Living with Type 1 diabetes is a 24/7 lifestyle. Levels Founder and President, Josh Clemente, chatted with our Operations Specialist Jesse Lavine and friend of Levels Chris Truglio about their experiences and challenges living with the disease. They talked about how they manage it day-to-day, how it’s actually helped them live healthier lives, and how education around diet and lifestyle can help others live healthier lives too.
04:21 – Diagnosed with Type 1
Chris said his Type 1 diagnosis was a surprise and made him rethink how he views food.
I went home one winter break and my mom was like, “Hey.” She noticed some signs that I didn’t really catch on. I was just going to the bathroom more often in terms of urinating, I was just drinking a lot of water, not a normal amount, and she’s like, “Hey, I just want to bring you in, just go to the doctor, get you checked out,” and I was like, “Yeah, sure, mom, whatever. Okay. Happy to make you happy.” And I went in and my blood sugar was through the roof. I think it was like mid-300s to 400. And so they hooked me up to a drip to get me back down. And they said, “Hey, you have diabetes. It’s very clear that you do at that point.” And I’ve always been a lot more of a math and numbers guy. And you can’t fight math. You can’t fight the numbers there. I’m just like, “Okay.” Now we’re really looking to what’s the next step ahead. And from that, I really looked at it as a forced diet. I try to see the silver lining in it, in that, “Okay, now I can’t have a sleeve of Oreos, but I can still have two,” right? And so it’s just a lot more rationing in what I’m doing.
07:41 – Treating food like medicine
Jesse said understanding how food affects your body and customizing your diet based on your needs is empowering and lets you live life with confidence again.
I think the first half of my time living with diabetes was very much like a compliant patient and doing everything that my doctors told me to do. I was testing my blood sugar 10 to 12 times a day via finger prick. My fingers were black and blue, all the things that everyone with Type 1 goes through, pre-CGM era at least. It wasn’t until I went to college where I was like, “Everybody else is super high functioning around me and I’m falling asleep in class,” that I realized that Type 1 diabetes was really the roadblock for me and I needed to figure it out. I was spiking up to 300 and just not able to focus and be a high performer that I wanted to be. And so I went back to Houston, and this is really where the second half of my life started, was when I put in the CGM. It sounds cliche, but it really was such a game-changer. Everything the doctors were telling me to do before was … I found flaws in everything they were telling me. And I was able to experiment with diets. I had one endocrinologist who was just a super radical thinker and really helped me view it as medicine. And I took that approach at heart and just started experimenting with a bunch of different diets and finding what worked for me. And then I went back to school and became this high performer that I wanted to be, and signed up for a bike ride across the country with 20 people all living with Type 1. And it was so cool to be this embodiment of living in the face of my challenges and overcoming them with every step, and then also showing people that they could do the same thing with their condition, whether it’s Type 1 or another chronic condition or anything else. And so, yeah. My life has just sort of been a … Since then, it’s just been with a lot of confidence in my back pocket of, “I can do anything, and Type 1 is not going to stay in my way.”
14:01 – A CGM is a game-changer
Chris said using a CGM transformed the way he could regulate his diabetes.
The biggest game-changer in terms of my life as a diabetic too was when the CGM, once I found that. Because that was really like, “Okay, I’m not just checking every hour and a half, two hours, four hours. Hey, I’m feeling tingly. Check it there. Hey, I’m sweaty and clammy, now I check it.” It was that constant data, right? I’m getting it every five minutes. And it’s great, and I can see on my phone and I can see now instead of just like point A to point B what’s a spike. Is it like straight up and down? Is it kind of slow rise and just … You have such a better understanding of how your actions and what those kind of inputs, how they affect your body.
15:28 – Planning for contingencies
Chris said that using technology and preparing for emergencies help him manage the day-to-day logistics of living with this chronic condition.
Every day and every minute is like a Goldilocks math calculation. Am I having just enough food? Am I having just enough insulin? Am I having just enough exercise? But all working in a timely manner and making sure that everything is kind of clicking at the same time. Even for this call, I have a packet of sugar next to me. In case my sugar happens to go low, I can be able to get it up in a quick way. And so it’s just no matter what you’re doing, you’re always constantly thinking about it. And I think just the best way to be able to live a normal life is the adoption of these kind of technologies, having that data, it gives you a lot more control of it. And then on the other end of that is being prepared for it. I know if I’m going on a road trip, I have sugar, I have things with me. If I’m going on a hike, or I’m going camping or I’m going wherever, have those things to make sure that in the event of X, Y, Z, okay, I have every contingency plan for, and kind of being able to standardize that and make it easily travel accessible really helps.
21:20 – Maximizing the time you feel good
Chris said after being diagnosed with Celiac disease, he realized how empowering it is to know how to manage your chronic illnesses so you feel your best every day.
Two years ago, I was diagnosed with celiac. And as a diabetic, I could still have wheat, so I could still have a pizza, I could still have beer, I could still have a bagel. It really sucks to have that because it really affects your sugar for four, six, eight hours afterward, but I could still have it. And so now, when I go into a doctor for a regular routine diabetic blood work, I didn’t realize that I just felt like crap for the 18 months prior. And I was just attributing that to, “Oh, I’m stressed from work. Oh, just so much is kind of going on.” And when they said it was celiac, I was like, “Oh, it makes sense.” And I guess with my previous experience of being a diabetic, it’s like I trust science, I trust numbers. And so if these numbers on my blood panel are high and that’s because of celiac, I was like, “Well, okay, I probably have it, but I want to make sure,” because it’s a big decision. And so I got an endoscopy a week later. I was like, “Let’s do it, if that’s what it needs to be to confirm.” And they confirmed it. And so all right, I just immediately went 100% gluten-free. I’m not messing with anything. And what’s nice is actually the best my numbers have ever been. There’s just a lot with wheat that is not good for diabetics. And so it’s actually helped to keep things a lot more stabilized in that more controlled diet environment. And once again, I always frame it as it’s a forced diet. It’s a good thing. I have to eat healthier, but it’s not by choice. Are there sometimes when I’m out and I’d love a nice just a really big chocolate cake dessert or the garlic bread that comes up before? Of course, that’d be awesome, but my diabetes and celiac say no. And so kind of just listening. And it listens to your body. I feel so much better. And I think just with my general personality and how I want to be, I want to feel good. I want to be happy. I want to just enjoy my time, enjoy the people that I’m with. And by doing that, it’s keeping my numbers as fly as possible and not taking in gluten. Because both of those, they make me feel bad, and so I want to minimize the time that I feel bad and maximize the time that I feel good.
22:53 – Living a healthier lifestyle
Jesse said that by taking care of himself as a Type 1 diabetic, he is taking better care of himself than he would otherwise.
You live your life and you tailor your life to feel good. And also the other part I really relate to is viewing diabetes as a silver lining. When Josh said the word badge of honor earlier, that’s really where it comes in for me. After I got to the point where I started to manage my diabetes well and take control of it and not let it control me, it made me realize that because of this data that I’m intaking and because of this lifestyle that I’m tailoring towards having stable numbers, I’m probably living so much healthier than if I were on a regular course of the rest of the average American, and it seems because I’m so in tune with what I’m putting in my body.
28:24 – Type 1 has no warning signs
Chris said that one difference between Type 1 and Type 2 is that Type 1 can surprise you, but you can prevent Type 2 through lifestyle changes.
I think the biggest difference is Type 1, you don’t see it coming. There’s no rhyme or reason. There is no cause and effect, where with Type 2, there is more cause and effect. And that’s why I’m not saying I wasn’t obese or anything, but when I was diagnosed with Type 1, I think that’s part of why when you talk about identity formation, I kind of separate. Usually, the first thing I say is like, “Oh, but it’s Type 1. It wasn’t by choice.” That’s where I think just in those differences, when you’ve made those decisions for so many years, and there usually are warning signs, but if you go to the doctor and you get an A1C check, you’ll see you’ll be pre-diabetic, which means like, “Hey, if you continue this, you will become full-blown diabetes,” Whereas with Type 1 it’s one day it’s … There’s no warnings, no slap on the wrist, no, “Hey, you need to get your life …” No, it’s like, “You are diabetic, and you are.” It’s a life sentence.
39:34 – Self-forgiveness is important
Jesse said it’s important to go easy on yourself because mistakes are inevitable with such a demanding management schedule.
If I’m going to be biking for the whole day, that’s a different story. And if I’m going to be sitting at my computer and working for the whole day, that’s also a different story. I want to touch on this component because I feel like it’s important for people as they’re implementing lifestyle changes. If you find something that works, you feel like you need to do it nonstop. And if you miss a day, it’s like, “Oh, I’ve failed.” And I’ve had a lot of those experiences where I have a really good streak of blood sugars, and then I forget to take insulin for a meal or take it five minutes late and then I’m at 250 and my whole world has just dropped. It’s like, “Oh my God, now the next 12 hours or 24 hours, or however long, it just feels like it’s ruined.” There’s a lot of self-forgiveness that I’ve learned throughout the years living with Type 1. And that, again, I didn’t ask to have Type 1 and I do the best I can. I just wanted to touch on that component because I think it’s important to forgive yourself if you mess up sometimes. Tomorrow’s a new day and tomorrow’s a new reset of insulin sensitivity.
