Just a little bit about me: I am a technology entrepreneur, mostly focused on freight Transportation. I have a bachelor's degree in economics from Florida State University, and I am a founding board member of the Rivere Foundation that promotes low-carb and high-protein dieting for improved diabetes management, and it does business under the moniker Let Me Be 83. Let Me Be 83 is a plea for normal blood sugars and the 83 is a reference to 83 milligrams per deciliter.
So, in some ways the talk that I am going to share with you today is a five-year followup to a presentation that I gave in 2019 at the Children with Diabetes Friends for Life Conference in Orlando. That 2019 presentation was similar to this one, but it was substantially different and if you're interested in learning some different topics in a little more detail, the URL of that presentation is at the bottom of this introductory slide and this slide deck is in the Dropbox for the conference.
This is a photograph of me and my immediate family, taken in November. To the far left there is my son Andrew, then my wife Ellen, and to the far right is my daughter Gracie.
So my connection to type 1 diabetes is Andrew. His diagnosis came in June of 2010, which was a few weeks after his fifth birthday. For him, that was the summer before kindergarten, he was 3 and a half feet tall, and he weighed 39 pounds. Today, he is a college freshman, he is in school on an academic scholarship, he is approaching 6 and a half feet tall, but not quite there yet, and he weighs 190 pounds.
So I like to show this slide and it really conveys two things. The photographs are taken almost exactly one year apart, from the date of Andrew's diagnosis through November of last year, and so it gives an idea of the stages of life that we've walked Andrew through with type 1 diabetes. Those photographs are sat on top of a graph of his A1C value since diagnosis, and if you ignore the first two tests, which were diagnosis day and six weeks later, what you see there's 13 and a half years of A1C values that average out to 5%, which is pretty great.
This is how great that is: so Andrew's had 43 A1C tests in that period of time, their average is exactly 5% with a standard deviation of 0.23, and if you will compare his 5% average over 13 a half years with prevailing outcomes, from a paper published in 2019 that we've actually seen presented at the this conference a couple of times already, the difference is pretty stark. I drew a couple of grey lines at ages 5 and 18, to help you see the years that we've walked through diabetes with Andrew. I boxed in yellow prevailing outcomes over two time periods -- we'll talk about that a little more on a future slide -- but I circled in red 18 years old, which is where Andrew is now. So, prevailing outcomes for an 18-year-old type 1 diabetic is an A1C deep into the 9% range, so probably 9 and a quarter is about where I'd say that is drawn. Compare that to the slim green line that I drew at the very bottom of the slide, which is where I estimate that 5% is relative to these outcomes.
The exact same data presented in a little different way -- I like this chart as an alternative visual. This chart comes directly off of the diabetes complications -- excuse me, control and complications trial -- and I sort of boxed the standard deviation low and high, and circled Andrew's average for the last 13 and a half years. Then I boxed in yellow, down in red, prevailing outcomes. You can see on one hand you have normal blood sugars and on the other hand you have highly dangerous blood sugars.
And those blood sugars are exactly that: they have repercussions, they are dangerous. This is an American Diabetes Association publication that was put out in April of 2020 -- link is at the bottom if you'd like to see it. This chart shows the hazard ratios of various diabetes complications for A1C levels above the comparator of 4.6%. So let's look at a couple that are very frightening: the top one is retinopathy, the middle one is diabetic nephropathy, and let's look at where Andrew is, which is a little bit to the left of a 5.1%, and look where his peer group's prevailing outcomes are. This is not -- these are not -- good outcomes, and these are prevailing outcomes.
So let me take just a second and make it clear that Andrew is not constantly fixated on blood sugars. I promise you that he's not. In fact, he's mostly fixated on basketball. It's his most favorite thing in the world -- not just sport -- basketball is his favorite thing, and so I just put a few pictures on here to show you how important that is to him. And off at college now, he plays basketball three to four hours a day, five to six days a week. That's how much he loves the sport. He actually started on an intramural team at college, just this week.
