everything, dance as a pianist for a decade since the age of 11.
2:47
SPEAKER_01: And I got back to school to start my senior year in the fall of 95.
2:52
SPEAKER_01: And I sat down at the piano to start playing again, and my left hand didn't do what I remembered doing.
2:57
SPEAKER_01: I didn't play that much over the summer, so it didn't occur to me that my left hand had lost some fine motor coordination.
3:04
SPEAKER_01: I couldn't really arpeggiate up and down the keys.
3:06
SPEAKER_01: For the non-musicians listening in, to arpeggiate means to run your fingers up and down the piano doing scales very quickly.
3:14
SPEAKER_01: And I could no longer do it as quickly as I remembered doing it.
3:17
SPEAKER_01: So I went through six months of not taking myself seriously, having physicians not take me seriously, and I forgive them, and I forgive myself because the last thing you think when you're a pianist whose left hand can't arpeggiate was what ultimately became what I was diagnosed with.
3:35
SPEAKER_01: So everything in perspective.
3:37
SPEAKER_04: Matthew, you were 21, right?
3:39
SPEAKER_01: I was just a pup.
3:40
SPEAKER_01: I was 21.
3:41
SPEAKER_04: You were young.
3:42
SPEAKER_04: So people are like, you know, let's look at all the easy things.
3:47
SPEAKER_04: We're not thinking of anything serious, right?
3:49
SPEAKER_01: Correct.
3:50
SPEAKER_01: It's funny now, but it wasn't funny then that I was told that I should just put my backpack on my other shoulder.
3:58
SPEAKER_01: I was told I had carpal tunnel syndrome.
4:00
SPEAKER_01: I was told I had Epstein Bar, I had possibly meningitis, that I might have had a mini stroke, early onset, multiple sclerosis, and then they eventually gave me cough syrup.
4:12
SPEAKER_04: That's a lot of incorrect agnoses.
4:15
SPEAKER_01: I didn't have, I guess, by comparison, like normal symptoms.
4:19
SPEAKER_01: Did you have headaches?
4:21
SPEAKER_01: I had headaches, but I've always had headaches my whole life.
4:23
SPEAKER_01: Like normal people have headaches, right?
4:25
SPEAKER_01: It was a different place in the head, though.
4:27
SPEAKER_01: I've had headaches, the frontal stress headaches, but I just didn't think anything of it.
4:32
SPEAKER_01: I was the stupid, naive, innocent, invincible kid who just walked it off and chalked it up.
4:38
SPEAKER_01: That was it.
4:39
SPEAKER_01: I wasn't playing enough.
4:40
SPEAKER_01: I gotta rebuild it in my hands, or I switched hands to make it easier to not deal with the fact that I couldn't conduct with this one and play with this one.
4:48
SPEAKER_01: So when I had like quote unquote actual symptoms, that's when they started to say, oh, maybe there's actually something wrong with this kid.
4:56
SPEAKER_01: Go get like EEG and a neurologist and a MRI.
4:59
SPEAKER_04: So what were the actual symptoms?
5:02
SPEAKER_04: How long did that take?
5:03
SPEAKER_01: Fainting, slurred speech, blurred vision, crippling headaches, not just like Tylenol headaches.
5:09
SPEAKER_01: And my eyes went all Marty Feldman from Young Frankenstein.
5:12
SPEAKER_01: So right away, there's definitely something living inside his head that doesn't belong there.
5:17
SPEAKER_01: And only then was like, all right, now it's time for me to recommend you go see a real doctor instead of like, hey, Dr.
5:23
SPEAKER_01: Nick from The Simpsons.
5:25
SPEAKER_04: So then they did some more tests.
5:27
SPEAKER_04: They came back to tell you and give you the news what happened.
5:32
SPEAKER_01: No, they didn't.
5:33
SPEAKER_01: They didn't tell me.
5:34
SPEAKER_01: This is the ultimate Gen X story.
5:36
SPEAKER_01: I went to the radiology place with my mom on December 27th, 1995.
5:42
SPEAKER_01: We had no idea why we were going there.
5:44
SPEAKER_01: But we went.
5:45
SPEAKER_01: I went for this scan.
5:46
SPEAKER_01: Back then, MRIs were like nine and a half hours long.
5:49
SPEAKER_01: I'm not really a trauma-informed person, but that was not the most fun experience.
5:54
SPEAKER_01: And they didn't give you earplugs back then.
5:56
SPEAKER_01: There was no music, no mirrors, no televisions, nothing to do.
6:00
SPEAKER_01: And there was no internet.
6:01
SPEAKER_01: They can't even think about anything.
6:03
SPEAKER_01: So we finish up, we go out to lunch, get back to my house, and go upstairs.
6:09
SPEAKER_01: And here's the telltale heart here.
6:11
SPEAKER_01: The machine in the bedroom was blinking.
6:14
SPEAKER_01: People already know what those words mean.
6:17
SPEAKER_01: You have a message.
6:18
SPEAKER_01: Remember?
6:19
SPEAKER_01: Answering machines, right?
6:20
SPEAKER_01: It was like two o'clock on a Thursday.
6:23
SPEAKER_01: No one is calling the house.
6:24
SPEAKER_01: So we kind of just had a feeling that this wasn't gonna be a thing.
