#1938 Good at Talking to People - Part 1
Good at Talking to People (Part 1)
Elizabeth Maddock Dillon turns the microphone around. An English professor writing a book about sugar interviews Scott about how the podcast began — the diagnosis, the accidental blog, and the day Katie Couric told him what he was good at.
Jump to a moment
- The roles are reversed. Elizabeth Maddock Dillon, an English professor at Northeastern diagnosed with type 1 at 48, is writing Sweetness and Ruin: A History of Sugar from the Plantation to the Diabetes Epidemic — part memoir, part history. She approached Scott at ADA to interview him for it; he suggested they record it. So this is Scott answering the questions for once.
- The diagnosis, told at length. Scott walks through it: Arden’s second birthday with a pony in the backyard, a misread bout of hand-foot-mouth, a car seat he reached into on vacation that was soaked through, and a meter that read HI. He describes standing in a 24-hour pharmacy wondering whether, if he never left that aisle, it might not be true.
- The blog was an accident. Frustrated that a JDRF walk raised only about a thousand dollars, he emailed 500 contacts a play-by-play of a day with type 1 — then realized he shouldn’t have and moved it to a link. He didn’t know it was a blog until a woman in England wrote to say it was helping her. His takeaway wasn’t flattery; it was that a stunt reached England in thirty days, so the ceiling was limitless.
- He deliberately refused the prevailing tone. At blogging conferences he felt like an outsider — a father writing about raising a child with type 1, not a person with it. His objection to much of what he read: it was woe is me rather than aspirational. His framing then and now — it’s nice not to be alone at 2 a.m. treating a low, but it would be nicer if the blood sugar weren’t low and everyone were asleep.
- The podcast exists because of one sentence. After a book deal he talked his way into (his wife’s response: “you don’t read”), he promoted it himself onto NPR and Katie Couric’s show. Backstage, Couric stopped him to say he was really good at talking to people. Years later, watching readership collapse as the internet shifted to images, that sentence came back to him — and he bought a microphone.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed — the series discussed here as due for a remaster.
- Diabetes Pro Tip series — Episodes 1000-1025 — the management foundation: settings, insulin timing, and food impact.
- Defining Diabetes series — Short episodes defining the terms people hear but don't have explained — an idea Scott credits to a Sanofi contact's online glossary.
Every word of the conversation
Cold open & sponsors0:02
Friends, we're all back together for another episode of the Juice Box podcast. What do you say we get you over to t1dexchange.org/juicebox and have you fill out that survey? Are you an adult? Are you a US citizen? Do you have type one diabetes?
Your answers on that survey are gonna help to move type one diabetes research forward. It will not take you very long. It will be a big help to me. It'll be a big help to you. It will help the community.
T1dexchange.org/juicebox. Hey. Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. This episode of the podcast is sponsored by MiniMed and the Kontoor next gen blood glucose meter.
MiniMed, of course, the innovators behind the MiniMed flex system, a small, sleek, and discreet insulin automated delivery system controlled from an app. Nothing comes close to freedom you can feel. To learn more, visit minimed.com/juicebox. There is one blood glucose meter in this house, the Contour NextGen blood glucose meter. That meter is on my daughter's person right now and at all times.
It is incredibly accurate and waiting for you at kontoornext.com/juicebox.
The professor with the microphone1:36
My name is Elizabeth Maddock Dillon, and I am an English professor at Northeastern University of Boston. I'm a type one diabetic, and I'm writing a book that is part memoir and part history. The memoir is about my own experience being diagnosed as a type one diabetic at age 48, and the history part is about the history of sugar. So the title of the book is sweetness and ruin, a history of sugar from the plantation to the diabetes epidemic. And I am here because I wanna interview you today, Scott, because you have made such a big difference in my life.
Juicebox podcast has made such a big difference in my life, and I wanted to learn more about how it came to be and and your thoughts on making it.
Wow. I'm touched and excited to do this with you. You approached me at ADA and were telling me about this. And you said, you know, could I could we get some time for me to ask you some questions for the book? And I said, why don't we just do it and record it?
So I appreciate you being willing to do that. And, I mean, I guess I should just turn the podcast over to you and let you go. I can I ask you a couple questions first?
Of course.
Have you ever written a book before?
I have. I've written academic books, but this is my first book that is for a general audience. So the academic books tend to be fairly, shall we say, academic. But this is really written for a broad audience, and and I hope will be of interest to a lot of people, a lot of diabetics, and a lot of people interested in the the history of sugar.
Yeah. That's that's wonderful. Alright. Well, let's pretend it's your podcast then, and you can start asking me questions. Whatever you want.
I'll just shut up and answer. Go ahead.
Okay. So I, again, would just like to say thank you to you because the Juice Box podcast really changed things for me a lot. And the the reason why it changed things is because it it gave me the kind of concrete information and advice I needed about how to manage my blood sugar that I really was not getting from the doctors that I was seeing. And I feel like it's made a difference for me and for so many other people. So I'm interested in in both your own history and also thinking about why it's so important to have this kind of information.
So first question is, could you tell me the origin story of the podcast?
Yeah. Absolutely. And thank you. Those are very, very kind words, and they they they make me feel good about the the time I spend working, especially because my my days seem to be I I seem to get it with the what do say? The gifts with one hand takes with the other.
Mhmm. I just got back from taking a group of people on a cruise, and I woke up in the morning to a note from one of the people just letting me know how much the cruise was valuable to them and how their their child was having a better outcome already from being around the conversations and everything. And then I I swear to you, an hour later, somebody online was calling me. Like, you know, I was I was basically the ruination of the world. And I thought I thought, wow.
I I wish I wonder which one is is true. Neither? I don't know. So, anyway, it's nice to hear something nice, and I appreciate it. How did all this begin?
I mean, how do you want me to go back to I I mean, I can give it to you from the very beginning. You you'd like to have notes that you can really, like, dig into for your book. Right?
Yeah. And I would love to hear, you know, starting from Arden's diagnosis and what that was like for you and then how I'm assuming that, you know, that that is is part of that origin story and what led you to feel that making a podcast would be valuable.
Before: a pony in the backyard5:44
Yeah. Sure. Well, I mean, no differently than most people who come on here and share a little bit about the time that they or their child were diagnosed. It was you know, our lives were going along pretty well. We had dug ourselves out of some holes that our parents and our situations put us in.
My wife and I had a son. He was really awesome. And we decided to have another baby, and she was equally awesome. We were just living our lives. You know?
We had bought a little crappy house that had a nice little piece of ground out behind it. And for Arden's second birthday, we lost our minds. You know? We I think a guy came with a pony and gave the kids pony rides. The the Philadelphia zoo showed up with three I think there was an eagle here.
I think there was definitely a snake and an armadillo, and I believe there might have been an eagle or a hawk or I don't know. A a bird of prey. And just everybody I'd ever met my entire life was in that backyard. You know? And we were having the greatest time.
I can picture Arden on the pony. And even to the point where you guys all don't know me that well, but having a pony walk around in my backyard ruins the yard, and that's not a thing I would normally do. And on that day, I just I didn't care. It was just it was it was really Elizabeth, it was almost a celebration of Arden and a celebration of how far we had come all at the same time. Right?
And, I'm going to say the Kontoor Nextgen blood glucose meter is sponsoring this episode of the Juice Box podcast, and it is entirely possible that it is less expensive in cash than you are paying right now for your meter through your insurance company. That's right. If you go to my link, contournext.com/juicebox, you're gonna find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger, Meijer. You could be paying more right now through your insurance for your test strips and meter than you would pay through MyLink for the Contour Next Gen and Contour Next test strips in cash. What am I saying?
My link may be cheaper out of your pocket than you are paying right now even with your insurance. And I don't know which meter you have on you right now. I can't say that. But what I can say for sure is that the Kontoor Nextgen meter is accurate. It is reliable, and it is the meter that we've been using for years.
Contournext.com/juicebox. And if you already have a Contour meter and you're buying test strips, doing so through my link will help support the podcast. Let's be honest. Most of us would love to spend less time thinking about diabetes. That's exactly what MiniMed had in mind with the new MiniMed Flex system.
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Somewhere along the lines of a week or two later, Arden got sick, but she had been sick previous. So previously, we were told that she had hand, foot, mouth. Mhmm. And it it appeared I mean, we didn't realize that it appeared it came back. She'd gotten sick again.
So it's after her birthday. We're sort of running around. We have a family vacation coming up, and I'm just making the rounds getting every because I'm this I'm a stay at home dad. So I'm the one, like, getting the laundry done, you know, prepping the house to leave, that kind of stuff. And this was a family vacation with my wife's side of the family.
So I took Arden to visit with my mom before we left. She's just two years old. Cole's in school. We take a little ride. I meet my mom at where she works, I bring the baby in.
I'm like, hey. We're leaving in a couple days. Just thought you might want to see Arden a little bit before we go. And then we get out to the car to leave, and I used to have a it was an SUV, and it sort of had a back gate that folded down. And Arden needed her diaper changed.
And I I laid her on the back gate, and it's so much different when you're, like, a stay at home dad. Like, ma. You know what I mean? Like, guys do stuff like that in places you don't expect, like, in parking lots and things. And I take her diaper off, and the the bowel movement is is bizarre.
It's like little round balls, and I'd never seen them look that way before, obviously. And the coloring was wrong so such that it made me, like, squeeze it. Like, I not with my fingers. I used the diaper. I just wanna say.
But they broke apart like dust. Wow. And I called her pediatrician, like, right then and there, and I brought her back. And he said, she has hand foot mouth again. And I remember him saying, that's really odd.
They don't get that twice. And then when I asked him to expand, he said it's like he's like, it's like chickenpox. Now you're like, get it, then you don't get it again. And I was like, okay. And I none none of us knew what that meant.
You know what I mean? But she seemed okay otherwise, and it was one of those, like, well, we'll see what happens things. Anyway, handful of days, week later, I don't know the exact timing, but it wasn't too long. We were in a car, in that same car, driving south to Virginia Beach. And about an hour outside of the house that my mother-in-law rented, we stopped for gas and drinks and stuff.
And my wife got one of those giant drinks, like the ones where you wonder, like, who buys those? You know what I mean? And not too long into the the the the last hour of the drive, Arden wants the drink. She had been off bottles for not long. We gave it to her and didn't look back.
We're just driving and music's on. It's warm out. I remember the windows being down, this idea that we had a week off that we like, that our lives were moving. You know what I mean?
The car seat full of water12:01
Mhmm.
Yeah. And we got there, pulled up in the at the house. Kelly started taking coal out of the car in bags, and I went to get Arden. And I I've said this before, but I reached down into the car seat to unbuckle the the buckles, and my hands went into water. Like, don't mean I don't yeah.
Like, I don't mean like a little. Right? I mean like submerged. And Wow. I thought, oh, she spilled this drink.
That was the first thing I thought. It was like this flipping like, oh gosh. We just got here. I gotta take this seat out of the car. I hope it's not in the seats of the car.
Like, you know what mean? Like, this whole thing. So I I pull her out. She's like I'm like, Kelly, here. Like, she's dripping.
You know? And I I unbuckled the whole chair because I I it's so, like, egregious. I'm just gonna, like, carefully take the chair out and dump it on the ground. And it felt like I threw a bucket of water on the ground. And then it hit me that it wasn't the drink that was in the seat.
It was it was urine. And I was like, well, that's crazy. Right? Like, absolutely crazy. But then you start doing the things that everybody does.
Oh, she just got off bottles. She's drinking more. Maybe this diaper doesn't blah blah blah. Do we have to get a better diaper? Do we you do all the stupid things that don't make any sense.
You know, they're not excuses. They're just like you're you're faced with something.
You're trying to make sense of it.
Yeah. That you've just never seen before. You know? And so you start going to common sense things. It would be crazy if, like, I walked outside, felt the sun on my skin, and thought, I probably have rectal cancer.
Like, you don't you don't like, you know what I mean? Like, you don't jump to, like, weird conclusions. So we're there a day. We try to go to the beach. Arden's sick.
She doesn't wanna go. I stay behind at the house. Next day comes, every I said I everyone went to the beach. I stayed back with her again. I tried bringing her out to the beach.
She stood there lifeless. I took her back. All she would do is eat and sleep. I think maybe the second night we were there, again, the whole family went to the beach. I stayed in the house with her.
And later that night, like, the sun went down and there was, like, an observatory nearby or something or a preserve maybe. And I said to Kelly, like, why don't the four of us go for a walk at the preserve? It's cooler now. The sun's down. And we're we're out there and everybody's trying to have fun.
Everybody's trying to, like, get Arden to, you know, like, joosh up a little bit. You know? And she just stood there. Like, she just stared and she stood there and I can picture her in, like, this little pink pair of pants with like a blue sweater on and and she's just so little. You know?
And we get back to the house. That didn't work. And six hours later, the whole family's playing a board game around this giant dining room table. Kelly's still in bathing suit, she's holding Arden. Arden's asleep on her.
And I, like, kinda talk across the room. I said, hey. I forgot to tell you something. Like, everybody's talking and having a good time and whatnot. And she looked at me and I said, I I forgot to tell you today that I thought Arden's breath smelled weird.
“I thought her breath smelled weird”15:10
She said, how? And I was like, I don't know. It was, like, metallic maybe or fruity. I'm not sure. And then Kelly's face just, like like, it appeared to, like, slide off her skull.
You know? And she just goes like, Arden has diabetes. And and then from there, you know, we did the thing. People have probably heard me talk about before. It's the middle of the night.
Went to a twenty four hour pharmacy to get a meter because we were you know, the Internet wasn't as prevalent back then. We had to steal Wi Fi from the house next to us to look up the signs and symptoms of of diabetes. And I remember finding a list of five things. I forget what they were. But the last thing was, like, with a blood sugar meter.
And so I went to get a meter. I found a twenty four hour pharmacy. And I think that that's the first time that all of this, like, hit me. And I I stood in the pharmacy. Like, I I found the meters.
Standing still in the pharmacy aisle16:09
I stood in front of them. I don't know what I was shopping for. You know what I mean? Like, so I'm trying to make sense of it. I figure out which one I'm gonna buy.
And then I think, well, she she she might have diabetes. If I just stand here for the rest of my life, will will that not be true? Yeah. And I really considered for a second just living my life in that aisle feeling like it would freeze time. You know what I mean?
Yeah. Absolutely. Yeah. And, obviously, that wasn't actually gonna work. Would have made a great Black Mirror episode, but it it wasn't actually, still patent pending.
That's a great idea. Nobody steal that from me. I live my whole life in the, right, in the pharmacy, and people come in and out. I get to experience their lives and do their conversations. This is easily an independent movie from the nineties.
Where's Kevin Smith when you need him? Let's make this one. Jeez. There's references all over the place. No one knows.
Anyway, Elizabeth, I go back, and we check her blood sugar, and then we head to the hospital. And, you know?
And what was her blood sugar? Do you remember?
It was high because I said to my wife I have the same dumb story everybody else has. I said to my wife, how nice is this thing? It says hi to you before it gives you the number. That's exactly that's what I thought was happening because it said HI.
Oh god.
Yeah. Wow. So I think on that meter, that meant over five hundred.
Oh my goodness.
Yeah. And she weighed at that point, we thought she weighed nineteen pounds, but she, by then, weighed seventeen. We didn't realize at the moment. Although looking back on it, it's insane not to notice the weight loss. She looked like a she looked like a runway model in the middle of the seventies.