This slide shows Andrew's day-to-day diabetes management tools. So, across the top is a small pocket-sized log book, similar to what Beth showed on stage with me yesterday. In that little book that Andrew carries with him, he records his blood sugar readings, his insulin doses, and uses that to inform the dosing decisions he's going to make day after day after day. To the bottom left you see a standard glucometer. I'll just mention Andrew has used a CGM, but uses one very, very, very rarely. In 13 and a half years, he's probably worn a CGM a total of three months. That's mostly his choice, and there's a couple reasons for that: he has skin sensitivities to the adhesive, and he has a very difficult time keeping them on because of the volume of basketball that he plays. Add on top of that, they have a tendency to give false alarms a lot, and Andrew hates that -- he does not like being woken up in the middle of the night when the CGM says he's 40 and he's actually 85. He also doesn't like having the CGMs go off in class, because some of those urgent lows you can't turn the alarms off. Andrew uses three insulins packaged in vials, all from Novo Nordisk. He uses Levemir, Novolin R, and Novalog, and we'll talk about that a little deeper on some other slides, and then he uses standard insulin syringes -- almost exclusively 30 unit syringes, although during his period of most rapid growth, we did get pushed into u50 syringes for a few years. And he uses glucose to raise his blood sugars. And of note, if it's not obvious, technology is not key to Andrew's success.
More strikingly, technology is not improving outcomes. So we're back to this chart on the left, that I showed earlier. I want to say a couple more things about it and then make a larger point. So the paper was focused on a study of a very very large number -- many thousands of diabetics -- through the T1D Exchange data, and they were comparing the exact same people over two time periods: "2010 to 2012" and "2016 to 2018." -- so a three-year period and a three-year period, and they had access to medical records. You can see that the exact same group of people had worsening outcomes over that two time periods. From the exact same paper are the charts to the right. So you can see that CGM usage went up dramatically between the two time periods. Insulin pump usage went up dramatically between the two time periods. And yet, outcomes got worse across the board, and got markedly worse for adolescence teenagers and young adults.
So Andrew's key to success is pretty easy, it's Dr Bernstein's Diabetes Solution. I've said it a thousand times, maybe a hundred-thousand times, it's easily the best $20 I've ever spent. I circled there the date of the Amazon cart on the slide. That was nine days after Andrew's diagnosis, and my family, frankly, was living in blood sugar rollercoaster hell, and I was looking for a way out. So I bought a bunch of books off Amazon about diabetes. They showed up, and frankly, Dr Bernstein's was intimidating -- over 500 pages. I didn't start with Bernstein's book. I actually started with Protein Power, believe it or not. It's the first one that I read, but when I got to Dr Bernstein's book, I was convinced that we had found our way out of the the blood sugar rollercoaster hell that we were living in.
So here are my takeaways for you, from the first part of my talk:
So I'm going to spend a few minutes summarizing Dr. Bernstein's diabetes regimen, at a very high level, and talking about how we apply it day-to-day. I will tell, you my 2019 talk, which you can find on YouTube, goes into this much greater depth, but I am going to give you a summary today.
So at the very highest levels, Dr. Bernstein's concept of the laws of small numbers -- and there's a few of them -- are really what his program is all about. The most important one in my mind is that big inputs make big mistakes, and small inputs make small mistakes. So the goal that we pursue, with Andrew's blood sugar, is long and shallow hills, as opposed to short and steep peaks, which we work hard to avoid. And we can do that because Andrew follows a low-carb, high-protein diet, he knows how to properly use insulins, and he's very careful to precisely correct low blood sugars, to not get himself onto a blood sugar rollercoaster.
So I'm going to start talking about the low-carbohydrate and high-protein diet that Andrew uses, and it's pretty simple: carbohydrate has a limit, protein has a goal, and fat really is just a long for the ride.
So this slide is straight out of my 2019 talk, in Orlando, and I just grabbed two random days in November of 2018 and averaged them. And so, Andrew's carbohydrate and protein intake that day, which is the only two macronutrients we care about: he had 30 and a half grams of carbohydrate and 258 grams of protein. So in 2018, he would have been 13 years old.