43:08 – You need health insurance
Chris said with all the different prescriptions for supplies and medicine to manage the disease, you need to have insurance to help bring costs down.
You need health insurance. You can’t afford not to have health insurance, which if you don’t have a spouse, that means you probably need to be working for however long to be able to pay for it between you have a new insulin pump, you’ll have the vials of insulin, the pump supplies of the catheters, the reservoirs, test strips, Lancets, there’s two or three more for the CGM. And so that’s eight separate prescriptions, which can be across however many different companies. If you run out of one, you need them all. But it’s like you can’t drive a car with three wheels, you need to have everything there. Then maybe this time you run out of gas or maybe this time your lights don’t work. And that’s just to keep things going as normal as possible.
58:07 – Relating to others is empowering
Jesse said that being able to have conversations with others who wear CGMs, whether or not they have diabetes, is essential to finding common ground and improving access to health data for everyone.
I think that the way that we are doing it now at Levels of empowering everybody with our own data, not just people with Type 1, is it makes the conversation much easier. If I’m talking to a person without diabetes who’s worn a CGM before, there are so many more relatable points to have in that conversation than someone who has never worn a CGM and thinks that the conversations that I’m having about diet and food are only relevant to me because I have the diabetes. That’s one thing. It feels maybe small, but it’s just such a nice relief to have that conversation. I’ll give example of that. We had a Friday fireside around when I joined, almost nine months ago, where the whole Levels team was so curious to hear my experience and Alan’s experience with Type 1. I still think about that with chills because it was just such a cool experience to have people genuinely listening and curious about what my experience was like. And so going back to the big picture is like having people be able to relate to these experiences and the foods that are causing these energy deficiencies in me and in you, we can have a common conversation around how to better fix the food system, and how to better lower the cost of CGMs because everyone needs them. I just think that more and more of these conversations are important.
Chris Truglio (00:00:06):
The biggest game changer in terms of just my life as a diabetic was the CGM, once I found that, because that was really like, “Okay, I’m not just checking every hour and a half, two hours, four hours. ‘Hey, I’m feeling tingly. Check there. Hey, I’m sweaty and clammy,’” it was a constant data. Right? I’m getting it every five minutes.
Chris Truglio (00:00:25):
And it’s great, and I can see it my phone, and I can see now instead of just like point A to point B what’s the spike. Is it straight up and down? Is it kind of slow rise and just… You have such a better understanding of those kind of inputs and how they affect your body.
Ben Grynol (00:00:45):
I’m Ben Grynol, part of the early startup team here at Levels. We’re building tech that helps people to understand their metabolic health, and this is your front row seat to everything we do. This is a whole new level. As we’ve been building out Levels, we don’t often talk about the history of CGM, how it started, what exactly it is, a continuous glucose monitor. We know that people are using it who use Levels.
Ben Grynol (00:01:23):
Well, why did continuous glucose monitors start to begin with? Initially, it was technology that allowed people in the Type 1 and Type 2 community to get insight about their blood sugar, their blood glucose levels in real time. And so having conversations with people in the Type 1 and Type 2 community is important.
Ben Grynol (00:01:40):
On our own team, well, we’ve got a couple of people who are Type 1. And so Jesse Lavine, who’s part of our ops team and is also Type 1, he and Josh Clemente, founder of Levels, the two of them sat down with Chris Truglio. Chris is also part of the Type 1 community, and his journey started in his early twenties. He talked a lot about the way that his identity, the way that he thought about living life, the way that things changed and the way that a CGM allowed him to get more insight into the choices that he made.
Ben Grynol (00:02:08):
It was really a meaningful conversation and it was great to open it up so that Jesse, Josh and Chris could all dig into this idea of CGM, working with the Type 1 and Type 2 community, and how people can get more insight as we start to scale this technology. It was a really meaningful conversation and it’s an important one that we continue to have. Here’s where they kick things off.
Josh Clemente (00:02:35):
Thanks both of you for taking some time to dive into this conversation. It’s obviously a ton of subject matter. And as someone who does not have diabetes, I’m really excited to hear from you all, from your experiences all the blind spots that I have, as someone who has used technology that is traditionally has been developed for the management of diabetes and has benefited from it tremendously.
Josh Clemente (00:02:56):
I’m very grateful that the technology exists. I don’t think it would be here if not for the needs of the diabetes community. And I’m really optimistic about the future of connected health, biomonitoring for a whole host of conditions. But in particular, I’d love to just start off by hearing some more about your life experience.
Josh Clemente (00:03:16):
I think, Chris, if you want to just tee us, we kind of connected initially about an open letter that was written from the Type 1 diabetes perspective, from your perspective as someone with Type 1, two levels kind of discussing where we are in the arc of technology development and why there might be some disagreements about how to solve some of the problems that we see and that the Type 1 community faces. So if you want to just give us a little intro on your background and how we got to that point.
Chris Truglio (00:03:47):
Yeah, absolutely. And so I think it all starts about 10 years ago. When I was first actually diagnosed, it was interesting. I had no idea. I probably lived as, I guess, anti-diabetic lifestyle as you can imagine. There’s always that one item on the menu, the double cheeseburger with the bacon and the extra loaded fries, and that was my go-to. I loved that, I lived for that, and so I was definitely on the other side of the scale of just not eating a healthy lifestyle. But I was playing football. I was just naturally very big with a lot of muscle.
Chris Truglio (00:04:21):
And I went home one winter break and my mom was like, “Hey.” She just, she noticed some signs that I didn’t really catch on. I was just going to the bathroom more often in terms of urinating, I was just drinking a lot of water, not a normal amount, and she’s like, “Hey, I just want to bring you in, just go to the doctor, get you checked out,” and I was like, “Yeah, sure, mom, whatever. Okay. Happy to make you happy.”
Chris Truglio (00:04:44):
And I went in and my blood sugar was through the roof. I think it was like mid-300s to 400. And so they hooked me up to a drip to get me back down. And they said like, “Hey, you have diabetes. It’s very clear that you do at that point.” And I’ve always been a lot more of a just math and numbers guy. And you can’t fight math, you can’t fight the numbers there. I’m just like, “Okay.” Now we’re really looking to what’s the next step ahead.
Chris Truglio (00:05:10):
And from that, I really looked at it as like a forced diet. I try to see the silver lining in it in that, “Okay, now I can’t have a sleeve of Oreos, but I can still have two,” right? And so it’s just a lot more rationing in what I’m doing. And how fast forward about eight years, how do we get to this point? I was actually working and living with Sam, CEO at Levels at Kardash.
Chris Truglio (00:05:32):
And so when he had left Kardash, and I saw he was starting this company, and I was just like, “That’s interesting.” I was like, “Is it for diabetics?” And he is like, “No, it’s not actually.” And I was like, “Well, I mean, that could only be a good thing, right?” I try to stay up on the latest technology with diabetes. And just bringing more people to the forefront of awareness of it, there’s got to be positives.
Chris Truglio (00:05:57):
And so just kind of staying in touch, seeing all that. And then I actually saw there was some forum where a lot of Type 1 diabetics were bashing Levels, like, “Oh, how can you do this? It’s so selfish. Just another Silicon Valley scam.” And I was like, “What do you mean? It’s a good thing. There’s awareness and knowledge of it.”
Chris Truglio (00:06:21):
I was a little bit confused seeing it. But then kind of taking a step back and really thinking about it, I was able to see a lot more, “Okay, I can understand where that frustration, that outlash might be coming,” and not necessarily as much directly at Levels, but just more a culmination of those kind of experiences that they’ve had to date. And so that’s as brief of a quick intro into how did we get here.
Josh Clemente (00:06:46):
Yeah, that touches many of the main points. And I really appreciate hearing about the diagnosis story. I’m sure that, that’s just such a transformative moment. And Jesse, from here, I’d love to hear your background and kind of how you’ve gotten involved in every aspect of the Levels business as someone who kind of intuitively felt, I think, maybe somewhat similarly to Chris at looking at what Levels was developing. We’d love to hear your perspective and your background story as well.
Jesse Lavine (00:07:12):
Yeah, definitely. First of all, Chris, it’s cool to hear that, that was your first response to Levels, because I definitely shared that. I’ve been living with Type 1 for 16 years. I was diagnosed in January 23rd, 2006. It was a very monumental day in my life. I think every time I tell a story it’s like mostly the same arc, but it’s just a little bit tailored to the context.
