Anne L. Peters, MD, CDE: Hi, I'm Dr. Anne Peters, Director of the Clinical Diabetes Programs at the University of Southern California. I am in San Diego for the annual meeting of the American Diabetes Association (ADA), and I invited Amy Tenderich to talk with me about current issues in patient care. Amy is the founder of a well-known Website, DiabetesMine, which is a valuable resource for many members of the diabetes community.
Amy has type 1 diabetes herself and has a personal perspective, as well as considerable expertise in the field. Welcome, Amy.
Amy L. Tenderich: Thank you for having me.
Dr. Peters: First, I have loved your Website for years. I have been one of your biggest fans. I think it's great, and I often refer patients there because I think you have really practical commonsense advice, and you are willing to talk about what is hard as well as what is not hard in managing diabetes. Why don't you start out by telling us: What are your biggest challenges, and if you could run the world of research, what would you have us do to help you better deal with type 1 diabetes?
Ms. Tenderich: The biggest challenge, from a personal perspective, is just the day-to-day [struggle with] it. What I try to bring as a patient advocate, even to an event like this, is the perspective of real life with diabetes: the fact that medicine and treatment are just one part of the equation. The actual coping and living with it every day of your life for the rest of your life is a huge part of the equation for outcomes -- how people are going to do. How comfortable are devices to wear? How practical are they for real life? I don't think that enough attention has been paid to these things in the past, and that's definitely something that we try to bring, both in the innovation contest that we run on the Website, and in our writing. Now that the patient advocates are getting a little more organized and we have a group of diabetes patient advocates who do similar work as myself, we're trying to get together and lobby for that recognition: the psychological side, the social side, and the logistical side of living with this illness. It's a huge portion and has so much to do with how compliant or noncompliant people are.
Dr. Peters: As a clinician, that's one of the hardest parts; we have patients who just can't find the time, or don't want to find the time, or whatever it is, but it's very hard sometimes to get people motivated to help themselves. From my perspective, all I want to do is help them get better, so the psychological barriers can be really tough.
Ms. Tenderich: To me, that is where peer support comes in and can be very powerful. When I was first diagnosed, I went to this doctor who gave me a list of things that I needed to do and thought: "You have to be kidding me; do people really do this every single day for the rest of their lives?" It was everything from carrying around all of this equipment, and keeping it cool and safe, to having to think ahead about all of the things that normal people can do spontaneously -- we cannot. If you're going to be a little more active, take the stairs instead of the elevator, or have an extra snack or an extra cup of coffee, all of those things will, with type 1 diabetes, have an impact on your day and your care over time, and it is very difficult to stay on it and to be motivated to do it right all of the time. Sometimes we need a reality check to be able to communicate with other people and vent a little bit or talk about situations, such as: "What did you do; how do you carry your stuff when you travel?" That's the kind of information that doctors and other healthcare providers really can't provide. They don't have time and they don't really have the perspective; it's not necessarily their role, so I think we're building this new role of patient mentors and showing how powerful it is for the community to come together. We're lucky that this condition is manageable, but managing it is a very difficult thing to do, and if you wanted to do it perfectly, you would have no life because you would just focus on that.
Dr. Peters: Yes, it takes a tremendous amount of time. As a physician, it's really hard because I really can't tell patients what to do every second of every day with every blood sugar in every situation. I have to give them some advice, and yet, real life is much different.
Ms. Tenderich: Right.
Dr. Peters: I totally sympathize, and I love what you're doing to try to make it easier. In terms of the ADA national meeting, what did you learn, or what did you see that really makes you think that things are going to change in the next few years?
A Patient's Perspective of the ADA Meeting
Ms. Tenderich: I've been coming to this meeting for several years now. I believe that I was the first blogger to infiltrate the scientific sessions and be here and report on it from the patient's perspective, and it is kind of overwhelming. On the one hand, it is really encouraging to see that there are so many companies putting so many resources into it, and yet at the same time, so much of what's going on seems so removed from that real-life aspect of diabetes, and the expectations of what patients are going to do seem very unrealistic at times.
Even today, on the show floor a lot of exciting stuff is on the horizon, but unfortunately a lot of things are still in the holding pen because of the US Food and Drug Administration (FDA). We hear about some product that was released in Europe, and we think, "Oh, that's so cool; I would love to have that functionality," and it may be years until it comes here, so that's a little frustrating. I was talking to a colleague who looked around and said, "You know what the problem is with a lot of these products that they are offering? They are not designed by diabetics." And I said, "You know, that's what we've been shouting about for years."
