“What insulin pump should we get?” is a really common question. But it isn’t the right question, at least to start. We’re turning that around into, “If I want a pump, how should I choose one?” After all, every pump out there has devoted fans, which tells you there isn’t a bad or wrong choice. Stacey is joined by long-time diabetes advocate Melissa Lee and together they lay out what adults and parents of kids with type 1 need to think about.
This show discusses insulin pumps available in the US, but the ideas and conversation can be applied to any make and model pump on the market.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Stacey Simms 0:00
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This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:22
This week. What insulin pump should I get? You know what? That’s not really the right question. You have to start with, if I want a pump, how should I choose one? After all, every pump out there has devoted fans
Melissa Lee 0:32
And what that means is that there’s not a bad option. There are certainly options that might have a specific feature or style or might fit in with your lifestyle better, but there’s not a bad option.
Stacey Simms 0:44
That’s longtime diabetes advocate Melissa Lee, she’s talked about this issue for years. And together we lay out what adults with type one and parents of kids with type one need to think about. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I’m so glad to have you along. I am your host, Stacey Simms. And if you are new to the show, because you heard about us or saw me at Friends for Life, the virtual conference that happened last week, I am thrilled to have you here. What a great conference that was, oh, my goodness, I hope you had a chance to participate. They had so many more people because instead of being you know, in person in July in Orlando, unfortunately, they had to go online like everything else this summer. But the plus side of that was that so many more people could participate and learn about Friends for Life and learn about this community that we’ve been so fortunate to be a part of for many years. Now. This isn’t an episode about that. I won’t talk too much about it. I hope you’ve followed along on social media. And please reach out if you’d like to learn more. I’m really looking forward of course, to getting back to in person appearances, but I think Friends for Life has really set the gold standard on how to do these events virtually. It was really well done.
I’ve wanted to do an episode about choosing an insulin pump for a while I did one way back when, and I can link it up in the comments, but you have to know if you go back to it that it’s pretty dated, but it was going through all of the options at that time. And I’ve realized since then, that it’s really not about which pump, right, it’s about choosing the pump. But I know that you want to know more about the different kinds of pumps and which one people think is best. So I’m putting out a separate episode in just a few days with what I’m calling true believers, people who love the insulin pumps that they’re using right now. And that episode will have a little bit more editorial to it. This week, though, I want to talk about process, you know, beyond tubes or no tubes. There is so much more to it than that. If you even want to switch to a pump at all, which you know, you don’t have to do I hope this episode clears some things up and gives you tools that you can use going forward as you make these decisions.
Diabetes Connections is Brought to you by One Drop and getting diabetes supplies, you know, pumps, supplies, meter supplies, whatever you’re looking at. It’s a pain not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plants. Plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one they just get One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes dash connections dot com and click on the One Drop logo.
My guest this week is always terrific to talk to in fact I just had her on the show a few weeks ago. Melissa Lee is a longtime blogger and patient advocate dogs goes with type 1 diabetes at age 10. She is known for her extensive knowledge of diabetes technology and her role as a leader in the diabetes online community. She was the former tech editor of a sweet life. And that’s where I first saw our technology reviews. She also did it on her personal blog, sweetly voiced and she’ll talk about that she led diabetes hands foundation as its executive director before serving as Big Foot biomedical’s Director of Community Relations. And right now she’s leading clinical training content development at tide pool. So Melissa has worn a lot of hats and she is very careful as she speaks to let us know which hat she is wearing. But I saw Melissa do a technology presentation years ago and I thought Yes, we’ve got to have her on the show for this. Before we jump in. I gotta let you know. We do talk about insurance and your medical provider and stuff that may seem boring in the beginning here, but it really is important. I mean, who’s gonna pay for this right? What’s your provider going to talk to you about? These are things we have to really get into if you are here for tubes or no tubes skip ahead to about 20 minutes in when we do talk about, you know, active kids and active adults and tubes and pumps and the nitty-gritty of what you have to carry with you. But really don’t skip those first 20 minutes. I really do think these are topics that maybe aren’t talked about in those Facebook groups when we’re talking about pumps, but they are so important. All right, here we go. Melissa, thank you for jumping on. I’m really looking forward to this conversation. I feel like I learned something every time I talk to you. Thanks for being here.
Melissa Lee 5:31
And I will thank you so much for the invitation and for touching on this topic that so many people have questions about.
Stacey Simms 5:37
One of the reasons I wanted to talk to you, in addition to knowing you’ve done this presentation is to know that you have used a lot of different pumps, like a dozen different kinds of pumps. Is that mostly to get the experience from how do you do that?