You know what I mean? Like, she looked like she had a you she she looked like she had a heroin addiction and was smoking cigarettes twenty four hours a day. She was so thin. But, like, you don't see it in the moment. You know?
Anyway, we go to the hospital and do the stuff. They take her from us, and it's just it's debilitating. You know? I I I've I've said it so many times. I I feel weird just saying it now because it feels performative, but I really mean this.
After they took her from us, we had to go into, like, a little like, a family room, but it was to call it a room was even ridiculous. Was like a closet with, like, a two seater, like, plastic couch in it. You know? And my wife and I sat next to each other. My wife's still in a, like, a bikini with a sarong.
And we laid together, and I I I swear I could've I felt the desperation, like, like, the sadness, like, through her skin. I don't know if that was just me or what it was, but it's not a feeling I'd ever felt before. Like when I touched another person, know, yeah, I don't wanna you know, when you're you're close to somebody and you hold hands or you make love even or anything, like, when your skin touches, like, there's feelings that come from all that stuff. Yeah. I had never felt despair before through a person.
I said it was the first time. I don't know if it was mine or hers or ours. I can't I can't tell. I didn't know. You know, you fast forward ahead and we come home.
A thousand dollars, and not enough19:24
And I don't know how long it is before I realized that there's something dire wrong with my kid that I can't help. And it occurs to me to try to find somebody who could. And, of course, I identified a JDRF back then, and we, you know, went to a walk and tried to raise some money for the walk. And I I think I raised, like, a thousand dollars or $1,100 or something like that, but I really, like, kinda, like I beat the bushes. You know?
I went out. I explained to people what was going on. And then when it was over and I only had a thousand dollars, I thought, wow. Like, people don't understand this. Like, I I kept thinking, like, if they understood it, I'd be carrying around a billion dollars to give to the JBRF right now.
You know? And so that, you know, that that year happens, and it's 2006. And around 2007, I still feel like I'm not doing enough, and it occurs to me to, like, try harder with the walk. And I did something that I didn't call day of diabetes, and but I I just woke up one morning to an email, like, you know, contact list of over 500 people. And I wrote them a note, all of them, in the morning.
The emails nobody asked for20:41
I said, you know, our next type one diabetes, I'm gonna be collecting money again for JDRF. Today, I'm gonna send you an email every time we have to do something with type one so you can understand what a day of Arden's life is like. And I sent the first email and the second, the third. By the time, honestly, by the time noon came, I, first of all, realized I didn't ask any of these people if they wanted these emails. But just to realize if you're listening, have to realize the Internet was different back then.
We didn't know about stuff like that. And, anyway, I I sent the emails out, and then I apologized to them. And, you know, I spent the whole morning trying to figure out a different way to do this. And I just I had a an iMac computer for Apple geeks. It was the old like, the lampshade.
It's really cool. Like, little round base. And, anyway, they're great computers. They don't make them anymore like that. And I was picking around on it trying to figure out another way to do thing other than to bombard people with emails.
He didn’t know it was a blog21:40
And I I happened onto a program called iWeb that promised that you could put your thoughts on the Internet. And it was a blogging platform. I didn't really know that. Being, like, candid, I didn't know it was a blogging platform, but I used it. And I sent out one more email, and I said, hey.
Listen, guys. I realized I shouldn't have done this. I'm really sorry. If you wanna keep following along, you can go to this link, and I'll I'll post this stuff there. Which, by the way, I know now sounds like just like an like an obvious thing to do.
But I'm telling you that back then, like, blogs weren't really a thing. Like, there were, like, some WordPress blogs, and it was taking off, but it wasn't prevalent. You know? And I kept doing that. I started learning how to, like, put a picture in with it, a title, and, you know, write a little something, and I kept making it.
I did not have a counter on it, so I didn't know if anybody was looking at it. So, like, WordPress, you could do page counts with or click v or view counts or something, but iWeb didn't offer that. So I genuinely had no idea if anybody was looking at it or not. I was just making it.
So so let me ask you a quick question. When you say you felt like you weren't doing enough, did you do you mean you felt like you weren't doing enough for Arden, or you weren't doing enough for people in general with diabetes?
Yeah. Arden.
Arden.
Okay. I wasn't thinking about anybody else.
So you you felt like if you raise money for JDRF that, they would, do more research that could help her situation?
You don't know me, but I don't generally have a feeling that I can't accomplish anything. Okay. Nothing seems nothing seems out of the question to me. Like, I think that if I put if I had enough time and attention and sometimes money, I don't imagine anything I can't do. You know?
Okay. That tracks?
Yeah. Okay. You've been listening long enough. Yep. And so I I joke with people all the time.
Like, you should be very grateful. I'm a I'm a I'm not a crappy person because I have the kind of the motivation that turns makes cults and, you know, steals your money on on pyramid schemes. Like, I've got that kind of energy. I just use it for good. So but I could definitely like, I I swear to you, I know this probably sounds crazy, and I'll I swear I'll get back to the story really quickly.
But twelve years, 1,900 episodes. I think I am one of fewer than 200 people who has accomplished that many podcast episodes and that much time making a podcast. I have a online community of hundreds of thousands of people. And if you get me into a quiet room and ask me how I'm doing, I will let you know all the ways I'm failing at this. But I don't feel failure.
It's just an honest assessment that will make sense, hopefully, contextually right here, that I don't have enough tools. I don't have enough supplies. I don't have enough hands. Because if I did, I'd I'd reach every living person with diabetes. Like, I know how to do it.
I just don't have the the structure to do it with. Does that make sense? So I don't feel like a failure. I just know there's
Yeah. I mean, it it makes sense. I I was trying to go back and listen to episodes that I haven't heard, and I quickly realized there was no way I was ever catching up.
Well, if you try hard enough, Elizabeth, then don't break my
heart I know. Head.
Okay? And some people do.
Clearly, I have the wrong attitude.
So yeah. You don't have you don't have a can do attitude like I do. Okay? Loser. Now go write your books.
No. So so so anyway, like, I I just don't nothing feels like enough because I'm trying to help Arden. Like, that they're like, I don't know another way to put it. Like, I I grew up flat broke. I own a house now.
Right? Like, I can afford my food. I can pay my bills. No one taught me to do that. I just wouldn't not let it happen.
Does that make sense?
Absolutely.
Okay. Alright. So I feel the same way about Arden and her health. I eventually end up feeling that way about all of you too, but I guess that'll come out in the conversation. So a month into writing on this this website that by the way, I think this is important to note.
It wasn't like ardensday.com or juiceboxpodcast.com. It was literally iweb.something.com forward slash, and then I'm not kidding, maybe 50 characters, ampersands, and, like like, you guys don't know about the Internet if you're if you're too young, the way it started. So, like, you couldn't Google it. It wasn't findable through Google. It you had to literally have this link.
If you did not have that link, you were not on that blog, which, by the way, I didn't know it was a blog still, until a month later when I received an email from England. And this woman in I don't remember where in England, but she sent me a note, and I don't know who she is because back then I didn't know to keep stuff like that. She said that my blog is helping her and her daughter, I think. Her and her child. I'm not sure if it was a son or daughter anymore.
A stranger in England27:10
And then during that conversation, she said about how much my blog was helping her. And I thought, I don't have a blog. That's that that was my reaction when I when I saw that. But my takeaway was that I bombarded 500 people with an email, and I don't know anybody who lives in England. That was my takeaway.
I do not know anybody who lives in England. I do not have an email address from anybody who lives in Europe. My dumb stunt reached England in thirty days, and then that was it. Then I was off to the races. Like, I once told my wife, don't know how to make a million dollars, but if somebody would give me a million, I'm pretty sure I can make 50.
And, like and that and that's how I felt when I realized that woman was was in England. I was like, oh, son. Let's go. Like, I I
That you're re you're really reaching people.
Yeah. Oh, not just that, but, like, it's limitless. It's from a computer. Don't I even have to go build a wall or dig a hole. Are you kidding me?
I know how to work. You know what I mean? Like, I I can do this. So
You're making me think of that that dial up noise.
You know? My god. Listen. You don't know torture till you try to download a photo on dial up, and thirty minutes into it, realize it's not the goddamn photo you wanted. And it's only an eighth downloaded, and you gotta stop it and start over again.
And then when you click on the next one, realize, oh god. This might not be the one I want either. So you know that pain. You don't know the Internet. Yeah.
So I just start going. I just I I open up I probably have this my whole life, but there's a pathway from my heart to my mouth that doesn't have checks and balances. Right? So I just start writing about that. But I quickly realized I can't I can't make it about Arden.
And no disrespect to people who do this, but, like, I didn't wanna write a blog about my daughter. I wanted to write a blog about what it was like to raise a child with type one because I didn't think it even back then, I was like, I don't know. I've never seen one child star turn out well. Like, I don't wanna put this flashlight on her. You know what I mean?
So I started writing what it was like to be a stay at home dad with a daughter with type one diabetes, and I just kept going. And for years, I did it. And this is gonna be before, like, the the advent of, like, Facebook too much. Like, I was just writing that blog. And some some pharma companies, insulin companies, and device manufacturers back then, like, they they were just starting to understand, I think, the power of what was going on online.
And they're they'd have a couple of, like, blogging conferences. I wouldn't get invited to those. I think I was, like, maybe one of the only men doing the thing. And but eventually, my thing just kept getting, like, I guess, more and more I don't know even know how to measure it. Like, I wanted to say bigger, but that's only theoretical from my perspective because the damn thing didn't have a counter.
Thirty-sixth out of four thousand30:10
Until one day, I got a note from a woman named Laura. I won't give her last name, and she worked at Sanofi or Sanofi, depending on which snooty way you wanna say it. And she asked me if I'd come in to their New Jersey location for a lunch meeting about my blog. And I don't remember when this was anymore, but it was a number of years into it. Anyway, we get to the cafeteria at Sanofi, not to a luncheon.
It would have been nice to go to a restaurant. I just wanna point out, but that's okay. We were in the cafeteria at Sanofi, and we sat down. And she put reams of paper in front of me. Again, this is how long ago it was.
Like, piles, stacks, and folders. And she starts saying, we've been looking into diabetes blocks, and, you know, we've been doing a lot of research on them. And I I pointed to all the paper, and I said, that's all the research you've done on diabetes blogs? And she said, no. That's the research we've done on your blog.
Was like, I thought, how is that even possible? There were so many pieces of paper there. Anyway, she goes on to tell me that there are now over 4,000 type one diabetes blogs in the world. 4,000. But she doesn't but that's not how she tells me.
She tells me by saying this, would it surprise you to know you have the thirty sixth most popular diabetes blog in the world? I said, sharp as a tack back then I was. I said, that would only not surprise me if you told me there were 37 blogs. And she said she and she said, there are over 4,000. And I said, well, then, yes, that surprises me.
That was it. That's how I found out I was a popular blogger with a with a one of one of those plastic lunch trays in front of me at the Sanofi cafeteria with a lovely lady named Laura who was trying to build a diabetes community online. She was tasked to do that.
Did you get yourself a T shirt that said I'm 36?
No. I didn't. Because I hope you know from just this half an hour conversation two things. A, this isn't gonna just take an hour, and b, I all I thought was how the hell did 35 people get in front of me? Exactly.
Yeah. Yeah. Once I once I wrapped my head around. Once I stopped being, you know, like, what's that thing when people pretend to be, like, humble? Once I did that once I was doing Humble brag.
Yeah. Once I once I was done going like, oh my god. Only if there's 37, I thought, how are these other 35 sons of bitches getting ahead of me? And so so, anyway, like, that's it. I started to understand my my reach, I guess.
And then it just started to, like, come together. But I want people to know back then, like, there were people, like, taking free products to write blogs. I didn't do any of that. Like, I just I just wrote the blog. I didn't I I actually told my wife, like, I wouldn't even take, like, a Google Ad Sense ad because I thought, well, then how will people know, like, why I'm writing the blog?
You know?
Like What did what does Sanofi want from you?
At that point, I think they were just fact finding. They were looking for ideas. By the way, everyone's always coming to me. Forget Sanofi, and don't and don't put this on one person or another. This happens to me all the time.
People get me on a call and then ask me what they should do. I'm like, am I consulting for you? Feel free to send money. You you you know what I mean? Like, they don't know.
They they they have an idea. She she she worked really actually, she was lovely. She tried really hard. I think Sanofi actually they bailed on it at some point. But actually, one of the things she did I should give her credit for.
One of the things she did is why the defining diabetes series exists, because she created an online dictionary for diabetes terms, and I thought that was brilliant. So I stole that idea and called it defining diabetes and did, like, short episodes, like, defining each term in the podcast. Thank you, Laura. That was real it's a it was a great idea. People don't understand the terms they're throwing around in their own lives very often.
The rooms he didn’t fit in34:23
So, nevertheless, I started getting invited into blogging conferences, and it soon became obvious to me that I was either going to fail miserably or be the only one who succeeded. Because everything I said in those rooms was met by people going like, weird guy. Don't get him. Don't like it. That was the vibe I got back mostly from people.
My favorite story is that one of them I don't know how many hundreds of bloggers they invited to this thing. But they went around the room and everyone introduced themselves. This is gonna sound like a brag, but I don't really care. And they went around the room. Hi.
I'm Elizabeth from doing diabetes. Hey. I'm Bev from diabetes defines me or I'm like, everybody was like know what mean? It's like sweet and sugar and blah blah. It's going around the room.
Right? And they got to me. I was like, I'm Scott. I make a blog called Arden's Day. And somebody from the next table over said, Arden's Day.
How are they gonna know it's about diabetes? And I said, how are they gonna tell the rest of you apart? And then people didn't like me again. So I was like, okay. I think I was I was definitely in a subset because I think people with type one didn't like that I was writing about diabetes and I didn't have it.
And I get that, but I wasn't really writing about diabetes again. I was writing about being the father of a child with type one. But but neither here nor there. People were cordial. I don't want you to, like, misunderstand, but I was not brought into any inner circles.
I wasn't part of the part of the fun. You know what I mean? So but I didn't care. That's not I I couldn't possibly have cared less. I chugged along, did my thing.
And then were what were they doing that was so different from what you were doing, would you say?
I I don't mean to I I I certainly I think everybody's stuff has value, and they're if they find somebody and it helps them, I'm I'm all for it. But the biggest takeaway I had back then was that I felt like everybody was woe is me or this is so hard or it was always that. It was never aspirational. It was always, like, let's all get into a boat and fill it with our tears and see if we can sink it. It's how, like, the stuff felt.
And the more Yeah. The more it was like that, the more popular it ended up being sometimes. And I just had this I had a very clear thought. It sticks in my head. I think it all the time while I'm making this.
It's nice to be up at 2AM treating a low and realize that you're not alone, that there are people all over the world doing the same thing. But wouldn't it be nicer if the blood sugar wasn't low and we were all sleeping? That's that's how I thought about it. Like, I I like the the I don't know. Like, you know, written from the heart, this is hard.
I'm not saying it's not. Like, please don't get me wrong. I'm not saying it's not hard or it's not sad, and I've got enough tears to fill a boat. I'm not you know what I mean? Like but I don't know what value that has twenty four seven.
And then I started noticing that there was this thing called diabetes blog week, this lovely woman put together. And I'm gonna forget her name too. Damn it. I'm so sorry, everybody. I'm so bad with names.