I come from the world of computer technology, and consumer technology in the past. I look at the Apple products, such as the iPad, and how fantastically miniaturized and personalizable they are, and so I have made it my advocacy campaign to say, "These things should be designed more for life, and patients should be involved in the design process at an earlier point to talk about what's practical and not practical in some of these things." That's everything from a finger-stick meter, to a pump, to some of these diet aids, and so forth. You need to be realistic about people's lives. Some of the logging programs really expect a ton of manual data entry. That's just another burden for patients. You must make it easier; don't make it harder.
Dr. Peters: Yes, I can't imagine putting all that data in. They are great ideas, but some of them make it very hard to live with. One of the things that I tell my patients every time something hits the news that diabetes is cured (it's always in a mouse, and there are about a thousand ways to cure diabetes in a mouse) is: "Unless it gets to a species closer to humans, I am not going to focus too much on it." In terms of what seems to be coming for patients, the notion of these artificial pancreas devices, not the ones that are completely artificial because then you're going to be wearing 16 different pieces, but the ones like the system that turns off overnight if you go too low: Does that kind of system interest you?
Ms. Tenderich: Absolutely. We are frustrated that that system is not yet approved in the United States because apparently the FDA is concerned obviously about safety, but they are concerned that the unit would alarm repeatedly, and it would only shut off for a short period of time after it has alarmed and you haven't responded to that alarm. That's a safer mechanism than something that is continuously delivering insulin of which I could easily overdose on insulin -- that's a risk right there. Insulin is a risky drug to use because you know as well as anyone that you can make mistakes quite easily and it could be very dangerous, so weighing the risks and the benefit is really important. All of us believe that connecting the glucose readings with the insulin delivery in a better way, and automating it, is going to be a huge step forward.
Burdened by Data Logging
A couple of years ago at the ADA meeting, all the buzz was about data visualization, and all the companies were showing these fancy graphs and pie charts as well as all of the amazing things that you could do with the data. My thought was, "That's great for a bunch of engineers." In the last year or two, I've seen more of a turn toward, and a focus on, helping patients interpret the data to understand what it means, identify trends, and even in some cases algorithms that would make recommendations. You might want to use a temp basal; you might want to change your background program -- that kind of thing. That's where the data are useful for us. They seem to think that the holy grail is all of this detailed logging, and nobody really wants to log. The logging is just to help you hopefully make better decisions going forward. So anything that simplifies that for us would be huge, as well as for doctors. That must be so much data for you to review; I don't know how you really have time to do that.
Dr. Peters: When you give patients the opportunity to download data, they don't tend to do it. I don't know exactly why; it may be because the graphical displays aren't helpful.
Ms. Tenderich: It's because it's another burden -- another thing to deal with. Most people are busy just trying to live their lives and manage their diabetes on an hour-by-hour basis. Unless I'm getting something immediately valuable out of all that data work -- and a lot of us do it for a while -- you just get burned out.
Dr. Peters: Let's argue that the devices that download, by and large, aren't going to be downloaded a lot by most routine patients. Let's say that the burden is when people come to the physician's office and the physician, or somebody in the office, should actually download the data. I can barely function in the absence of data to download. I am a data geek, and I actually have the opposite problem. I want every single day, every single bit of data for the last couple of weeks, and I analyze each piece. I do it every day, all day, so I'm really used to looking at patterns. My problem is that I don't want any technology that messes with my brain because I'm used to it.
For most people, having a system that says, "there's a signal here that basal insulin isn't right," or "there's a signal here that mealtime insulin doses aren't correct," and then working with patients would be beneficial. It's not just the physician and patients, but especially in type 1 diabetes, it's working with registered dietitians or educators. A lot of other people should be involved in the management of diabetes. I jokingly say that "Everybody should switch doctors every 5 years." It's not because I think that we go down in skillset, but because a new person give you a new perspective, and diabetes can get monotonous and like drudgery, and a new perspective can actually help.
Ms. Tenderich: It's always drudgery, but what happens is that your needs change, and that's what's so frustrating. Suddenly nothing makes sense anymore, and you hit those points, and it's super frustrating. I think you are the exception rather than the rule, that you actually demand that data, are willing to take the time, are able to take the time to go through and dig out those trends and talk to patients about it, but many patients don't have that experience, or they just aren't able to go and see their doctors that often, or they don't have that much time with their doctors. They would benefit greatly from a data program that helped them make some sense of their own data.
Dr. Peters: So you would trust a program?
Ms. Tenderich: I'm not saying that I would make a clinical decision off of it, but if it's going to give me a tip about, "You're running high in the mornings after breakfast," then at least that's something I can look at. I can say, "Okay, I realize now that maybe those waffles for breakfast weren't the best idea," or, "They're really having an effect; I need to take more insulin." It would be something that tips me off to trends rather than having to wait with reams of data and go in and hopefully talk to someone who's going to help me.
Dr. Peters: Right.