Melissa Lee 5:50
Oh, well, that’s it’s a very good story. So I got my first pump. I was 20 years old, it was the year 2000. And there were only one or two options on the market now. I went with the one that my doctor said, well, all my patients are on this one. And it was a Medtronic, I followed a very traditional pathway, I think that many of your listeners probably follow, which is I got a pump from a company, when they released a new version or a new software upgrade, I upgraded. And I went through that process three or four times. And I stayed on Medtronic pumps for nearly eight years. And they served me very well. But what I also didn’t do during that time was, you know, I was in my 20s. First of all, I wasn’t watching the market to see what else was developing. And I would start to hear in my late 20s Oh, you know, there’s some other options. I was married to Well, you’ve had us both on the show, married to a technology guy who is an early adopter of many technologies and, and I really have to, I mean, in so many ways, I credit Kevin with a lot of things, but my husband Kevin said if you want to try something else, like your warranties up if you want to try something else, and you don’t like it, that’s okay, like let’s see what else is out there. There, and suddenly I had this. First of all, I had a husband, who had more income than I’ve had as a single teacher, but he, you know, we had good insurance and I could say, Okay, my warranties, I’m just going to see what else there is.
Now the sidebar of that conversation is that through that I found Amy Tenderich’s really amazing piece about this is this open letter to Steve Jobs that she was written about the state of technology and that launched my entire entree into the online world of diabetes, which is a whole other story, right? You know, going and finding out Okay, so what else is out there? And so I looked at some pumps that were available at the time this would have been on 2008 I looked at the Cosmo and the Animas ping was just coming to market and so I looked at these options and I started to bravely try something new and with every time you try something new, there’s this anxiety about like, Oh, God, am I gonna like this thing? You know, I’ve had eight years As Medtronic paradigm pump in my, under my belt, and that was what I knew was something else going to be good.
[And from there, I like once you make the jump once you get a little bit more bold in like, Well, okay, I didn’t die. I liked. I like things about this experience that I like things about my first experience. So again, what else is out there? And then I began to, to write up reviews of these things for other users to read, like many of us do now that I was one of the first bloggers to be writing about some of these products like I was on my blog that is now sort of frozen in time, but like so many bloggers, I would write it about, this is what I liked about it. This is what my expectations were, this is what I didn’t like about it. I would reach out to the sales reps into the company is to be like, Well, I have a question about this. And so then as I began to review, more of these pumps, fast forward, maybe four or five years, then pump companies were reaching out to me to be like Like, Hey, will you try our thing and tell us what you think of it? Would you like to do a two week trial of it? Would you like to wear it for 30 days? And, you know, I was never in a position like some folks, I was never a paid spokesperson for a pump. I was not someone who was given free pump supplies for using the product or anything. But I did get experiences with these devices. And yeah, I’ve worn something like a dozen pumps from six companies over the years.
Stacey Simms 9:26
My story, which is really Benny’s story about picking his pump way back when it’s similar to yours in that I went to our care team and said, I have a two-year-old, we’d like an insulin pump. How do we choose? You know, what do we even do and at this point in 2007, as we knew there were a few more choices back then, which is kind of sad to think about, but I let our educator kind of guide us in terms of and I said I really did say this give me the idiot-proof one that works the best, right? I just need the one that a dummy can use and clip onto a two-year-old and that will also work well for him. We went and looked and held and touched everything and decided on the Animus 2020, which then became the Animus Ping. And we went from there. But we really leaned on our educator. And I’m glad in a way that I didn’t have the amount of, I guess we’ll call it anecdotal support that there is right now. Because if bring this question to a Facebook group. Let’s face it, you’re gonna get a lot of bands for certain brands. So if the question then becomes not which pump do I use? Because we all have our personal biases, but how do I choose? You already mentioned you had a change of insurance? You had a better situation than you’d had before? Let’s start there. Let’s talk about insurance. Because not every insurer covers everything.
Melissa Lee 10:44
Yeah, absolutely. And it’s such an important point. And it’s one that we as patients and particularly if you’re in patient advocacy, like I have been, it can make you angry, but at the same time, you said something important. Every pump has its fan base, as well as its detractors. And I would say by enlarge, the fan base is huge compared to the number of detractors for every single pump product on the market. And what that means is that there’s not a bad option. There are certainly options that might have, you know, a specific feature or style or bike fit in with your lifestyle better, but there’s not a bad option. And I firmly believe that what that helps with is the if your insurance does not cover your first choice, it’s important to note that the price differential between paying out of pocket for these really high touch high tech and expensive technologies, it is probably worth it for most people to consider that if my insurance will support my use of my second or third choice. I will be in a better position to be successful on this than if I have to pay out of pocket. For my first choice, and if you have the wherewithal financially to support your use of your first choice, and it’s not on insurance then by all means, get your prescription for it and proceed. But I think that the majority of people fall into, I’m going to need support from an insurance payer to pay to support my use of this product. And that is not just the product, but also the supplies going forward. You know, if you have a situation where you have your first choice pump is maybe only available through your medical benefit through the durable medical equipment benefit, and you have a terrible plan that has only you know, 50% or less coverage of your durable medical equipment, then you might consider the choice that you could get through your pharmacy benefit because maybe for you on your insurance plan, your pharmacy benefit will cover 100% or 90%. And so, as much as we as particularly in the US value this I want to be able to choose my therapy, there’s a reality of the cost I think it’s really important to be able to say my insurance covers this pump, and this pump. And so I’m going to choose my best option from those.