Bernstein has some recommendations about how much protein: Dr. Bernstein recommends a minimum of 1.2 grams per kilogram of body weight, but that's for sedentary adults. He recommends a minimum of two, and as much as five times that amount for active and growing children. Andrew's hunger really guides his protein consumption, and it really always has. My wife and I did track protein carefully for a couple years, after we moved to this diet, but then we got comfortable and Andrew's hunger guided. When he was living in home, he would just ask us (his mom and me) to move his protein consumption up and down as his hunger changed. Now that he lives on his own off at college, he's doing his own grocery shopping, his own cooking, and he does all of that himself. I'm not involved in any way.
Andrew does exercise a lot -- I mentioned earlier a lot of basketball -- and he burns a lot of calories and, therefore, he usually eats very large meals with a lot of protein, and the fat that goes along with it, and he consumes a lot of calories. If his exercise is limited for a few days, he'll shrink his meals. He just can't -- he physically can't -- eat as much food, you know. He did that over the Thanksgiving holiday and over the Christmas holiday. I saw him, you know, sort of reduce his meal sizes for a few days, and then he would just go right back when he started playing basketball.
So next I'm going to talk about properly using insulins and proper dose and timings, but to do that we have to talk about food just a little bit more. So the graph to the left is something I threw together -- you can see hundreds of these if you just do a Google image search. It shows the relative blood glucose impact over time of the three major food macronutrients, and you can see carbohydrate has certainly the fastest and the most potent impact on blood glucose, and therefore we limit it. Protein has a pronounced and a very real impact on blood sugar, but it's not as steep and as fast, and it is much more protracted over time. Shallow hills. Long shallow hills. That's the goal. So to the right, we need to talk a little bit about insulins. Boxed in red there are the three insulins that most type 1 diabetics are prescribed by their doctors, to cover a meal. The brand names are Humalog, Novalog, and Apedra, and you can see the goal there: it's how potent and how fast can I be. And science continues to monkey around with insulins, and we have even faster insulins than these now, but I just couldn't find Google images, but these are the most commonly prescribed bolus insulins. All the way to the right you see the two most common basal insulins: detemir and glargine. Those are used to keep the liver's glycogen production in check. We're going to talk about that in some detail, so I'm not going to go into that now. The most important insulin for this slide is what's drawn in solid purple and that is regular human insulin, which, as the name implies, is regular human insulin. It has not been monkeyed around with by science in any way. It's not been sped up, it's not been slowed down, and fortunately for us low-carb and high-protein dietary followers, it matches Dr Bernstein's low-carbohydrate high-protein meal plan almost perfectly. It's almost like a Ronsco Rotisserie, you can just about set it and forget it, and it's wonderful. And so Andrew doses most of his meals using regular human insulin.
This is an infographic that Dr. Bernstein put out several years ago and I want to spend just a minute to walk through it, because this is a common trap people will fall into and give up on trying to use a low-carb diet. So Dr. Bernstein says plainly, if you're on a low-carb diet then the timing of regular is just the timing you need. So on the left is a chart of what we strive for and what Andrew accomplishes every day. The solid red, sort of flat line is holding blood sugar steady. Above that line is the glucose impact of the low-carb meal that he eats, and below that line is a representation of the insulin action of regular, which is slower and gentler than the ultra rapids. To the right hand side, we show a common mistake and a pitfall, and a reason people might give up on the diet, and that is to change to a low-carb high-protein meal but try to dose it with an ultra rapid acting insulin, and you end up with two problems: way too much insulin action too early, and you can have hypoglycemia. In fact, you can have somewhat severe hypoglycemia and be forced to treat it with glucose. And then the insulin wears off and the meal keeps digesting, and now you have the opposite problem, which is hyperglycemia, which could be protracted, and this is a very common pitfall that people fall into. I'm concerned, and I'm sharing with you doctors here: there's a lot of talk about low-carb diet, low-carb diet, low-carb diet, and it's part of the solution -- it's fundamental -- but you also have to learn how to dose insulins.