Jesse Lavine (00:07:41):
I think the first half of my time living with diabetes was very much like a compliant patient and doing everything that my doctors told me to do. I was testing my blood sugar 10 to 12 times a day via finger prick. And my fingers were black and blue, all the things that everyone with Type 1 goes through, pre-CGM era at least.
Jesse Lavine (00:07:59):
And it wasn’t until I went to college where I was like, “Everybody else is super high functioning around me and I’m falling asleep in class,” that I realized that CGM was really the roadblock for me, or that Type 1 diabetes was really the roadblock for me and I needed to figure it out. I was spiking up to 300 and just not able to focus and be a high performer that I wanted to be.
Jesse Lavine (00:08:25):
And so I went back to Houston, and this is really where the second half of my life or [inaudible 00:08:30] life started, was when I put in the CGM. And it sounds cliche, but it really was such a game changer. Everything the doctors were telling me to do before was … I found flaws in everything they were telling me. And I was able to experiment with diets. I had one endocrinologist who was just a super radical thinker and really helped me view it as medicine.
Jesse Lavine (00:08:51):
And I took that approach at heart and just started experimenting with a bunch different diets and finding what worked for me. And then I went back to school and became this high performer that I wanted to be, and signed up for a bike ride across the country with 20 people all living with Type 1. And it was so cool to be this embodiment of living in the face of my challenges and overcoming them with every step, and then also showing people that they could do the same thing with their condition, whether it’s Type 1 or another chronic condition or anything else.
Jesse Lavine (00:09:25):
And so, yeah. My life has just sort of been a … Since then, it’s just been with a lot of confidence in my back pocket of, “I can do anything, and Type 1 is not going to stay in my way.” And a lot of the things that I learned with CGM, I see a lot of the things, all the tiredness and sluggishness mirrored in people across the table from me, whether it’s my family or friends.
Jesse Lavine (00:09:47):
And we have a big type of dinner and they’re like, “I need to take a nap,” and I’m like, “Oh, your blood sugar is probably high.” And then I found Levels and I’m like … I’m doing my master’s in public health degree, and I’m trying to figure out like how can I make an impact in the world. And as soon as I found Levels, I was like, “This is it. I have to join this team.”
Jesse Lavine (00:10:03):
And I got connected with Josh. And everything that the scene is doing so far is just above and beyond any expectations that I’ve had of just expanding the awareness of metabolic health. It’s expanded my knowledge of metabolic health and I’ve implemented definitely different behaviors and tactics to manage my diabetes from [inaudible 00:10:25]. And that’s a nutshell. I think that’s probably a good place to start.
Josh Clemente (00:10:33):
Yeah, thanks for the background there, Jesse, as well. What really stuck out to me there, and Chris, I’d love to hear your perspective on this, as well as Jesse. You mentioned that there was an individual, one person, probably an endocrinologist, I believe, who was sort of a free thinker, and was breaking the mold in how they were approaching treatment or the advice they were giving for treatment and lifestyle.
Josh Clemente (00:10:56):
And I’m curious how consistent that is, where you had a break through as a result of one sort of stall war, one person who was willing to break the mold. And that had a lot of downstream effects, it seems, in the way that you approach your lifestyle and how you manage your condition. Chris, is something similar there? I’d love to hear about that.
Josh Clemente (00:11:15):
And also, how tools that give you a substrate of information that you can work from have changed that situation. In other words, do you now depend on finding that one individual who thinks more openly and considers your personal perspective? Or does having technology, has that changed the paradigm a little bit and given more leverage to you as opposed to relying on others?
Chris Truglio (00:11:38):
Yeah. And I really think it goes back to, when I was first diagnosed, I went on the pump after 10 days. I was like, “This sucks. I don’t want to be giving myself shots in my arm. I don’t want to be giving myself shots in my stomach.” I just, as I kind of said before, I like to eat. And so for me, that’s kind of a non-starter.
Chris Truglio (00:11:59):
And so I was like, “Well, this pump, it sounds great. I don’t have to think about it. It’s just a lot more …” It’s a math problem. What’s coming in, what needs to get adjusted for and corrected? And so that on the pump side, I’d say, allowed me to live as closely to what things were like before being diagnosed. And I can’t even imagine how people must have done it like 30, 40 years ago. I just, I really can’t.
Chris Truglio (00:12:27):
The technology is so freeing to be able to have that. And yeah, my parents have always just fully supported me at that. Like, hey, whatever’s really best, they’ve kind of stayed up on top of what technologies are there as well. Always pushing and asking my endocrinologist as well. But I would say that in terms of with an endocrinologist, they move at your speed.
Chris Truglio (00:12:50):
They understand what your comfort levels are. And mine knew that I was very aggressive in wanting to try new things, wanting to test it out, wanting to go get, do like an evaluation to see how different inputs affect different blood sugar levels. And I think that’s because I was so open to it where I was diagnosed at 20 years old. I didn’t grow up with it.
Chris Truglio (00:13:11):
I kind of grew up, I’d say, a no normal life in that regard. And so when it came, it’s like, “Okay, how do I get back to living that normal way?” Whereas if I was diagnosed at 3, 5, 8 years old, that would be the only thing I knew. And so it’s just a different mindset of how do I just kind of always try to live a normal life.
Chris Truglio (00:13:30):
And I think that’s what influences a lot of why I don’t … The first thing I say is not that I’m a Type 1 diabetic, right? People that know me or close to me know that, but I’d say the majority of people that I know don’t actually know of my condition. I kind of do it more on a need to know basis, mainly because I just don’t feel like I don’t walk up to someone like, “Hey, I’m a straight white male that’s married,” right?
Chris Truglio (00:13:55):
It’s just things that you don’t need to say, unless it’s kind of that context is brought up. But yeah, when I think was the biggest game changer in terms of just my life is diabetic too was when the CGM, once I found that. Because that was really like, “Okay, I’m not just checking every hour and a half, two hours, four hours. Hey, I’m feel on tingly. Check it there. Hey, I’m sweaty and clammy, now I check it.” It was that constant data, right? I’m getting it every five minutes.
Chris Truglio (00:14:24):
And it’s great, and I can see on my phone and I can see now instead of just like point A to point B what’s a spike. Is it like straight up and down? Is it kind of slow rise and just … You have such a better understanding of how your actions and what those kind of inputs, how they affect your body.
Chris Truglio (00:14:42):
Because, yeah, seeing, “Okay, if I eat this food, I know when to take this insulin. I know what kind of activity that I’m going to be doing later.” It just gives you so much more control over it so that I know if, “Hey, I’m going to be going on a big hike,” I can leave my sugar a little bit high so that way it doesn’t go low 20 minutes into the hike. Or if my sugar is high, maybe I’ll go get some activity and then I’ll help to naturally bring that down as well.
Chris Truglio (00:15:05):
And so if it just helps to bring a lot more, say, natural controlled remedies rather than just mashing the button on my pump, giving myself more insulin, because I know that, that’s going to be like … It’s like the opposite of instant gratification. I know that in 90 to 120 minutes I’m going to have to take the repercussions for those actions.
Chris Truglio (00:15:23):
There’s going to be some adjustment. Is it not enough? Is it too much? Is it just right. Every day and every minute is like a Goldilocks math calculation. Am I having just enough food? Am I having just enough insulin? Am I having just enough exercise? But all working in a timely manner and making sure that everything is kind of clicking at the same time. Even for this call, I have a packet of sugar next to me.
Chris Truglio (00:15:48):
In case my sugar happens to go low, I can be able to get it up in a quick way. And so it’s just no matter what you’re doing, you’re always constantly thinking about it. And I think just the best way to be able to live as normal life is like, yeah, the adoption of these kind of technologies, having that data, it gives you a lot more control of it.
Chris Truglio (00:16:06):
And then on the other end of that is being prepared for it. I know if I’m going on a road trip, I have sugar, I have things with me. If I’m going on a hike, or I’m going camping or I’m going wherever, have those things to make sure that in the event of X, Y, Z, okay, I have every contingency plan for, and kind of being able to standardize that and make it easily travel accessible really helps.
Josh Clemente (00:16:30):
There’s so much there. I have so many questions and I definitely want to … I want to make sure that they at Jesse is able to raise some of the … I think maybe discuss some of those key points that you raised, most specifically I think the identity formation piece. You touched on something about sort of a late diagnosis. Type 1 previously was called juvenile diabetes, I think. It had sort of that name, which didn’t really apply because there is this late diagnosis even well into adulthood which happens.
Josh Clemente (00:16:59):
And so yeah, that identity formation piece is so interesting and unique. But then also, all of this technology development, it leads to a whole host of questions I’ve got on many things. But the financial, I think political, there’s just a whole network of questions that arise there, because you just touch on all of the ways in which this technology benefits to you.
