This past summer my daughter, Bisi, who has Type 1 diabetes, and I were hanging out on the beach on Block Island when she spotted a man walking by with an Omnipod on his arm.
“Mom, that man has diabetes; he’s wearing an Omnipod.”
“Do you want to go talk to him?” I asked her. She shook her head.
“Do you want me to go talk to him?” Clearly she did. So I walked up to him and introduced myself. We got into a conversation, and he told me about his work helping athletes with type 1 maintain stable blood sugar levels while exercising. I later looked him up on Google, and realized that the man we’d met, Cliff Scherb, is a big deal in the diabetes world—for his own accomplishments as an athlete, and for his work helping others try to solve the difficulties of exercising with Type 1 diabetes.
Scherb has raced in hundreds of triathlons, including 18 at the Ironman distance (2.4 mile swim, 112 mile bike ride, followed by a full marathon). His time of 9 hours 7 minutes for the race was the second fastest ever for someone with Type 1; and he set the record for the fastest half Ironman by someone with Type 1. But he was only able to achieve these elite times after he started managing his diabetes in a proactive rather than reactive way: figuring out how much he needed to turn down his basal rate before and during a race; measuring the carbs, protein, and fat he ate, and their effect on his body; and figuring out exactly what he needed to eat and when. Scherb coaches (both people with and without diabetes) through his company TriStar Athletes, and also has founded Glucose Advisors and the related Web app Engine1, a decision support system that gives people “turn by turn” instructions for how many carbs they need to eat, and when to eat them, to maintain an in-range blood sugar while exercising. (Scherb is hoping that at some point Engine1 will be able to recommend changes in insulin dosage, but it is more complicated to gain approval for that from the FDA.)
Scherb and I spoke by phone a couple months after we met, and talked about his work to solve the diabetes-exercise conundrum for himself—and for others.
What was your path to founding Glucose Advisors/Engine1?
It started from a really young age, as I tried to figure out how to be active all the time and not have to worry about being low. I experienced tremendous lows, tremendous swings, and a tremendous frustration level that no doctor could help me. That’s what I was doing with my whole life.
The lucky sport I chose was triathlon, which allowed me to study [exercise and its effect on blood glucose level] in a way no one ever had before. Other sports are more frenetic, your heart rate is up and down. But triathlon is steady state exercise; it’s easier to figure out what’s causing what.
I started going through data over time and saw certain patterns, and built algorithms off of that to create a structured decision support system. Part of it was a lifetime of not accepting that I had a disease where you’re not going to know what’s going to happen. Physiology can be complex, but it can be somewhat harnessed. Our goal is for people to be in a range between 80-120, even during athletic activity. We want a normal blood sugar range.
But I will tell you in my early twenties, it took a lot of crash and burn to figure these things out. Every time I had a work out, it was a learning experience.
What was diabetes management like for you when you first started doing Ironmans?
For my first ironman I had a glucose tester attached to my wrist, and the lancet exposed while I was running, so I could test on the move; there were no CGMs then. For the first five or six years I would carry 2,000 calories of liquid glucose in a backpack; I would place multiple cans of Ensure all over the course; I was just petrified. After that I dialed in the amount of insulin necessary. Every time I did the race I would jot down all the data, how much insulin on board, how much food, and I came up with these rates.
In the beginning the management was a lot more reactive. Now everything I do is completely proactive. The amount of insulin on board is the most important thing. If I have a certain amount of insulin on board, I won’t even think about doing anything athletic.
I’ve read that when you first started out coaching other athletes you didn’t let people know you had Type 1 diabetes. Why didn’t you let them know, and what changed?
I wanted them to know me as Cliff, not as the Type 1 diabetic. When I first started TriStar, I wasn’t sure how my condition would be received. I was working with clients who were not Type 1, and I worried that they would think I had a limitation. But once I got those records, I felt like I had earned the right to say, “I think I’m pretty decent.” At that point I felt like now people would say: If you can do what you did and you’re a Type 1, then I want you as my coach.
How carefully do you pay attention to nutrition, for yourself or for the athletes you coach?
The nutrition side of things is very important when it comes to sports. Whether you’re a weekend warrior or a professional athlete, nutrition always can help you perform better. There’s mastery because I had to be obsessive about it, cataloguing everything I ate for years. I had this big huge spreadsheet the length of my room, and it was color coded so I could see trends. If they’re nondiabetic, giving nutrition advice is a piece of cake.
What were some insights you realized once you started looking at the data carefully?
Number 1, I got a pump. For the first half of my career I didn’t have a pump, and I was a slave to Lantus; I couldn’t quantify things nearly as accurately. Once I got a pump [the Omnipod], my recovery time went down really quickly. I used to have to wake up at 3 am to give myself insulin, because I’d had to eat so much while exercising to keep my blood sugar up. Now I go for a 19-mile run with only one gel. It takes some preplanning, which is why I created a whole decision support system. It’s regulated by the number of hours you’ve exercised over the last 48 hours. And that’s what I teach my athletes.
So essentially when you were doing Ironmans you were burning so much energy that you needed to be able to do a temporary basal to shut off your insulin? Is this an issue for people in sports less intense than long-distance racing?