So now we're going to talk about precisely correcting low blood sugars, using measured amounts of pure glucose, and being careful not to over-correct. So why do we use pure glucose? It's certainly not the standard of care. The reason that we use it is that glucose does not need to be digested or converted by the liver into anything else, it is absorbed directly by the mucous membranes of the stomach and the gut, and based on my personal experience with my son, I'm fairly sure it can be absorbed by the mouth. My son has learned when he's fairly low and wants to get his blood sugar up fast, he will chug a little liquid glucose, swish it in his mouth, and swallow, and that seems to even help things move along faster. So Andrew uses measured amounts of pure glucose and, as he's aged, he's actually shifted towards a preference for liquid, so he uses almost exclusively liquid glucose now, because it certainly acts the fastest. When he was younger, we predominantly use Smarties candies -- the US Smarties candies, not Canadian Smarties candies. They're convenient because they come in three sizes. When Andrew was really small, you know 40 pounds, the original Smarty, which is 0.4 grams of glucose per tablet, was useful, and we used those for many years. As he got older and larger, and needed larger doses of glucose to raise his blood sugar, we graduated to the giant Smarty. And then later in life he even used the Mega Smarties for a while, which are 3 grams of glucose per tablet. The chart to the right is Table 20-1 out of Dr. Bernstein's Diabetes Solution, and I want to share a little bit about this with you, because I think it's also important. So I circled in red where Andrew would fall on this chart. He weighs about 195 pounds so he's going to be somewhere between a blood sugar raise of say three and a half and four milligrams per deciliter for every gram of glucose that he ingests. That's what Dr Bernstein's table would signify. The reality is, Andrew is much more sensitive to glucose than that. One gram of glucose actually raises Andrew more like 8 to 9 milligrams per deciliter. So I say that to say that, you know, the concepts are sound. Dr. Bernstein is very clear, on the page that has this table on it, that this is just a starting point and that you've got to figure out your own dosing. But for my son, it's actually quite different. He's almost double, maybe even a little more than double, as since sensitive to glucose as this chart would indicate.
So now I'm going to transition into some questions that I think people ask when they're pondering this method of managing diabetes, and that is "why do it?" And for my family, it's really simple: safety, quality of life, and there is no deprivation, so why not? So in terms of short-term safety, high-carb foods require very large doses of some of the most highly potent and most ultra rapid acting insulins that man has ever created. It is, frankly, impossible to dependably match up those two steep peaks in time, between high-carb foods and ultra rapid acting insulins. Every now and then you get lucky, but most times you fail and you have a low blood sugar and/or high blood sugar, and that is the definition of the blood sugar rollercoaster. Instead, my son has slower lows and lower highs, both of which are much safer. In terms of long-term safety, I want to give credit to Dr. Bernstein's dehydrating illness protocol, that's in chapter 21 of his book. It leads to dramatically fewer diabetes related hospitalizations. In 13 and a half years, my son has never once been to an emergency room or a hospital for anything diabetes related, and typical rates are very high. There's a reference here you can click on when you get these slides from the conference. When my son was diagnosed and my wife and I went through diabetes training, we were trained on the first day to expect four hospitalizations a year, due to diabetes-related mistakes, DKA, or extreme hypoglycemia. He's never had one; we're 13 and a half years in. The commonly occurring, long-term complications of diabetes, which we talked about a few slides ago, don't come from "diabetes," they come from chronic, abnormally high blood sugar levels, and we just, frankly, avoid those. In terms of quality of life, my family has far less fear of diabetes due to the enhanced safety that we talked about on the previous slide. Having slower lows and lower highs means that diabetes commands far less constant attention, of my son now, and my wife and me when he was much younger. Becoming the captain of your own ship, through the mastery of diabetes management, is huge hugely rewarding, and I think, when I get a little later in the presentation, give you some insight on what Andrew is doing off at college, I think you'll understand that, you know, he feels in control, and he's proud of it, and he should be. And lastly, there's no deprivation. It's certainly true that most of the foods that my family eats are from the outer perimeter of a grocery store, but we eat phenomenally well, and we will gladly trade the highly processed convenience foods for this enhanced safety and quality of life.