Josh Clemente (00:17:18):
And then that opens just such a can of worms, because how can we both have that be true and then also have challenges of accessibility that are so strong? I want to get to that. But the thing that stands out to me most as someone who does not have diabetes is the consistency and dedication that it takes every single day to manage the condition. It’s so hard, I think, for people to understand that until you start to get an insight into the dynamics of the human body.
Josh Clemente (00:17:46):
Most people, I think, feel that everything is static. Basically the human body stays the way it is for most of the time. And then there will be a change, you’ll feel hunger, and then you’ll eat something and then it’s back to normal. The reality is that, like you said, everything you do, you get on your bike to ride to class, that’s a huge event.
Josh Clemente (00:18:02):
And I’d never had an appreciation for this until speaking with people who are living with Type 1 in particular, because they truly are as close to a cyborg sort of perspectives as I’ve heard, which is that they’re so in tune. They have such strong interoception that even without the CGM, they’re able to know almost exactly where things are now and where they’re going. And so anyway, I’m just blown away by that, especially when you start to get into the lifestyles that are even more challenging, the athletic side of things.
Josh Clemente (00:18:31):
The really high performers who are also consistently doing everything that everyone else in their field is doing, but then also dealing with essentially manually controlling. It’s like taking the plane off autopilot and taking the stick over and controlling the airplane. I just want to say that an outside observer, it blows my mind consistently, that degree of control and interoception.
Josh Clemente (00:18:50):
I’d love to circle back and talk about identity formation. And Jesse, you gave us your background. Chris, you gave us yours. And I’m curious about the sort of different perspectives and how identity formation plays into your lives, and whether or not, for example, Type 1 is considered a badge of honor versus something that you share with your closest circle.
Jesse Lavine (00:19:13):
Yeah. Chris, I’m curious, I’m going to form this as a question. You said that Type 1 diabetes isn’t a part of how you introduce yourself, it’s just a part of who you are and it only comes up on a need to know basis. But you’re also diagnosed at 20, so you had like a pretty well established normal before this point every diagnosis.
Jesse Lavine (00:19:35):
And I think that’s a lot different from where I’m coming from, so I’m curious how that plays into your identity with Type 1 of having lived a life before or a great number of years before getting diagnosed and then having this massive change where you have to think about all the time.
Chris Truglio (00:19:52):
I look at it as you got to play the hand your dealt. Everyone has their own situation. And for me, for the first 20 years of my life, I never had to … I didn’t even know what glucose or blood sugar were, and I could really kind of, I could have whatever diet or lifestyle I want and I was lucky to still be healthy. I was able to balance that out with exercise, just kind of being young.
Chris Truglio (00:20:14):
And once I found that out, I wanted to do everything that I could to not negatively change my life. And so I really look at it as a silver lining. I mean, since getting diabetes, it’s by far the last 10 years of my life were way healthier than the 10 prior, just because I actually like a lot more management, a lot more just keeping things in check and being a lot more intentional, intentional about my diet, intentional about working out and not just kind of doing whatever I want to in that minute, but being able to have that longer term point of view.
Chris Truglio (00:20:50):
And I really look at it as like I want to live to be 80, 90, 100, 110, and so what do I got to do today? Especially on the Type 1 side, what I think is the most comforting for me is just knowing that it’s not my fault. I could have lived the healthiest life, right? I have lived the worst life, and no matter what, it would’ve still happened. It was just a matter of time. And I think for me, it gives me a lot of solace to know that I got to enjoy a life like that, and now going forward, I get to enjoy a different life.
Chris Truglio (00:21:20):
And I think probably the biggest, I guess, identity part of that is two years ago I was diagnosed with celiac. And as a diabetic, I could still have wheat, so I could still have a pizza, I could still have beer, I could still have a bagel. It really sucks to have that because it really affects your sugar for 4, 6, 8 hours afterwards, but I could still have it. And so now, when I go into a doctor for a regular routine diabetic blood work, I didn’t realize that I just felt like crap for the 18 months prior.
Chris Truglio (00:21:55):
And I was just attributing that to, “Oh, I’m stressed from work. Oh, just so much is kind of going on.” And when they said it was celiac, I was like, “Oh, it makes sense.” And I guess with my previous experience of being a diabetic, it’s like I trust science, I trust numbers. And so if these numbers on my blood panel are high and that’s because of celiac, I was like, “Well, okay, I probably have it, but I want to make sure,” because it’s a big decision.
Chris Truglio (00:22:21):
And so I got an endoscopy a week later. I was like, “Let’s do it, if that’s what it needs to be to confirm.” And they confirmed it. And so all right, I just immediately went 100% gluten-free. I’m not messing with anything. And what’s nice is actually the best my numbers have ever been. There’s just a lot with wheat that isn’t not good for diabetics. And so it’s actually helped to keep things a lot more stabilized in that more controlled diet environment.
Chris Truglio (00:22:45):
And once again, I always frame it as it’s a forced diet. It’s a good thing. I have to eat healthier, but it’s not by choice. Are there sometimes when I’m out and I’d love a nice just a really big chocolate cake dessert or the garlic bread that comes up before? Of course, that’d be awesome, but my diabetes and celiac say no. And so kind of just listening. And it listens to your body. I feel so much better.
Chris Truglio (00:23:09):
And I think just with my general personality and how I want to be, I want to feel good. I want to be happy. I want to just enjoy my time, enjoy the people that I’m with. And by doing that, it’s keeping my numbers as fly as possible and not taking a glute. Because both of those, they make me feel bad, and so I want to minimize the time that I feel bad and maximize the time that I feel good.
Josh Clemente (00:23:36):
Jesse, I’m curious your perspective, if it differs, if it’s similar. And really, the celiac link is so interesting and it leads to many other downstream questions. But Jesse, anything to share from your perspective there?
Jesse Lavine (00:23:49):
Yeah. I definitely relate to you on the feel good part. You live your life and you tailor your life to feel good. And also the other part I really relate to is viewing diabetes as a silver lining. When Josh said the word badge of honor earlier, that’s really where it comes in for me.
Jesse Lavine (00:24:10):
After I got to the point where I started to manage my diabetes well and take control of it and not let it control me, it made me realize that because of this data that I’m intaking and because of this lifestyle that I’m tailoring towards having stable numbers, I’m probably living so much healthier than if I were on a regular course of the rest of the average American, and it seems because I’m so, yeah, just because I’m so in tune with what I’m putting in my body.
Jesse Lavine (00:24:39):
And the pizza, I love pizza, but I mean, I can’t really eat it. I can, but it’s not worth it. And you said something that made me laugh out loud in your letter, which was that you can get a box of pizza and take insulin and watch the whole Lord of the Ring trilogy and have less resolution [inaudible 00:24:58]. And that just it’s, yeah, so true. There’s no way to know what’s going to happen in your body because it’s such a …
Jesse Lavine (00:25:07):
You eat pizza. For example, this could be sushi or any other carbs with a fat and protein component to it as well, and it’s just a ticking time bomb of carbs. And you have no idea how to time it. If it’s at nighttime, it’s different. If I’m ever going to eat a piece of pizza or sushi, it’s going to be that I know I have like a long walk afterwards, or I’m walking to and from dinner, because otherwise, it’s just not controllable for me. And I’m going to feel bad and I’m going to be a cranky not very nice Jesse to anybody else around me. And that’s not who I want to be. That’s not who I’m becoming.
Chris Truglio (00:25:45):
The first word that comes to mind with pizza is headache, and that shouldn’t be what it is, right? It should be delicious. Cheese, pepperoni, not like nightmare. Right? And that’s just like that’s what it ends up being is that you know those … You want to avoid putting yourself voluntarily into those situations or, “Hey, I’m getting the best pizza in town, so I’m going to enjoy.” And you’re making that deliberate decision to enjoy. And it just, it makes any kind of … It makes your relationship with food. It has to be a lot more intentional.
Jesse Lavine (00:26:15):
I’ve had many pizzas too, where I’ve scraped all the toppings off. And I just leave the crust and the bread on the table, people are like, “What are you doing?” And I just show them my arm and I’m like, “I have different needs than you do.”
Josh Clemente (00:26:28):
I’m really curious, this is maybe a little bit complex, but I’ve thought a lot about, as I’ve learned more about diabetes. And truly we have this name diabetes for a whole spectrum of conditions, which are very different. And so looking at the spectrum today of what we call metabolic dysfunction and diabetes, such a vast majority of it is a different variety, which is lifestyle-induced chronic illness Type 2 diabetes.
Josh Clemente (00:26:55):
And I have this thought that I’d love to hear some of your perspectives on around Type 1 versus Type 2, and how the different mindsets play out where what you both just talked about is that the silver lining of Type 1 is that it forces a reality, and an immediacy and almost an acuteness to decisions that you’re making, even pizza and pizza nights versus more of the Type 2, which is a very slow …
Josh Clemente (00:27:20):
And I wonder if it’s the less immediate implications of that condition allow for a longer slower sort of playing out of the condition, where the complications might actually get worse in the long-run because you’re able to sort of ignore the acuteness. There’s no immediate risk. And for those listening, the difference between the two conditions is insulin production.