But I decided to get involved in it one year where the I think they gave you a writing prompt one day for five days, and everybody wrote to the same prompt. And there were a lot of diabetes blogs. And I wrote my thing, and then I thought, oh, let me just bang around, look, and see what everybody else wrote. And then I realized everybody wrote the same thing. And then that made me think, well, why do we need 4,000 of these if everybody's gonna write the same damn thing?
Mhmm. So I am gonna make sure that no matter what I say, it's not what somebody else would say. Right? Because that that that was another moment for me that that I I would call, like, seminal for me.
You know, when I when I was diagnosed and I was first trying to figure out figure out, like, you know, how do I manage this unmanageable thing and all of the elements of it. And I I just I made this rule with myself that I wasn't going to complain in my head to myself. I wasn't gonna I like, every time I said to myself, oh, this is too hard. This sucks. I was just going to say, okay.
Stop it. And the reason for that was that I just felt like I didn't that wasn't gonna help me, and I it wasn't the way I want to live my life in my head. Yeah. You know?
Yeah. I think the therapist would call that, like, having positive self talk. Yeah. Yeah. Yeah.
But if you if you listen. I'm in the middle of a bad professional moment right now. It's like it's a back end thing, and I could easily I could easily stack up five very real thoughts in my head and make myself sad about it. But instead, I'll stack up five paths forward, and I'll set upon doing those things. And, you know, I just I just shared with Arden this morning.
I said when I I I always feel bad about like, when you see people who are struggling, it's it's terrible. It feels hard to, like, to help them. And I I said to Arden, like, I always say the same thing, I hope it's valuable to people. When you're going through something terrible, I find it valuable to look back at other terrible things I've gone through that are over now and to tell myself that this thing that I'm going through right now is not good, but one day I won't remember it. And that that's sort but but if you sit and think about it constantly, you can't leave it.
It's it's like that you know, it's a I I don't know. I don't read enough, but, you know, there's a lot in literature about, like, rooms you can get into that you can't get out of and time slows down and you never leave. You know what I mean? Like, it's that that's what that is. Like, you just have to set a path out and take a step on it.
And then take another one, and they suck, and that's fine. But one day, the path will be behind you and you're on your way again. So, anyway, I just didn't listen. If if you want me to be critical, I didn't like the tone that a lot of those blogs set, and I didn't wanna be a part of it. What I wanted to be a part of was this is how this works.
This is how you get out of it. Here. Do these things. Let's get free of this thing. Right?
I always tell people I have the worst business model because my business model is to find you, which is incredibly hard, and then talk you into believing that I might have something valuable, which is also incredibly hard to do. And then my goal is for you to get so good at it that you leave me and don't listen to my thing anymore. I'm I'm the worst business person in the freaking world. I ended up I this no. You know, I'm not gonna tell you that.
Never mind. And I was about tell you about a private conversation I had with an advertiser, and I'm pretty sure that's not a good idea. And so but I'll I'll prob by the way, you don't know me. Maybe you do by now, but I'll probably end up telling you that story twenty minutes from now. So so, anyway, I have another moment where an acquaintance of mine, Leanne Callantine, gets to write a book.
“You don’t read” — the book deal41:36
It's it's called Kids First Diabetes Second. And she wrote a diabetes blog that was pretty popular back in the day. Wish I could remember the name of the blog. I don't think I do right now. Anyway, she wrote a book, and she contacted me and asked if I would write a sidebar about she liked something I'd written about, like, how to deal with schools around diabetes.
She wondered if I'd write a sidebar for her book. So I did. And then not long after, her publisher contacted me and asked me. I think they just called me to see how I wanted to be attributed in the book. And just so you guys know, like, I to to to know how little the popularity of it means to me personally, even though you're not gonna believe that if you're listening, I really only care about making it bigger so that it helps Arden.
And even that it helps all of you guys is secondary to me. I'm happy about it, but I'm trying to help Arden just so everybody understands. I'm still doing that thing I set out to do. Anyway, they got ahold of me, and they were like, you know, how do you wanna be attributed in the sidebar? And was like, how don't I just put my name on it?
And they're like, well, don't you want, like, a web address in there? I was like, yeah. It's not really necessary. And they they were like, no. Don't you should put your URL in there.
I was like, yeah. I said if you guys want to, I don't care. Like like, it's I just I thought it was nice, but my real takeaway was that's not actually gonna help anything. Like, even when you guys like, when people make posts online like, I'm watching this one organization right now that does diabetes stuff. They are overspending on production, making this really great looking stuff.
No one's looking at it. And then and then their their reaction to no one looking at it instead of stopping to do it is to just post it more. And I just sit here giggling to myself. I'm like, no one understands how this works. Like, putting my URL in a book sidebar is not gonna make my podcast bigger.
Like, it it it makes me more, what's the word, legitimate in the space, but it doesn't reach people. And that's what I care about. Like, I get like, nobody reads.
Sorry. And what reaches people?
People who need the podcast so that they can come on and tell their stories so I can learn something, and then everybody else will hear it. And maybe my kid will benefit from it. Is no one paying attention to what I'm doing, Elizabeth? It's so like like, I just need people to come on to build this compendium of ideas. That's how I think about it.
And and, obviously, now twelve years later, you guys all mean more to me than you can possibly understand. And I'm thrilled at how far it's reached and and who it helps. I I'm about to put up an episode with a mother from Zimbabwe who listens to the podcast. So it's touching beyond words. I'm literally not good at putting it into words.
It's overwhelmingly positive, and it makes me feel amazing. But I'm not good at talking about that. I'm I'm better at this part. So I I anyway, I'm on the phone. And what I really wanna know from this from this from this book What was she?
She was the is she the editor? Yeah. She's the editor of the book. And I said and she helped run the company. And I mean, it's sort like a publishing house.
You know? And I said, hey. Question. How did she get this book deal? She goes, well, we're always looking for blah blah blah, she's going through the whole thing.
I was like, gotcha. Okay. I kind of stopped and she goes, your sidebar is very good. I said, thank you. She goes, do you ever think of writing a book yourself?
And I was like, no. No. No. I'm not a very good writer. And she goes, no.
You're a very good writer. And I was like, I I don't. Like and, Elizabeth, you don't know. Like, I I I I didn't I didn't pay attention in school. You know what I mean?
And and so she says, well, we'd love it if you wrote a book about diabetes for us. You know? And I said, no. That's not a good idea. And she said, why?
I said, well, it won't be evergreen. And I also am not confident in my knowledge such that it should be written down. And, but I could write a really good book about being a stay at home dad, I think. And she said, let me see an outline. So I hung up the phone.
I'm only gonna tell this part because I think you'll appreciate it because you're writing a book. I hung up the phone, called my wife. I said, hey. I think I might have just gotten a book deal. And my wife goes, to do what?
I said, I'm gonna write a book. And she goes, you don't read. And I said, I don't think we should let the details get in the way. So and she's not wrong. I don't think I've read 10 books in my entire life.
I'm that's not a brag. I'm just I don't read. So, anyway, I said, no. I'm I'm gonna get off the phone with you. She said, can you do it?
I was like, yeah. I said, and if I can, I'll just give the money back. Like, I said, they'll they're gonna for they're gonna give me money in advance. I was like, we'll put it in the bank. Don't touch it.
If I can't write the book, we'll send them back the check with an apology letter. Done. Right? And my wife's like, whatever, man. I'm like, okay.
I gotta go back to work. She's like, I have a real job. And I was like, alright. So she hangs up the phone. I sit down and hammer out a glossary, basically, or just an index of ideas.
Basically, like, liners about what I think of. Like, the the story is front to back. I look at it for a second. I go, that's good. I start to write an email.
It's been an hour since I got off the phone with the editor. And I was smart enough to stop myself and go, she's probably not gonna take me seriously if she thinks I wrote this in an hour. So I sat on it for five or six days, then I emailed it to her. And then she said, this is great. We'll pay you $5,000 to turn in a manuscript.
And I went, okay. So I worked the next six months for $5, which, by the way, I could have sold pencils on the street corner and made more money. And my son often comments that I was maybe the worst stay at home dad while I was making it writing a book about being a stay at home dad. But but I wrote the book, got it to them. And this is a long way of saying that eventually the book comes out, people really like it.
It's been reviewed well, etcetera. But I'm not famous, so the publishing company doesn't put any effort into publicizing me. And then as I'm talking to them more, it comes very apparent to me that they had an author drop out on their slate, and they had a book they need they needed to put a paperback out that that in that quarter or something like that. Like, it was just, like, structurally a thing they had to do. And because I didn't trip over myself making the sidebar, they thought, well, we'll let this chucklehead write the book, and then we'll get it out.
Except I confounded their expectations and wrote a book that they really liked, but they still wouldn't put any money into publicizing it. So I did it myself. I got on NPR. I got on Katie Couric had a a web show on Yahoo, maybe. I got myself on that.
Katie Couric, and what came next48:28
I got myself a bunch of, like, print stuff. The NPR thing was just for my ego. That was just great. Like, I just enjoyed that. And but I did this this thing with Katie Kirk.
I went up to Manhattan. I think we were in the CBS News studios that they were, like, repurposed during the day. So, like, his office is full of people working at CBS News. I'm sure they fired them all. It's being run by an AI and a and a guy at a at a prompt right now.
But there's the all these people in this room, the soundstage is there, and she and I are shooting side by side. And I am just telling the craziest stories, like like, from the book and from my life and etcetera. And she's laughing and laughing and having a great time. Before I realize it, I look up and, like, the CBS News crew, the staff, like, people working at computers, they're not working anymore. They're listening to me, and they're laughing.
And I was like, I am doing this. I end up telling a story about my wife and I having sex in a field in the middle of the night, not realizing that a slow passenger train was about to go by and that we had nowhere to, like, hide. The lights on to the train, people sitting in the windows, us just there, and they're just chugging along. Anyway, I tell all these funny stories and everything, and and I get done. And and she just goes, you're so good at this.
And I was like, thank you. And she goes, we're not gonna use any of that. But that was awesome. And I was like, thank you. And then I left.
And her producer grabbed me, and she's like, seriously, I don't think you told one story we can put into an article or put online. She goes, like, this was fantastic. And I was like, oh, okay. But I made that decision because they they they interviewed a guy before me who was a stay at home dad too. And he was so he was so boring, Elizabeth.
Nothing he said wasn't true. It just I thought to myself, I wouldn't listen to this if I wasn't stuck in this room right now, and I'm not going to make that mistake. So I got up there, and I just, like, lit it up. I went as hard as I could. Anyway, I get an email a couple weeks later from the producer, and she said, well, we did put together a short clip for you.
And I was like, okay. And she goes, and and Katie read your book and liked it, so we're gonna publicize it a little bit. And I was like, thank you. She goes, but the full content of what you did is on everybody's hard drive, and people are watching it at their desks. And I was like, right on.
Thank you. So it's not much longer later. Actually, I was driving to the NPR interview in Philadelphia, and I got a phone call on my big brick phone. Does any remember the gray plastic phones that had the little
I do.
Yeah. Yeah. The Motorola's. I got the call on that, and she's like, hi. I forget her name.
She goes, I produce Katie Couric's television show. And I was like, oh, you're not the person. She goes, no. No. Not the web show, the television show.
And we're doing a panel with with stay at home dads, and we were just in the we were in the pitch meeting for the panel. And Katie looked across the table at me, and she said, why don't we have that Scott Benner guy doing this? And I said to her, yeah. Why don't you? Because I was on my way to NPR.
I was like, it's possible I'm gonna be, like, famous, like, in a couple more days. So, you know, I was like I'm like, I'll do it. You know? So, anyway, I go up to New York City, and it's a panel, and it gets done. And I'm walking off stage just excited that they got me a town car, and I was gonna drive home in a town car like a famous person.
And I'm walking off stage out the back. I'm gonna go out the door or out on the street, and I'm gonna leave. And a hand grabs my shoulder, and I turn around, and it's Katie Kirk. I've never gotten to tell her this, I'm sure I never will. But she said, you are really very good at this.
And I said, what is it I'm good at, Katie Kirk, from the Today show? Like like you know? Because I don't know what she's talking about. And she said, talking to people? You're really good at talking to people.
And she's like, when I didn't talk to you, when I ever when I threw to the other three guys, she's like, there's 600 people in this audience. They were all mad at me. They were mad at me for not talking to you. She's like, you made them laugh on purpose. You made them gasp on purpose.
They were following your every word. She's like, you are really good at talking to people. And I said, thank you. It was twenty thirteen, I think, and I left. I didn't think of another thing about it until people stopped reading, another thing the Internet did.
We suddenly someone found a picture of Leonardo DiCaprio looking fat on a boat. Nobody read anymore. I don't know how to tell you differently, but that is what happened. Like, we switched to pictures, and people were, like, reading? This is bullshit.
And so I started realizing that my clicks were going down. I was doing a couple million clicks a year on my blog, and and I was really starting to figure out diabetes a little bit too. And I was, you know, writing about how to do things or how we were doing things, and and it was helping people. I was getting a lot of good feedback. But I start seeing people are not reading anymore.
And then it puts me into a panic because this thing that I built, now 2013, but almost seven years after I started writing that blog, it's gonna die. Like, I'm gonna get phased out by a platform change or by a by a societal change. And it panicked me. I thought about it for a whole year. And then one day, I just thought Katie Couric said I was good at talking to people.
And I grew up my whole life listening to talk radio. I love listening to Howard Stern. I love Kevin Smith's podcast where he just talks endlessly about god knows what. I like listening to people talk. And she said I was good at talking, and I'll make a podcast about diabetes.
That's what I thought. 2014, I started thinking about it. And I bought a microphone and took the leap. And in 2015, right after Christmas, I tried my big idea out, which was I was gonna take my most popular blog post and read them into the microphone, which as you can imagine so it took me about ten minutes of reading to realize, like, this is this isn't right. It's not gonna work.
I was bored by it. I had the same feeling I had listening to that guy talk about him being a state owned dad. I was like, ugh. If I wasn't doing this, I wouldn't be listening to this. And and I just thought, well, this isn't right.
I'm not gonna I I have to figure this out. But while I was trying to figure it out, this kid named Adam Lasher was on American Idol, and he had type one diabetes. And his his uncle was Carlos Santana, if I'm remembering correctly. And he's on there, and I sent him an email back before the Internet worked the way the Internet works now. I don't know how I found him, but I figured out how to find him, and I emailed him.
And I invited him to be a guest on my type one diabetes podcast, which Elizabeth was not a lie because I had, in fact, put the podcast online. I did technically have I did technically have a type one diabetes podcast. And Adam and I made did an interview together. I don't know if it's any good. I couldn't begin to tell you.
But I like talking to him. And I put it up, and I already had a really good following online. So it kinda, like, spun up and started to take off. And by the end of that year, I had figured out what I was doing. I made an episode called the time I decided to share where I just talked about why I'm doing this.
I got to an episode where I don't even know what it's about. It's episode 11. It's called bold with insulin. And I it's not even about that. It's just I think in the app in the conversation somewhere, I said I found the nerve to be bold with insulin, and then I made that the title.
Anyway, I was making that podcast and chugging along. And a couple years later, I'm still doing it. Once a week, I'm putting up an episode, and it's getting hard. It's a a lot of effort and time. And I was at that point, I think I had one job in diabetes.