6:29
SPEAKER_01: And of course, they diagnosed me over an answering machine message.
6:33
SPEAKER_01: We found something in your brain, come back.
6:36
SPEAKER_01: Oh wow.
6:37
SPEAKER_01: So yeah, it's always fun to be told over a blinking answering machine.
6:41
SPEAKER_01: They didn't know it was cancer yet.
6:42
SPEAKER_01: It's like there's a thing in your head, come back here.
6:45
SPEAKER_04: Do you remember what was going through your mind when you heard that on the answering machine?
6:49
SPEAKER_04: What were some of your thoughts?
6:50
SPEAKER_01: A golf ball-sized tumor was going through my mind.
6:53
SPEAKER_04: Okay.
6:55
SPEAKER_01: I gotta say, it's a weird way to express this, but I was relieved that I wasn't crazy, and everyone that told me it was in my head was right.
7:04
SPEAKER_01: In correct way, literally.
7:06
SPEAKER_03: Yeah, yes, literally.
7:08
SPEAKER_03: What was the time frame from when you first experienced oh August to late December?
7:15
SPEAKER_03: Wow.
7:15
SPEAKER_03: That's a long time to be wondering what's going on.
7:18
SPEAKER_01: Yeah.
7:19
SPEAKER_01: I have colleagues and friends and people I've known for 50 years that have waited longer to find something worse.
7:25
SPEAKER_01: Not that it's a contest, but still that's part of life, I suppose.
7:28
SPEAKER_01: It's not a good part.
7:30
SPEAKER_04: Were you started on a treatment regularly?
7:33
SPEAKER_04: Did things move quite quickly after that, once this was discovered and they shared this news with you?
7:39
SPEAKER_01: One of the greatest things I feel I have the sort of a terrible advantage to share is that this is 30 years old.
7:46
SPEAKER_01: Nothing existed 30 years ago except ripping your head open and throwing it in an oven.
7:53
SPEAKER_01: So massive radical craniotomy for eight hours, ripping your head back and scooping out shit like an ice cream parlor.
8:00
SPEAKER_01: Stowing you back up with this giant Frankenstein thing on the back of your head.
8:03
SPEAKER_01: And then radiation, I don't think I quantify it nearly enough.
8:07
SPEAKER_01: It's not a memoir of the book, but it was the single most horrifying torture of my entire life.
8:13
SPEAKER_01: Because radiation back then was you're getting thrown into the fire.
8:17
SPEAKER_01: It's like a Turkish gulag deep fried inside Chernobyl and nested within a nestly egg of easy bake oven.
8:24
SPEAKER_01: Wow.
8:25
SPEAKER_01: Yeah.
8:25
SPEAKER_01: You're withered and shriveled and burned and in agony.
8:30
SPEAKER_01: They don't even tell you about oh, by the way, these things might happen to you, but yeah, it could look, you look great.
8:35
SPEAKER_01: Just bathe in Vaseline, you'll be fine.
8:37
SPEAKER_03: And I would imagine, again, the age that this presented at, I'm sure it was not easy to find people who you could talk to that were going through a similar experience.
8:48
SPEAKER_01: Oh, it didn't exist.
8:50
SPEAKER_01: The idea of appear in cancer land?
8:53
SPEAKER_01: No.
8:54
SPEAKER_01: And I had it differently.
8:55
SPEAKER_01: We're gonna jump ahead to the young adult cancer thing that I gave birth to.
8:59
SPEAKER_01: But in those situations, in your 20s and 30s, you're with Medicare patients.
9:04
SPEAKER_03: Exactly.
9:05
SPEAKER_03: Yeah.
9:06
SPEAKER_01: I was with pediatric patients.
9:08
SPEAKER_01: So I was with like babies with leukemia and parents my age.
9:13
SPEAKER_01: So there was no way I was gonna be introduced to other 20-somethings with any cancer at all.
9:21
SPEAKER_01: And I was in New York at Sloan and NYU.
9:23
SPEAKER_01: If it would have happened, it would have happened, it just didn't exist.
9:26
SPEAKER_04: And what were conversations like with your family?
9:29
SPEAKER_04: Did you talk quite openly about this?
9:31
SPEAKER_04: Did they share their reactions and thoughts with you?
9:34
SPEAKER_04: Was it a little bit quiet and you were really left on your own?
9:37
SPEAKER_01: I've been very private about this, but I do mention parts of it in the book and when they give talks.
9:42
SPEAKER_01: My dad became the hero of the family.
9:44
SPEAKER_01: My brother was in college at the time when I got sick.
9:48
SPEAKER_01: He was a freshman at Binghamton when I was a senior.
9:51
SPEAKER_01: And he had to live his life and do his courses and just somehow deal with the fact that the only way to know how I was doing it was to pick up a phone, rotary dial the house, and hope someone answers.
10:01
SPEAKER_01: There was no way to know anything right away.
10:03
SPEAKER_01: So he went through his own trauma through that.
10:06
SPEAKER_01: But my dad, he became the hero.
10:09
SPEAKER_01: He was always a hero.
10:10
SPEAKER_01: He's my hero, but he absorbed the full frontal force of insurance and navigating and negotiating and transportation and emotional support with our fax machines in the basement, with our black and white monitors and our dot matrix printers.