Josh Clemente (00:27:48):
With Type 1, exogenous insulin is used, so injections or pumps to essentially supplement the body when the pancreas no longer produces insulin, whereas with Type 2 diabetes, it typically is an uncoupling of insulin production versus glucose management. It’s insulin resistance.
Josh Clemente (00:28:03):
And that allows for a situation where with exogenous insulin, there can be hypoglycemic events, where if it’s mismanaged, blood sugar can go very low and that can be acutely dangerous. So that’s to set the stage. And I’m just curious about your perspectives there, about the immediacy and the differences between that sort of spectrum of outcomes.
Chris Truglio (00:28:24):
I think the biggest difference is Type 1, you don’t see it coming. There’s no rhyme or reason. There is no cause and effect, where with Type 2, there is more cause and effect. And that’s why I’m not saying I wasn’t obese or anything, but when I was diagnosed with Type 1, I think that’s part of why when you talk about identity formation, I kind of separate. Usually the first thing I say is like, “Oh, but it’s Type 1. It wasn’t by choice.”
Chris Truglio (00:28:52):
And so that’s where I think just in those differences, when you’ve made those decisions for so many years, and there usually are warning signs, but if you go to the doctor and you get an A1C check, you’ll see you’ll be pre-diabetic, which means like, “Hey, if you continue this, you will become full-blown diabetes,” Whereas with Type 1 it’s one day it’s … There’s no warnings, no slap on the wrist, no, “Hey, you need to get your life …”
Chris Truglio (00:29:22):
No, it’s like, “You are diabetic, and you are.” It’s a life sentence. And that’s what I think is kind of most jarring and it’s like, “Okay.” Jess, I think you said a great where you said kind of like before or after, on that big day, because your life does change on that day. And it’s absolutely, “No, you have no say in it.” But you do have a say in how you react to it.
Chris Truglio (00:29:45):
Anything that you would’ve done in the past wouldn’t change the fact that you’re diabetic. But you can totally manage what the rest of your life looks like. And I think that’s where, at least on the Type 1 side, you’re able to see the implications of if you don’t manage it, you don’t feel well, you’re just not yourself around people. And so being able to like, basically, how do you want to respond? How do you want to take control over something that you had absolutely no control in it playing a part of your life?
Jesse Lavine (00:30:14):
I think I would add something onto that too is that Type 1 does hit you in a moment. You’re not expecting it at all, unless you have someone who’s trained to watch for the warning signs. I think it’s also largely true for Type 2 diabetes as well and a lot of the population, is that … Or prediabetes, that’s sort of the warning sign for Type 2. But you go to the doctor and you think that you’re healthy, and then bam, you have this diagnosis.
Jesse Lavine (00:30:41):
And it’s like to what Josh was saying, the effects are much less noticeable because they just sort of build up over many, many years and they’re much more chronic, whereas Type 1 sort of just kind of happens more instantly, I guess that’s the differentiation. Type 1 happens for instantly than Type 2 and pre-diabetes build up over a long period of time.
Jesse Lavine (00:31:08):
But in terms of the [inaudible 00:31:09], and Josh, you and I have shared notes over this, that it is confusing, because this is … For me, I do introduce myself a lot as the fact that I have Type 1 diabetes. And it just comes out naturally because I wear my Dexcom G6 on my arm, and people are oftentimes asking me what that is. And I’ll tell them. I’ll walk them through the whole rig rundown.
Jesse Lavine (00:31:32):
I’ll show them my Tandem t:slim pump that connects to it, and then really tell them the differences between Type 1 and Type 2. And those are usually the first questions that they have. And so I think that from what I’ve experienced in my time within the diabetes community, Type 1 specifically, is that there’s a lot of resistance or … Yeah, I wouldn’t say resistance, but there’s like a protective nature over being a Type 1.
Jesse Lavine (00:32:02):
And it’s like very much drawing a mote around what this disease is. And if anybody with Type 2 says, “I can relate to you,” they’re like, “No, you don’t have the same disease at all.” But I think that they do actually share a lot of differences.
Jesse Lavine (00:32:16):
And because the naming conflates and because the CDC only presents the data in a way that it says 10% of Americans have diabetes and it doesn’t give an actual breakdown of what those are, what the numbers are. And actually like 30 million plus have Type 2 diabetes, but 1.5 have Type 1. It sort of loses the specialness that you feel because do have to do all of these micro calculations at every moment of every day.
Jesse Lavine (00:32:43):
Whereas someone with Type 2, at least the traditional way of managing it isn’t taught, or you’re not taught to micromanage it in the way that you need to with Type 1. And I think that probably that needs to change as well, because Type 2 can be better managed in the way that we’re telling people to manage it. I see Levels having a big part in that. That’s how I view the two different diseases. And I think that better, more distinct separation would probably go a long way in helping the two groups work together, or knowing who is helping who and for what purpose.
Chris Truglio (00:33:25):
There’s a pretty, I’d say isolating moment during the early days of the pandemic, when it’s like, “Hey, there’s going to be a vaccine that’s coming out.” And in California, the thing said, “Okay, it’s going to be frontline worker, and then it’s going to be high-risk people, people with diabetes.” And then when it actually came out, it was people with Type 2 diabetes. Type 1 wasn’t eligible, and it’s like, “So now you’re going to …”
Chris Truglio (00:33:51):
It was just something where it’s like, “Oh, okay.” That’s really like they’re just seeing it as so different from there, that’s where it’s kind of like, I could see it as it’s like, hey, your side versus your side. Right? You just kind of take your stance where it’s like that’s something where people want to get so crazy in the early days. You’re basically told, “Oh, sorry, your disease isn’t a disease enough.”
Josh Clemente (00:34:13):
Interesting. I’m curious about the underlying logic of that thing you said. Is that something about … Okay. Huh! I wonder if it was something around potential complications or something like that. I’m curious, I didn’t hear about that. Yeah, it’s really interesting. When you get deeper into the space and you recognize just how different and just how different these conditions truly are, it is interesting that we’ve applied a single label to them.
Josh Clemente (00:34:42):
I think it doesn’t do anyone any good to not have more clarity, because certainly as it relates to management, you can lifestyle manage Type 2 to a significant extent. And Virta Health and others have done some pretty amazing work showing that efficacy can be very high for even just like diet controlled Type 2.
Josh Clemente (00:35:05):
But I’m curious about both of you, your experiences so far with lifestyle management and how effective it can be relative to, well, I would say just overall how effective is lifestyle management. And have you tried any specific techniques, anything that has worked super well to give you control and maybe lean off dependency on other outside management techniques like insulin?
Chris Truglio (00:35:36):
Especially when I’ll get a really good streak of eating well, having good healthy exercise, it’s a very humbling experience to know that there’s literally not even no days off, like no hours or seconds or minutes off, where if you forget to give yourself insulin, even late for one meal, your sugar will shoot right back up.
Chris Truglio (00:35:56):
And so that where you truly know that it is a 24/7 lifestyle management tool. I think for me, one thing I started doing, I’d actually started doing it trying to get into a good diet for my wedding, was I did intermittent fasting. And I just saw it was incredible, because the last meal I would have would be dinner, and then not eating for whatever it is, 12, 16 hours, that’s basically just flat.
Chris Truglio (00:36:21):
And it really helped me to know, okay, my basal rates are what the kind of constant insulin that’s given to you, that’s staying flat. And I think that was one of the biggest helps. Drinking a lot of water. And I know it sounds simple, but that helps incredible. Getting just a normal amount of like a good amount of sleep. I go for a walk every morning. I actually try to, first thing when I wake up, I try to go for a two to four mile walk and that just sets my day completely right.
Chris Truglio (00:36:51):
I can tell if I don’t get that morning exercise, and it’s not rigorous, right, I’m walking, my levels are always elevated for the rest of the day. And then on that last kind of component is limiting how many carbs I have with dinner. And so the nights where I have … If I have like a salad or a very just like wholesome, very not carb heavy dinner, it just keeps things so much more steady.
Chris Truglio (00:37:16):
And so you’re not trying to correct bigger swings, but just the steady you can keep it of limiting that late night, because then it keeps your … It all just snowballs on each other, where, okay, if my sugar is high going to bed, then it’s high while I sleep, and maybe it’s high when I wake up and now I’m playing an up and down game from the moment I wake up. And that just sucks. No one likes that. But if it stays steady when I’m going to bed, then steady while I’m sleeping, steady when I wake up, I can ride that all the way through to lunch. That’s incredible, right?