Stacey Simms 13:09
And I would jump in and say 100% agree with that, that is worth a phone call for you. I know it’s a pain. I mean, we all hate dealing with the insurance companies, but it really is worth calling and double checking this yourself. We love our reps. We love our healthcare teams, but I had boy Benny’s been on an insulin pump for 13 years and there was one time when everybody assured me it was okay. And it was not and if I had called myself and gone through those hoops which think I would have realized so it’s worth calling that to double check as much of a pain that it is
Melissa Lee 13:42
well you know, and you bring up an important point because you say call myself call who you know many of us start with calling our insurance company and then we find out that they don’t even do the representative you may be talking to from your insurance company covers deals with a lot of therapies and benefits and you say insulin pump and they may be actually looking at the wrong thing, or they may have the wrong information. If you have identified I want a product from company A call Company A, because Company A actually has every single company Dexcom, Medtronic, Tandem, Insulet. They all have people that are dedicated to what’s called verification of benefits. And as soon as you give some information to these companies in terms of, here’s who I am, you don’t even necessarily need the prescription before they verify this, you can be doing that in parallel, because of course, you will need a prescription for whatever you choose. But they can be looking at your insurance plan. And they have experts on the inside who are able to look this up and say, Oh, well, actually, you could get it but we’re going to have to order it from this other company that’s closer to you because you have a thing that says you have to order within 50 miles of your zip code or Oh, we can get it but we can actually get it through the pharmacy channel. And so they can actually they have experts who do this and they have a vested interest in getting you on their product. So they’re going to work really hard to find that out
Stacey Simms 15:00
I think back to my experience, right starting that insulin pump with Benny and I needed my care team so much. I know everybody has peer groups now and online support. But I needed a device that my care team knew how to operate. And while sometimes that limits you, I do think it’s really important. I guess we can talk about the flip side of that. But let’s start by talking about that question of what does my healthcare team have experience with why that important to you?
Melissa Lee 15:27
Well, and I do want to talk about the flip side of that as well, because I’ve challenged it several times. But on the one hand, your clinicians office is probably already set up with a representative for that, for that product they use, they probably already have the software installed for that product they use, they probably already understand how to both read and analyze the data that comes off of those devices, how to change the settings, how to troubleshoot with you, as well as how to also seek their own reimbursement for it because the time that They spend evaluating the data is actually part of their fee schedule. So I do think it can be a benefit to you both in getting you on the device faster getting you on boarded to the device more smoothly, because they already have a process in place, and they have a comfort level of supporting you with it.
The flip side is, I remember when I was living in North Texas and I had this amazing endocrinologist who would just let me run out and try whatever I wanted, and she’d absorb the cost of like, whatever new software she was going to have to install, she would let me be a guinea pig. What that also meant is that if I had a bad experience on something that soured her for the rest of, you know, her patient base. If I had a good experience, without overprescribed, I felt a lot of responsibility there. But at the same time, she said she would go to conferences, and she’d be sitting at a table with nine other clinicians, and nine of them had only heard of one insulin pump brand. And so by that same token, you if you’re out here As a patient or a caregiver, and you’re doing your own research on what your options are, you may have done the right research to find the right thing for you, and your insurance will cover it. And you know, you want it and you bring it to your caretaker or to your clinician, who says, Ah, you know, sorry, I’m an all XYZ shop. And you actually may need to advocate for Will you let me try it? What are your concerns about it?
And, you know, we see that especially, and Stacy, you’ve done so many podcasts about the DIY movement and do it yourself. You know, there are certainly clinicians who haven’t heard of those options. And you may actually find yourself having to make a case for why you can be trusted to try this thing that they don’t have experience with. And there also may be the case where they say, Listen, I can’t absorb the liability of that or I can’t buy the new software that would go with that. I remember, I was the first person in my clinicians office to try the insulin pump from isanti back when they were are around and my doctor’s office had to buy a whole new piece of hardware to get the data off of my device. Like that’s an expense that I’m asking my clinicians office to absorb for one patient out of thousands. So yes, find out what your clinician has familiarity with. They may have also anecdotal, good stories and bad stories about like, Oh, well, I had great success when so and so got on that, but also, it’s okay. If they haven’t, there are ways to convince them to consider allowing you to try this.
Stacey Simms 18:32
I wonder, too. I mean, right now, there’s only unless I’m wrong. There’s only three commercially available insulin pumps in the United States. Right. So three brands, okay. That is correct. So there’s only three brands and we still hear about endocrinologist, and I think it’s mostly adult endos. But we still hear some pediatric just anecdotally, who are, I’m only this guy. I’m only going to look at that stuff. And it can be hard I think for a parent of a young child or a young adult. Who’s not used to advocating for themselves to say you? Well, I want this other one. I’m curious Lissa, someone who has advocated very well for herself. What do you do in those cases? I mean, I know what I would say. We’re pretty outspoken people.