Now I'm going to spend a few minutes talking about, a few things. This is a deep part of my talk: growing kids, their protein requirements and their insulin needs, and the related tragedy of Novo Nordisk's recent decision to discontinue Levemir. So I'm going to start by saying that growing kids need a lot of protein, so be sure to look at this slide for a second: this is six years. These four photographs are taken almost exactly two years apart, from ages 11 to 17. Children are growing. They are, by definition, bodybuilding. My son is approaching 6'5" now. I'm not sure how tall he was in 2016 and age 11, but that's an impressive amount of growth, for me, in six years. I think, as adults, we have a tendency to forget children do this and I think these slides, like this, are important to remind people. And I will harp on protein. I will harp on protein, because if parents don't feed children enough protein, they can have growth challenges, and so, protein has a goal in our diabetes management regimen. To try to put a fine point on this: by the coincidence of an endocrinologist leaving the practice and Andrew being assigned to a new endocrinologist, he had appointments that were 65 days apart, December of 18 to February of 19, and in 65 days he grew two centimeters (0.8 inches).
So this is another way to look at the insulin needs of a grow child. Remember that insulin is an anabolic hormone; what you see here is two things. I like to put the A1C values in these charts because I want people to not forget that, despite all these massive changes as Andrew grew, he had a1c's around 5%, but his insulin needs were dramatically different over these 13 and a half years. When he was first diagnosed, and for about two years, I think he had a pretty extended honeymoon, he used very, very little insulin. There were days he took a unit, two units. I highlighted ages 12 to 16 and a half here, which are the years that he grew the most rapidly and required the most insulin, and his insulin needs peaked at over 160 units of insulin per day, which is 1.8 units per kilogram of body weight. The Ada guidelines for starting insulin, on a newly diagnosed diabetic child, is 0.5 units per kilogram, so you get a sense here: Andrew was almost quadruple. Now to be fair, Dr. Lennerz talked about this yesterday, she sees it in her practice. I want to visualize for you. This is the reality of how this works.
So I'm gonna take ... [interrupted by a question] ... so the A1C values are [in the] boxes and they just go straight across at 5%, and the insulin doses are the solid blue line. I see. So the control never changed; never changed, despite needing between one unit of insulin a day at the bottom to 160 units of insulin a day at the peak.
So we'll talk a little bit about insulin and glucose and glycogen metabolism, because it's important as I set up the next few slides. Insulin causes glucose to go to one of three places: 1) to cells in the body for immediate energy needs, 2) to the liver or the muscles to restock their depleted glycogen reserves, or 3) to fat cells for long-term storage. Glucose is stored in the liver and the muscles in a form called glycogen. It's an energy reserve that can be very quickly mobilized for sudden glucose needs. Muscle glycogen is converted into glucose by the muscle cells, for their own use during strenuous exercise, and notably they can do that without insulin. The liver converts its glycogen to glucose for use throughout the body, so the liver provides sort of everything else in the body with the glucose that it needs, from its glycogen stores. The liver should convert its glycogen stores to glucose only as the body needs it. Unfortunately for type 1 diabetics, this is how that process works: 1) the pancreas monitors blood glucose and releases insulin when blood glucose is higher than target, 2) the liver monitors insulin levels and converts glycogen to glucose when insulin levels are low. So the inability to produce insulin is a double whammy for the type 1 diabetic. We commonly think about glucose from ingested carbohydrates being unable to be taken up, but in addition, the liver will constantly add glucose from glycogen to the body, due to [insulin] levels being constantly at or near zero. So if my son stops taking insulin and stops eating, his blood sugar will go to the moon, and he will go into DKA, and without medical assistance, he will die. So the purpose of basal insulin is to prevent the liver from constantly adding glucose to the body from glycogen, and the goal of basal insulin is flat blood sugars. There is no other purpose of basal insulin.
So Andrew uses a multiple daily injection insulin regimen. I Googled this up, grabbed it out of the paper (the references at the bottom there). This is common medical thinking on basil insulin and this depiction is what all the literature shows, and that is a depiction of a flat basil need. So what you see here is a five shot per day MDI regimen, consisting of two basil doses of insulin, they're drawn in black there with two red arrows, and three meal boluses (breakfast, lunch, and dinner), and the common assumption that you're going to use one of the ultra rapid acting insulins. What I want you to notice here is the assumption -- the common belief -- that basal needs are flat.
I tried to draw here the reality for a growing child, because the reality of basal needs is often very different than flat, particularly for growing children. And so the green lines on this depiction shows Andrew's basal insulin requirements. He takes Levemir three times a day, at 7:00am, 9:45pm, and 2:00am. Before I move to the next slide, I just ask you to just mentally take note of how much larger his 9:45pm basal dose is, and his 2:00am basil dose is, versus his 7:00am basal dose.