Chris Truglio (00:37:46):
I’m able to have that half a day plus more of just consistent levels where I’m not giving myself any insulin outside of that basal. It’s nice. That’s what I mean. It’s just, it’s an incredible feeling to not have to really worry about it, but then you have a nice big lunch and it’s like, “Oh, okay. No. Yeah, it’s still there, no matter what I’m doing.” But you can at least take as many steps to help support for as long of the day as possible.
Jesse Lavine (00:38:14):
Yeah. Walking is also a big one for me, and intermittent fasting has been a really big and very cool unlock for me. Because there is a long time, and this is probably pre-CGM and pre-insulin pump for me, but where I thought that I wasn’t able to fast because I have diabetes, and for fear of just not having insight into my levels and maybe having a potential seizure after that.
Jesse Lavine (00:38:38):
And you always hear the traditional side of things is so fast. You need the carbs. And that’s sort of where I was coming from and wing myself off of. But with a lot of micro experience, I was able to realize that, “Oh, this actually does …. This is probably the most effective thing towards keeping my glucose stable is not eating.” And I tested a lot for lifestyle things ranging from diet.
Jesse Lavine (00:39:09):
I was vegan for six months and then immediately switched over to keto. There were a lot of really good meals and recipes that I have learned from those diets that I still use today, but I’m not extreme on any one approach right now, and I built a toolkit of how to navigate different circumstances.
Jesse Lavine (00:39:34):
If I’m going to be biking for the whole day, that’s a different story. And if I’m going to be sitting at my computer and working for the whole day, that’s also a different story. And I want to touch on this component because I feel like it’s important for people as they’re implementing lifestyle changes is that if you find something that works, you feel like you need to do it nonstop.
Jesse Lavine (00:39:58):
And if you miss a day, it’s like, “Oh I’ve failed.” And I’ve had a lot of those experiences where I have a really good trick of blood sugars, and then I forget to take insulin for a meal or take it five minutes late and then I’m at 250 and my whole world has just dropped. It’s like, “Oh my God, now the next 12 hours or 24 hours, or however long, it just feels like it’s ruined.” There’s a lot of self forgiveness that I’ve learned throughout the years living with Type 1. And that, again, I didn’t ask to have Type 1 and I do the best I can.
Jesse Lavine (00:40:39):
And so, yeah, I just wanted to touch on that component, because I think it’s important to figure yourself if you mess up sometimes. And tomorrow’s a new day and tomorrow’s a new reset of insulin sensitivity, unless you’ve had pizza overnight, in which case you [inaudible 00:40:52] But right now, I also drink a lot of water. A lot of things that I’ve picked up, I’ve learned since we’re going to the levels blog, which are to walk after meals. That’s been a huge help for me.
Jesse Lavine (00:41:05):
I’ve been eating a lot of bingsu pudding. That’s like the first thing I eat in the morning. And yeah, I’m either intermittent fasting or eating cheesey pudding first thing and my blood sugars are super stable after that. And then also really ordering the fats and proteins before the carbs. And a lot of times once I get to the carbs, I’m like, “I shouldn’t even want this. I don’t know why I’ve asked for this, but now I have to eat it because I’ve already taken insulin.”
Josh Clemente (00:41:33):
Jesse Lavine (00:41:35):
Josh Clemente (00:41:36):
Yeah. I mean, it really, it goes to the immediacy and constant nature of what you all are doing every day. I want to take a slight pivot and sort of transition over to what the initial sort of conversation that, Chris, you helped weigh in on, was focused on which really is about, I think, the challenges that are asymmetric that people with diabetes are dealing with.
Josh Clemente (00:42:02):
And in particular, I want to talk about the financials of living with Type 1. We’ve talked about all of the lifestyle, and social implications and identity implications, but I want to talk about financial specifically because it is one of the areas that is just so asymmetric right now. And so can you take us through some of what it’s like living with Type 1 when it comes to money and cost, what you’re dealing with on a month to month basis?
Chris Truglio (00:42:27):
It’s a pretty financially crippling disease. Not going to lie. I mean, my wife will joke. Sometimes when I leave the house, she’s like, “Oh, you got to go pick up another prescription? Just walk by CBS, just because which one is it this time?” And because insurance never lines up how you want it to, you can’t pick them all at once. That’d be too easy.
Chris Truglio (00:42:46):
It can’t be a 30 day or 90 day. Everything’s unique based on insurance, based on the generic, based on what’s there. And so it’s as much prepare as much as you can, but you just know something’s going to mess up. And so I think an underlying thing of it, which is just like a pretty kind of grim reality is you need health.
Chris Truglio (00:43:08):
I mean, I know whether kind of laws and regulations, but you need health insurance. You can’t afford not to have health insurance, which if you don’t have a spouse, that means you probably need to be working for however long to be able to pay for it between you have a new insulin pump, you’ll have the vials of insulin, the pump supplies of the catheters, the reservoirs, test strips, Lancets, there’s two or three more for the CGM.
Chris Truglio (00:43:32):
And so that’s eight separate prescriptions, which can be across however many different companies. And if you run out of one, you need them all. But it’s like you can’t drive a car with three wheels, you need to have everything there. Then maybe this time you run out of gas or maybe this time your lights don’t work. And that’s just to keep things as going as normal as possible.
Chris Truglio (00:43:52):
But I mean, yeah, without insurance, I think I have some numbers here. A new pump would be probably 2,000 to 5,000 every four years. Insulin vials, a 30-day supply. I’ve gotten charged 600 before when I needed to buy them on vacation emergency, just catheters and insulin reservoirs. You’re talking about 700 to 1,000 for a 30-day supply.
Chris Truglio (00:44:15):
Test strips, 150 to 300 for a 30-day supply. CGM sensors can be 350 for a 30-day supply. Transmitters, 450 to 900 for a two month supply. You’re looking at out-of-pocket cost of roughly 2,000 to 2,700 per month. As bad as the housing market can be in San Francisco, you can get a nice place for that, right? It’s insane.
Chris Truglio (00:44:43):
And so that’s on top of living a normal life expenses of everything, of saving for retirement, all that. You have to be not only is it just a every second of your life managing the disease, you also have to be fiscally responsible, otherwise you’re going to have to make hard decisions of, “Do I cut insulin or do I cut dinner?” Or what do you cut this week if you’re not?
Josh Clemente (00:45:10):
That last point is just kind of chilling to imagine having to make a decision between a life or death medication or a meal.
Jesse Lavine (00:45:21):
I personally am fortunate to never have had to make that decision, and I’m very grateful for that. But one thing that Chris mentioned is like, because these costs are so expensive, you really do have to have health insurance. And that was a big part of my turning 26. I was contracting for a fine dining restaurant in Chicago and also trying to start my own diabetes education app.
Jesse Lavine (00:45:46):
And as soon as my birthday hit, I was like, “Okay, I’m off my parents’ insurance, which I’ve been riding comfortably on for this whole time,” and yeah, shit gets real. I had to find a job, and that’s where the search started. And luckily I found something that was so aligned with my value. But yeah, that’s a very …
Jesse Lavine (00:46:04):
Not only is it taking away from other … Is it on top of other costs of living in terms of rent or food, or if you’re investing for the future or anything like that, but it also changes the course of your life. My entrepreneurial journey got cut short because of the need to have insurance. And I have another friend who is in the Type 1 space, and he turned 26 and he told his business partner, they were like doing a marketing startup.
Jesse Lavine (00:46:35):
He was like, “Yeah, I’ve got three month worth of pump supplies left. Let’s do this thing. Let’s hustle,” and they made it work and now he’s got a really cool successful company. But these things are very real thoughts. And you can’t really neglect to consider them before choosing your life course.
Josh Clemente (00:46:55):
Yeah. I mean, beyond the order of magnitude of those costs that people are having to shoulder indefinitely, this is chronic, but also the opportunity cost of having to make decisions about lifestyle, about the career path you take, about the risks you take. Because there are alternatives that besides just having the income generating power to be able to cover those costs in the first place, all of the other potential investments, vacations and so on and so forth.
Josh Clemente (00:47:24):
And so it’s just such a tremendous … I’d love to hear from your perspectives what the great challenges are that the community faces in tackling this problem. Where are these challenges rooted, and what do you see as the most important changes that have to be made so that this can be different going forward?
Chris Truglio (00:47:45):
I think a big piece of it is education and information sharing. You don’t know if are you picking the right insurance plan to help optimize. Are you picking the right supplies that are going to be covered? Are you picking the pump or the CGM or whatever it might be that you’re used to, that you’re comfortable with using, is that going to be covered when you transfer insurances? How much does it cost if you have to buy it out of pocket in an emergency situation? Where can you access it?
Chris Truglio (00:48:15):
I know for my CGM, one of the craziest things was you can’t buy it directly from them anymore. You can only buy it with a prescription. And so in an emergency situation, I actually know of someone that they had to go to a 24 hour pharmacy at 3:00 AM because their son’s CGM died and they needed to get another one.