I was writing a blog for Omnipod. I think I would write them six yeah. I I owed them six pieces a year. I think they paid me a thousand dollars for each piece. That was the only that was the all the money in the world.
I made I made $6,000 a year. You know?
You were raking it in.
I really was almost I I was thinking about where to invest, talking a lot about the S and P 500 people. And and so they have a changeover, a turnover in the company, and they bring in a new person a new person named Natalie in in in PR. And Natalie puts me on a call like she should with everybody in her group, and she wants to talk about what I'm gonna write for her blog next year. And I said, I don't wanna write for your blog anymore. I just want you to give me the money, and I'm gonna make a podcast with the money.
I'm doing it already, but I need ads. And she's like, what do you mean? I'm like, I can't I said, it takes a lot more time than the writing. Like, I had to tell my wife that it makes money. That was literally what I said.
And so and I kept explaining it, kept explaining it. Nobody was following along. This is a long conversation, me talking, like, really selling. You know? And I eventually said, listen.
I'm gonna help people do better with their diabetes. You'll be the people that brought it to them. And then that voice, like, on a conference call, Natalie's voice, she just said, I understand what he's talking about. Let him do it. And that was it.
She gave me $6,000. I gave them ads. It legitimized the podcast because the podcast had ads on it, which was helpful. And it attracted Dexcom at some point, And I that's how I learned kinda more of the business side of it while I was growing the podcast.
And It's interesting that advertising legitimized the podcast.
Well, why would somebody buy an ad on something nobody was listening to?
Yeah. I guess that makes sense.
Right.
So One of the things
Go ahead.
One of one of the things I wanted to ask you about was the bold with insulin because I find that to be really I mean, just a great phrase and one that was helpful to me, in part because I think that endocrinologists kind of tell you the opposite oftentimes. Right?
Yeah. Well, it's a great example of how the the community builds the podcast. Excuse me. It turns out when you talk nonstop for an hour, it's hard on your voice. Sorry.
I'm sure you'll get to ask a second question at some point. So I I agree with you. So it's not so so people understand, to this day, I don't preplan an episode of the podcast. I do not know what I'm gonna talk about before I start talking about it. Even if I'm doing, like like, aces and paces with Erica, I just say to Erica, like, hey.
I wanna talk about the aces. And I'm like, come ready. And then she comes ready, and I don't know what I'm talking about. And I just start talking. So that episode, episode 11, I don't know what that was about.
That was just me opening up the microphone and talking as far as I'm concerned. I didn't preplan it. I also didn't plan to call it bold with insulin. I wasn't making a a thing. The end of that bold with insulin story is that some years later, I saw people on Instagram talking to each other and saying you just have to be bold with insulin.
And when I saw it, I thought, that's not a coincidence. That's me. She's my lady in England, this lady on Instagram talking about being bold with insulin. I said a thing on a podcast, and two years later, a woman on Instagram is telling another woman on Instagram to be bold with insulin. Mhmm.
That's the kind of stuff that gets me going. That's where I start thinking, give me one. I'll make 10. Give me 10. I'll make a 100.
Like, that kind of thing. And it's you know?
It's a phrase that is really a mind shift. But it's not but
I didn't pluck it out. They did. Like, the listeners plucked it out. That's that's the important thing about the podcast. The the thing you have to understand about the podcast is that I'm not a genius writing down Torah.
Like, it's not the Torah. And and for non Jews, it's not it's not the bible, okay, just in case you don't know the word. Also, I'm not Jewish. I don't know where all my Jewish phrasing comes from, Elizabeth, but nevertheless. And so so I don't it's not like I'm an expert, and I go, hey.
Here it is. A b c d. Do it in this order. You win. I tell stories.
I tell stories about how things work for me. I tell stories about how things occur to me. I say things about, like, pre bolusing, but it's a tug of war. I say things people wouldn't say, and it's all the reason I told you this whole story is because it's how it gets to this. Like, my my insistence to not do things the way everybody else is doing it.
That's an important part of it. Not caring what people think. I left out the part where where I started this podcast. That community came after me. Right?
I got I got I got somebody came to me and said, you're gonna hurt somebody sharing how you take care of your daughter. I don't like the way you make your podcast. And I was like, well, I didn't ask your opinion. And god thank god I didn't listen to that person, who, by the way, to this day still shit talks me twelve years later to people and thinks I don't know. I know.
Okay? In case you hear this, and you will. Okay. So so, anyway, not the point. The point is is that, like, if I listen to the way things were done, none of this is gonna happen.
And so whatever it is that's me or how I occurs to me or whatever, I don't know how to quantify it. What me and the stupid microphone and me talking. Whatever whatever that makes, other people, it's not their job to follow it like the Torah. It's their job to hear the parts that make sense to them and build their own story with it, and then to go out in the world and share it with other people so that we can all continue to build that story together. Until one day, no one's gonna walk into an endocrinologist and not be told to count their fat when they're bolusing.
Like, I'm gonna fix that. Trust me. Okay? Like like, that's that that's the thing. By the way, it's literally my only goal.
My only goal is to get people to, like, bolus for the food they're actually eating, have their settings right, time their insulin well. I have three goals. That's it. If it's not obvious every time I'm talking, I'm doing a bad job. You should have your settings right.
You should be preballsing meals when it's appropriate. You should understand the impact of your food and cover it appropriately. That's it. I mean, you wanna I can add on to it forever. It might be nice to have a little GLP mixed in there for some people.
Like, I there's other things you can do. Like, don't get me wrong. Those three things would save the world, the world that uses insulin. Right? Those three
What I love what I love about what you just said, Scott.
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#1937 Immunostimulation with Dr. Faustman
Immunostimulation with Dr. Faustman
Dr. Denise Faustman of Harvard and Mass General returns to explain her BCG vaccine research in type 1 diabetes — a phase 2 trial, a surprising metabolic discovery, and where it stands now.
Jump to a moment
- A different bet than most of the field. Dr. Faustman recounts starting in islet transplantation, concluding the real problem was the underlying autoimmunity, and pursuing immune stimulation rather than immunosuppression. Her group landed on the TNF pathway and, rather than develop a costly new drug, chose BCG — a generic tuberculosis vaccine used for about 125 years that triggers TNF release. She stresses this is her research program's approach, described for a general audience.
- An unexpected finding at year three to four. After a phase 1 trial published in 2012, following patients long-term revealed A1c dropping years later in people with decades of type 1 and essentially no pancreas function (flat C-peptide). Because insulin from the pancreas couldn't explain it, her team paused publication to investigate the mechanism. These are her group's trial findings, not established standard-of-care outcomes.
- A metabolic defect she says hadn't been described. Metabolomics pointed to accelerated glycolysis — the Warburg effect, or aerobic glycolysis — in the white blood cells of people with type 1, which she describes as immune cells burning fat instead of properly using sugar. Her account: BCG shifted the lymphoid system back toward using and regulating glucose, and the magnitude tracked with how young a person was at onset.
- Where the phase 2 pivotal trial stands. Dr. Faustman reports about 660 people treated with BCG across her program, first data released at the ADA, and that at year eight roughly 41% show a normal A1c — while still using insulin, with time in a tight range and fewer lows. A fully enrolled 250-child pediatric trial is underway. She frames results as trial data still being followed, not an approved therapy.
- Not available to buy — and how to follow it. BCG for type 1 is not FDA-approved for this use and can't be purchased for it; her next stated goal is drug approval, priced to be affordable. She points people to the trial registry at diabetestrial@partners.org and notes many participants found the research through this podcast. Nothing here is medical advice.
- Register interest: diabetestrial@partners.org — The email Dr. Faustman gives on-air to hear when trial slots open; her immunobiology labs are at Mass General.
- Dr. Faustman's first visit: episode #120 — Her earlier conversation with Scott, roughly nine years ago, on the BCG work in its earlier phase.
- Clinical Trial Tracker — Scott's searchable tool for looking up type 1 trials, including immune-intervention studies like this one.
Every word of the conversation
Cold open & sponsors0:10
Hello, friends, and welcome back to the juice box podcast. If you don't love today's episode, you can have your money back. You should not, in any way, shape, or form, take anything you hear on the Juice Box podcast. As medical advice, I'm talking about medical advice, regular advice, any kind of advice. This is a podcast.
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Denise returns — nine years later2:31
My name is doctor Denise Fausman. I'm sitting here in Boston, and I lead the immunobiology labs here at Harvard Medical and Mass General Hospital. And, we do and have done a lot of work on type one diabetes for many years.
Denise, you've been on the podcast once before, but it's gotta I'm try I'm looking right now while you're talking, but it's gotta be years ago, I think.
Yeah. More than fifteen maybe. Really? Was it a mouse experiment?
I don't I don't even know. Well, I'm gonna try to let me let me see if I can find out real quick.
It might have been a
mouse experiment. You were on episode 120.
Oh my god.
Do you know I have 1,900 episodes out now?
I see. Yeah. So was the founder.
Go ahead. Yeah. Well, I mean, jeez. Oh, yeah. Let's let me read the thing.
It says her research into the BCG vaccine and its role into regulating t cells and immune system discussing phase one and phase two of the trials and the effect the vaccine has had on blood sugar for type one diabetics.
So Okay. So, like, ten years ago at least.
It was it's 2017, it says. July. Oh, it's July now. Hold on. Eighteen, nineteen, twenty, twenty.
That's nine years ago. Exactly.
Yeah. Almost ten. Yeah.
Yeah.
There we go.
So tell
so tell happened.
Wait. What's happened since then?
We no longer do mice. Is that good? Is that good news?
It seems like a step in the right direction. There's a whole a whole generation of diabetes of research that figured out how to cure mice over and over again.
Oh, I know. Hundreds of times. Hundreds of times. So we probably haven't had a mouse in the lab for over eight years or so. So all our work is on humans with type one diabetes, and all our work is, centered on, detailed clinical trials, moving the test point deeper and deeper to see if we can have an impact on type one diabetes.
So we have humans. We don't have mice anymore.
Tell me where this like, let's do a little bit of a a a catch up. So tell me how how this all started and how it's been progressing. So where did where where
is the first thought? Back more than ten years.
From islet transplants to autoimmunity4:42
Go ahead.
So what happened was, my PhD work was with Paul Lacey isolating some of the first islets from human pancreases. Okay?
Mhmm.
So everybody thought we were gonna cure diabetes. Paul Lacey thought we were gonna cure diabetes. And Harvard Medical thought we were gonna cure diabetes and was pretty upset that the Midwest might cure diabetes with islet transplants. So I became a very low hanging fruit for recruitment to try to get a massive islet transplant program going in Boston. Mhmm.
Okay. So this was a time where there was no shortage of pancreas. Okay? It was just who knew how to isolate islets, who could get human clinical trials going, who could really cure diabetes in short order. Mhmm.
So that's how this all began. And during the four years with the setup of this program, lots of money. No problem. We kept putting islets in people with long term type one diabetes that needed a kidney transplant. And that seemed ethical to do because, as probably everybody on this podcast knows, when you get a kidney transplant, you need some pretty nasty immunosuppressive drugs.
But if you already needed those drugs because you needed the kidney, then it would just be a little booster ride to put in the islet cells and cure the blood sugars.
Mhmm.
So those were the experiments, we set out to do, and we started doing a great enthusiasm. No shortage of funding. And we were, like, the first or second group doing these. St. Louis was obviously moving pretty fast at WashU.
And the answer was so simple and so bad. And the bad the good answer was the kidneys, of course, survived just fine. Right?
Mhmm.
They were gonna survive eight to ten years. The person was on immunosuppression. But time and time and time again, when we put the islets in, the islets were rejected, the kidneys survived, and we had no impact on type one diabetes. And that was a lesson nobody wanted to hear because the whole world was moving forward for eight to ten year period saying, we're gonna cure diabetes. It's just a matter of who's got more islets.
Right? And here we were coming along with this clinical trial data that clearly showed that that was not gonna be the case. So kind of you know, I I got kinda tired of standing up in meetings of, like, here's my negative data. Okay? Is everybody listening?
You know? Negative data? And we got a problem. I mean, recurrent autoimmunity's occurring, and we don't have a fix for recurrent autoimmunity. And then mural suppression is not curing it.
So we literally quit the program after three or four years. Huge disappointment because everybody goes, well, it's just around the corner. We're gonna have stem cells. We're gonna have vats of cells. And I kept standing up and going, but that's not the problem.
The problem we need to cure is the autoimmunity. So my research focus totally changed at that point and said, I can't get islets going unless they get to the root of the human problem. So there was a good five to seven year time period where we started studying the lymphoid cells from people with established type one diabetes. So we had lots of humans coming in that had had five or ten or twenty years type one diabetes, and we wanted to understand what was different on their surface. That amount might allow us to get rid of the bad cells and not hurt the good cells.
That's the easiest way to say it.
Okay.
The TNF pathway, and finding BCG8:39
And we kept coming up with this pathway that's called the TNF pathway. And, again, there was a lot of questioning of that because a huge drug on the market for autoimmunity that you probably know about, other people know about, were anti TNF drugs that didn't necessarily work for type one diabetes, but they worked for rheumatoid arthritis. They worked for ulcerative colitis. They worked for Crohn's. And here we were obtaining this basic science data showing we could proliferate the good cells, the Tregs, and we could kill the bad cells, the cytotoxic T cells to the islets with TNF.
So, again, a little contrary to where everybody else was going, but we decided that the data in human cells was so strong. And then when we went to mice, we saw the exact identical thing, not that mice are a good test. We decided we gotta get into the human. We gotta get into the human to see if we see this again. So we started clinical trials.
And, of course, when you have a new idea, that's when funding's the hardest. And we kinda had two choices. Right? Kinda go on a commercial track and say, we need TNF. We need a drug that is TNF, but it's safe.
Or is there already a drug out there that has this effect? And sure enough, it was known way before I was probably even born. Okay? So you're talking way back.
I just had a birthday yesterday, so don't let's not talk about age right now. Okay.
Why a 125-year-old generic vaccine10:17
We won't talk about years. But it was well known that this generic vaccine called t and f or called BCG, which was used for tuberculosis, when you got vaccinated, you had an acute event, and something called cachexin was secreted. And Genentech had just cloned cachexin and realized it was TNF. They called it tumor necrosis factor. And we said, oh my god.
It's known that when you get this vaccine, you release huge amounts of TNF. And we know TNF might help in diabetes to stimulate the good cells, the Tregs, and might kill the bad cells. So in that major division of research of do we go for the cheap generic drug, or do we go for the expensive newfangled drug, we decided we're in academia. We should go with the generic drug approach. So that's how all these BCG programs got started.
It was we've got something that targets two important T cell populations we know need to be modified in people with type one diabetes, so we should bring it forward in a safe way to trials. And we went for and this is still unusual in the diabetes, field. We went for people that had existing type one diabetes.
Okay. Can you tell me that now going forward all these
years Mhmm. Mhmm.
Is it hard to look back and say, did the right thing. I did the wrong thing. We should have moved here. Like, I guess what I'm asking is do you get so focused on the thing you're doing that you stop thinking about that stuff, or is that in in your head while you're moving? Diabetes, as you know, comes with a lot of things to remember.
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Well, there's always roadblocks. Right? When you do things, there's always roadblocks. I think that it was much harder pathway doing generic drug development than if we had had the right funding up front to go over, the newfangled drug.
Mhmm.