And these are the numbers behind that. So I actually grabbed four time periods, just to provide some extra data, and so this demonstrates to you how highly bifurcated his basal needs are. So the first line is 7:00am Levemir dosing, and the next two lines, 9:45pm and 2:00am, are the overnight dosing, so I sum those together to get daytime versus overnight. And you can see his total daily doses of insulin, from 12 to 18 years old, at four time periods. What's most important is the bottom line which is basal insulin needs of 87% of daily need overnight, 82% when he was 14 years old, you get the idea. Even today, at 18 years old, upwards of 65% of his of his basal needs are overnight. I do see it flattening out. Obviously, this data shows that. I do believe Andrew is still growing, even at 18 and a half years old. Myself, I grew almost to 20, and I think his basal indicates that, and every time he goes to the doctor he's, you know, a few millimeters taller than he was the last time. I do believe his basal needs will flatten out, as he continues to age into adulthood, maybe age 20, age 21, but they've been highly bifurcated for many, many years, and this is very common for growing children.
And now we get to Novo Nordisks' decision to discontinue Levemir, which they gave notice of on November 8th of 2023, and it's a big problem for children with type 1 diabetes. So, firstly, we only have three basal insulin choices today: they are glargine, detemir, and degludec. Brand names of Lantus from Sanofi, Levemir from Novo Nordisk, and Tresiba from Novo Nordisk, plus there's a few biosimilars to Lantus/glargine, and those biosimilars, and the related decisions by insurance companies, have caused some of these problems. But I want to focus on on Levemir and not get into an insurance discussion. The chart in the middle is hugely important. You can see the action times and half lives of these three insulins. Glargine's action time was estimated to be between 12 and 24 hours and those of you that don't dose insulin, you know, should be frightened by how broad that range is, but it's true, it depends on the size of the dose, depends on the type of the person, their metabolism -- there's lots of things that go into that. Really, to me, the most important number on this slide is the half-life, so let's just walk down that column. Glargine's half-life is 24 hours, Levemir's half-life is 7 hours, and degludec's half-life is 25 hours. How do I manage, or how does any parent manage, the highly bifurcated basal needs of a teenage child without Levemir? Only Levemir can accomplish the extreme daytime versus nighttime bifurcation of basal needs that growing children commonly have. Notably, Levemir is also the only basal insulin that can be diluted, which is a really big deal for infants and toddlers. It's also a big deal for adults sometimes. Kory Seder mentioned, yesterday, that even as an adult, he needed to dilute insulin (take very tiny doses) in the early days of his diagnosis, when he was still honeymooning.
Levemir is also a big problem for all people with diabetes. So to achieve their long action times, these insulins do two very different things Lantus (or insulin glargine) crystallizes under the skin when it's injected, and the body then has to break down those crystals, and that's how it achieves its long action time. Detemir and degludec remain in solution and they bind to albumin, and they have a neutral pH. So due to its method of action, glargine has an acidic pH in the bottle, it stings when it's injected, and the change in pH is what forces the crystallization, and that crystallization is how it achieves its long action time. There's a huge problem though: if glargine is accidentally injected into a vein or a capillary, instead of fatty tissue, it doesn't crystallize as it's designed, and instead it delivers a highly dangerous, rapid acting insulin effect. The powers that be in the diabetes world like to play this problem down, but patients know it very well, and you can see for yourself with simple internet searches for terms like "Lantus low" and "Lantus ambulance." Detemir and degludec do not pose a similar danger to the Lantus low, because they behave differently, and they don't sting when when injected, and Levemir, importantly, has a shorter time of action. By the way, the Lantus low is the worst kept secret in the world because it's described in Sanofi's Lantus product monograph. There's the ATC code, this is off of page 45: "hypoglycemia can result from injection directly into a blood vessel, followed by hyperglycemia since there was no Lantus deposition for long-term absorption." And yet... And there's yet another problem... So the glargine/Lantus coefficient of variation is dramatically inferior to Levemir's. So when you're dosing a potent medicine like insulin, you really want the same dose, in the same person, time after time after time, to behave the same way. That's the definition of coefficient of variation.