10:28
SPEAKER_01: And everything is in perspective, right?
10:30
SPEAKER_01: This is a very different time with AOL dial-up and no website to visit.
10:36
SPEAKER_01: And we can debate how much differently terrible health insurance was in the 1990s, but he was on one of the greatest tier one pensions and benefits plans as a New York City educator.
10:47
SPEAKER_01: The UFT in America is one of the greatest unions ever.
10:51
SPEAKER_01: Oh, they were.
10:52
SPEAKER_01: Everything's changed now.
10:53
SPEAKER_01: But you could not have asked, maybe the AFL CEO had a better plan.
10:58
SPEAKER_01: But the New York City Teachers Union had the best plan.
11:01
SPEAKER_01: It covered everything, it was amazing, incredibly non-negotiable.
11:04
SPEAKER_01: And yet they still gave us help.
11:06
SPEAKER_01: So he had to get an MBA and save Matt's ass, which is not something you sign up for as a dad.
11:12
SPEAKER_01: You're already busy trying to save your kids' ass, a general.
11:15
SPEAKER_01: And I was just sitting there dying every day.
11:17
SPEAKER_01: I couldn't do anything to help.
11:19
SPEAKER_01: So that's what the reality was for our family.
11:22
SPEAKER_01: And one thing my dad did do, which by today's standards is considered unprecedented, he kept the journal.
11:30
SPEAKER_01: Wow, interesting.
11:32
SPEAKER_01: He opened up Microsoft Word on our little black and white Mac in the basement with the fax machines and the dot matrix printers, and he wrote down everything that happened every day for six months.
11:42
SPEAKER_01: And I found the Word document, I had to upconvert it because on a floppy disk, and we used it for the book.
11:48
SPEAKER_01: We didn't remember anything, thankfully.
11:51
SPEAKER_01: This happened, and this happened.
11:53
SPEAKER_01: One of the stories that opens the book is how on one of the very first days we're going to Sloan, which is an hour and a half long trip from Stanal every day back and forth, there was a giant truck blocking 2nd Avenue.
12:05
SPEAKER_01: So my dad just went on the sidewalk and nearly killed people to get me to the hospital.
12:09
SPEAKER_01: Wow.
12:10
SPEAKER_01: What a metaphor.
12:11
SPEAKER_01: We didn't even remember that.
12:13
SPEAKER_01: And that's what my dad had to go through everything for up to two years it took to settle all the debts.
12:19
SPEAKER_01: And we still netted out as a family, like thousands if inflation adjusted probably$100,000 out of pocket.
12:27
SPEAKER_04: Yeah.
12:27
SPEAKER_04: Shout out to your dad.
12:28
SPEAKER_04: Thank you for sharing that.
12:30
SPEAKER_01: Oh, yeah.
12:31
SPEAKER_01: Poppy, still around.
12:32
SPEAKER_01: Love you.
12:34
SPEAKER_04: Matthew, you had shared that you were told by a physician you should get your affairs in order.
12:41
SPEAKER_04: Take us back to that time as to what happened after that.
12:45
SPEAKER_04: And did you get to see that physician again to say things are well as time went forward?
12:52
SPEAKER_01: I had a polyglot of physicians of varying temperaments, empathies, menschiteness, and apathy.
13:00
SPEAKER_01: And a little OCD and a little Asperger's.
13:04
SPEAKER_01: It was a bit of a clown car of medical professionals surrounding me.
13:08
SPEAKER_01: My nearest surgeon was the most honest human imaginable, Orthodox Jew Medicine Chavez for three hours to explain things to us.
13:16
SPEAKER_01: He was very kind, very open.
13:19
SPEAKER_01: He was not the guy that wound up saying to me, Well, let's find out, let's see if you're here in five months.
13:25
SPEAKER_01: Not a nice thing to sell a 21-year-old.
13:27
SPEAKER_01: Well, let's see where you're at and if you're standing above the tulips in five months.
13:31
SPEAKER_01: That was a different guy.
13:33
SPEAKER_01: And then the other doctors were like, you know, we don't really care how you're feeling.
13:37
SPEAKER_01: We just want to finish our protocols and get our numbers for the data, right?
13:41
SPEAKER_01: Just you're a piece of meat.
13:42
SPEAKER_01: We don't care who you are.
13:43
SPEAKER_01: And that leads to another really important story about why I said no to chemotherapy, which shocks people today, but the context is relevant at the time.
13:51
SPEAKER_01: You're just in like this suspension of disbelief surreality.
13:56
SPEAKER_01: You're entering like the Ozarks meets Alice in Wonderland.
13:59
SPEAKER_01: You have no idea what the next moment is going to bring.
14:02
SPEAKER_01: And you find some kind of handrail, which for me literally was just my dad.
14:07
SPEAKER_01: I couldn't play piano anymore.
14:09
SPEAKER_01: I couldn't finish college.
14:11
SPEAKER_01: All my friends, some abandoned me.
14:12
SPEAKER_01: They had to go be 21-year-olds and go to school and work and do things like that.
14:17
SPEAKER_01: So there really was nothing going through my head except how was this a reality?