Everyone tends to focus on insulin on board (IOB). But when you’re pumping in basal, that has a huge impact on what you’re going to do. When I start a race, the ratio might be 1 unit covers twenty grams. By end of the race, one unit now covers 60 grams. If the basal rate is locked in at 1 unit per hour, by evening you have to eat sixty grams of carbs just for that unit alone. The frustration of managing these swings has confounded people for years. I remember thinking, You never know [what your blood sugar’s going to be], it’s like fate. But as I got into the mastery aspect of it, being active basically every day, sometimes two to three times a day, I started to realize that there are very controllable things. For instance, there are a lot of basal rates that are not appropriate; they’re covering for meal times or they’re not. I try to think of it as three separate windows: pre activity, during, and after. For the first 30 minutes of activity I suggest a 50-60 percent reduction in basal and then reduce it to zero.
It seems like your system gives people back control.
That’s exactly right—there’s no good education in this. When you go to your doctor and they manage your insulin for you, it’s like them telling you that you should have turned right at the stop sign a hundred miles ago. It’s not their fault; it’s the nature of diabetes. This way there’s a proactive approach to it. If you aspire to it you can do it.
I work with doctors all the time on this. I’m not a doctor, but I have more experience with diabetes and exercise than anyone I’ve met. Part of the reason I created the app was because I was getting overwhelmed with questions about how to manage diabetes and exercise.
You’ve said in DiabetesMine that the tricky balance of diabetes-food-nutrition-exercise effects is “the last frontier that hasn’t yet been conquered.” Why does this still remain as a frontier?
Not enough research dollars have been dedicated, because it’s just not that lucrative. But every time I’ve gone to give a presentation, I ask the room how many people think exercise is important, and everyone wants to be active. I believe the pump could be a lot better [in terms of supporting people when they’re active]. I would love to have a basal pattern where you could preset different temporary basals—like a 50% decrease for an hour, then basal turned off for an hour. But there’s not a whole lot of reason to innovate for these guys.
How would you recommend using Engine1 for kids, who are a little less predictable in terms of their level of athletic intensity, their hormone levels (whether they’re growing), and their ability (and desire) to plan ahead?
It’s a tricky time for kids, especially the teenage years, but just being focused on putting this information into the system gives them more control. It’s the compliance side of things that is tricky. This is generation 1 of the product. My goal is to get the system in an environment where people don’t really have to think about it. For some this will be groundbreaking, but then a whole other group will feel like it’s too much information to fill in every day. But in the near future we can bank on Bluetooth being more pervasive; Dexcom has things in the pipeline so we can get real time CGM info; at some point I hope we can get insulin information streamed in from the pump company, then you just have to enter in the food. You want to ease the burden.
A lot of Type 1s are very active and they recognize that activity is what makes their blood sugars better, and then there are some people who are afraid to do it. I hope this app benefits a lot of people.
What development in the diabetes world has changed your life the most?
I would say the pump. Just having a pump is such a lease on life if you’re a Type 1. With the pump, both my A1Cs and my recovery time between races improved. My first experience with the pump was that I got the Omnipod, then got on the plane the next day to do the Ironman in Arizona; that was my 2nd fastest race ever.
What potential development are you following the most closely?
All the closed loop systems; the partnership between Dexcom and Omnipod. I’m excited by Tidepool and their work [a company that helps people consolidate their diabetes data into a more easily readable form]; it’s such a necessary thing and it’s so hard what they’re doing. There’s a very real problem: there are all these different devices and none of them can talk to each other. Recording insulin levels manually off the screen is very frustrating. I hope Tidepool forces the market to open up and allows Engine1 to live.
You told DiabetesMine: “Really, these trends don’t fit any mathematical model I know of, because it depends so much on a person’s physiology and doesn’t allow you to fit people into a particular box.” What does that mean in terms of technologies like the artificial pancreas and bionic pancreas? Will the algorithms running those technologies be adequately personalized?
I think they will get very good with delivery, but they will still have a problem with exercise and activity. I hear from a lot of people who have tried certain closed loops that they don’t work as well once you take it out in the real world. The pump has no brain attached to it. It’s not smart enough to know when to cut down basal. It doesn’t know when you’re going to be extremely active, or whether you ate a pizza or you ate nothing. It doesn’t know stomach absorption rates. We’ve also programmed in protein and fat, since they raise blood sugar over time, so they have to be factored in. All the closed loops are reactive. Hopefully our app will fit in nicely with that ecosystem.
I know that Engine1 launched pretty recently. Have you gotten responses from people who have started using it? How are you planning to develop the app going forward?
This was beta tested for a long time; the reactions were great. We spent a lot of time squashing any bugs. Now it’s getting the word out. There are so many apps for diabetes that it’s hard to not get swallowed up. That’s why we call it a real-time decision system—there’s nothing like that.
I’ve read that you are “as analytical as a scientist when it comes to his blood glucose.” Is that just the type of person you are, or did diabetes nudge you in that direction?
I think I am a driven person, and I like to do things passionately and intensively. But if I hadn’t been diabetic I wouldn’t have done it to this degree. It was borderline obsession. The analytical part comes into play. Every time I would try something different with insulin or nutrition, I would perform better. Sometimes I would be left in the dust by people without diabetes, and that was very motivating. You can’t commission a study like this, where you go push yourself as hard as you can for 10-12 years, try every food combination you can, then try what you’ve learned on 150 people. No one else has really solved the riddle. It’s my hobby and my passion; I’ve put my job and my passion together to help other people.
What advice would you have for someone on MDI? I can’t turn down my basal rate because I take one Lantus injection per day. Not everyone can afford a pump.
You could split your Lantus dose into 2 or 3 doses a day and decrease according to your blood sugar. Gotta experiment!