Melissa Lee 19:13
We are and many, many books have been written about sort of the paternalism of the medical community and how it can feel like what the doctor says goes and I don’t want to challenge that I don’t feel comfortable. When I’m like, half-naked with a paper gown sitting on butcher paper, do I really feel like fighting right now with somebody in a lab coat with a stethoscope and like a kid but there may be an increase to ask of you, in order to prove yourself to this clinician about this and in terms of Do you have blood sugar logs to give them Do you have CGM data to give them Can they see the data they would need to know that they can prescribe this product that is new to them and they would get insights Back to know whether they made a good choice for you. Do you have the kind of relationship with them or like, Listen, I’ll schedule an extra phone call with you, I will prove, you know, I have this great literature I could send you and I’ve known people to sort of print off white papers and drag them into a, you know, a clinical paper, really, from a research journal and be like, Look, look, it’s a valid option for my situation. And the same holds true for if you know, especially for parents who might want off label use, like maybe your child is below the indicated age, or there’s some reason why, you know, same holds true if you’re a person with type one and you want to take a drug that’s indicated only for type two and how do you make that case often there is an ask of you that is, am I going to be able to give my glucose data and my maintenance and management visibility to this clinician so that they will prescribe this in a way that doesn’t reflect poorly on them. And if they can feel like okay, I will have the information I need on this. And I would also say it’s important to note that it’s actually likely a minority of people with type one who were treated in these facilities where they even prescribed these products, right. So let’s say you’re treated by a general practitioner, and maybe they’ve heard of an insulin pump before, but maybe they don’t even know what the brands are. And so you’re going to need to be able to put something in front of them that allows them to feel confident in prescribing,
Stacey Simms 21:30
I was going to definitely talk about documentation, because we’ve already mentioned Facebook groups, I would not recommend the Facebook group printout to bring to your endo, that’s not going to do it. And you laugh, but I know I know, sometimes that’s the end. It’s sometimes the best information. I mean, sometimes it’s the worst information, but sometimes it’s really good. But what I would recommend is, you know, find that diabetes forecast article that talks about all the pumps that are available, find the, you know, the diabetes minds to find the different comparisons that are out there, and I’ll link up A few In this episode, you have to stay current on it because things are changing. But articles like that documentation. research articles, as you mentioned can be really helpful because then they have some meat. It’s not just me going in and saying I heard about this cool thing. I want it for my son because it has a blah, blah, blah. You know, now I’m really backed up.
Melissa Lee 22:17
There are a couple of resources to use. Yes, absolutely. Like the diabetes forecast, diabetes, mind diatribe like where they’ve written about these products. But there’s also a really cool, fairly new website that some behavioral health researchers out of Stanford like Cory hood, and the Helmsley Charitable Trust in New York City put together it’s called diabetes wise.org. And you can go in and sort of say like, what am I looking for? What are my options? What’s out there? How do I choose and so some of this is actually on diabetes wise, and I think they’ve done a really nice job. I think they plan to do more with it, but I really like what they have so far. And then as well, you can go each of the websites for instance, we said in the US it’s Medtronic Tandem and Insulet each of those websites has a provider version of the website for your healthcare provider where they could go and get information as well. And you could give them that URL.
Stacey Simms 23:11
So let’s start talking a little bit more about, you know, we were at this esoteric level and then just kind of dial it in a little bit more. Because, you know, the questions that I see the most are, you know, what would you recommend for an active three year old? You don’t like there’s no, I mean, that makes me laugh all the time. Because I don’t know any three year old who’s not super active and running around. So I always want to say what’s the best pump for a chilled out? Relax three year old. Let’s talk about type of pump. I always think that somebody should really think about how they will wear an insulin pump. And I do think you don’t know until you do it, what you might like or what you don’t like. But I mean, let’s just talk about tubing for a moment because I personally feel and I’ve never worn insulin pumps. So I am a parent. I am not a person with diabetes. I feel like this seems to be much more of an issue than it actually is for most people, and that there are pros and cons of both, that most people don’t think about at all. I mean, my son, gosh, was two years old when he started a tube pump bonkers kid, you know, super active, did tons of activities, and I would say probably got his tubing caught, you know, once in a while, just as much as his friend with a pod got his pod knocked off the first month that he was wearing it. But to me the tubing, I don’t know, there’s other things to think about. There’s, you know, where on the body, you’re gonna wear it, how much real estate it takes up, you know, that’s why you have to kind of look at this stuff. And also, I’m getting in the weeds here, Melissa, but when you have a pump without tubing, right now, with the commercial availability, you need a separate controller. So these are all things to think about.