14:23
SPEAKER_01: But I never asked why me or why this or why now.
14:26
SPEAKER_04: So you said no to chemotherapy.
14:29
SPEAKER_04: How long were you back and forth with doctors before you felt like I'm okay?
14:35
SPEAKER_01: What day is it?
14:37
SPEAKER_04: Yeah.
14:38
SPEAKER_01: So my surgery was January 10th, 96.
14:43
SPEAKER_01: I was in the hospital recovering for a full week.
14:46
SPEAKER_01: That's how long it took back then to recover, even the slightest bit.
14:49
SPEAKER_01: And it took me another three months to fully recover.
14:52
SPEAKER_01: But along the way, I'm getting 33 treatments of nuclear fusion injected into my body, which nearly killed me more than the surgery nearly killed me.
15:02
SPEAKER_01: So it's like April 30th.
15:05
SPEAKER_01: We're kind of quote, done, but there's no done.
15:08
SPEAKER_01: But back then is enjoy your life.
15:10
SPEAKER_01: Try the veal, right?
15:12
SPEAKER_01: But then there's like, but wait, there's more.
15:14
SPEAKER_01: We want to give you chemotherapy because we didn't try to kill you enough from not dying and from what you were dying from.
15:19
SPEAKER_01: And the reason this story is really important is because it carries forward to today's narrative in any country, in any situation, which is that I didn't know I could have autonomy and that decisions were being made for me without me.
15:34
SPEAKER_01: And the TLDR is basically that the chemotherapy they wanted to give me would have caused me permanent nerve damage in my fingers and toes and deafness.
15:44
SPEAKER_01: Now, as a musician, bingo, as a concert pianist who couldn't play but might be able to have a career now without the tumor and after the radiation, the last thing I wanted was to go deaf and numb.
15:56
SPEAKER_01: But I didn't know those were the side effects until my uncle stepped in and asked the question because he's a geneticist and a doctor.
16:05
SPEAKER_01: I happened to have an uncle, godfather, my dad's best friend, Dr.
16:10
SPEAKER_01: J, who was following along the whole time.
16:13
SPEAKER_01: Like, what the hell's going on?
16:14
SPEAKER_01: And he had the gall, as he did, and he deserved to have the gall because he earned it to demand of these doctors what's the cocktail of the chemotherapy.
16:24
SPEAKER_01: We didn't even know that that was a thing.
16:26
SPEAKER_01: Smart question, Matthew.
16:28
SPEAKER_01: Why would we know to ask that question?
16:30
SPEAKER_01: We didn't know to ask that question.
16:32
SPEAKER_01: I thought chemotherapy was like one thing, it could be 12 things.
16:36
SPEAKER_04: Or you think they would tell you things that are important that many people would want to know.
16:42
SPEAKER_04: That's an assumption.
16:44
SPEAKER_01: That's the point of the lack of autonomy that I didn't know I could have had if I only knew that in advance without needing Dr.
16:52
SPEAKER_01: J.
16:53
SPEAKER_01: So when I found out, as I was just about to say, sure, I'd rather extend my life and see what happens than dying now in five years than yesterday.
17:03
SPEAKER_01: I said, no, I would rather die in your cog protocol pulled out of your ass five years and somehow rehab myself and not be deaf and numb than do your chemotherapy and hope it makes me live to 140 and never have music in my life again.
17:21
SPEAKER_01: And they didn't understand why that was my decision.
17:25
SPEAKER_03: It's not their job to understand.
17:28
SPEAKER_01: No, but that's why I'm perseverating on the fact that this is the single most relevant carry-forward, even 30 years late.
17:36
SPEAKER_04: This was a pivotal time.
17:38
SPEAKER_03: And that's actually where I was just gonna go, Ursula.
17:41
SPEAKER_03: It seems like this might have been the start, the spark that started to create you on an advocacy journey.
17:48
SPEAKER_03: Yes, no.
17:49
SPEAKER_01: I didn't know what to do with the mad that I felt, which is my favorite Mr.
17:53
SPEAKER_01: Rogers quote.
17:54
SPEAKER_01: I had no idea it was possible to do anything with the mad that I felt.
17:58
SPEAKER_01: I resented the fact that I had to go get a plan B job and I couldn't go to grad school, and it would take me years to rehabilitate myself to the point that I was at what I got to apply to grad school and be a film composer.
18:11
SPEAKER_01: So that was just shot and gone.
18:13
SPEAKER_01: All of my friends who I love and I'm still friends with today, they went off to grad school.
18:18
SPEAKER_01: There was barely email back then.
18:21
SPEAKER_01: Was cold waiting even invented back then?
18:23
SPEAKER_01: Right?
18:24
SPEAKER_01: I don't even remember.
18:25
SPEAKER_01: So it was not that easy to keep in touch with your friends who cared about what was happening to their friend.
18:31
SPEAKER_01: No one at my job, by the way, this was a time we'll put this in context, where cancer was contagious, and cancer made you magnetic, and cancer destroyed your reputation, and cancer made you anathema to society.
18:49
SPEAKER_01: So when I got this job, I hit I still looked sick, but I was bald, and that was still kind of trendy.
18:56
SPEAKER_01: My mom's like, at least your head is nicely shaped.