But I still think we did the right thing because as we fast forward for the next fifteen years, BCG has only surprised us at its potential and multi limb potential as a therapeutic for type one diabetics. It's only surprised us. So picking that was a home run. Doing all the details of a generic drug, it's not so easy. There's a couple AI companies out there.
I was talking to somebody this morning. You know, they're like, you know, we're gonna cure disease. We're gonna use AI, and we're gonna find generic drugs and move forward. And I kept thinking, that's not the problem. It's not.
It's, oh, you have to remanufacture it. You know? You have to go safety in type one diabetics, not safety in the general population. So you effectively even though it's generic, quote generic, you have to redo all the steps for the FDA. So it's it's not exactly a shortcut, as you might think it might be billed as.
I have something stuck in my head for the last ten years that I I attribute to you. I attribute it to you, but I don't know if it's true that because I've had I genuinely had so many conversations. It all just sort of blends together.
Blends together. Of course.
But did you ever do you feel like you would have said to me that you feel like these cells are inflamed to the point where they can't move and do their job? Not that they're dead, but they're frozen. Is that No.
That's not me. No? These cells are all around. We can we can hunt them down and kill them. And we and for the good ones, we can hunt them down and proliferate them.
Okay.
So we don't care. There's a lot of people in the mouse field that believe the microenvironment in the in autoimmunity. And people sometimes believe this in cancer too is selective, a different, like, address that your drug has to be targeted to, but we haven't seen that in autoimmunity.
I see. How how much of of all of autoimmunity do you attribute to just inflammation and our inability to understand what inflammation's doing to us?
Yeah. Obviously, inflammation's kind of at the top of the pyramid. But when we talk about the phase two data, also the phase one data that led us into the phase two data, you're gonna see that one of the big discoveries in this work was not just immunology, but the met underlying metabolic defects. And for me, metabolic defects were what type two researchers studied. Okay.
Right? We were over in immunology. Yeah. Yeah. You guys got all these metabolic problems going in type two diabetes.
But the the truth is one of the big discoveries that came out of this was, the discovery of metabolic defects in type one diabetes that now allow us to target people after twenty, thirty years of disease. So I would probably say the pyramid's probably taller for immune effects, but there's an equal peer pyramid that's getting taller. The peak is going up in the sky on underlying metabolic defects that can be treated in type one diabetes and lead to really good clinical outcomes.
Can can you kinda colloquially tell me what some of those defects are?
Yeah. So I always like telling the funny stories because usually science is somebody showing a gel and go, oh, look at this band. Bingo. You know? So I think
Yeah. I'm gonna need something everybody can understand when you explain to me.
Yeah. Yeah.
It just
falls on you. Right? And you just found that band, and that band's really important. You know, it's just bingo. But most science is not bingo, and science kinda likes to torture you.
Phase 1, and the eureka at year three18:24
So we did the phase one trial. It was published in 2012. And it was a small trial, and it was to give multidose BCG, a strain we knew that was really potent to people with long term type one diabetes. Okay? And we knew about strain differences in BCG, and we also started out with long term diabetics because nobody else wanted to study those people.
Right? Everybody wanted to run for the not yet diabetic child. So we go, well, who really needs something? It's people that have diabetes. Right?
So maybe we should start there. And, of course, we were told by everybody this was totally crazy. So we did a short trial with David Nathan, and it was twenty weeks long. And it was obviously safety. Can you give multidose BCG in people with long term diabetes?
But it was also a lot of biomarkers to see if we could really track what was going on with BCG. So the biomarkers were similar to what we had seen in the mice. Do we see dead autoreactive cells in the blood? Do we see the induction of Tregs? Do we see something, even something tiny happening in the pancreas, which was pretty much dead.
Okay? So we thought we could monitor all those markers. And, of course, we were looking for hemoglobin a one c, which in retrospect is a little bit, probably not well thought out, but we looked for hemoglobin a one c.
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So we got done with that twenty week trial, and mechanistically, the data nailed it. We could see the brief induction of Tregs. Okay? That was good. The compound obviously did that.
We could see the beautiful death of autoreactive insulin autoreactive t cells in the periphery. Didn't really see much in the pancreas. Okay? The pancreas pretty much dead to begin, was pretty much dead at the end. So we might have stopped there.
Okay. We might have stopped there. But there was a guy in Italy doing BCG in multiple sclerosis for the same reasons we were. You need to induce the Tregs. You need to kill the cytotoxic T cells.
And can you see something happening in the brain? But his study, his name is doctor Rastore, was unique because he followed his patients five years. And when he followed his patients five years, knowing that neurological disease is slow to develop and might be slow to reverse, he started seeing the resolution of multiple sclerosis by scans in the brain. And it made us pause and say, oh my god. We had these early biomarkers that moved.
So maybe the mistake we're making or the improvement we could add was to do still phase one trials, but follow people long term. Go out to five years. Go out to eight years and see what happens. And that was the eureka moment. When we followed people out to eight years, we saw in around year three to four these dramatic drops in hemoglobin a one c.
A1c falls with a dead pancreas22:56
Okay? We're talking about people with twenty, thirty years of disease and during a year, year and a half, two year period, all of sudden, hemoglobin a one c's went down 20%.
Okay.
K? So anybody who's out there that's a diabetic goes, that doesn't happen randomly. Okay? Like, Nothing brings your hemoglobin. It lets you down that much.
So, of course, we recruited all these people in, and we said, oh, we gotta do IVGTTs. Right? That's what you do in adults. Right? You don't give them a mixed milk tolerance test.
You give them glucagon. And we're gonna see that their pancreas regenerated. So we brought them all in. We sent all the serum off for c peptide, which means is there insulin from the pancreas. And when they we got the data back, it was flat as a pancake.
Okay?
Okay.
So they had no c peptide to begin with. They had no c peptide at year five, six, seven, eight, but their hemoglobin a one c's had dramatically fallen. Now try to publish a paper like that. Okay? Can you You corrected blood sugar.
Okay? Yeah. Can you take a detour for half a second and explain explain to people the back end of all of this? And, like, when you say, like, try to publish a paper like that, what is what don't we understand about the the profession
Publication process.
Research and and that help?
Yeah. So, you know, you kinda have to stick to the groove, and the endocrine groove would be you can't lower your hemoglobin a one c that dramatically unless you have a live pancreas, and you're making insulin. And these people were not taking more insulin. If anything, we thought the insulin dose was going down. So how is that possible?
Okay? So we paused the publication of the paper, and we went back to do the basic science because we had all this serum saved for eight years. And, effectively, we were looking for a cause, a new reason for why BCG could lower blood sugars. Right? Mhmm.
It wasn't the pancreas. It wasn't insulin. So something was lowering these blood sugars. And it happened in all the the the BCG treated group, which was small, did not happen in the placebo group, and did not happen in the reference group. So when we started doing something called metabolomics, it's like looking at all the metabolites in your blood.
The Warburg effect in type 125:29
We came up with a really strong signal that after BCG and the years following BCG, an important metabolite changed. And it won't mean much to most scientists. It'll probably not mean much to most laypeople, but we saw this big increase in purine metabolism. And you may go, well, what do purines have to do? Well, we had to look it up too.
Okay. That's true. I don't even like it. Why are purines going up? Okay?
And it turns out purines are a byproduct of accelerated glycolysis. So we all of a sudden started realizing that BCG within the lymphoid system, that means the lymphocytes, the white blood cells, the monocytes, the t cells, and b cells, was accelerating glycolysis. And furthermore, we began to discover that people with type one diabetes at baseline had misbehaving white blood cells that were eating fats and not eating sugar.
Okay.
And that's called the Warburg effect, or it's called aerobic glycolysis. And we all a sudden realized that type one this is where the story comes around. Type one diabetes had a major metabolic defect that had not been described before.
Mhmm.
And that what BCG was doing was, yeah, it was doing its good thing on a pretty much dead pancreas. But what it really was doing was changing the metabolism of the lymphoid system to restore it to eat sugar and regulate sugar. Because how glucose is taken up is not by osmosis or just diffusion. It's a regulated receptor transport. And so those receptors are well studied by many people.
And when the blood sugar is high, that transporter is pumping in the sugar. And when the sugar lowers, that white blood cell is not pumping in the sugar. So this was the beginning of a discovery that we had a drug that, you know, might change something in the pancreas, but we were studying people that had no pancreas left, but could regulate blood sugars to a level of degree of control that had not been seen before. And these were people with long term type one diabetes. Okay?
Okay.
So that was obviously startling to start talking in type one diabetes field about aerobic glycolysis and lymphoid defects and metabolism. But the size of the errors were so substantial. We knew we were on a hot trail, and we knew we needed to do lots of basic science. So we published maybe ten, twelve basic science papers on these newly discovered metabolic defects and how BCG was changing glucose transport in the lymphoid system to control blood sugars in the periphery. So that's a a big mind shift because people with type one diabetes have probably given up a vision or hope that if you have the disease long term, it's be happy with insulin, be happy, with a glucose monitor, be happy with an insulin pump, and that's gonna be your life.
Right? You're gonna have better insulin. You're gonna have better pumps. You're gonna have better meters. But nobody was doing immune intervention trials with success, let alone even in the prediabetic success to this magnitude.
The phase 2 pivotal trial29:15
So then that, of course, pushed us on to raise the money to do the phase two pivotal trials.
Mhmm. What what's this next phase hoping to to show?
Yeah. So this next trial and we released the beginning of the data in at the ADA, was to now do a bigger trial, do all the bells and whistles. Like, you know, download all the CGM data. Okay? Mhmm.
Have people come every six months. Have them followed long term, you know, every six months for five to eight years. Have them come in every, year and do a glucagon stimulator test, what's happening in their pancreas, And really run a very deeply scientific and rigorous trial to make sure this was reproducible.
Yeah. Do you think that like, if if we could all stay alive long enough and Yeah. And you can keep working. Right? Do you think that your approach leads to a stand alone cure?
Do you think it, I don't know, becomes more of, a a disease modifying treatment? Or
Yeah. Or do you see that how I say it.
Yeah.
Right now at year eight, okay, these are people let me define the population. Adults, 30, 40, 50 years old. Right? Mhmm. And they this group all got diabetes when they were kids.
Two years old, five years old, eight years old. K. Okay? Young juvenile onset, what you and I think of when somebody goes, my child got diabetes. You picture an eight year old.
You picture a 12 year old.
Yeah. My daughter was two. So yeah.
Yeah. Yeah. So just of interest, if you have a child that got a two, you have very severe aerobic glycolysis defects. So we now know it's not your chronical age that determines the magnitude of the correction, it's your age of onset. So these defects are very large in people who get it when they're very tiny.
But yet even as adults, when their pancreas is all gone, BCG works beautifully and faster, the younger the age of onset. So it's a you know, we've been you know, when I see new onset families, they go, oh, I gotta get in tomorrow. I gotta get in today. I gotta, you know, I gotta fly from Kansas. You know, I've gotta I gotta be there.
And they're in this panic that, you know, there's a few islets to preserve, and we need to get in immediately. But this is this primary effect on blood sugar has nothing to do with preserving the pancreas.
But there's a lot to be learned from the idea of how soon in your life you're diagnosed.
Yeah. So that's why we're doing the pediatric trials now because they have two hopes, not one. First of all, they're younger, so there's advantages. I always think younger. Right?
And then the second advantage is that most of them, not all of them, still have some pancreas reserve. Right? So now in these pediatric trials, we're gonna see the impact of BCG on Treg induction and cytotoxic T cells in these kids.
Age of onset, and the pediatric trial32:34
Oh, you ever look at the other pathways that are being looked at and think, oh gosh. That's an that has a lot of merit. I'm excited about that. Or do you ever look and think, jeez. What a that's not gonna I'm not asking you to out anybody, but I'm wondering what you think when you look around the, you know, the space of of diabetes, you know, cure chasing.
Yeah. I think it's not just specific to diabetes. I think in autoimmune diseases as a general theme, and this has been going on for twenty years, it's been the concept of immunosuppression. Right?
Mhmm.
That the only way we can do this is more and more immunosuppression earlier and earlier. And for some diseases, like rheumatoid arthritis, that seems to work. But there's other diseases where it doesn't work as well. And the magnitude of the immunosuppression or the drugs are pretty toxic on themselves. So diabetes sets a really high standard that typically most trials are in kids, and you you better have meticulous safety.
Right?
Yeah.
Meticulous safety. So I I hope everybody can pursue their dream. Okay?
Mhmm.
Because the proof is in the pudding. The proof is in the clinical trial. So if you think that's gonna do it, go for it.
Go for it.
And we'll see at the end of the trial. Right?
Is it encouraging to you that they're finding other immune suppressants that don't seem to be as harsh?
Yeah. It's one way. You know, a lot of people in all autoimmunity are going for immunosuppression. You know, ironically, we're going at the 180 degree opposite way for immunostimulation. Yeah.
So very different approach.
If you if you popped out your head out of the clouds tomorrow and you were like, oh my god. We figured it out. Your thing has impact on more than just type one diabetes. Right?
Yes. Yes.
Yeah. Yeah. Because I mean, I hope this doesn't feel like a left turn to somebody. Maybe you'll disagree. I'm not sure.
But in the last handful of years, you know, the the number of people that I've interviewed who are having resolution of other problems after going, like, on a GLP medication are real are really interesting. Like, great to see. And and just today and there was another study published about psoriasis. Mhmm. And I'll tell you, I could they could have saved a bunch of money.
They could have just asked me three years ago. Would have told them. That I haven't had a I've I've had psoriasis in cold months probably most of my adult life, and I have not had it one time since I've been using a GLP medication.
Oh, that's interesting.
Yeah.
That's interesting. Right?
Not not ever one time. I was anemic before that. I don't think I was processing my food correctly and really pulling the nutrients out of it. Haven't been anemic since then. I'm watch I mean, there's those stories of the ladies getting pregnant, like, very very even before weight loss.
You you know what I mean? Yeah. Endometriosis, PCOS, like, implications there and there. So is that all is that all just inflammation being reduced?
It could be. Yeah. It could be.
And what do you have any idea why GOP is doing that, or does anybody know, or is that just one of those things that we go like, oh, it happens. But
Yeah. I don't GLP can change protein processing, and the reason we look at some of that data is because BCG changes protein processing as well. Mhmm. So I think there's probably more levels to understanding all its effects than just your stomach shrinks and your head doesn't think you need to eat.
Right? I think I gotta be honest. In my life, that might be the least of value it's had for me.
Yeah.
Yeah. Yeah. But I just didn't like, it makes sense to me because if you're thinking about inflammation so much Mhmm. I mean, I'm that's where I'm at. I am certainly not a researcher.
I didn't go to grad school or college or anything else. I'm just a person talking to people. But my goodness. If I didn't have somebody tell me six months ago that their child who was experiencing pretty significant mental health issues Mhmm. Even saw a reduction in them on a GLP medication.
Mhmm.
And and I don't know how crazy this sounds to people when I say this out loud. I've never said it to you because the last time I talked to you was a decade ago. Mhmm. But in that last decade, I have talked to more people who will tell me that they have a bipolar relative. I and I find myself thinking that if I didn't make a podcast about type one diabetes specifically, there's no way that so many people would talk about anxiety.
There's no way that so many people would talk about bipolar disorder.
No. Because you kinda don't put it in the patient profile. Yeah. But I'm telling you, like Eligibility.
