#978 Diabetes Myths: Dos and Don'ts
A brand new series examining the myths surrounding diabetes.
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Scott Benner 0:00
Hello friends, and welcome to episode 973 of the Juicebox Podcast
just like that Jenny's back, and we're gonna do another diabetes myth today, today's myth is that there's a cure and they're hiding it. They, whoever they are, are hiding the cure from you. They have it, but they won't let you see it. We're gonna talk about that today. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Save 40% off your entire order at cosy earth.com and use the offer code juicebox. Get a free year's supply of vitamin D and five free travel packs with your first order at drink ag one.com forward slash juicebox and please don't forget to use the links for on the pod decks comm us med all the sponsors. They're right there in the show notes of your podcast player and at juicebox podcast.com. Jenny Smith works at Integrated diabetes and you can hire her at integrated diabetes.com Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes doesn't matter if you have type one, type two Lada doesn't matter how you eat, everyone is welcome. Great conversations happening right now. This episode of The Juicebox Podcast is sponsored by touched by type one, and I'm about to speak at the next live touched by type one event. Sometime during this episode. I'm gonna give you all the details about that free event that's coming up soon in September of 2023. Come out and see me while you touched by type one.org. Okay, we are recording. Alright, Jenny, we are back to do another diabetes myth. And because yeah, you and I were just chit chatting. I don't have the document open. So just give me a second here to open that up. And let's see what we have done so far. A lot. We have done. We have we're getting through it. We're doing we're doing well. We did last week we did. The big one was that there are no diet restrict or excuse me that diet type ones have a specific diet restriction. And we talked all through that. So then we did complications are inevitable that blood sugars don't alter how you think. So today? Oh, you're ready to be snarky. Huh, good. I think we're gonna have to be a little snarky during this one. Okay. That there is a cure for diabetes, and it's being hidden from us.
Jennifer Smith, CDE 2:55
Oh, yeah. So that's such a hard one. Yes, honestly. And I don't I mean, it's, it's like a deep, dark, scary rabbit hole. If you're going to go down and talk about that. I mean, we know what we know. What I find astounding, personally, and kind of professionally or clinically, is that there are really cool things that come out, right? Like if this proved to be beneficial, yes, rats, or whatever they're studying it in. But we're planning to move into human trials. And you never end up hearing about those. And where did where did this product go to? Or where did this, you know, procedure? Where did it end up? Why is it not going any further. And there may be a very good reason that it never went to human trial that it never went any further and thus we never hear about it again. Right? But I think that's where maybe the myth comes from is, you hear something here like, wow, that's gonna be awesome. And then five years later, it's gone. It's a poof, gone. Where did the person disappear to?
Scott Benner 4:11
So what it reminds me of, and so I listen, I'll just say right now. That's it. That's a conspiracy theory. Right? Like, that's genuinely what that is and letter of the law. None of us know for sure. Maybe there are five really wealthy people who have been cured of their type one diabetes, we wouldn't know about it if that had happened. But it seems unlikely to me. But I think it gets perpetuated. First of all, because I think people's minds, like thinking about conspiracy stuff. I think it's kind of fun, right? But there's that story. I think everyone's heard a version of a story like this growing up. The one that was told to me was that, you know, decades ago, a guy invented a light bulb that never burned out. And he was super excited. And so he took it to a big probably General Electric or something like that went into a meeting. I had all this stuff, they're here with my light bulb samples, here's my, my work all my notes. I've made a light bulb that won't burn out. And they said, thank you very much, wrote him a check, took all this stuff and lit it on fire in front of him. Right, right. So that's the story that they told. And it's a, I don't know if it's a real story, or if it's a wives tale, but it's the idea of like, why would the company make light bulbs that don't burn out, they sell, they sell light bulbs, they want to keep making light bulbs. And then that's what happens around this. Why would a pharma company, you know, put themselves out of business, they're selling insulin. But here's the here's the thing, though, the people who sell the insulin, they're not the people who are looking for ways to cure diseases. That's not That's not the job's not the business they're in. Right, right. Now, somebody's gonna say, Okay, well, yeah, but they pay it off people and they're doing I don't know if that's happening or not. Let's be honest, that nobody knows for sure. But the way I always end up thinking about it is is that I don't know, when large amounts of people are involved in the conspiracy. It's difficult to keep it quiet. Like, you know what I mean? Like, do you think if there was a way to think about it? Yeah. Like, if there was really a cure for diabetes? Someone wouldn't whistleblow that. You know what I mean? Like, it would just take one guy with type one to know that to be like, Yo, and then I don't know.