Ms. Tenderich: I could see it as being extremely helpful. The other thing is, just the interoperability of these programs, being able to have different medical data programs that integrate. Obviously looking only at glucose data, you want to get all sides of the equation. It's a complex disease, so you want to be able to see what you dosed; you want to be able to see the glucose and keep records of food. We haven't found that perfect balance yet for how to make all of this logging useful and not too burdensome.
Dr. Peters: It's because there are so many variables.
Ms. Tenderich: There are so many variables.
Dr. Peters: This is not simple. I have always wanted to have a tiny camera in people's heads so that I could watch exactly what they eat and what they're doing so I can figure out the insulin because it's so complicated. Even if you logged almost perfectly but you went out to dinner -- who knows what was in the food.
The Diabetic Superstar
Ms. Tenderich: Logging has its limits -- that's the other thing. A lot of the technology companies talk about logging as though it was the holy grail and it's going to do everything, but you don't usually have logs about whether you felt sick that day, stayed up too late, felt tired, or you walked up and down the stairs a few extra times. There are so many variables; for women, their cycles can affect their blood glucose. This is what we're up against; this is what I'm saying; we have to be these superstars who do everything in moderation: We eat better than everyone else; exercise more than everyone else; take all of these medications exactly as prescribed; use all of these devices and carry them with us; take all of these safety measures; and wear our identification. It's a tall order to be a really good diabetic. When creating new treatments, people should think in terms of themselves; don't think of the patients but think, "What if it were me? What if I had to do this and carry all of this stuff around? Would I be willing to use this product on a regular basis, or are the alarms going to drive me crazy because they're waking me up all night?" You need to bring that reality to it. There is also a social side, a psychological side, of just not getting down. Knowing the long-term consequences of this illness is very depressing, and in many cases, people are good and they still develop some of the bad consequences.
Dr. Peters: You can't call it good because that means that there's a bad.
Ms. Tenderich: Thank you.
Dr. Peters: There is no bad diabetic; it just doesn't exist to me. Some people have a harder time, whereas others have an easier time dealing with this. Some people are more successful, whereas others are less successful. However, anyone who has this, I have tremendous respect for -- no matter what their friggin' A1c is -- because this is tough.
Ms. Tenderich: Thank you; it is tough, and it is associated with a lot of guilt. I get funny looks all the time if I test, and people look and say, "Oh, that's a little out of range; isn't it?" I just want to slap them, even as I say, "Well, actually, I just ate a really big lunch so that's actually a pretty good number right now." But people, even physicians in some cases, are not educated. They think that that single glucose number has something to say about your control, and it's just a little snapshot in time. You have no idea what the person just did. There is so much frustration and a lot of guilt internally because with type 2 diabetes, people feel that they have brought it on themselves, but with type 1 diabetes, you just feel like, "I'm not doing good enough." You just feel guilty that you're not doing everything you should 100% of the time. You get a lot of judgmental reactions from, unfortunately, a lot of healthcare providers and from people who don't know and just assume that you are supposed to do "A" and "B" will always happen.
You are supposed to eat right and make sure that you use your little meter, and you're always going to get a really good number. There is a lot of ignorance. This is actually a big theme for patients because we have internalized it, and we have to eradicate those feelings. It was hard for someone like me. I'm kind of a control freak and want to do everything exactly right. No matter how hard I work at it, I have to realize that "Okay, it's not a failure; if I get a high number or I have a day when my numbers are not in the range that I want them to be, it's not a judgment about me completely failing." I always wanted to get good grades and do a really great job, and everything I write has to have a certain quality level, but you can't always control everything in diabetes. In fact, most of the time you can't, so it's a matter of letting go a little and being able to be comfortable with yourself, and as much as you can do, and find that middle ground where you don't drive yourself crazy.
I don't think that there is enough recognition of that. I was happy to see that this year at the ADA sessions, some things on the behavioral track that were talked about included peer support and the social environment. We need a lot more recognition about that because, no matter how good these tools get, you can't just hand them to people and assume that they're going to go off and get the most fantastic outcomes and do everything perfectly because there are so many other factors.
Dr. Peters: It's pretty difficult. I just want to point out that I think you're doing a phenomenal job in all ways, and I really hope that people go to your Website. I found it really helpful, even for me, because you bring up things that I might not otherwise know about because I don't have to wear these devices. I really appreciate what you're doing for me, for patients, for everybody, so thank you.
Ms. Tenderich: Thank you. We appreciate doctors like you -- believe me; it really makes the world a better place for everyone with diabetes, so thank you.
Dr. Peters: We try. This has been Dr. Anne Peters speaking from San Diego at the ADA national meetings for Medscape. Thank you.
Medscape Diabetes © 2011
Cite this: Anne L. Peters, Amy L. Tenderich. Real Life With Diabetes: What Clinicians Need to Hear - Medscape - Jul 06, 2011.