19:00
SPEAKER_01: So I kind of still fit in.
19:02
SPEAKER_04: Your head is nicely shaped, Matthew.
19:04
SPEAKER_04: You look good.
19:05
SPEAKER_01: The physiognomy is working here.
19:07
SPEAKER_04: Well, you and I have a picture with a hat, without a hat.
19:09
SPEAKER_04: It all works.
19:10
SPEAKER_04: You look good.
19:10
SPEAKER_01: So it's good chemistry, it's good karma.
19:13
SPEAKER_01: So thanks, mom and dad, for the genetics of the cabeza up there.
19:16
SPEAKER_01: But I hid my story, my life.
19:19
SPEAKER_01: I just didn't make friends.
19:21
SPEAKER_01: I wandered around the office.
19:23
SPEAKER_01: I fixed basically computers at an ad agency.
19:26
SPEAKER_01: And then I got into full madmen Don Draper World without the misogyny for a decade.
19:31
SPEAKER_01: I was terrified to tell anyone about who I was and what I'd gone through because people would run away from you.
19:38
SPEAKER_01: So it's a long answer to question.
19:40
SPEAKER_01: I didn't know what to do until I happened to accidentally find my first cancer buddy in 2002.
19:48
SPEAKER_01: I went seven years not even believing it was possible to have a cancer buddy who made me feel like I didn't go there through nothing, who understood.
19:59
SPEAKER_01: And this is not an uncommon narrative that everyone likes to know to find somebody that gets it that isn't like your mom.
20:04
SPEAKER_01: That's great today.
20:05
SPEAKER_01: It's a lot easier for that to happen, not accidentally.
20:09
SPEAKER_01: But I didn't know what to do with the mad that I felt until I met this guy named Craig.
20:13
SPEAKER_01: And from there, the rabbit hole opened and the fork in the road became my destiny.
20:19
SPEAKER_04: So tell us how was it after you met your cancer buddy, what happened to lead you to start some of this work that you've done?
20:28
SPEAKER_04: The cancer group, the weave the patient.
20:30
SPEAKER_04: Tell us a little bit about what led to that and how you commenced.
20:35
SPEAKER_01: The secret to having a plan is not to have one.
20:37
SPEAKER_01: A good plan.
20:39
SPEAKER_01: Things tend to happen to me, and I tend to not really happen to things back in those days.
20:45
SPEAKER_01: And it just befell me that I met Craig.
20:49
SPEAKER_01: And again, with the whole happened to part of my life and my sort of maybe predetermined meaning in life and being here, Craig happened to be the single most important human in Washington, DC for cancer policy.
21:03
SPEAKER_01: Just happened to be.
21:04
SPEAKER_04: Just happened.
21:05
SPEAKER_01: Wow.
21:06
SPEAKER_01: Just happened to be on this board and that board, and he's like down the rabbit hole.
21:10
SPEAKER_01: He said to me, How would you like to be a cancer advocate?
21:13
SPEAKER_01: What'd you say?
21:14
SPEAKER_01: I said, What the hell is a cancer advocate?
21:16
SPEAKER_01: Those two words didn't make any sense to me.
21:18
SPEAKER_01: How do you advocate for cancer?
21:21
SPEAKER_01: Yay, more cancer.
21:22
SPEAKER_01: Let's go, right?
21:23
SPEAKER_01: What the hell's going on wrong with you?
21:25
SPEAKER_04: What did he say to you?
21:26
SPEAKER_04: We've had a number of conversations.
21:28
SPEAKER_04: That word can make people feel uncomfortable.
21:32
SPEAKER_04: And there's reasons for that, and people have different interpretations.
21:36
SPEAKER_04: So, how did he answer your question?
21:38
SPEAKER_01: He said, You can help the next brain cancer survivor not get off, Syrup.
21:43
SPEAKER_01: I'm in.
21:43
SPEAKER_01: What do I have to do now?
21:45
SPEAKER_04: Yeah, sign me up.
21:46
SPEAKER_01: Yeah, so I think the next four years I started to fork in the road.
21:52
SPEAKER_01: I kept my job.
21:52
SPEAKER_01: I needed income, but I just jumped into what was this early nascent I don't know.
22:00
SPEAKER_01: Like a cottage industry of rapscallions that are in the genetics world trying to figure out what young adult cancer really was.
22:06
SPEAKER_01: Their words, their concepts, their research.
22:10
SPEAKER_01: And I'm like, I can do this, but I don't want to be a researcher.
22:13
SPEAKER_01: I don't want to be an academic.
22:15
SPEAKER_01: I don't want to be a policy wonk.
22:16
SPEAKER_01: I don't want to run a nonprofit, famous last words.
22:19
SPEAKER_01: I wanted to running a nonprofit.
22:22
SPEAKER_01: I felt like my entertainment background, my creative background, my agency background gave me like a category of one opportunity to build like a national community, a national brand, a national Gen X experience that was very antithetical to the pink ribbons and the pink blenders and the yellow wristbands and the you'll be fine, the pity party bullshit and the silos.
22:45
SPEAKER_01: I suffer more than you.
22:46
SPEAKER_01: I built like the egalitarian church of young adult cancer advocacy.
22:52
SPEAKER_01: But I built it like an ad agency.