Melissa Lee 24:47
Such an important point I don’t think people have ever I’ll say honestly, I don’t think people have ever believed me that tube versus no tube doesn’t really matter. And what I will say is that That’s a yes and. And to some people, it very much matters. And you know what, even if that is only in their perception of it, I absolutely grant that that is an important perception. What I will say is that there are what I often describe as, so I started I was on a tubed pump for nine years, then I was on a tubeless pump for three years. And I was on a tubed pump for two years that I was on a tubeless a year and like, so I’ve done both, right. And, you know, I think the folks at Insulet are fantastic, but I remember early on this is more than 10 years ago and me going to them and be like, Well, why is your pump great? And they’re like it’s tubeless and I’m like what else and they like it has no tube. You know, give me I’m okay with the tube. So give me another value props and now of course they have fantastic value propositions and they market that much better, but, you know, no dig on them. But the fact of the matter is, is that we wear glasses, wedding rings, wristwatches, smartwatches, earrings, there are many things we have To our bodies, that the first time you wear them, you’re like, Okay, I’m so aware of this thing that I’m wearing. And then over time you feel naked without it, right? You know, you look down, you’re like, I just I knew something was off, I’m not wearing my ring, or I’m not wearing my watch today. And a tube on an insulin pump is very much like that. And there are athletes in every sport, wearing every brand of pump available today. And so I don’t believe that how active you are, should necessarily dictate whether you go tubed or tubeless route. I think that it’s more about your perception of tubing and there is a real negative connotation about what it means to sort of, quote be hooked up to something like and so for if you are someone who can’t like who that is a mental hurdle for your body awareness or for thinking about your child than great, you have a tubeless option, but what I would not ever say is that Having a tube is somehow limiting. Because like you say, there’s the other side of that coin of, you know, if I’m wearing my tube pump, and I don’t have my controller nearby, do I have access to do all the things I want to do? Or you know, the same thing, like just having the tubeless option make me feel like I’m freer or like, I don’t have something attached to me, or does having the tube option make me feel like it’s a lower profile, and I can tuck the thing away in my pocket. It’s like, for many people, it’s more about what your personal comfort level is. There is definitely not a huge difference in lifestyle, between a tube and a tubeless. And I think you and I are really aligned with that.
Stacey Simms 27:43
I would also add, we’ve said tubing and if you are listening and you have used the word or heard the word wire, instead of tubing, I do think it’s an important difference, because to me, it’s not a wire and wires are something completely different. And I do think that that’s a really Interesting. I don’t know how that started. I don’t know if somebody’s way back when I thought it was a wire, but it’s a tube. It’s a very thin plastic tube that if you’re my son, you can swing your pump from Please don’t do that. Why do you do that? You know, or it’s it’s but it’s very thin, it doesn’t conduct electricity. It’s not a wire. So I just kind of want to get that out.
Melissa Lee 28:20
That that makes me think one of my favorite comedians Chelsea Reiss talks about he has a joke about the bedroom and getting a cot and a ceiling fan and having it swinging around. It’s hilarious. I’ll just leave that considering I don’t know how general your user or your listener,
Stacey Simms 28:36
I appreciate that. I appreciate that. But
Melissa Lee 28:38
Yeah, so you know, there are things to think about many people when I was 20. And so my endocrinologist in the late 90s started pushing me to get a pump and I want to say that very clearly. I was pressured to get a pump. And he would say, well, all my type ones are on a pump. And I would say, Well, what does that do for me like That’s good for you. Why do I have to fall in line? And for me, I thought it for about two years. And then I was in college and I met a girl with an insulin pump. And I suddenly found that I had this series of questions that I never would have asked my older male endocrinologist in his role. They were questions like, Well, how do you sleep with it? And what do you do with it when you’re naked? And when you go to the bathroom? Like, do you have to move the tube out of the way? Like, how does that work? And do you lay on it? And does it hurt your back and like all of these questions that I needed to ask someone else who actually lived with it? So that’s where I think our groups online things like Facebook and Instagram, where you can actually see what people’s lifestyles are? and answer the question, you know, and short answers for everybody is you just deal with it. Like you just move it out of the way if you lay on it and it’s uncomfortable, you roll over, you know, you toss it in the bed next to you, you unplug for a bit like there’s lots of answers to lots of those questions but for me, but the important part was, I was being pressured to use one If I needed to speak to someone who knew what it was like to actually use it, and that was the trigger for me as soon as I met her, and I saw what her life was like, I was like, Oh, I can do this, this is no problem.