Jennifer Smith, CDE 6:24
No, I yeah, I, I can see both sides. Yeah, I really can see both sides, I can see the standpoint of, as you said, the person or the business side of it selling, not really having any idea what's going on in the research side, they're just selling a product. I mean, it is a business, right? Well, whether it's technology or a medication or whatever, it's a business, sell the medication, right, get more users of this brand of insulin versus that brand of insulin, right. And I don't think any company wants to put themselves out of business. But that doesn't mean that they're going behind the scenes necessarily, and preventing research that could prove to many, many people an increase in quality of life from not having to manage like we do
Scott Benner 7:22
so. So oil companies aren't trying to figure out how to make electric cars, for example, but that doesn't mean that they're falsely propping up the gasoline industry. They're just that's not where they're putting their efforts. So that's the one thing so you know, people said, Hey, there's a secret cure, and Big Pharma doesn't want you to know about it. This is the thing that comes up so frequently online, like people, there are a number of people who are ultra sure that this is being kept from, it's why I put it in here, and I brought it up. Now, the next person says that it's even a myth that they're even working on a cure. And they say they again, like who the hell help, as you know,
Unknown Speaker 8:03
they right.
Scott Benner 8:04
But there are plenty of researchers out there working on cures for all kinds of things. Do they think they're going to come up with one? I don't know. I really don't know. Maybe they're just dorky lab, people who are going to make a living off of working on stuff for a lifetime. And maybe they literally think they're gonna get to it and etc. But it's happening. I've actually spoken to the people who are doing it like there are people working on it. I don't know that that means they're gonna figure it out. Right. And so I think that where that kind of comes like to ahead is the thing that almost everybody has been told, right. And I mean, I'm sure somebody said it to you and you were diagnosed, they said it to me when Arden was diagnosed, don't worry, a cure is like five years away. Touched by type one is a longtime sponsor of the Juicebox Podcast. And they are the people who gave me my very first chance to speak live to people living with diabetes. And I'm back at their event again, this year. Now go to touched by type one.org. Click on programs, then go to annual conference. And you're going to see that our free conference for individuals of all ages and backgrounds is coming up on September 16 2023. And the registration is open. The button is here and you can click it click on it. Click. I did it. It's free. What'd I just say? Registration is free. The entire day is free. I think they even feed you touched by type one.org. And I'm going to be there giving my talk he talks and guess who else I hear is going to be there. A little bird told me Jenny Smith is going to be there and know what is this? Jenny and Scott in Orlando on September 16 2023 for free. Are you kidding me? What are you people doing still listen been touched by type one.org. Get over there. It can it fill up? I think it could you know what I'm saying? Like don't wait. Yes. Do we know where that number came from?
Jennifer Smith, CDE 10:15
That's, I have. I've looked, honestly, I've looked where did it because when I was diagnosed, so many years ago, it was five to seven. That's what they're saying. That was the consistent thing that I heard all the way up until the point that I left for college. I heard five to seven years, five to seven years. So where did this random like? And where's their research? Like? Where are they getting it from? to actually pull a number like five to seven years? We're going to have a cure? I don't know. Yeah, they pulled it out of the atmosphere is? That's my honest belief. So
Scott Benner 10:55
my, my expectation is, it's an amalgam of things. So at some time, somebody must have said, well, there's this thing we're working on. And when we get over this last problem, it'll take us about five more years to get it out to the general public, right? And then someone hears that and goes, Oh, it's five years away. Correct. And then it's whisper down the lane. And then before you know it, you're in a room with a nurse who has been a nurse for two weeks, and she wants to be comforting to you, I guess it could be He, they want to be comforting to you. And they say a thing. This is where I think this comes from, I think it's meant to be comforting. That's really what I think, you know, yes. So
Jennifer Smith, CDE 11:33
absolutely. No, that's a very valid point. I think that's also what my, what my doctor, when I was first diagnosed, was probably trying to comfort my parents. And, you know, I was old enough at that point, to also have an understanding of what life with diabetes was going to look like and was in, you know, what I had to do. And so maybe it was also for my earshot, to hear something that was good. Like, you're not going to have to deal with this forever, just hunker down, and do what we're telling you do for a little bit of time. And then you'll get here, right?