Got it's got to have something to do with inflammation overall. And and I don't know to me, I I wish everybody would just pivot and look at that, to be
perfectly honest. I mean, so many things are driven by inflammation. Right. Right?
Yeah.
So many things. And, you know, CNS disease and inflammation is not a good thing. Right? I mean, Alzheimer's is also in that category.
I it just seems to me like that's the that's the pathway. So do you see like, would your thing be a great, like, additive to another idea, or do you actually believe that one day you'll get to the point where you're like, oh, we just use the BCG, and you don't have diabetes anymore?
41% with a normal A1c at year eight38:08
Well, so what is the endpoint? So people still were at year eight in this big trial, and the first unblinding was at year five. So these people after year five are no longer unblinded. But their hemoglobin A1c's are still going down. So at year eight, forty one percent of them have a normal hemoglobin a one c.
So you go into your endocrinologist, so you get your sheet back, and it doesn't show diabetes.
But they're using insulin.
They're using insulin. Insulin. Okay. Okay. They're using insulin.
So what does that mean? Is it cutting the cutting out the highs? Cutting out spikes?
So you all of a sudden, the data shows that for the first time, you're spending most of your time with true normal glycemia. Your your little curves up and down during the day are confined to 70 to 99.
Mhmm. Oh.
So you all of a sudden have tight blood sugar control, and you have more no more hypoglycemia.
How many people do you have that are showing that?
It's about forty one percent. So, like, twenty. 20.
20 people. Yeah. Because you your your study is I mean, is your study considered small by standards, or is it no.
It's huge.
It's huge.
I mean, I I think we've created 660 people with BCG with type one diabetes, so we're bigger than any, c d three trial to date.
How families find the trial39:33
Oh, Denise, take a take a pause here for a second. For all the people who yell at me online that I don't do enough to support cure research. Can you tell them where you get all the people for your trial mostly?
Oh, yeah. So this is, like, an interesting story. So we didn't have like, I'll talk about the peds trial. We're just fully enrolled. Okay?
Mhmm. And it's 250 kids. Two types of kids just got diabetes in the last, three months to a year. And then kids that got it, and they've had greater than two years of diabetes, but they're still kids. Okay.
So we go, okay. We don't really do peds to that volume here. So we started advertising online. And you Scott, you'll be very excited. I can't tell you how many families come in.
Always ask him, oh, how'd you find us? Because we don't have a $4,000,000 budget for this advertising.
Sorry. If you did, I would be retired by now. But go ahead.
Exactly. We don't have that budget. And they go, oh, I watched Juice Box, and they talked about your data. I mean, we're talking about people in Utah, Montana, Kansas City.
Well, not only that. You're talking about people who listen to a nine year old podcast and still found you.
And they love it.
I would like all of the advertisers to listen to what Denise just said. It's true. Heard you're not paying
enough. So popular.
I heard you're not paying enough, and you're gonna get paid back for a decade to come. I don't want any complaints when I push the price up. Denise, no nobody complains when I put the price up on the ads next time. Yeah. That's what I wanna hear.
No. I I so what good for you, Scott.
Wow. So I go, oh, how'd you get connected to that? Then they can't always remember. But they go, oh, I listen to these podcasts. I've commuted to work.
Or Mhmm. You know, it's in the evening, and I got the kids at bed. I turn on the podcast. I go, oh, this is really interesting. How would I have been exposed to this data before?
It just So these are Yeah. Educated people, educated parents that are seeking data.
Mhmm. Educated. That's another way of saying can afford your stuff. Listen to what I'm listen to what's being said. Anyway Sorry.
No. I know. No. I appreciate you.
Podcasts are pretty cheap Yeah. To listen to.
Yeah. Denise says before we started recording, goes, so many people heard about us through your podcast. I was like, don't waste it before you're being recorded.
Yeah. It's true. It's true. I even have I have my private notes on everybody, and you are featured in quite a few. Found us on Juice Box.
There you go.
Oh, boy. Oh, I'm so happy people are, like, out there trying to do better for themselves. I mean, I find the whole thing fascinating, obviously. Like, you know, I just had Wachowski on from Chicago. Yeah.
Super interesting. And I'm gonna and I'm gonna ask you the same question I asked him towards the end of the conversation I had with him, which is you're you're not, you're no spring chicken, Denise. And and and what do you do to make sure that this has legs beyond you? How do you set it up? Do you know what I mean?
We
you know, I got that question. I won't pick which pharma company was talking to me. And they go, what's your next step? What's your next step? And I said, well, you know, we got 250 families and kids enrolled in pediatric trials.
He kept asking it, like, eight times. And finally, I got to the end of the presentation, and he asked it again. I go he goes, what's your next step? And I said, drug approval.
Yeah. Let's go.
And he his jaw kinda dropped down because he thought that most academics are to get the next paper. Mhmm. And, of course, you know, that makes people around here happy. But what would really make me happy is getting something safe, affordable, and dramatic Yeah. That hasn't been out there before for everybody to use and benefit from.
This drug this drug's a generic. Right?
Well, it's a generic in that it's been used for a hundred and twenty five years.
Yeah.
I mean, last year, a hundred and twenty million newborns got at birth. So safety is not an issue. Safety has got it nailed. But you can't go any place and buy it right now. Mhmm.
So it's not like you can, we get these calls. It's usually a physician that wants to have a private call with me.
Do you do you ever track this?
Where they're going.
Yeah. Those children you just mentioned that get it at birth, what do they get it for?
Oh, tuberculosis. It was developed for tuberculosis. And then about twenty five years ago, it's not exactly the exact date, people started seeing these off target benefits of this vaccine. And the first category off target benefits they started seeing was that if you got the vaccine, you were protected from all infectious diseases.
Off-target benefits, and right-to-try44:25
That's my question. It's like, they tracking those kids? Are they are they
Oh, yes.
Flipping around the planet just all good? What's going on?
Yeah. Yeah. So I won't quote everybody's data that works on the infectious disease thing, but it makes your immune system so much better that when you get exposed to the flu, you don't get the flu. So we track this in our diabetics because you know if you have diabetes, you get more infections. Right?
Yeah.
All the time. So our diabetics become the family member that don't get sick, that doesn't get sick. Do you take it? Do I take it? I don't have access to it.
Yeah. You can't get some? I see what you're saying. Okay. Yeah.
I mean, here's a different
take it immediately.
That's a different question. Would you take it if you could?
Oh, absolutely. Yeah. How about that? And the entire family.
You'd be you'd be running running around at
Christmas dinner. Dog, not the cat.
At least at Christmas dinner is like, here's look what I got you for Christmas. Because I I'll tell you right now. I've been using, GLP for three years. Yeah. And, I turned 55 yesterday.
Okay.
And I stood around with some people this weekend. Some of them were seven, eight years younger than me. Yeah. And I thought I looked I I'm the youngest looking person here. I feel terrific.
They were talking about their health. They're achy. They're this and that. And I said, I have never felt better in my entire life. And and I and and people say, well, what are you're gonna have to take it forever.
Said, take it forever. I think you should spray it out of airplanes. What do you think of that? Yeah. Yeah.
You know? And it's interesting to hear you say that. You would take it if you could. What do you Oh. Do you have autoimmune in your life?
I do. But that's not why I study the disease. I think it just goes back to the proverb, if you study it long enough, you get it.
I think that's not a proverb, that's but hilarious. Well
I remember my thesis adviser got type two diabetes, and he was like, damn it. You study it long enough, you get the damn stuff.
I'm gonna start studying tall people, Denise. That's my
Yeah. Yeah. Exactly.
But but but, seriously, what do you think like, just for general population people, if you could just give it to somebody, you you think it would just make their immune system a little more vigorous?
So much better. Oh, yeah. Because the off target effects now range from platform infectious disease protection to, like, multiple sclerosis to prevention of allergies to our new data on Alzheimer's.
Can you
So talk about health benefits. It's it's quite amazing.
Could you split your research in two and send somebody else in that direction to try to find a faster path for it that way?
It's interesting. Some fields move faster than diabetes, and some fields move slower than diabetes. Mhmm. So I think the infectious disease people have had a hard time getting the concept launched in Europe. Not mostly states are in Europe and that's associated with Africa and African countries because you're doing randomized clinical trials on poor people, so you have to be very careful that the governments believe you're offering them benefit.
Right?
Okay.
So those trials take a lot of effort to get the
Of course.
Yeah. Yeah.
Yeah.
And I would say the trials that are gonna move the fastest are in Alzheimer's with BCG. There is such an outpouring of support because there's no alternative for Alzheimer's. The Alzheimer's community, after we started announcing we've now done three trials in Alzheimer's, are so welcoming. So, oh my gosh, we've gotta do this. Let's figure out how to get a consortium together.
I've never seen a group of researchers so cohesive at moving the field at a faster pace.
And it's easier, you're telling me, because those people are already not being helped by anybody. So so they're well they're teaching. Well Yeah. And they're well-being of it.
It's not like somebody in a neurology clinic has infusions once a week. Okay? Yeah. And you're headed for a nursing home. Right?
You might as well what there's nothing to lose, you're telling me?
There's nothing to lose. Yeah. And when you're in the diabetes field, you have a standard of care.
Right. There is something. There yeah. It's not well, yeah. No kidding.
Mhmm. Yeah. Alright. Well, so what do I gotta do? I gotta take my daughter to a country where they have TB, and they'll
just But is she registered? Because everybody should get registered because that's how we have outreach. We have diabetes trial, not plural, just diabetes trial at partners.org. And anybody who's interested we're not like Victoria's Secret that sends out a news announcement.
You're not gonna get a postcard from Denise. Yeah.
Buy our product.
The 15% off coupon in there.
Yeah. Usually, once a year, we give an update. But when we open up clinical trial slots, if you're interested, you'll get an email. Like, you know, this trial's gonna get launched or blank. And so it's a great way to
Tell me
the pass it.
Tell me the link again.
Yeah. It's diabetes trial Mhmm. At partners dot org.
How to register, and what's next49:45
Okay. What would you say if I told you that this weekend a person came up to me and said, my child was diagnosed, and I've been looking, you know, feverishly for, you know, a way to reverse this. You know? I found a trial that I thought was valuable, and we did it, But I had to pay $40,000 for it. Is that a like, is that a thing that happens?
It struck me strangely when they said it.
You know, it's kinda interesting. Was this in The US or in Mexico?
No. I was in Florida when they said it.
Well, it's called expanded access. Okay? So there's two kinds of trials that legally can do that. One kind of trial is a trial where you go into your doctor and you go, I have breast cancer, but I want you to prescribe me birth control pills. You go, well, that's insane.
And there's a law called right to try that you are obliged to give that person that medicine without any liability back to you. It's called right to try. But there are also ways to do expanded access trials where somebody calls you. It's a lot of work. But somebody calls you and goes, I want that drug, and it's in trial design.
And I want you to figure out the price to do the therapy, and I'll pay you cash. But you have to get that set up through the FDA, and they literally do an audit of your financial records to allow the pricing to be supported.
Okay.
But then there's also nuts out there, so I don't know what category this is.
I swear I don't know either.
And I'll listen. I'll I don't know uncommon.
I won't denigrate it, I'll tell you after we stop recording, I'll tell you what they did. And Okay. Because I'm interested to see what you think. Hey, there.
People go to Mexico all the time to do this kind of stuff.
The right to try thing, does that work in my regular life? Can I can I go to my doctor and say I mean, here's an example? I've somebody just came to me and asked me this. Right? Young girl in her twenties gets GLP from a a family member.
Mhmm.
Besides losing some weight, alleviates all of their kind of IBS kind of Crohn's problems.
Mhmm.
Goes to the gastro and says, hey. You know, look. I did this. I did it, you know, I did it off label. I did it without you, but here's what's happening.
And that and they say, well, I can't prescribe that to you because it's not gonna
be paid for. Invoke right to try. Now your insurance is not gonna cover it.
Right.
Okay? Your insurance is not gonna cover it, but you should read about it online. Yeah.
Right to try. Okay. I'm gonna Right
to try.
I'm gonna check it
has to be an already approved drug. The c g is not approved. Okay.
Yeah. Yeah. No. Okay. Oh, that's super interesting.
I appreciate.
No. It's just nice talking to Yeah. Is there anything that you that I haven't asked you about or that you have No.
We're just so grateful to the public that has so deeply supported us and, you know, really going on a different vision of what we could do for people. I mean, when we tell people the trial's five years long and then we get say, well, you wanna stay on for another five years, and everybody stays on. We're grateful. Okay?
And how often do they take the the the med? Is it once? Is it multiple
times? Yeah. We for the adult trial, we did six vaccines, and these people are stable going out to eight to ten years.
Give me give me numbers about stable. What does that mean?
Stable meaning a normal hemoglobin a one c.
Okay. Jeez. And then
But if you started like, you know, I'll give you an example. Let's say you come in, you got diabetes when you were two, and, you know, you're pretty poorly controlled. Right? Because it's really severe form of the diabetes. And you have you get enrolled and, you know, you're 30, 40, and your hemoglobin a one c is nine or 10.
Okay? There's a lot of people out there still
in there. Yeah. Yeah.
Okay? Yeah. You'll be down at seven, and you look like a hero. Right? Yeah.
You might not get all the way down to a 5.8, but you have had a dramatic drop in your hemoglobin a one c in life.
Yeah. It changed the outcome of your life too.
Yeah. Yeah.
Yeah. No kidding. Are there people for whom much it just does not work for?
We haven't identified many people. The other part of the study that we won't have time to go in today is we also did exploratory limb in LADA, and LADA are those people you've run into before that go, oh, I'm 50 years old. I got type one diabetes. Mhmm. You go, what are you talking about?
And they go, well, you know, they put me on metformin. It didn't work. And now I'm on insulin, and now they did autoantibodies. I have autoantibodies. I have type one diabetes.
Yeah.
Yeah. So we also did a study in those people as well, which is pretty interesting.
Interesting. You I don't feel like you answered my one question, though.
So okay. Hit it again, Scott. Yeah.
When is there a are there people in your lab that you're training to take this forward?
They've Oh, yes.
If you get hit by a car, for example.
Like, what happens? Yes. Yeah. Yeah. Yes.
Absolutely. And the idea is not to have them in my lab. The idea is to see who will distribute it at the best price. Yeah. You're just Walmart, Costco.
You're just trying to get it out. You you think it you think it's ready to go. Right? The idea?
Well, we'll see what I think and what the FDA thinks.
Yeah. That's are you gonna find out when are you gonna find out what the FDA thinks?
Oh, I mean, we're communicating all the time. But when you have something that I mean, the advantage of this drug is safety. Safety. Safety. Right?
Tell me. So if they're if they're not looking at you and going, yeah, Denise, let's do it. Right? The FDA. What what is holding
safe. What's holding it back? Well, you know, there's always another trial to do. So somebody, could say, well, you gotta get the peds done. Well, these trials go five years, so you can really push it out and not have it available.
So I think it's always good to have regulated distribution instead of a free for all in, you know, the clinic start in Mexico and, yeah, Puerto Rico and Cuba.
Having said that, you'd you'd take a mouthful of it if it if they sent it to you.
Yeah. Yeah. Yeah.
Okay. Alright. Well, that's what I wanna know.
I don't wanna get Alzheimer's either.
I gotta tell you. I feel like I'm gonna live forever with this GLP. I know that's not the case, but I it's hard not to feel that
do low dose? Do you do low dose?