Stacey Simms 30:11
And we’re going to get to the answer of I don’t want to use a pump. And that that’s okay. Let’s talk about that. I’m gonna make a note. We’ll talk about that quote towards the end of this, but to kind of flip around the tubing question. One of the other questions I think people need to address in terms of like, how they live or how they plan to use a pump, what they think about a pump is thinking about the remote bolusing and the remote operation of the insulin pump. Because I gotta say, Man, I missed that animus Ping. Now my son is 15. So I don’t do as much with him. I mean, I never quote bolus him anymore. I mean, he does everything himself with our support. But there is something to having a toddler and not having to go over to them and take the pump out of the belt or out of the pocket and being able to just dose from across the room. Now I know and we should also talk about this, we should talk about future technology and processes and what’s to come. But I think it’s a really important thing to consider. Can you do it and be just fine? Yeah, Benny had a regular old pump that we had to touch from ages two to almost six, because that very first pump we had for four years was the animus 2020, no remote. So we bolused him in his car seat, and you know, in bed and did all that stuff. But when he was six, when we did get the remote meter, it was very freeing. And I have to say, I really liked having that. I’m glad we can, again, it’s coming for the different pumps in the future. So I’m glad about that. But I think we do have to focus on what’s available now. I thought we solicited an adult, I think of something like that. I mean, in terms of taking the pump out or wanting to remote bolus,
Melissa Lee 31:45
Yeah, that’s huge. You know, when I was working for Bigfoot biomedical, we were doing some market research in social media where we asked people like where do you wear your pump and a lot of people reported I wear it clipped to my underwear, I wear it inside my skirt and wear it in a bra. And it was a significant population wasn’t majority, but there are plenty of people who prefer to keep a device tucked away whether for their own personal discretion and their job, or maybe safety, you know, maybe they’re likely to get tubing or a pod knocked out. And so I think that there were a lot of women for instance, who preferred who really liked the Animus ping and struggled with the decision to move up to the Animas vibe because the loss of that remote bolusing One of the things that I think is, you mentioned future technologies, and with full disclosure, I currently work for tide pool and tide pool is working on a product and development that would allow you to remotely bolus from your phone like so I need to fully disclose that that is literally what I work on for my day job. That you know, I think several things have happened both the Animus product and then which was commercially available, and then In many of these DIY solutions, and then of course Insulet Omnipod with the PDM, the personal diabetes manager that allows you to, to bolus, we’ve seen that there is a market need per se, as was we’d say in marketing, like there’s a hunger for people to want to bolus with more discretion. And, you know, for those who aren’t comfortable, let’s deliver a dose of insulin at once, with this feature. And so these things are coming, you know, tandem diabetes just released an app that in future iterations they plan to include some degree of remote control. Insulet is of course iterating on their devices that allow for this, and Medtronic has put forward pipeline goals that they plan to get there and so and there are many products and development and products outside the US that allow for that remote bolusing like outside the US diableloop has that as well.
importantly though, and you said it, we have to base our decisions on what is available now and one of the things that I say With love in my heart for every sales rep I’ve ever worked for is never trust a sales rep. To tell you how soon something is coming. I remember so many adequate so many cases where people have been promised the next gen of whatever it is they use for going on 5,6,7 years. Oh, it’s coming next spring, it’s coming next spring. And the thing is, unless they can show you where they already submitted it for FDA review, it is more than a year away, right? And so and even then it might sit with the FDA for additional review for a longer period. And so unless there’s a launch date, choose from what’s available now. You can we get locked into this idea of like God, if I make a decision, I’m making this for the next four or even five years because of the warranty. Yes, you are, but you can’t base it, on hope and dreams. You have to say if I’m getting one today, these are my options. And I can guarantee you that if there’s a new option a month from now there will be at Upgrade pathway for you. But there is, you know, in many of these, all three of the companies that have stuff available today in the US have trade in options. And it might be, you know, you might not get the full value of the products with your trading, but I don’t believe that you’re stuck forever with the thing you chose. And we worry so much about buyer’s remorse. Like if I get this thing, and then the thing I really wanted comes out in two months, I’m gonna be so miserable, and there’s a pathway to get you to where you want to go. I believe that.
Stacey Simms 35:29
Another question I think people need to think about is, again, my perspective is as a parent, but it’s what do I carry on a daily basis? You know, if I’m on multiple daily injections, or I’m using a particular insulin pump, what do I already schlep around with me and am I willing to carry more or do I want to carry less and I see this not as a good parent who makes her child take full diabetes stock with him everywhere he goes, but as the terrible parent that I am, that lets him run out of the house just with His Dexcom His pump and some hopefully Smarties or Skittles in his pocket, he would not want to have to carry extra stuff with him. Now, if he goes for an overnight or if he’s gone for longer, he’s got to take pump supplies, he’s got to take a backup insulin pen, he’s got a whole kit. But just in terms of heading out for a little while, or, you know, being the 15-year old that he is he can get away with carrying less with the technology that he has. If you’ve got a teenage girl who perhaps takes a purse everywhere she goes anyway, that might not be an issue. But I do think it’s kind of important to acknowledge that real-world kind of stuff, Melissa, that’s one of the questions I urge parents to think about.