Scott Benner 12:11
And then five years from now will tell you just it's probably just five more years like that. Yeah. Now the unintended, like significant health consequence of telling a person that this thing they were just diagnosed with, is going to go away in five years. Do you? Are you thinking the same thing? I'm thinking it's people then don't take care of themselves? Because they think it's temporary?
Jennifer Smith, CDE 12:32
Could be Yeah, absolutely. And I think that's the reason that when I heard that, from the beginning, I never really, I never took that, despite it coming from a clinician in a white coat in a very professional, you know, office space, my age, I just didn't take it for anything. I was like, I hear this great, whatever. But mom and dad are taking all the education that they were putting in, you know, to effect and teaching me how to use it incorporate into my life. And that was, that was what I did. The idea of something that was so unknown in what it could potentially be five to seven years from now. I don't think I even really considered that it was just do this, do this. And it means that I can do the other things in life that I've always been doing, and that I always want to do. But I think you're right. If somebody hears that in just a short time, maybe I don't have to really pay attention, because eventually, something's going to take care of this for me. So I just have to make it through enough.
Scott Benner 13:41
I've heard that from a number of people I've interviewed, it's one of the sadder things like Oh, it got away from me because I thought it wasn't going to be forever and then my health got worse and that and I didn't know really how to take care of it. So it all snowballed from there. Listen, generally speaking, I think people would think of me as cynical. I'm not cynical, I think of myself as realistic. Except this got the better of me when art was first diagnosed. So in a normal situation, if you told me don't worry, people are going to come up with a matte like they're going to, like, make a thing on the Earth that doesn't exist anymore, I'd say probably not. You know, like, as a species, we're not running around, inventing things constantly and making diseases go away. I wouldn't believe that. But when Arlen was diagnosed, and she was just a baby, the first time I saw one of those, those online things about a mice, you know, we cured a mouse and we're gonna move to human trials. We just have to fundraise a little bit like you know, it made it sound like they were just a check away from it happening. I went to my wife and another room, I was crying. Like I said, I said to her, how lucky are we that Arden was diagnosed with type one diabetes just a year before it was going to be cured? And that's actually how it felt. And so I for years, I go online around that time of year when everybody's out fundraising and I remind people this is just just this is them doing business, they're trying to make money to keep their lab going. They are not almost to a cure.
Jennifer Smith, CDE 15:06
Right, which is, I think it's fair and very important, to be honest about that, to be honest about we are fundraising for the company is the labs that are actually doing the work. We don't know how far they are in their work, but we have to continue their work. So your donations, your fundraising, will allow them to keep moving further in their research. But it doesn't mean that anything is right around the corner. No. And I think that's the hard thing. That's the hard thing to swallow, when you may be writing a cheque that you think is going to further it by leaps and bounds or sooner,
Scott Benner 15:48
yeah, plus, you have to make a decision about where to send that money, because and all those people are involved in a sales, that's a sales job to them, but they don't say come up with an idea. They think if we can put enough money into this, and time and effort, we're gonna get to something, most of them are going to be wrong. Like most of them are going to get to the end of their research and go up that didn't work. This didn't work or something else is going to come out of it. I think it's it's funny, though, because as I looked through people's comments, you know, 10 years ago, somebody told me 10 years, that was an 87, this person says 63 years, I've had type one diabetes, and people have been telling me since I was a teenager, it's gonna go away. Right? But where I get like, kind of sad, is that this person writes that a curious five years away, please stop blowing smoke up my ass, right? And you think, Okay, this is a person in line with what you and I are talking about. But then the rest of what they say My husband used to say there's no money in a cure. And I think that's how people feel. I don't honestly think that's right, though. I think if you could cure type one diabetes, there's money to be had. And, and my example will be prevention bio. Came up with tz yield, right? Yes. Which just is at this point, they just think it slows the onset of type one diabetes, right? By a fair amount? Yeah, no, no, it's exciting. But that's not my point. My point is that prevention BIOS sold themselves to Sanofi diabetes for $3 billion. That's money it like, I don't know, I don't have a billion dollars. So like, so there is money in that kind of stuff. Right? You know what I mean? Like it's, and I that's, I think,
Jennifer Smith, CDE 17:29