Chris Truglio (00:48:35):
To get that CGM, they had to basically get an emergency authorization prescription because you can’t buy it over the counter, when it just makes no sense. And so you’re on your own for so much of it, and I think that’s where you’re on your own to figure out because it is a personalized situation of, “Okay, what pump do you use, what insulin, what testing strip, what CGM?” And then layer that with, “What’s your insurance?”
Chris Truglio (00:49:00):
I just think if you’re a healthy person with nothing, insurance is confusing. Now, imagine you have this just thousands of potentially out of pocket expense per month, you have no idea making that decision in a two week timeframe in November, when you’re probably thinking about the holidays and not scrubbing through insurance plans.
Chris Truglio (00:49:19):
It just, you really have to prioritize every single aspect of putting your diabetes first or at least just investing that time carving it out, because no one’s going to do it for you. And the implications could be, okay, now you’re paying way more for the next 12 months until next year.
Jesse Lavine (00:49:38):
Yeah, I think that’s a very important and immediate step. I think at the root cause is just the cost of insulin and supplies in general. Chris, you touched on this on your letter. Once you’re diagnosed with Type 1, you are locked in to these big behemoth companies, markets, and they have total say over what prices they put on it. And so a month’s worth of insulin can cost 600 to 900, or even more in some cases.
Jesse Lavine (00:50:09):
You look at other countries and that’s not how it is. I’m in Mexico right now and I can go buy a vial of insulin for like 30 bucks over the counter. And I may do that before I go back just to stock up, because …
Jesse Lavine (00:50:23):
And there’s also another thing too of like when you get a prescription written, you say, “I need this much insulin,” and I always say I need more insulin than I do so I can have a little bit of extra in case of emergency, a vial breaks, one goes bad in the sun. I’m traveling and I need to have extras in case those things happen abroad and I can’t access them, except if I’m in Mexico and I can buy them over the counter.
Chris Truglio (00:50:43):
The insurance needs to be renewed, that’s what I think is … I’ve had gaps in coverage, which is insanity. It’s like, “Okay, sorry. My 12 refills for my insulin, now I need to get a new prescription.” It’s like, “Nothing’s changed. I’m still a diabetic. It hasn’t been resolved. I still need all of these supplies.”
Chris Truglio (00:51:05):
And just to be able to have it on autopilot like that, the fact that even on that has to be a refill on it, it’s like, oh, maybe your doctor’s out of town, maybe you’re out of town. And just all those little hiccups can really compound.
Jesse Lavine (00:51:20):
Yeah. And one of the micro thing too with insurance and prescriptions is that your insurance has total control over what brand of events that you get. If you’re on NovoLog and this works for you, and they’re like, “Oh, we’re going to switch you over to Humalog.” It’s been described to me as Pepsi and Coca-Cola, but it’s not.
Jesse Lavine (00:51:42):
They’re very different for some people. Some people have an allergy to some. Some people need double the amount of one or the other. And some it’s a complete life adjustment whenever you get this insurance letter, it says, “Hey, we made the decision from our executive team that we’re going to switch you over to this other insulin. Have a happy life.”
Josh Clemente (00:52:05):
I see a lot of challenges in the US healthcare system specifically and in the three party insurance mechanism, which unfortunately I think creates … Although well intentioned and certainly important to make sure that there is coverage, it’s also in some ways shrouding the true cost. Because there’s no real market happening here where a price is set and a product is purchased.
Josh Clemente (00:52:32):
And I’m curious about your perspectives on direct purchases and how all of these things might change if there was more direct accountability from manufacturer to consumer in this case. And of course, it’s a patient relationship and this is healthcare and these are things that we shouldn’t necessarily have to think about in traditional marketing terms. But I am curious about your thoughts about the direct transaction and whether that would change if the insurance party wasn’t in the loop.
Chris Truglio (00:53:08):
If I could rip out the insurance as part of the equation, I would do it in a second. But I’ve paid for, I think, just about everything out of pocket and I know like why would I ever want to do that. If the costs were reasonable, it would be incredible. It would just make things so much easier. You could buy it on your own terms. You could buy however long of a supply you feel comfortable with.
Chris Truglio (00:53:28):
Do you want to have a shelf worth of supplies in your apartment or do you want to have a full closet full, just because of what the insurance and deductibles? Being able to take advantage of that when you can, because usually you can’t. But on the other side for the manufacturers, there’s no incentive for them to lower prices, right?
Chris Truglio (00:53:45):
It’s like a diabetic patient is a cash cow, that they’re going to be healthy for the next 60 years of their life, and so why not? They are a recurring customer every month without fail, unless insurance knocks them off or if they find a different product, which there have been new technologies, don’t get me wrong, but in terms of like …
Chris Truglio (00:54:05):
Jesse, I don’t know about you. Once I find something that works, I don’t want to switch. My doctor will come with, “Hey, have you thought about this?” I’m like, “I’m happy. I have it. It’s stable. We’re good.” Why switch up a good thing? I want to stay as steady as possible. For new technologies, for sure, I’ll be first in line. I want to try anything that’s new. But when you’re comparing I’ll alternatives, it’s okay, if cost is the same, accessibility is the same, if it’s just like, “Hey, maybe different preference here or there,” there’s no incentive to do that.
Jesse Lavine (00:54:37):
Yeah, I’m in the same boat. And I think in a lot of cases the insurance doesn’t quite understand the full extent of the disease or they view it as a very generic. If you have more insulin needs than the next person, or you need more test up because you want to check your blood sugar more, they’re going to say, “Oh, we only will give you eight as opposed to [inaudible 00:54:57]”
Jesse Lavine (00:54:58):
And if you’re trying to be your own CGM, you’re out of luck. Sorry. Yeah, I would love to buy it direct over the counter for both insulin and CGM. That’d be awesome. And I just thought of something too that goes back to your question earlier of lifestyle changes that have impacted my management. And a lot of them, from intermittent fasting to being more conscientious of the ordering of my macro nutrients when I’m intaking them have decreased my insulin needs a lot.
Jesse Lavine (00:55:33):
And so from the time when I was first diagnosed, I was told to eat 90 grams of carbs per meal, and I take one eat of insulin for every 10 grams of carbs. That’s nine units per meal, probably more because I’m going to have to take a correction dose because there’s no way that those nine units are going to cover all that with more insulin resistance over time. And so that’s 27 units per day and that’s only short acting, and that’s not including snacks or anything.
Jesse Lavine (00:56:06):
Let’s just say like 60 units per day of short acting, just to double that, because that’s usually what I was taking. After all of my lifestyle changes and really taking a hard look my lifestyle, I’m taking sometimes 20 to 35 minutes a day, which is around half of what I was taking before.
Jesse Lavine (00:56:28):
And that’s pretty staggering. And there are ways to sort of pack the system, which I think about a lot. If I’m asking my doctor to write new prescription for insulin, I will ask for that 60 units because I know that I’ll use half of that. And then I can sort of the rest away for any day. Yeah.
Jesse Lavine (00:56:45):
I would love to not have to think about hacking or telling my doctor or the insurance companies that I need more than I use. And I would just be able to buy what I need over the counter when I need it, as opposed to waking up a doctor at 3:00 AM to write new prescription and authorize something because something got messed up in the system.
Chris Truglio (00:57:08):
You should need to refill 30 day supply on day 30. You should be able to have that kind of leeway time, but insurance will have so many hurdles that often don’t let that be feasible.
Josh Clemente (00:57:22):
Yeah. Insulin is such a difficult one because it is the patent was initially published open source. It was put out there for the public and the intention was not that this be an income-generating prospect. And now here we are where you’re locked into a cadence of availability and a fixed chemistry that you have to … It’s the only one that the insurance will cover. Are there any other ways that you all know about that this problem can be more openly discussed and more readily tackled? Yeah, I’m just curious to hear your thoughts. Insulin is such a difficult problem and such a unique one. Any thoughts on this one?
Jesse Lavine (00:58:07):
I think that the way that we are doing it now at Levels of empowering everybody with our own data, not just people with Type 1, is it makes the conversation much easier. If I’m talking to a person without diabetes who’s worn a CGM before, there are so many more relatable points to have in that conversation than someone who has never worn a CGM and thinks that the conversations that I’m having about diet and food are only relevant to me because I have the diabetes.
Jesse Lavine (00:58:41):
And so that’s one thing, and that’s like it feels maybe small, but it’s just such a nice relief to have that conversation. And I’ll give example of that. We had a Friday fireside around when I joined, almost I guess like nine months ago, where the whole level scene was just so curious to hear my experience and Alan’s experience with Type 1.