Melissa Lee 36:35
I’m smiling so big Stacey, I’m gonna put two hats on okay with my first hat. I work for a medical device software company and I’m writing the instructions for use for a future product and development. And I must say that it’s very important to note that anytime you leave your place of residence you should take glucagon glucose tabs, a full meter kit, a backup, backup cartridge or reservoir pod. Some syringes, some insulin, your mother’s maiden name like, Yes, I was really you should be prepared. And you know, I love blogger Scott Johnson talks about the caveman who lived and he talks about like, people with diabetes. We are the evolution of the caveman who lived the caveman who came out of the cave in the morning and said what do I need to do today to not die and we’re really good, especially parents of kids with type one are so good about planning for the all those eventualities. Now I’m going to take that hat way off and toss it under the bed where it can’t hear me and say that the reality is you or your child will find a way to screw this up. No matter what. You give me a pump that has batteries, I’ll run them into the ground, you give me a pump that has rechargeable battery, I will forget to recharge it. I will lose the cable you give me a pump that needs to be thrown away at the end of three days and I will let it expire and then go six hours before I remember to change it. So trust in your teenager or your child to mess this up, it’s fine, it’s going to happen. There’s no foolproof way to prepare for all of those individualities. At the same time, like you said, I feel confident leaving the house wearing only my pump and CGM, like I am, which I can look at on my phone. I choose not to carry a meter and a land set and strips and additional insulin. But I mean, I’m sure Benny has stories like this as well, that you know, there have been cases where that bites me, right. And one of my you know, I do music video parodies and one of the ones I did was about being at the office and running out of insulin and not being able to eat lunch until I go home and take care of it like these things happen. And you can just like with diabetes today, you can choose to leave your supplies at home and absorb whatever risk comes along with that. But the nice thing is, is that Yeah, you can wear your pump and leave your home and It continues to just pump along, pump right along with insulin.
Stacey Simms 39:03
But you made a great point, it doesn’t matter what brand of pump or type of pump you decide on, you are going to mess it up. And you’re going to have situations where it gets a little hairy and nine times out of 10 you’re gonna just MacGyver something and be fine, regardless of pump type.
Melissa Lee 39:19
Yeah, you know, for me, I had a situation, you know, I mentioned I was 20 when I started on an insulin pump. And just to give you an idea of what I understood about diabetes as a very bright top of my class, 20 year old I’m just gonna say I was it wasn’t completely brain dead. I was brand new to a pump. And I actually, I had, you know, as a musician, I had several gigs booked one after the other at this church where I was going to be singing for the day, and I arrived at 7am and booked until one o’clock, and I looked down and my pumps out of insulin. And I think to myself with my 20 year old brain and my knowledge of diabetes, I thought it should be fine because I used to go hours Between injections. And what I didn’t understand was the difference between how a pump delivers insulin and how my long acting insulin that I had taken at the time would have had this undercurrent of coverage for me. And so I get sicker and sicker as the day proceeds. And by about 12:15 I’m standing up in front of, you know, maybe 800 people, and I just collapsed. Just done. My blood sugar was super high, I was out of energy. I was dehydrated, just, I just decided to lay down behind the pipe organ and you just see my feet sticking out the end like I’m the Wicked Witch of the East under the house, right. And, um, you know, the organist pops up off the bench and start singing the Gloria to the congregation of Catholic parishioners and, well, you know, I learned an important lesson that day Stacy. That you know, the fact of the matter is, is that we are going to make mistakes, especially your kids and I am fortunate that I you know, I was not in DC I did not end up at the hospital, and they will learn these things as we go. And as those frontal cortexes start to develop, those things will actually be able to be applicable to how they manage their diabetes.
And I think some people and this is an important point to make about, if you’re new to pumps, some people are really afraid. Like, what if it fails? Yeah, it’s another device like sometimes my phone doesn’t power up like I want to sometimes my household robots don’t respond when I say their wake word or whatever. And like, yes, it is another device. And that is why in here and putting my industries hat on, that’s why they take a long time to get to market because so many fail-safes are put in so many considerations are made about what the risks to the users are. And that’s why you carry backup supplies and that’s why you have a backup solutions but at the same time, pumps can provide a lot of benefits for being able to kind of tweak your own care. You know, one of the things I often say in these presentations that I Do on technology is, if you are a pumper, you’re actually in the minority of people with diabetes. And even with type one, even insulin users, you’re in the minority. And so if you choose not to do it, you’re choosing the standard of care, the standard of care is that it’s perfectly appropriate. I spent my first 10 years with type one on injections. And that’s a perfectly fine way to choose to do it. A pump affords you different options. And for me at age 20, the thing that a pump did most for me, was allowed me to, like choose not to finish a meal or to have seconds or to order dessert after the fact or to graze at a buffet like for me, it was about like, it was just less hassle at meals, and that’s how it sort of started. And I liked that and I didn’t mind the body image perceptions that it might change. It was that was not an issue for me. But for others it really might be.