22:54
SPEAKER_01: We had a radio show.
22:55
SPEAKER_01: Who the hell had a radio show in cancer?
22:57
SPEAKER_01: Me.
22:58
SPEAKER_01: I'm the only guy.
22:59
SPEAKER_01: In 2007, right?
23:01
SPEAKER_01: We put together CancerCon and trade shows and meetups with booze and pub crawls.
23:09
SPEAKER_01: We thin that wouldn't age well by today's standards.
23:12
SPEAKER_01: We sold t-shirts.
23:13
SPEAKER_01: I think Livestrong had t-shirts because it's Livestrong.
23:16
SPEAKER_01: Our T-shirts said, like, who needs testicles anyway?
23:21
SPEAKER_01: Ovaries are for losers.
23:22
SPEAKER_01: Eyebrows are so last year.
23:24
SPEAKER_01: We had fun of cancer.
23:26
SPEAKER_01: And I built what I wish that I had 10 years after I had it.
23:29
SPEAKER_01: That's where it all kind of started.
23:32
SPEAKER_04: After you had your buddy.
23:33
SPEAKER_04: Stupid cancer was part of this movement.
23:36
SPEAKER_01: Craig is the outlet on the wall from where I plugged in the corn.
23:40
SPEAKER_03: But one of the things as I was preparing for the show and getting to know your work a little bit more, this really unique blend that you have of fearless advocacy, media savvy, and again, that sort of sense of being able to look at a system and the people within it and understand it, right?
23:59
SPEAKER_03: Systems can be really complex.
24:00
SPEAKER_03: So people have a tendency to pull pieces out because this is easier.
24:05
SPEAKER_03: I'll fix this little piece over here because it's a little bit easier.
24:08
SPEAKER_03: You seem to look at things as the system in its totality and really get this understanding.
24:13
SPEAKER_03: And I'm curious how you've maintained that because you've been doing this a long time now, but you seem to really still maintain that ability to stay independent, to stay fearless.
24:25
SPEAKER_03: How do you do that?
24:26
SPEAKER_01: I have a very weird brain.
24:29
SPEAKER_01: I always ask what happens before the why happens.
24:33
SPEAKER_01: It's a very upstream way of thinking about pattern recognition.
24:37
SPEAKER_01: I didn't realize I had this weird rain man skill until a couple of years ago.
24:43
SPEAKER_01: I don't look at that there's a problem or why there's a problem.
24:48
SPEAKER_01: I look at what happened before there was a problem.
24:51
SPEAKER_01: And what would it mean to dam the river up so there isn't a problem in the first place?
24:55
SPEAKER_01: Like it's not like prevention, don't get cancer.
24:58
SPEAKER_01: It's at least in America, how has healthcare in America become less dependent on a patient outcome and more dependent on a quarterly report?
25:07
SPEAKER_03: That's a really good question.
25:09
SPEAKER_01: What's the why behind that?
25:11
SPEAKER_01: What's behind the why?
25:12
SPEAKER_01: So I've always been a student of history.
25:15
SPEAKER_01: I've always felt like the people upon whose shoulders we stand have never gotten any recognition, let alone the people on whose shoulders they stood.
25:23
SPEAKER_01: I audited sociology courses because I didn't want to be a major in it.
25:27
SPEAKER_01: I learned enough about anthropology, about basic human nature, human design.
25:32
SPEAKER_01: And over the course of the last 20 years, I've ticked nearly every box except working for pharma or being an actual lobbyist.
25:41
SPEAKER_01: But I see things from sort of this panoply of boxes I tick that most people don't have the privilege of having just because I've been all these people before.
25:52
SPEAKER_01: And what I started to recognize, especially during the pandemic, when I had like everyone had some spare time, was that very adamant about creating a little controversy about what I'm about to say.
26:02
SPEAKER_01: Everything that has ever been attempted to fix something in any country's healthcare has been morally driven.
26:10
SPEAKER_01: AIDS, the breast cancer wars, Americans with disability, cancer survivorship, fertility rights, morals.
26:18
SPEAKER_01: We should be a better country, and this is what we deserve as tax-paying citizens and patriots and blah, blah, blah.
26:24
SPEAKER_01: Flag, flag, flag.
26:25
SPEAKER_01: The uncomfortable truth, the channel Al Gore, the inconvenient truth, is that morals don't matter anymore in the United States.
26:33
SPEAKER_01: What drives decisions is money and power.
26:37
SPEAKER_01: And how do you save money and shift power in a way that would actually benefit patients and remove the incentives for there to be these roadblocks for us to die more?
26:50
SPEAKER_01: That in my spare time, I was channeling a little Thomas Paine, a little Ralph Nader, maybe a little Scott Fitzgerald.
26:57
SPEAKER_01: I don't know.
26:57
SPEAKER_01: Like this some crazy people and maybe a little Capture of the Rye in 1984 or Will.
27:03
SPEAKER_04: I want to say thank you for founding Stupid Cancer.
27:07
SPEAKER_04: I think it's a movement.
27:08
SPEAKER_04: It's really helped a lot of people find their buddy, like you shared with us.
27:13
SPEAKER_04: And that organization continues to do really well.