Detemir's is very much superior to Lantus', as shown in this chart to the right, and there's a reference in the bottom of this slide. Detemir is also on the World Health Organization's List of Essential Medicines, so they think it's important. My plea for you today is, if you have any influence, please help us change Novo Nordisk's decision. My friend Alison Smart is in the audience today. She is spearheading a campaign to try to change the decision. She has some flyers available that we'll be happy to pass out. You can contact Allison at insulinoptions@gmail.com. You can sign a change.org petition that Alison has put together, and our ask of you is to please take a flyer, read it through, understand the issue, and then reach out to people of influence -- politicians, etc., etc. -- and help them understand why Levemir is very important to the diabetes community.
So with that behind us, I'm going to transition into sort of how Andrew did from middle school to now he's a college freshman, and you see the photographs there from middle school until a college freshman. So I'm going to start in 2018. Andrew spoke to a New York Times reporter. That interview was done in conjunction with Dr Lenners' publication studying TYPEONEGRIT. That was done in the Journal Pediatrics, and inside of that New York Times article (link at the bottom) Andrew was quoted by Anahad O'Connor as saying, "I do this so I can be healthy. When I eventually move out and go to college, I'm going to keep up what I'm doing, because I'm on the right path." That was May 7th of 2018. His birthday was at the end of April, and that photograph is from his birthday. He had turned 13 and he was in the seventh grade. One year later, at the Friends For Life Conference, I addressed a couple of questions related to making this choice on behalf of your child: What if Andrew hates you? What if he rebels? I had a couple of answers -- a few answers. The Diabetes Control and Complication Trial shows benefit of tight glucose control, even many decades after that study ended, and even for people who lost the tight control. If Andrew rebels, he wasn't harmed on my watch (my wife and I did our responsibility to a child), and he'll leave our care knowing the consequences of poor glucose control, which frankly are often not talked about, and how to avoid them. In short, I just view this as parenting with higher stakes, at least where Andrew's physical well-being is concerned, and I have faith in Proverbs 22:6.
And so here, in 2024, with all of you today, I share an update on Andrew's first semester away at college. Andrew is enrolled in Florida State University, and he likes to text photos to me ... of meals that he prepares for himself. So this is a slide full of breakfasts. I actually, frankly, had many more to choose from. He texted me his breakfast this morning. I texted back my hotel breakfast. And there is a lot of variety here. You see things like a sort of a faux egg McWaffle there. ... [interrupted by a question] ... so this was actually not a chaffle. This is almond flour-based, but you get the idea. You'll see all types of sausages and scrambled eggs. You know, he's he's fairly creative, but also, you know, doesn't need a lot of creativity. I do happen to know that the one scrambled egg picture, that's sitting right beside the oven there, has asparagus in it. That's what the green is, mixed in with the scrambled eggs.
And here's some dinners. So you'll see things on here like steak, and pork chop, and sausage, and chicken, and okra (we're Southerners), asparagus, brussel sprouts, green beans, collard greens. This is an 18-year old kid guys, living away from home for the first time, and he's doing great. ...[interrupted by a question] ... Andrew lives in an apartment that is -- it's four young men, and each guy has his own bedroom and his own bathroom, and they share a common area, which is a kitchen and a living room. So that's his environment. That was on purpose. We considered dorm life; we took a look at the meal plan available at Florida State University, and I won't say that it wouldn't have been workable, but it would have been very mundane. Much more limiting than him choosing to shop for himself. I also happened to drop a photograph of a pint of Rebel ice cream there. He literally texted me this, it was a new flavor he found at a local Publix in Tallahassee, and he said it was the best flavor he'd ever had. So this just gives you a sense of how he's doing. He's 18 years old, this is his first time away from home. And the other thing I'll mention is that he's proud of himself -- you know, he's the captain of his own ship -- and he should be.
He had a few challenges. He had a pretty severe ankle injury that happened playing basketball last semester. He was in that boot for about 10 days. He also had a pretty extended illness. This won't surprise anybody who has children, but about 10 days after being in college, everybody got sick, including Andrew. He had a pretty severe illness that did sent his insulin resistance to the roof, but overall, Andrew did really well, very well, for his first time living away from home. He made good grades and his mom and I are very proud of him.