the point that you're also making is that it's not a fault of the company to further what they're trying to do and who they're trying to reach, there is still there's a goodness component there to what they're trying to do. And just because they sold and made money on it from a business side, they also sold to a much larger company that could potentially potentially propel it forward with much more strength than the small little company could potentially do
Scott Benner 18:00
those people, we're never going to be able to move it like that. Yeah, it's you need big entities that have the pockets to say, let's take a shot at this and see what we can do a company that if it doesn't go right, isn't going to fold for the $3 billion that they spent, which is crazy, right? But which
Jennifer Smith, CDE 18:15
then folds everything that they have worked to put together thus
Scott Benner 18:19
far. They also make insulin and other things. And I think similarly, in that vein, like, Listen, I'm, I'm not a cheerleader for the JDRF one way or the other. But when they started saying, you know that they were focusing on supporting people with diabetes, and helping them be healthy. I thought that was terrific. But that was met with a lot of backlash from people who were like, No, you promised a cure. Right? Like and that and they said, look, I mean, we're gonna start putting money into other things. And that made people upset, but some of the money they put into it led to some of these algorithms and to see GMs and great, not on this curse, but a lot of good stuff. Yeah,
Jennifer Smith, CDE 18:58
absolutely. Yeah, I was gonna say the same thing. I mean, in terms of fundraising, fundraising, can go many different avenues, right, it can go for more money to a particular scientists doing something that's really proving to be valuable thus far, and some of the money might go to support programs that bring families together so that you get to know other people who have diabetes, as well. And some of the money might go to, you know, underserved in a way that gives them more education and gives them more opportunity to understand and live well. So you have to look at the broad scope of where donations may go is not all going in one direction, nor do I think it should.
Scott Benner 19:44
But I just listen I personally believe that you know, I hear people sometimes complain about like, oh, the CEO of this company, they give you seen how much money they make, and I'm like that's, that's the person you want in charge of this. Like a person who wants to make money knows how to make The Business powerful so that it can make money like you want what the good that comes from that, that, you know, in health, but you can't have like some, like, you know, some lady smelling like petroleum oil can't, it might isn't going to make the whole thing happy. She was like, I want everybody to have everything for free. That's great. We got to build an infrastructure, we gotta hire people, we need to sell something so we can afford to keep the lights on like that all has to happen to right. But you know, back to the idea of the cure thing. And I get it. Like I get when people say that I get when people speak the way I talk, I'm not like, I'm not defending it one way or the other. I started off by saying, that wouldn't surprise me if there were aliens in a bunker somewhere. And that fiber optics were from something we learned from a spaceship and that Bigfoot didn't exist in Canada and etc, and so on. Like, if you showed me that stuff, I'd be like, ah, that's crazy. But yeah, okay. Yeah, I totally get it. Right. Yeah. And by the way, if those things don't exist, I get I get the flux that we're in here. But right, my bigger point, I think, is that for your overall health and happiness, whether it's true one way or the other, it's not healthy for you to sit around angry thinking, someone's keeping this from me. Because if they are, you're not getting it anyway. And if they're not, you're just worried about something, you're
Jennifer Smith, CDE 21:20
worried about something. And I, you know, I think the first time I can remember, like in my life, or my history with diabetes, of thinking down this conspiracy Avenue, was when I went to a, it was like a science based presentation. The JDRF had a group that provided new new technology information and what could be coming down the pipeline. It also had new scientific, like exploration into not necessarily cures, but more therapeutic kinds of things. And there was a scientist who came, and he presented on something that I think it was called smart insulin. And he, his presentation was phenomenal. To me, it was the idea of taking like an injection of Day of one kind of insulin that based on almost like a almost like a thermometer gauge in your body, the insulin would turn on at a certain level of glucose saturation. And it would turn off its effect based on a lower level of glucose in in the body, right? And it my first consideration to where did this go, because he had really good research. And then a year out, I went back and I remembered the presentation, I looked up information and like, where's the Cisco? Like, it's gone, like, go thinking, well, either somebody like stomped on this, or it proved to not be beneficial. So they didn't get to go forward with it. But I don't know. Like, where did it go? Who knows? So that was my first thought into.