27:17
SPEAKER_04: You moved on then to also found We the Patients, which has a different focus.
27:23
SPEAKER_04: Tell us a little bit about what you're most proud of with that We the Patients.
27:27
SPEAKER_04: I know you've done a lot of work challenging assumptions, rethinking healthcare through the patient lens.
27:33
SPEAKER_04: This has been conversations we had in something that you're very passionate about, and making sure patients feel heard.
27:39
SPEAKER_04: And this takes things to a new policy level.
27:42
SPEAKER_04: So you clearly saw in your experiences a gap and said there's work to be done here.
27:48
SPEAKER_04: Tell us what you're most proud of and what you're looking forward to with this group.
27:53
SPEAKER_01: So We the Patients isn't just my book.
27:56
SPEAKER_01: It is a startup that just came out of stealth for 18 months, working under several assumptions.
28:02
SPEAKER_01: And it's a genuinely new idea that I've been trying to prove isn't a genuinely new idea for 18 months, and it is a genuinely new idea.
28:11
SPEAKER_01: Focused in specifically on incentives, money, power, politics, and voting upstream.
28:18
SPEAKER_01: How do we dam up the river?
28:20
SPEAKER_01: In whose capitalist interest is it that we dam the river up and produce less harm?
28:26
SPEAKER_01: Policy accountability.
28:27
SPEAKER_01: Well, it's less about accountability.
28:29
SPEAKER_01: It's more like who becomes more wealthy when you destroy big insurance.
28:34
SPEAKER_03: It's really provocative what you're talking about with the incentives because when you look at systems, you're absolutely right.
28:40
SPEAKER_03: We look at logic and rationale and morals and all these, the purpose, the mission, but it's the incentives that actually drive behavior.
28:48
SPEAKER_01: Yeah, I got a lot of this from what Mark Cuban's been bitching about and what Ralph Nader did with the seatbelt laws in the 1960s and some other movements in other countries, specifically what happened to Slobodan Milosevic and how they ousted him from power using minimalist, nonviolent mechanisms of incentive-based societal gravitas.
29:06
SPEAKER_01: Again, student history.
29:07
SPEAKER_01: These things all kind of add up into this pattern.
29:10
SPEAKER_01: So, as a startup nonprofit organization, we are the country's first polling engine for patient and consumer sentiment on how health insurance has affected you as a citizen.
29:20
SPEAKER_01: It's never happened before.
29:22
SPEAKER_01: This isn't dollars political polling, who you're going to vote for.
29:25
SPEAKER_01: CNN wants to know what you think about this.
29:28
SPEAKER_01: It's an infrastructure-driven strategy where we can very easily, at a populist level, like with stupid cancer and like building movements, ask country anonymously, based on zip codes, based on trust, through downstream relationships, these astonishingly simple questions that always get over-intellectualized when it goes into pedagogy and policy.
29:50
SPEAKER_01: A great question we're going to be asking is what does EOB mean?
29:53
SPEAKER_01: Obviously, explanation benefits, but we're going to say eggs on a bagel.
29:57
SPEAKER_01: We can have so much fun with populist humor.
30:01
SPEAKER_01: We can tailor it to different communities, different education levels.
30:04
SPEAKER_01: We want to get absolute, wholehearted, full 465 district level consumer sentiment on how health insurance has affected your life for better or for worse, whether you're employed, whether you're self-employed, whether you're on the exchange, whether you're an employer, whether you're a physician, we don't care.
30:24
SPEAKER_01: It's anonymous.
30:25
SPEAKER_01: That's what we the patients is doing as a startup for the next couple of months.
30:30
SPEAKER_04: Well, that is hot off the press, Matthew.
30:32
SPEAKER_04: 18 months in building, that's a lot to build to move it forward.
30:36
SPEAKER_01: Yeah.
30:37
SPEAKER_01: We haven't even done a formal announcement because we're still waiting on a couple of things to just tie up loose ends and dot some I's and cross some T's.
30:45
SPEAKER_01: But the long game vision is again going back to this unprecedented concept based on what the National Rifle Association did, in that not to bastardize a constitutional amendment, but to organize people under a single issue, regardless of what else you believe.
31:01
SPEAKER_01: And our theory is that 40 to 50 million Americans are ready to join a nonviolent single issue bipartisan voter block organized around destroying big insurance, which gives us something we've never had as a voter block before, which is civic power in the states, which basically threatens re-electability.
31:23
SPEAKER_01: And you only need 4% to scare them, which is what the NRA is 4%.
31:29
SPEAKER_01: I think planned parent is 2.5%, ARP is 5%, because it's old people.
31:34
SPEAKER_01: We'd be 50%, at least at minimum, 10% of the country.
31:38
SPEAKER_01: The cancer community alone is 40 million people.
31:41
SPEAKER_01: That's census data.
31:42
SPEAKER_01: 20 million survivors, one person per person is a low idea.
31:46
SPEAKER_01: So that's the second phase of this.
31:48
SPEAKER_01: What happens to our politics, our economics, our incentives when we the patients can say we're the NRA for patients' rights times 10 and we're demanding this.
32:00
SPEAKER_01: And then the next part is what are we demanding?
32:02
SPEAKER_01: What is breaking a big insurance really mean?