I want to spend just a minute talking about my perception of Andrew's endocrinologist's perception, because I think this is sort of important for medical professionals. So let me start by saying that Andrew's endocrinologist is a very nice man, and he's a good doctor, and he's supportive of us. He's also seen Andrew since diagnosis, with the exception of a couple years when he stepped into a new practice and didn't see Andrew. So he was Andrew's diagnosing doctor at age five and he's still doing Andrew's twice a year diabetes care at age 18 and a half, so the man has seen all of what I'm showing you. But, he perceives, or he equates, success with effort. So his perception is that we do insanely hard work to accomplish these results. Impossible work -- that near to normal blood sugars just require an insane amount of effort. To be fair to him, I know the prevailing outcomes he sees every day, so it's pretty easy for me to understand how that doctor might assume that we have just a constant fixation on blood glucose, but that's just not true. Leading up to college, this doctor pressed us hard, for two years, to move Andrew to a closed loop insulin pump system because, quote, "he can't do for himself what you've done for him as his parents." Now that Andrew has proven him wrong, his new pitch is we want to move you to an insulin, closed loop pump "to reduce the burden." The reality is my son doesn't want a pump. He plays highly competitive, full court basketball hours and hours, five to six days. He couldn't keep a pump on. He would destroy a pump. That's not really my point. My point is that the doctor's perception of how we achieve these results is just wrong, and I don't know how to change his mind. The truth is, managing type 1 diabetes is hard and it really doesn't even matter what management regimen you follow. Andrew shifts the hard. He shifts the hard into shopping, and cooking, and discipline, and grit, and away from the chaos that is so typical of type 1 diabetes management, and he ends up with a tremendous upside, which is normal blood sugars. So he's winning. So his hard is hard, but he wins. It's hard either way. A prevailing outcome is losing. It's a very desperate situation in the type one diabetes community.
So why am I here today? In my introductory slide, I mentioned that I have an economics degree from Florida State University and, since college, I have followed Warren Buffett. I think that the "Oracle from Omaha" has a lot of wise things to say and I've got two quotes here, from him. Firstly, "if you're in the luckiest 1% of humanity, you owe it to the rest of humanity to think about the other 99%." That's one reason that I'm here. The other thing Warren says, which I think is pertinent, is that "people will always try to stop you from doing the right thing if it is unconventional." Andrew's style of diabetes management is unconventional, and we have almost always faced push-back from his medical teams, but the method works, and Andrew is not alone. At some point, practical evidence of success should overcome dogma, and thus I share Andrew's story.
So this is conventional type 1 diabetes management. This is a brochure that we were handed at diagnosis: "A Parent/Caregivers Guide to Carbohydrate Counting for Children with Diabetes." I've boxed here the requirements for teen boys: "teen boys need 60 to 75 or more grams of carbs at each meal, and if your child is physically active he may need even more carbs." Very simple math this says teen boys need 225 grams or more of carbohydrate per day. That's more carbohydrate than my son eats in a week, and his outcomes, at this point are fairly unassailable, you know. He's an adult now! Before I leave this slide, I'd like to point out that it's sponsored by our insulin producing friends Eli Lilly.
Conventional type 1 diabetes management needs to change. Prevailing outcomes show that conventional management does not work.
So I'm going to close my presentation with what I consider to be some lost wisdom of the past. This is a quote from Dr. Elliot Joslin. It was published in June of 1923 in the American Medical Association's journal. Of course, Dr. Joslin is the founder of the Joslin Diabetes Center and he made this quote about one year after Eli Lilly first made insulin commercially available. Dr. Joslin said, "successful treatment of diabetes with insulin depends on the utilization of all those measures that have proved of the greatest value in the treatment of diabetes without insulin. These are adherence to a diet which will keep the urine sugar free, avoidance of overnutrition or extreme undernutrition, and a method of life compatible with the strength that such a diet affords. Insulin does not cure diabetes. Insulin does not allow a diabetic to eat anything he desires. It is cruel for prominent individuals to make such statements and arouse false hope." And today, the standards of care are cruel.
That's the end of my talk. Thank you very much for listening.