I'm taking twelve point five of Zepbound.
Okay. Yeah. Okay.
I'm down 70 pounds.
Wow.
Yeah. No. It's it's it's astonishing how just and I know Do because
think Zepbound's better than the other ones?
I used Ozempic for a while. I plateaued. I did everything I could think of to break the plateau. This is a Mhmm. A couple years ago now.
And my physician said, well, let's just move you to Zepbound because of the GIP component. I I'm very excited for this the triple agonist. I I can't wait to see what the what is it? Ritutatide or something.
Yeah. Yeah. I never know the names. Yeah.
Yeah. The the names are crazy. I think they're they're starting to talk about instead of bone density loss, they're seeing increase they're saying that people are hungry on it, but still losing weight.
Woah. That's a weird one.
Yeah. I'm I'm I I have to be honest with you. Like, I'm it it it's fundamentally changed my life. I I the way I joke about it is if I grew a horn out of my head that said Eli Lilly on it, I'd put some lights on it so you could say it. I'd be so proud of it.
So it just has really made massive improvements for me. Somebody asked me what are the side effects you're having on. I like, well, I'm awesome now. And I I don't I don't I really don't know another way to say it. But it may I'll tell you to your point.
It really makes you think now about, like, I might live longer than I was I started thinking about it. I don't know if we're ready for retirement the way we thought we were. I don't know. Like, I
I Well, everybody should work longer if they can.
Yeah. I wanna keep going. But I'm saying, like, even just having money at the end of your life, like, I thought the end of my life was gonna come sooner. So Yeah. I'm in.
I I I yeah. I I I swear to you, I think there's a ton of good reasons for a lot of people to be using it, and the least of which might be their weight.
Weight loss.
Yeah. So we'll see. Maybe I'll I might be right. I might be wrong. Time will tell.
Just like for you, Denise. Time will tell.
Yeah. Yeah. More studies.
I appreciate you doing this. I appreciate you taking the time.
Yeah. Good to talk to you and all the updates.
Oh, absolutely. Thank you for doing this. Hold on one second for me. Am gonna share that Okay. Thing with you.
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#1936 Naming This
Naming This
Scott and Erika Forsyth plan their next series out loud — the reasons people avoid their own diabetes care, and what happens when you give each one a name.
Jump to a moment
- This is the planning meeting, published. Scott and Erika each came with an idea for their next series and neither knew the other’s. What listeners get is the curtain pulled back — two people working out what to make next, in real time, including the parts where they check whether they’ve already covered something.
- The series has a name and a premise: naming this. After reading through research on medical information avoidance, Scott sketched roughly eleven short episodes, each putting a name to one reason people don’t do the thing they intend to do — avoidance and inattention, fatalism, feeling too far behind to start, stigma, information overload, dreading an appointment, disagreeing with a doctor, “I’m fine,” and burnout. Erika connects it to Dan Siegel’s name it to tame it.
- Nobody is willfully negligent. Scott’s position after twelve years of interviews: he has never met someone who didn’t want to be healthy, so avoidance is better understood as a nervous system protecting itself than as a choice — which is why he rejects the label noncompliant. Erika adds what tends to sit underneath: grief, fear, an identity that hasn’t integrated the diagnosis, or gaps in education and support.
- Stigma gets a genuinely different reading. Scott argues that if you don’t care what other people think, stigma has nothing to grip — illustrated with a story about a woman who wouldn’t buy a car she liked because of what her friends might say. Erika reframes it precisely: the public stigma is external and real, and self-stigma is the part where you choose whether to internalize it. They agree to make it a full conversation.
- Erika’s contribution: caregiver distress in the age of constant data. She wants to examine what it does to a caregiver — and to the relationship — to have someone’s glucose visible twenty-four hours a day. Scott offers a real example about being able to read his daughter’s day off her CGM and wondering whether he’d find that comforting if he were her. Erika’s framing question for the future episode: when is the checking serving you, and when has it stopped?
- Erika Forsyth, LMFT — Erika's practice — now licensed in Oregon, California, Montana, Utah, Vermont, and Florida.
- Mental wellness series — The full Scott and Erika catalog, including episode 1196 on ambivalence and motivation referenced here.
- Juicebox FAQ search tool — The searchable index Scott uses on-air to check what they've already covered — filter by mental wellness and search a term.
- Touched By Type 1 — Orlando — The free September 26 event Scott and Erika are both attending.
Every word of the conversation
Cold open & sponsors0:00
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Two ideas, and nobody knows the other’s2:05
Hold on.
I'm getting nervous. Yes.
Is that what's happening? You're nervous?
Yes. I'm getting nervous. Alright.
Yes. So we've both come to this short recording today with an idea for what we can do next together, and neither of us know what the other's gonna say. And then I said you go first, and you had a small stroke off microphone. So I'll go first because I because I want you to be comfortable. Okay?
Thank you.
You're very welcome, everyone. Erica's back as you can tell. Let me see where I put my idea for this. Ah, here it is right here. I think I'm gonna be calling the, the series naming this or something like that.
Where “naming this” came from2:44
Mhmm.
So here's where it comes from. I have been picking around recently in research that explains why people specifically with type one diabetes may or may not take the care of themselves that that their doctors or that they would even hope that they would. So there's research that tells you what gets in the way of people making those decisions. Right? And the way I'm kind of looking at it here is oh my gosh.
Should I just tell you? So yeah. Yeah. So I I basically have it broken down into it looks like maybe 11 episodes, but they're gonna be shorter. I have avoidance and inattention, and I have fatalism, the idea of, like, this is not gonna matter no matter what I do anyway.
I'm too far behind to start, so kind of low self efficacy. Everybody knows, and it's a stigma thing. Like, they they don't wanna you don't wanna pop your head up and be stigmatized. I have too much information, so I froze. So a little information overload.
A trust break kind of a thing, and this breaks into a couple of different episodes. So the idea of, like, first of all, they they got it wrong, and I paid the price is kind of the like, I got bad information, and now I'm the one who's suffering. I have walking into an appointment that you're dreading, and kind of the third part of this one part idea is disagreeing with your doctor and how to do that without kind of blowing up your whole thing. So kind of like a three portion around the one idea of I'm not getting good advice. Mhmm.
The adaptive kind of I'm fine. This is fine. We're all fine. Don't worry about it thing. Diabetes stress, so burnout or depression.
And excuse me. And then I thought we could do kind of, like, a closing kind of, like, a structural closing about why all this isn't your fault and, you know, kind of button it up to there. That would be between you and I. And then on the other side of it, not for each of those things, but I'm thinking about bringing Jenny in on the I'm too far behind part, and there's too much information, so I over I froze. They got it wrong.
I paid for it. Walking to an appointment that you're dreading, disagreeing with your doctor, the I'm fine, so it's fine thing, and the burnout. So I would do probably 10 or 11 pieces with you, do six or seven with Jenny, look at how they can kinda companion for each other. And then that was my idea.
I so I like it. So the overarching title or theme is what what did you say? Was the
I I guess you have to name the things that are happening to you. So the so where this started was a conversation I was having with myself. And sometimes when I say that, you should infer that I was having it with an AI bot at the same time in in my car while I was driving. The I but I had just looked at a lot of research around like, there's, like, there's, like, nearly a 100 studies about, like, predictors of medical information avoidance, basically. And I am I am almost done being baffled by it at this point.
Like, you see it all the time. You know, I I take this pill because I don't feel good. Three months from now, I feel better. First thing I do is stop taking the pill. That it happens to people at every level of desire, intelligence.
It's just it's just a human thing. It got me thinking about that, and then I wondered if there was research around it. So I dug through the research a little bit to find it, and then I basically put together what are some common reasons why these things happen that that are, I don't know, that are found in almost all the research, and that's that's shorter list that I came up with was there. Anyway so then I figured, like, when you and I talk about stuff like psychosocial stuff like this, we're always saying if you if you name it, then that's a way to move forward. So that's why I was thinking naming it.
How'd I do?
I I well, I like it. I was just thinking of, doctor Dan Siegel, who we've talked about before. He kind of became known for the saying name it to tame it. Mhmm. And, also, Brene Brown is big on, you know, when you're noticing something, just naming it is part of that process of moving forward, having that awareness of what's going on and what you're feeling.
So I I love even the title of, you know
Thank you.
Naming it naming this
So what do you think? Can we do it? You busy? You got something going on?
I think it's no. I think it's great. And I'm as you were listing some of the topics, I was thinking about I know I had one idea, but they're really kind of two different ones actually that might fit in to this series.
Okay.
Do you wanna process some more of your ideas?
Yeah. Help me help me think it through a little bit because I I mean, I have a proposal put together to send you, but I still, at the same time, I I think talking about it helps me understand it because I the way the proposal came is from me talking about it. It's really the only way I'm able to do this stuff. So, yeah, let's go through
Avoidance isn’t a decision8:27
it. So the first avoidance versus inattention. Too far and then the next one was too far behind to start the stigma. I mean, I almost as we're naming these things, thinking about, you know, what are these are barriers Mhmm. To having, you know, a quality of life, not necessarily just in from the the number perspective, but from your psychosocial emotional perspective.
Well, around avoidance, I guess the way it occurs to me is that it could look like a decision from the outside, but then I think it's probably more of, a, I don't know, like, a nervous system protection thing or just, like, I just need to be out of this so that I don't have to deal with it. Because that to me, it's kind of an extension of you know, for all the people I've talked to over a dozen years, I I always say I've never met anybody who is willfully negligent. Like, I've never met somebody who's just saying, I don't wanna be healthy. And then, you know, when when you get, like, tagged by your doctor as, noncompliant. Mhmm.
I mean, that that could happen. That could be written on your folder, you don't even know it. Mhmm. And I just don't think people are noncompliant. Like, I don't think people show up at a doctor's office thinking, I'm gonna ignore what's happening here.
I don't care what my health outcomes are. Screw this. Screw them. Like, I think there's other reasons why it happens. And so when you're avoiding digging into this, I don't I just don't think it's a purposeful decision.
So, like, to me, that's kind of the perspective of that conversation from my perspective. But I don't know what you'll bring to it when the day comes where we record it and I say that.
Yes. Oh, I'm thinking, yeah, avoidance is is what we see. Right? The the behavior, but what is driving that can be so many factors that we can get into. But I'll name a few.
Right? Grief.
Mhmm.
You know, you're not the the idea and the identity around diabetes hasn't been fully integrated for very for variety of reasons. Education, awareness, the fear
Yeah.
Of, you know, uncertainty around pre bolus. I mean, we could you could even talk about avoidance of pre bolus thing and name a lot of different factors Yeah. That we've we've kind of talked about before.
Well, even when you bring up
I like it.
Fatalism, and the grief underneath it11:05
When you bring grief up there, like, kinda jumping into the second idea, like, that whole fatalistic, this doesn't matter. Everything's predetermined anyway. That's gotta just be grief to begin with. Right? Like, isn't that just a reframing of grief?
Like, you know, nihilism, basically? Is it doesn't matter? Everything's just spinning off. We're all gonna die anyway, like that kind of vibe. And I I mean, that just couldn't be I mean, there's obviously, that can be further from the truth.
There's a ton of things that you can impact around your health that will make, you know, the the the days and weeks and months of your life go by much smoother and more enjoyable. So, anyway, I feel like that's probably, like, kinda baked into that there.
Mhmm. Yes. Yes.
That's it. See? It's it's gonna it's gonna write itself as they say while we're while we're conversating. And they don't have to be long conversations either. They could be as long as they need to be.
If it's twenty minutes, if it's thirty minutes around one idea and we get through it, then then good. If it goes longer, I'm fine. Who cares? But in the end, what I would like is for I would almost like for the titles to be a road map and then the conversations inside of the title to be, you know, the pathway from rest stop to rest stop maybe. And and I just don't think that I mean, I don't think about my life this way.
Too far behind to start12:29
I don't imagine anyone does. Like, you know, when you when you when somebody says to you, hey. Let's clean your bedroom, and you look at it, and it's so buried under dirty clothes and and and ignoring for weeks and weeks and weeks, you do get that feeling of, like, I can't impact this, so I'm too far behind to start. But that's not really true. You know?
You just go one thing at a time, and before you know it, you find the floor. It's I mean, if that wasn't true, then the sink would be piled to the ceiling all the time. Because every day I look at it, I think, ugh, no one touched one of these dishes. I guess I'll start. And then it feels like it's gonna be forever, and 20 later, the the sink's clean.
So I I don't know. So that's just another kind of piece there, the I don't know. Around that feeling, like, there's just no sense in doing it because my a one c's already ate. And I again, just doesn't seem like the right way to think about it to me.
And I think the idea of, you know, one one dish at a time or one item at a time is helpful to kind of interrupt that feeling of overwhelm and, you know, things are there's so much to do. Where do you start?
Mhmm.
And thinking about it strategically in that way of, you know, small bite sizes. And maybe what we can also explore further is, well, how do we get into how do you initiate that first step? Like, what is it in your mind or body or heart that says, okay. I'm just gonna start this one dish.
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That's visit.twist.com/juicebox. Don't forget, twist has two i's. Well, that's gonna be the hard work you're gonna do on your own before the conversation. I don't I all the smart thinking will be for you. I'll say things like the dishes are piling up and your room is dirty and stuff like that.
But those are good analogies and images that we can all
relate to. Skills, Erica. That's all. Mine are just dopey. Stick, again, like, you know so there's that piece and then getting to the idea of, like, stigma and is like, what is stigma really?
What stigma actually is15:47
Right? Like, because why do I why do I care what how do I put this? I heard a guy telling a story the other day. His mom is retired. She's got plenty of money.
Right? And he's the one who's in charge of helping his mom buy something when she needs some. She's older, and she comes to him as an adult, like, when it's time to buy things. So the poor lady has, like I don't know. Somebody hits her car or something like that or a car stops running.
And he says, mom, you know, time to go buy a car. She goes out to get a car and sees one she likes but won't buy it. And when he asks why, she says, well, I'm afraid. Literally says, I'm afraid of what my friends would say. And I think to myself, like, that's insane.
Like, you you care what, like, your but there it is. She's a grown person. She's lived through this whole life, and she has the money to buy a certain automobile that she will not buy because she's worried about the stigma that comes with it. And is what is stigma is all I could think when I was listening to that because that's a self imposed thing. She's putting that on herself.
Like, yes, it might happen, but you can't feel it if you if you if you don't feel it. I don't even know another way to say that. Like, if you don't care what another person thinks of you, then I don't know what stigma is exactly. Does that make sense? And, you know, so I know that's probably not the prescribed way to think about outside pressure, but it's gotten me pretty far.
And, I would like to share it with other people. I don't give a shit what anybody thinks, Erica, is
all I'm saying. Yes. We yes. Okay. We know.
So well, I you know, I I'm pausing and letting that kind of settle in because I don't think I've thought about stigma in from that from that perspective.
From the root Yeah. My caveman perspective. I understand what you're saying. Yeah. Yeah.
I think of bullying like, cyberbullying the same way. That throws me for a loop. They're on a device you can shut off. When you shut off, they don't exist anymore. Like, I don't there are plenty of people who don't like me, and some of them spend time on the Internet talking about it.
If you're listening, any of you, I'm unaware of you and couldn't possibly care less. You're making no impact on my life whatsoever. But I don't know why some people can say that and mean it, and some people will be like, well, I can't buy that car because what will people say? I don't know. You know what I mean?