32:05
SPEAKER_01: How does it work?
32:06
SPEAKER_01: It doesn't really matter right now about the how, because the what needs to happen first.
32:12
SPEAKER_04: So, Matthew, this is really incredible and obviously significant heart and time in building this.
32:18
SPEAKER_04: And certainly people can fill out the information when they see it.
32:22
SPEAKER_04: For those listening, do you have other advice given your journey as to what individual patients can be thinking of to help support, become influential in shaping healthcare and getting involved?
32:33
SPEAKER_04: And what advice would you give someone?
32:35
SPEAKER_01: So I have three things that I tell people.
32:38
SPEAKER_01: I keep it nice and simple.
32:39
SPEAKER_01: And this might be US specific.
32:41
SPEAKER_01: It might not be US specific.
32:42
SPEAKER_01: Number one is if you're ever on a call with your insurer, you tell them your lawyer is listening.
32:48
SPEAKER_01: You could be bullshitting, it doesn't matter.
32:50
SPEAKER_01: In the US, that's completely legal.
32:52
SPEAKER_01: Number two, or tell them that your uncle runs the local news station.
32:56
SPEAKER_01: It's so easy.
32:57
SPEAKER_01: Number two, goes back to one of the things that what the big insurance consortium Whatemar called them, a cabal?
33:04
SPEAKER_01: I forget what he called them.
33:06
SPEAKER_01: Either way, they expect you to not know how to appeal your denial.
33:10
SPEAKER_01: So they deny you on purpose.
33:11
SPEAKER_01: 80% of denials that are appealed are eventually overturned.
33:15
SPEAKER_01: There's still nonsense there, but 80% are appealed.
33:18
SPEAKER_01: If you appeal 80%, it'll be uh fixed up.
33:22
SPEAKER_01: But only 2% of denials are appealed, and that's the business model.
33:25
SPEAKER_01: So the second thing I tell people is you didn't go to appeal your denial university, and you shouldn't have to become an MBA in that.
33:33
SPEAKER_01: But that's the simplest thing you can do.
33:36
SPEAKER_01: And chat and AI actually can help you do that today in a way that it couldn't even a year ago.
33:42
SPEAKER_01: So AI will kill us all one day, but for now, use it to get you less screwed by your denials.
33:48
SPEAKER_01: That's number two.
33:49
SPEAKER_01: And number three is your horror story matters.
33:54
SPEAKER_01: Not your story, your horror story matters.
33:57
SPEAKER_01: You can't shame them, but if you aggregate enough horror stories, it becomes data.
34:03
SPEAKER_01: Because when they get sued and lose class action lawsuits for a billion dollars, that's a rounding error in their budget.
34:11
SPEAKER_01: But data is the most important asset that the patient community has never truly organized for a political purpose.
34:19
SPEAKER_01: And that's what We the Patient stands for.
34:22
SPEAKER_04: Well, I really appreciate the sentiment.
34:25
SPEAKER_04: It's almost a listen to your gut.
34:27
SPEAKER_04: I've had to live this in my own world.
34:29
SPEAKER_04: You know something is wrong.
34:31
SPEAKER_04: And to being dismissed or have incorrect diagnoses, you just keep going, but it's finding the right information at the right time.
34:39
SPEAKER_04: And I think there's a lot to be said about that.
34:41
SPEAKER_04: I want to say, Matthew, thank you for the incredible work that you're doing in this space.
34:45
SPEAKER_04: Thank you for sharing your journey, going from being told to get your infairs in order at a young age to this movement that you've found a buddy, helped start helping other people, and all the work that you're doing with We the Patients and moving forward.
35:02
SPEAKER_04: To end on a fun note, I believe you have a family trip that's coming up.
35:05
SPEAKER_04: So tell us a little bit about what's around the corner.
35:08
SPEAKER_01: So my parents, my dad's still around, 80, my mom's 76 or 77.
35:13
SPEAKER_01: They realized that living in New York City wasn't for them anymore, which makes a lot of sense.
35:18
SPEAKER_01: My brother lives in South Carolina.
35:21
SPEAKER_01: We both didn't want them to die in Florida alone.
35:23
SPEAKER_01: So they moved near my brother in Myrtle Beach, and we're going down to visit them in a couple of weeks, and my kids are thrilled.
35:29
SPEAKER_03: Wonderful.
35:30
SPEAKER_03: How old are your kids?
35:32
SPEAKER_01: I have 16-year-old boy-girl twins.
35:34
SPEAKER_04: Oh, wonderful.
35:36
SPEAKER_04: It's amazing.
35:37
SPEAKER_04: Well, thank you for sharing, Matthew, and thank you for all the concepts and ideas and ways to get involved that you've shared today.
35:44
SPEAKER_04: And I hope people look up your organization and reach out as well.
35:48
SPEAKER_01: And just a plug from my book with the patients understanding, navigating, and surviving America's healthcare nightmare.
35:53
SPEAKER_01: But I'm sure anyone in any country could find useful nuggets to help them get less screwed.
35:58
SPEAKER_04: Thank you, Matthew.
36:00
SPEAKER_04: Thank you so much.
36:05
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36:10
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36:17
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36:28
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36:39
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36:42
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36:49
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36:51
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