Jesse Lavine (00:59:09):
I still think about that with chills because it was just such cool experience to have people genuinely listening and curious about what my experience was like. And so going back to the big picture is like having people be able to relate to these experiences and the foods that are causing these energy deficiencies in me and in you, we can have a common conversation around how to better fix the food system, and how to better like lower the cost of CGMs because everyone needs them.
Jesse Lavine (00:59:49):
And I just think that more and more of these conversations are important, and the more people who have access to their data and the more people who realize that everything in the middle of a grocery store is not good for them and not optimal for their health is going to change the paradigm overall. And I know a lot of people with Type 1 who have their personal idea of normal as, “I want to eat everything in the middle aisles of a grocery store because that’s what all my friends are doing.”
Jesse Lavine (01:00:20):
And I know for me that was like drinking slushies from the gas station, and eating pizzas and all the things that I would never do today. And to have that as changing the definition of what food is normal from a massive just raining it down from the sky, I feel like is going to have … That’s where I see a lot of help for everyone to be had.
Chris Truglio (01:00:49):
I think on that one note of food, the biggest change I saw when I became celiacs was portions. The bread is at least half the size of normal bread. And it’s like, so this is what a normal portion should be. And it’s just kind of crazy to think everything’s bigger and more, and more curbs, more sugar, whatever it is. And just thinking about what can we do kind of moving forward, I think it’s …
Chris Truglio (01:01:16):
Yeah. When you look at kind of everything up to more recently has been about just like the dependencies. You can give yourself more insulin. How do you make that dependency a lot easier? Okay, you can read that blood sugar, but I love … In terms of what I saw, I think Mike’s response to my letter was focusing on the education.
Chris Truglio (01:01:37):
Because the education is, oh, it’s actually like the way you eat, your diet, these kind of foods, it’s not just a diabetic issue, they’re issues for everyone. There was one article that came out about the different types of oat milks. Right? And I love oat milk, but I saw there was one to avoid, and I was like, “Well, I’ll get the sugar free one. It says it has low carbs.” And I’ve been curious like why my coffee was always kind of making my sugar go up. And that’s a very helpful insight.
Chris Truglio (01:02:04):
The way I have my coffee every morning, changing that can help actually make my morning even more steady. And so just, it’s really taking it like you have more independent control. Just having that education, understanding those factors. And yes, will diabetics have more severe reactions? Yes, of course.
Chris Truglio (01:02:22):
Your body’s naturally like it’s all a guessing game. If you don’t guess right, your body is not going to be in normal state. But if you understand how any kind of body reacts too, it can just get more foods that are better for you for glucose out there more. It can make them more cost-effective, it can make the CGM technology more cost-effective.
Chris Truglio (01:02:41):
And just having more adoption buy-in, Jesse, I totally agree, having people actually talk about it or understand, if I said CGM five years ago, it’s like, “What’s that?” And then you have to explain, “Okay. Well, what’s glucose?” Right? If you’re not a nurse or if you don’t have a family member that doesn’t have diabetes, you probably don’t know what it is.
Chris Truglio (01:03:00):
And now, if there’s just a lot more health implications because of it, that’s just awesome. That’s incredible. And so I think it’s kind of taking it from moving away from the high level and the kind of ideological, but moving towards the practical. What’s the implementation? How do you actually meet real improvements for everyone? And then diabetics are able to … It’s information that they can use. It is a direct path action they can take to improve their general livelihood and make it better.
Josh Clemente (01:03:33):
Yeah. To kind of give my perspective, and I just so appreciate hearing these stories, because my hope is that we really start to treat metabolic function as something that everyone, like you’re saying, everyone is actually playing this game. It’s just most people don’t know that they are. And the more that we can expose that black box that everyone’s tinkering with and they don’t realize it, the more I think we can start to tackle the most pressing parts of that issue.
Josh Clemente (01:04:06):
And what I mean by that is the preventable chronic illness and the acute conditions, which require really constant monitoring and maintenance. But once we all have a better perspective on the fact that we’re all on the same spectrum, we’re all dealing with these issues. And there are things that society can optimize for, the food supply, the healthcare system, the insurance system, the political nature of subsidies that are driving many of these things.
Josh Clemente (01:04:33):
Once we’re all kind of aware of, “Okay, these are the levers that are being pulled.” And it doesn’t just affect 1.5 million people with Type 1 diabetes, it actually affects all of us. And like you’re saying, the choices we’re making, the education we share is going to drive a narrative at the social scale. And I think the secondary effects, my hope is that the secondary effects of more people who are empowered with their information, regardless of where they are on the metabolic function spectrum, will be more informed and thus individual activists pushing for a better future.
Josh Clemente (01:05:03):
And it doesn’t matter if we all agree. I think we can all have different political perspectives and yet agree that insulin shouldn’t be as expensive as it is. And that you shouldn’t have to lobby for the right to have access to the data that is coming from your own body. You should own that information.
Josh Clemente (01:05:18):
And so whether that’s a CGM for the management of diabetes or a CGM for better understanding of how you are aging and how well you are controlling your lifestyle, whether you’re hitting your weight loss goals, your performance goals, both of those things are you interacting with the data from your body.
Josh Clemente (01:05:32):
To try to inject some optimism into the future, I hope that by opening up the old school supply and demand equation and putting it out there, I think we can really bring more eyes, many, many more eyes onto these problems. And so, anyway, I’m just curious, anything else …
Josh Clemente (01:05:50):
To end on a positive note, have you seen positive trends? Anything that you’re looking forward to that you’re seeing that is really giving you a good feeling about the future? And what can people do to get more informed to try and boost the message and the signal for the Type 1 community?
Chris Truglio (01:06:08):
I think so much is really being able to look at diabetes in a different light. In as, I think, kind of Jesse and I said, take the silver lining, right? It’s not a death sentence. No, you can live a good healthy life for the rest of your life and just make the kind of right choices. And what I’ve seen so much of online in very, I would say, disconnected spheres is a lot more information sharing about glucose levels in general, in a good way, right?
Chris Truglio (01:06:36):
Like just general people taking to their health and having glucose be a lot more a part of that kind conversation. And naturally when that’s there, diabetes are adjacent to that. And I think really for the diabetic community is, it’s just to lean into that and take what you can, right? It’s okay if it’s not directly about you, but you can still learn and benefit from it.
Chris Truglio (01:06:56):
There’s plenty of other areas of life where other people do that too. And so if there’s something that helps you, it’s fine if it’s not about you. But take the positive learnings and go ahead. And just seeing so much more that, whether it is on Instagram or LinkedIn or Facebook or whatever, even just on the news, you see it there, that’s awesome. That means there’s momentum, there’s education around it.
Chris Truglio (01:07:18):
And then what’s this kind of next order effects is once you see the cost of things, right, it’s like, how do you actually get there? People have to know about it in order to fix it, and have to care about it in order to want to fix it. And so just having that kind of exposure there is really great. And having it be of all walks of life is incredible too.
Chris Truglio (01:07:36):
And so just keeping that positive message of all of this is not just for diabetics or it’s just for non-diabetics, it’s for everyone. It’s general health and wellness that is applicable to anyone at any kind of stage of their life.
Jesse Lavine (01:07:52):
Yeah. And I’ll offer perspective from my day-to-day at Levels, which is about 50% in the member support queue. And it’s so cool to be able to field conversations from people who have positively experienced change in their life. And not only that, but people who maybe putting on a CGM for the first time and saying, “Oh, but it’s a different level for my fingers stick glucose level.”
Jesse Lavine (01:08:21):
And then you sort of dive into it a little bit more and you’re like, “Oh, well, you check this in the morning and there’s a dawn phenomenon that we all have, or that some of us have.” And your glucose will spike, and if you’re capturing that comparison in that moment, then your finger stick is going to have a different value for your CGM.
Jesse Lavine (01:08:38):
And so that’s just one example of things where it’s extracting a layer of like, “Oh, it’s not the technology, but it’s actually this is how my body works. And I do have a spike in the morning or my coffee spikes me.” And, yeah. There many beautiful examples of that, but that is one that I think captures it well.
Josh Clemente (01:09:03):
Awesome. Well, we’ve been at this for some time. Chris, I really appreciate you giving us the time and your perspective and background. And kind of, I know this is something that you tend to keep more private, so I know sharing this with our audience, with our membership is really appreciated. I learned a ton.
Josh Clemente (01:09:19):
There’s so many unique examples of life, and all these different identities that are formed and all of them come down to a shared root of metabolic function and something that some of you deal with in a more consistent and more acute way than others. But I’m really grateful for your willingness to come and share your perspective and your experience. Looking forward to changing some of these things that we talked about today.
Chris Truglio (01:09:42):
Really appreciate it. I do think the future is bright, and I think Levels is playing a huge part in that. And I really think despite whatever kind of responsiveness, people are always hesitant to change. And I think just kind of being able to see that net benefit, that education, just having all of that helpful information out there, it’s nothing but good.