Yes. Well, I think there's I guess, when I when we when you said stigma, I'm you we think of the typical definition, which is kind of the the the negative or beliefs or attitudes that externally people hold. A group, society, the type ones versus the type twos, like, those kind of those stigmas that we hear and we know, that's external. Right? The public stigma.
And so what you are now defining is more the the self stigma. So based on whatever that negatively held view that is public, you then choose or not to internalize that.
We're gonna have a fun conversation around
that.
Okay. Okay. Good. Good. Good.
Sorry. We're going to
No. No. We're not.
To in-depth. Okay. So stigma.
You you never heard tickle their ass with a feather, Erica? It just you get them thinking about it. And they're like, oh, is that series gonna come out next year? That'll be awesome. I'd love that.
I'll I'll keep subscribing. Case they hit a couple clunkers along the way, they'll be like, oh, let me tough it out. I wanted to get to that naming this series. Let's information overload. I mean, that one is obviously as real as it could possibly be.
Information overload, and freezing19:31
So you just have to find a way to parse that information, and I think, you know, small bites. Right? But, also, how does information overload you know, from your perspective, how does it stop it? How does information overload turn into freezing or
Yeah. Or inefficient? Or nothing.
Yeah. Yeah. Yeah. Oh, you're right. Exactly.
Three problems with the appointment19:53
Then these kinda, like, little grouping here that's around health care. Like, they got it wrong. I paid the price. When you walk into an appointment, dreading the appointment thinking that, you know, the anticipation is is too much to take. And then once you the way I kinda think about it, like, once you come up with a idea that you would like to enact and the doctor pushes back, like, how do you do that without blowing up your relationship and and then probably causing another speed bump?
So those three might end up being one conversation. There might be three. I have no idea. We'll have to see as we go.
Yes. Those those are all so real and so valid that I you know, that there's that you could go back to naming stigma, shame, information overload. Those all of those initial themes, the avoidance
Mhmm.
Are all can be connected to your experience of the the doctor's office, what may occur, or what you might fear might occur.
The distress numbers20:57
The the diabetes this is just I'll just give you a number. Out of one of these, bits of research, from 2024, they think diabetes distress is at twenty one point seven percent in the type one community. So type one, we'll see at high distress, twenty one point seven percent, moderate to severe, thirty one percent in adults. And that's that those are numbers from 2025. So, you know, so talk about that piece to adding and naming it aspect to that.
And then the end of it really is so if, like, five to seven percent of newly diagnosed people receive receive some sort of a formal education in the first year. And so I kind of think that, you know, the safe you know, like, that's not a lot of people being given good direction. And then from there, I think self blame starts to jump in. All these other things jump in, and that's a structural issue, not a personal failure. But I think they all end up feeling like personal failures when they're over.
So if there's no class there, you gotta go find it somewhere else, and I don't know how you're supposed to be able to go find it. Like, I say that all the time about things. Like, I think if I knew what to do, I'd be good at it. But how am I supposed to find out what to do? Like, you know, when you look up at somebody Where do
you start?
Yeah. Like, where like, how am I supposed to get into the club who knows how to salsa dance or whatever? You know what mean? Investing. Like, you know, how do how like, how come I see some people have money put away for the future?
I don't know about that. You know? I Mhmm. Had a conversation with my daughter's friend the other day sitting in this room, And she's 22, and she's like, I'm gonna be working my whole life. I'm never gonna have any money.
And I was like, no. I was like, that I was like, you're you're two years away from a a profession where you're gonna make a reasonable amount of money. I said, you're gonna put, like, a a tiny bit of it away? She's And like, that's never gonna amount to anything. And I had to walk her through the you know, I said, look.
If you just take just take as, you know, the the poorest number that the stock market's done in the last ten years and apply it to the next ten years, if you put this tiny amount of money away, you know, every month, like, look. It turns into a million dollars. And she was like, oh, I was like, yeah. Like like, that it'll be okay. Like, you can do that.
You know? But she was given up. She's 22 years old. She'd almost given up. And and I was like, no.
No. No. Like, that's just but then I realized, I looked at her. I don't like, no one told me that growing up. It's a thing I had to try to figure out for myself.
But I also watched my brother figure it out for himself, and my other brother not figure it out for himself. And so she's she's a coin flip. Is she gonna get this or not? But all of sudden, somebody says it to her, and it makes sense, and now it's in her head, and now she's got a reasonable shot at doing it. And I feel the same way about the diabetes stuff.
So Mhmm. That's pretty much it. That's my idea. What's your idea? I gave you plenty of time.
What's your idea?
Erika’s idea: ambivalence23:59
Mhmm. You did. So I think my two themes that we I know we talked about that we probably have done series on. The first one is, you know, motivation for change, and I think we did do did we do an an episode on motivational interviewing, or we've talked about it? But thinking about avoidance, I almost appreciate and maybe not separate from or in addition to the word ambivalence, because avoidance can have a, you know, some emotion around that.
Like, you're you're being avoidant. Like, that's bad. That's negative. Has a negative connotation. It can.
It doesn't always have to. I think ambivalence also demonstrates a similar behavior or outcome
Okay.
Of of choices or patterns, but there might be different root causes underneath that. Like, so if we're talking about ambivalence towards diabetes, ambivalence towards your management, ambivalence towards, you know, whatever it may be, that's where people get stuck sometimes. And it might be for similar reasons, but I just thought that is a hard place. We all we all get ambivalent about different things in our lives. And if we and please remind me if we've already gone into detail about this, but I just I feel like it's coming up a lot more.
Okay. Well
And I think it's a good and hard topic to process through. But in in the in the umbrella of, you know, motivation for change and addressing the the the really a barrier, right, of ambivalence.
Let me tell you what I just did. I went to juiceboxpodcast.com/jbfaq. I went on the left side, clicked on mental wellness to keep my search just to mental wellness, then I went to the search bar and typed in ambivalence. Came back with episode eleven ninety six, which I'm now opening up.
Okay.
Erica and Scott define and discuss ambivalence and motivation. It's about an hour long conversation, but I'm gonna tell you if you think it needs deeper mining, then I think we should talk more about it. Mhmm. But why what's got it in your head?
I think when what is challenging, I will I will disclose, you know, as as a therapist when I'm supporting and working with individuals or families and a a client wants to make changes.
Mhmm.
But they are noticing that they can't. Part of the work that we do is trying to identify what are those barriers. Is it fear? Is it grief? Is it you know, do you need more exposure in education and awareness?
Do you need more social support, family support? And if if you don't need all of those things, then what is that ambivalent part where maybe you you want to, lower your a one c or you want to pre bolus. And while we don't go into the details of that management side, what we're trying to understand is, you know, what is what is interfering with that? Is it past is it trauma? And so I was thinking as particularly as you were talking about naming this series, perhaps we could go back Put it into that.
And connect it. Yeah.
Yeah. That's what I was just thinking when you were saying now. I thought, oh, we we should just put it into that series and make that fit there. That I didn't have all the answers. I just listen.
I came up with as much as my little brain could come up with. And then, and then my notetaker kept track of everything I was saying and then put it back into order for me because if it was up to me, I'd never I mean, you hear how I think. If even if I thought with a piece of paper in front of me, would just be a bunch of words, and then I'd be like, don't know what to do with all this. So, I just didn't hit on ambivalence when I was going through and chatting through the things that I found, like, valuable for us. So, yeah, put it on the list.
Okay. Yeah. So that that was for the add on perhaps to the series, but what has been really, ruminating for me is I know we've done the caregiver series, but the caregiver distress and the anxiety around the tech and the management and the hypervigilance. And, again, we I know we talked. Right?
Caregiver distress and the devices28:41
Have we do you wanna do the search again? What do you what
do you want me to search for? Hold on a second.
Caregiver distress, and tech, you know, device management, hypervigilance.
So this is more comes up in an episode called supporting caregivers, which is something that you and I did together. Yes. And it comes up in an episode called emotions of diagnosis, diabetes, distress. Mhmm. Sharing the care of a teen, one child.
I mean, honestly, I don't something that hasn't come up, but I don't think we've dug into it specifically, especially around the technology.
Yes. Yeah. Let's I think this, I've been thinking about this. You know, we talked, on the cruise. We this was this topic was addressed in in how, you know, parents support children with type one.
And you asked myself, and then you asked a parent, and you asked another person, you know, would you want it to be different? Or how how would you have preferred to be raised? And, obviously, when I was raised, we did not have Dexcom Follow or any of the follow ups Yeah. Thankfully. There's yeah.
Thankfully. Because I did not want anyone to know. And so I think there's this just something to explore and process. What does it mean for the caregiver to have this access twenty four seven? And, yes, it is certainly beneficial and helps reduce, you know, long term complications by being more in range more frequently.
There are all all sorts of data around that, but going back to the the emotional burden and toll that it takes for the caregiver to have this information.
Yeah.
And what do you do with that?
And what does it do to the relationship too? To feel because you're gonna feel spied on no matter what as you get older. Right? Like, at some point, it'll feel like, oh, my mom's watching. She's helping.
I'm okay. I feel safe because of this. But there's gonna be a moment where you're like, stop looking at me. I don't need you knowing what I'm doing all the time. Like, you know, I don't tell Arden that, you know, I can tell how she feels some days or, like, you know, she got a tattoo recently, and somebody texted me she's done.
And I looked and I thought and I responded back to that person, not to to to Arden. And I said, no. I can tell. Like, I could tell on her CGM when it started, and I could tell on her CGM when it was over. And I don't know that that's a I don't know that I would find that to be comforting if I was her.
Do know what I mean? So, I mean, comforting maybe, but not I don't really know how to put the words to it. I don't know if that's the thing you want other people being able to know about you unless you're sharing it with them. Right? It just it feels like a I don't know.
It feels like prying in a weird way.
I I I think understanding where it is, is it helpful, supportive, protective versus does it ever become feeling like a violation
Yeah. That's a good word.
Privacy. Right. I don't know. Is that too strong?
I'm not sure. I know. I I was reaching for a word, and I couldn't I couldn't find one there. But I I mean, not that it's purposeful. Like, it's not a it's not like punching someone in the face, but maybe the sting is there.
You you know? So I don't know.
Like, I I she's definitely taking it. Okay. Sorry.
No. Don't don't be you didn't speak I'm sorry. I wasn't looking up when you started talking. I thinking instead of looking at you. So
The I think conversations around, yes, when is that boundary crossed? And it will it will be, and that's part of life with type one. And then what do you do with that? And then conversations around how many, you know, displays are we gonna have in the house, in the classroom. What are you and, again, this this is all age and stage dependent and developmentally, you know, needs to be filed in that way.
I think so.
Just something to think about.
Yeah. Yeah. No. Like, because, hold on a second. There's a telemarketer trying to I I don't wanna be telemarketed.
So, Because there's a difference between and I think as an example, I think Sugarpixel is a fantastic device. And as a matter of fact, if you wanna buy one, use my link, and I think I make a dollar custom type customtype1.com/juicebox. But I have talked to people who's like, have one in my kitchen. I have one in my bedroom. I have one in the kid's room.
And at at a certain age, like, I get it. Like, you walk through the house, you see the comforting number or the color that makes you think, like, oh, in range, and it's comforting, and it's it's a little out of it's funny. It's instead of out of sight, out of mind, it's almost insight out of mind, if that makes sense. But there's gotta be a day where some people will think, could you please stop broadcasting my blood sugar all over the house? Right?
When the number is in every room33:41
Like, put it in one place. Have it where it's for sure needed. Like, I don't know. Like and I think that because you said age and stage is what made me think of it. Like, there's gonna be a moment where, like, a a switch is gonna flip.
Because I've been through a lot of switch flipping phases with my daughter through diabetes, and you think they're gonna end or you think, oh, that one was the last one. That's certainly not how that works. And so you move forward, and there's times where it's smoother. It's times where it's not. There's times where new problems come up, old problems reappear.
And in the end, my goal is always just twofold. Like, I want her to be healthy and prepared, and I'd like it if we still liked each other when this part's over. It's the two things I'm shooting for. You know? So so far, so good.
But
Yes. It's a
we're walking a fine line, I would imagine, some days.
Yeah. So there and there's no I think, wanting if we do go back and and have this kind of bit larger conversation around caregiver distress and devices and relationships, There's no right or wrong way, but I think what I would enjoy doing is having conversation and asking questions that you can ask yourself to be aware of. You know? When when is the checking serving you or not?
Mhmm. Yeah. I'm with you. Alright. Those are good ideas.
Making the plan35:09
See? Look at what we've done here. We've let people we've always done. We've pulled the curtain back. We've let them they basically are in our Zoom meeting where we're, like, trying we're trying to, like, work out what we're gonna do at work next time we get together.
Which one do you wanna do first?
Oh gosh. I don't know if I have a a preference.
Okay. Why don't we do why don't we do this? Why don't we do the shorter one first
Okay.
And then do the longer one after Christmas? Or and even that's too far. Maybe we can get it done before Christmas. Only do why don't we because it's August right now. You and I are gonna go do touch by type one.
If oh, by the way
In a month.
Septem what's the date in case this comes out before that? September? I got it. I it. Got it.
September 26. Touched by type one. It's free. It's in Orlando. Go to touchedbytype1.org for more information to how to get your free tickets.
Now I'm, like, pressuring myself into putting this out before the '20 I can do that. So we'll go do that. We'll come back. Let the summer end. You have children.
Let your children go back to school. Right? We'll let Labor Day we'll we'll, you know, we'll let the weather cool off a little bit. We'll jump in and do the short one, Then maybe we can do the series and get the series done before the end of the year so it can come out at the beginning of the year for people. And after that, we'll figure out what we're gonna do next.
That sounds like a good plan.
We have plans. Look at us. Yes. Awesome. I
should go I also have fun new new I have fun news that I am newly licensed in the state of Montana. Hello. I I haven't really said done anything about it besides put it on my website, but I am now licensed in Montana.
No kidding. You can now help cattle and 16 people. Is that correct? By the way
Hey. My dad's from Montana, so be be careful.
I'm not gonna listen to you. I'm gonna go the opposite of be careful. If it if if I had the ability to be somewhere else when it was snowing, I would live the rest of my I would live that four or five months in Montana happily. So
So beautiful.
Yeah. Yeah. Yeah. Please. Are you kidding me?
That's I just gotta leave before the 19 feet of snow comes. Yeah. I don't I don't think I have the fortitude, as they say, to to tough it out in a house
To shovel some.
For a week and a half before I can get back to, like, civilization. Although alright. I'm I'm also, I watched Yellowstone, and I loved it. So I think that I think that I feel like I could live on a ranch is what I'm saying based on the television
Depiction?
Depiction that I saw with with Kevin Costner. I I don't think I could throw a body off a cliff, but I think I could walk outside with, like, nothing but green in front of me. I think I'd be okay with that. So alright. Cool.
Well, congratulations. Tell tell us all the states real quick.
So Oregon, California, Montana, Utah, Vermont, and Florida.
Oh, six up to. Yes. Loving it. Ericaforesight.com?
Yes. Excellent. Thank you.
Yeah. Go get therapized by, Erica. Is that a word?
My husband likes to use it. Yes.
Wait. You're telling him what to do?
Never. Alright. I'll talk to
you soon. To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox. Or give them a call at 18774. That's +1 (877) 489-4478, and tell them Scott sent you.
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