This year Gary Scheiner opened the first online university for people with diabetes, Type 1 University. Scheiner is a certified diabetes educator, founder of Integrated Diabetes Services and has lived with Type 1 diabetes 25 years. Lucky for us, Gary has seen, and set out to fix, the lack of critical and useful information given to most patients.
This is the ninth in my series of profiles on diabetes change leaders.
Q: What is Type 1 University, and why did you name it that, since it's for anyone who uses insulin which includes people with Type 2 diabetes?
Gary Scheiner: Type 1 University is a school of higher learning for insulin users. It offers one-hour webinars, each focused on one topic. I was going to call it "insulin-user university" but it just didn't have the same cachet.
Q: What makes Type 1 University different from other educational resources like web sites, classes, books and magazines?
GS: The biggest difference I think is that people get tremendous clinical insight they won't find elsewhere. Typically a patient goes to a diabetes class in a clinic or hospital and has to sit through a lot of stuff they already know. They might get two minutes of new information.
With Type 1 University, you sign up for a course that interests you. So if you're struggling with weight gain and need to know how you can lose some weight while taking insulin, we focus just on that. If you're an athlete having trouble controlling your blood sugar, we have a course on that.
Also we're not afraid to teach people "tricks of the trade" regarding how insulin can be used. Patients rarely hear these from their doctor.
Q: OK I'll bite, can you give me one or two tricks?
GS: One would be the use of an intra-muscular insulin injection before a sporting event. If you have extremely high glucose, maybe because your pump's not working right. An intra-muscular injection works extremely well to lower your glucose. Few endocrinologists are going to tell you that.
Another trick is in our weight loss class we teach people how to lower the amount of insulin they take without sacrificing blood sugar control. Very few doctors are going to tell you to cut your insulin back because they're afraid you might become a diabulemic.
Q: What prompted you to start Type 1 University and why focus only on people who use insulin?
GS: I've attended and presented at a lot of different webinars and I thought why are these limited to just health professionals? These would be great for educating patients. I already work with many patients remotely through the phone and internet so this was a logical next step.
As far as why concentrate on insulin, working with insulin is very difficult and few people get enough training. Most people on insulin are struggling between trying to be perfect with their diabetes and being too lax about it. It's difficult to know what is good enough when it comes to managing diabetes. I try to outline what's considered good control because people don't know. Having that kind of information that's realistic and achievable settles people's minds. You don't have to be perfect all the time, you can't be.
Q: Of the eight classes you offer which is most popular?
GS: The weight loss class and the one on pump therapy. Amazingly, most people who go on insulin pumps get very little guidance how to use them effectively.
Q: Why is that?
GS: It's labor-intensive fine-tuning doses, knowing how to count carbs correctly, knowing how to adjust for activity and use a pump's advanced features. Clinicians don't have the time to help patients learn all this so most people are winging it. In truth, the vast majority of people on pumps do not have their doses set properly.
Q: One of your specialties is helping patients work with insulin pumps. What are the advantages to using a pump?
GS: One is being able to fine-tune your basal (background) and bolus (mealtime) insulin doses. For example, you can extend mealtime insulin for slow-digesting foods. It's very hard to do that with injections unless you're going to stick a syringe in yourself and push the plunger over the next two hours. From a quality-of-life standpoint you don't have to pay as much attention to every little thing. You have more flexibility with your schedule. In fact, you don't have to worry about being on a schedule at all if your basal rates are set up properly.
Q: Are there any disadvantages to using a pump?
GS: More times than not when people go off a pump they're just not satisfied with the results and that falls squarely on the fact that they weren't well managed. The other disadvantage is having to wear it pretty much all the time except when you can temporarily disconnect. Also if something interrupts the insulin flow, because you don't have any long acting insulin in you, you can develop ketoacidosis.
Q: You also work a lot with patients on continuous glucose monitors (CGM). What's the advantage of using a CGM?
GS: CGMs help you know your blood sugar in context. Knowing your blood sugar just four times a day from finger pricks is like reading just the first page of every chapter of a book. You're missing most of the story. A CGM lets you know where you've been, where you are and where you're going. That's much more important than where you are in one specific moment in time.
Q: Can you tell me a little more about that?