Scott Benner 23:05
But some of the people here are thinking, yeah, yeah, well, it showed some promise. And one of the big insulin manufacturers came in and bought it and set it on fire because they don't want that. Meanwhile, you could sell smart insulin the same way you would sell other right. But anyway, I all finished with this. nearly 15 years ago, I did an interview when I only had a blog with a company who was working on implanting cells in a pouch and the pouch would stop your immune system from getting to the cells and attacking it. They make this little insertion put the pouch under you and it would this thing would act like a like a pancreas. Right? And when I was interviewing them, I said, so I said, just pretend for a minute. We got it all figured out today, right today. When do we see this? And he's and he really thought and he goes have 15 years maybe? And I was like I'm like, Wait, not what I meant was all the science is done. It's good. When do people hold it in their hands? He goes, Yeah, about 15 years. And he's like, you know, manufacturing, procuring the cells he'd like we'd have to start places to, you know, make the cells like all this stuff. And by the way, that thing still exists. I interviewed somebody in a trial for that recently. It was a blind study. So she wasn't sure if she got like, they cut her open, they cut some people are gonna put fake pouches in them, right? Because that's how the studies were. But she's like, I had the cells, I was barely using any insulin a couple months into it. So so it was working. And now other companies are figuring out ways to do that. And like, I mean, one of the big ideas there, the problem was at first, like your immune system would come after the cells. So they actually made a mesh that your immune system kind of like couldn't see through. But the cells could work to get out. I mean, I don't know all the technical words, but But point is is that it takes So long as time. And so like, I don't,
Jennifer Smith, CDE 25:03
not to mention approval, I mean, you have a, you have to have enough data points of information to even submit for potential approval for something like this. I mean, you know, things like insulin pumps outside the body or one thing, something that you're actually having to be invasive and cut into somebody, which could potentially trigger a reaction that you don't know is coming from that individual, you're gonna you have to have enough research that says in, you know, 99.9% of people, it has no detrimental effect
Scott Benner 25:36
also, no, it's not a forever thing, you have to get opened up, and it has to come out and they have to replace it sometimes. So like, there's a lot there. But and it's funny at the time, I asked my daughter, what would you think of that? And she said, I wouldn't do that. And I was like, okay, she goes, I don't want to go to a doctor's office every six months and have an incision made to like, she's like, I don't think I would do that. The first I would agree with her. And the person who had it done said it was fantastic. So even like, can you imagine working for 25 years to come up with something, you bring it to market? And people go? No, no, thanks. Anyway, I don't know what's real and what's not. But what I think is that you don't do yourself any favors by torturing yourself about one way or the other. Correct. What I usually tell people is that when they asked me if I think there'll be a cure for diabetes, which is a question that oddly, I get asked a lot. I say, I don't think there will ever be a cure in my lifetime. But I live like, there. I live like there won't be I hope, like there will be. So I take care of my daughter as if this is what that what it is. This is what it is. Yeah. And but I don't ever lose hope of it. Like it wouldn't surprise me. You know, like if somebody figured something out eventually. But you know, in a world where, you know, people have inflammation and they have joint pain from inflammation, and we can't figure out how to stop that. Like, this seems like a much bigger problem to me. So Correct. Anyway, yeah. Appreciate you doing this with me.
Jennifer Smith, CDE 27:05
Of course, yes.
Scott Benner 27:11
Jennifer Smith works at integrated diabetes.com. Go check her out, will you won't you, won't you please. I don't even I don't even know what I meant to say there. And don't forget touched by type one.org. The big event is coming up on September 16. It is free for everyone who lives with or is touched by type one. Head over there now and get your spot. Go hit that Register Now button. Do not wait. It will fill up. It has amazing speakers at it. I mean, of course it's gonna fill up. Wait, do you see when we're all in a room together? How much fun is going to be touched by type one.org I'm going to ask you to check out the private Facebook group Juicebox Podcast type one diabetes, go become a member get involved in the conversation. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. When you support the Juicebox Podcast by clicking on the advertisers links, you are helping to keep the show free and plentiful. I am certainly not asking you to buy something that you don't want. But if you're going to buy something, or use the device from one of the advertisers, getting your purchases set up through my links is incredibly helpful. So if you have the desire or the need, please consider using Juicebox Podcast links to make your purchases
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