GS: Let's say you're about to get behind the wheel of your car. You finger stick and you're blood sugar is 110 mg/dl (6.1 mmol/l). You think "Beautiful!" But if you look at your CGM it might show you are 110 mg/dl (6.1 mmol/l) and dropping fast. If you're about to drive or take an exam or run in a race, you need to address that you're dropping. Knowing whether your number is stable or dropping or rising fast, you'll act differently.
A CGM also helps you pick up post meal patterns. Increasingly post-meal control is taking on greater importance for preventing complications.
Q: Can you wear a CGM without wearing an insulin pump?
GS: Absolutely. We lend out CGMs to patients on multiple injections all the time to be able to fine-tune their regimen and see if a CGM is something they want to use on an on-going basis.
Q: Getting back to Type 1 University, do you find health care providers promoting it or threatened by what you're doing?
GS: It's mixed. Most are thrilled to have a resource like this to share with their patients. But some physicians, including some endocrinologists, don't like to see their patients going somewhere else for additional education. They may wonder if I'm going to teach patients something they might not want patients to know or maybe what I say will conflict with what they're teaching. I do invite any health care provider to watch a course for free to know we're giving people sensible, practical advice.
Diabetes educators are typically more willing to abdicate some of their control to get patients the education they need. They realize that they can't do everything for everybody.
Q: Do you think physicians who have diabetes offer an advantage to patients?
GS: Of course it depends on the physician, but the primary advantage is that they "get it." They know how difficult diabetes can be and they know the health care system in the U.S. is simply not equipped to take really good care of people with diabetes, especially those who are on insulin.
Q: Can you offer any advice to physicians who don't have diabetes to better understand what it's like to live with diabetes?
GS: I'd suggest something that we do to help parents understand what it's like for their children who have diabetes. We simulate diabetes for parents for a week. They wear a pump or take shots of saline, check their blood sugar, count their carbs and keep records. The only thing they don't experience is having a high or low blood sugar.
They experience the physical symptoms of doing the work, and the frustration. They get as close as they can a sense of what it's like to live with this disease. That you can't just shut it off and take a break. That diabetes is with you constantly, and there are a lot of responsibilities and work that goes into managing it -- and a lot of time you can do the right thing and not get the right results.
I think that could be an effective way to get physicians more in tune with what their patients live with. I'd also say, learn from your patients and try to get into their heads. You're not treating a disease, you're treating a person.
Q: You've had Type 1 diabetes for 25 years. What's the hardest thing for you living with diabetes?
GS: I'm such an avid exerciser and do so many different sports, it frustrates me that no two days are alike. Physical activity affects my insulin sensitivity immensely. It's very hard for me to predict how a unit of insulin is going to work for me from day to day, even sometimes from hour to hour. I have to keep myself from becoming overly perfectionistic with it.
Sometimes, too, I get a little burned out spending the better part of my day helping patients solve their diabetes issues and then I have to deal with my own. It's like the best barber having the worst hair cut because he doesn't cut his own hair.
Q: Yet you've been doing this work a long time.
GS: I get tremendous satisfaction from helping people with diabetes. When I got out of college I didn't have a clue what I wanted to do with my life. It took me five or six years to find the right field. This has given me a mission, a purpose in life. It almost makes me feel like I got diabetes for a reason, to help other people who are suffering from the same thing.
Q: Do you have any advice for people who feel burned out or need to get back on track?
GS: Learn or try something new. One of the things I really like about being in the diabetes care industry are all the toys. I just love to try all the new stuff that comes down the pipeline. I've tried every pump that's ever come out, every CGM, every meter, every insulin formulation.
I don't know that diabetes is ever going to be "fun," but you can at least keep it interesting by throwing challenges people's way and keep giving them new techniques to try out. If somebody's hit a plateau with their management, I'd say learn something new or relearn something that can get you moving again. Learn carb counting all over again as if for the first time. Which brings us back to Type 1 University, doesn't it?
Note: Gary's own pump swings back and forth between the Medtronic Revel, the Animas ping and the Omnipod, and he wears the Dexcom CGM. He also shared, while laughing, that he was born in Sugarland, Texas.
In full disclosure, I've taken one of Gary's classes at Type 1 University but was not asked to write this article.
Riva is the author of 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It and "The ABC's Of Loving Yourself With Diabetes". Visit her web site Diabetes Stories.com.