Stacey Simms 42:57
I think a good reminder to about pumping is it’s nothing surgically implanted. So if you change your mind, it is an expensive brick, you did use your insurance, you did go through a lot. But if you’re six months or a year in and it’s not what you want, and you prefer multiple daily injections, you can take it off, you can take a pump break, you can do what you’ve done, perhaps and tried different models, if you can figure out a way either way ensures we were able to switch once for medical necessity, we were able to talk to an endocrinologist and my son was using enormous amounts of insulin. I’ve talked about this, you know, just what he loves when I talked about puberty when he started into puberty, but he really did use a lot of insulin and the Animus didn’t hold enough. And we were able to get coverage to switch to a different pump that held more so you’re not always locked in but you’re definitely not locked into not going back to shots. And I think that you know that just to make the point that it’s okay and shot technology is improving every year. Absolutely. I think it’s worth looking at to.
Melissa Lee 43:57
You bring up another important point like we and you said this early on with when you were in your buyers process your customer journey with Benny’s first pump. Like, if you have not held that pump in your hand and pressed the buttons, then please do not buy that pump. There are representatives in your area that can meet with you from any of these companies, your CDE, your endocrinologist, somebody has a pump in a drawer somewhere. And you need to know what it’s actually like to operate it. You know, for me, and this is a weird thing. And I’ve never met anybody else who felt this way. But for me, when I was first looking at the animus ping, there was something about the refresh rate of the screen that bothered my eyes. And like that’s not something I would have known for their product literature. And I was just like, yeah, you know, it’s I don’t know, it’s weird. I don’t, there’s something I didn’t like about it.
Stacey Simms 44:43
Melissa Lee 44:44
But like if I had never pressed the buttons on it, I wouldn’t have known. There are pumps that there are people who prefer a color screen or a lighted screen or a screen that’s more visible in sunlight. You know, there’s just so many things that until you’ve held the pump played with it. It’s, it’s like driving a car without a test drive. And this is a big commitment you’re making. And I think it’s perfectly appropriate to demand that you get that pump in your hand before you order it sight unseen.
Stacey Simms 45:12
We’re getting long here, but I don’t wanna let you go without asking. You had two points that I think really are wonderful. And that is the question to ask yourself, What do I love about technology you’re currently using? and What don’t you like about what you’re using? Can you kind of touch on how to ask yourself those questions? Oh, absolutely. You know, a lot of people. And I think this is fair to assume when you see people out there, and maybe they’re bloggers or influencers, or you’ve heard their name before something and you assume that they’re out there, and they’re being paid to promote the thing that they wear and I am not that and I have no problem with that. Like I believe companies should actually seek spokespeople who live their lives with the product and can speak to the experiences they’re having. What I am, is a person who has used many of these products and I like to sort of break them apart and say these are the good things and these are the bad things and they all have good things or bad things about them. They’ve all nailed some features and failed some other ones. And so people approach me and they’re like, what pump should I get? And they think I’m going to say you should get the pump I have. And I rarely say that and said, I say, Well, what are you looking for in a pump? What do you love about the thing you use now? And often like if you told me that what you loved about the product you’re using now and it was the Animus ping and you’re like, I love that I can bolus him when he’s under the covers and I don’t have to pull this pump out then I would say well then here are your options for that. Like there are DIY things where you can do that there’s the Omnipod where you can do that and like those are the things you should go look at. And if you told me what you loved about it was what I really liked the security of a tubed pump because the way he’s been able to use it and I like the color screen then I would say oh, you should definitely go look at tandem’s TSlim line because they have those things and so you know, depending on what you like about the thing that you use, look for that feature, specifically In your next thing because you’re going to miss it terribly whatever that feature is that you love. And then the same thing. What do you hate about your current system? Like, are there too many lines on the screen? When you scroll through it? Do you hate all the confirmation screens that you have to go through? Do you hate the CGM that it pairs with? Like, what is it that you hate? Okay, we’ll look for one of the pumps that actually resolves that and talk to people and find out whether that specific thing that you hate about it resolves it because if I go into a Facebook group, and ask 3000 people what pump should I get? Everybody’s gonna say, you should get my pump and then a few people are gonna say, Oh, God, don’t get the pump I got I hate it without thinking about what your individual situation is. And so I think it’s more a case of we don’t know what questions to ask ourselves. And so we just ask it broadly, and the questions are, what am I looking for? What am I looking to resolve? With what currently bugs me? You know, I had a friend reach out to me once and she said, you know, my child uses the Omnipod. And he’s having lots of site infections with the canulas. So site changes, he was a very young child site changes have been horrible. And I was thinking about getting this other pump. And I said, Well, tell me about that more. And as she explained it, she was like, well, I thought if I got a pump that didn’t have a hardcoded expiration at this 72 or 80-hour mark, that I could leave a site in for longer and go more days in between site changes so that it wasn’t so anxiety-inducing for him. And I was like, okay, you just told me your child’s having a lot of site infections, leaving a Canula in longer to go longer in between is actually not what you’re looking for. Maybe you should stay on what you have. And it would be fine if she went the other direction, but it was what exactly are you trying to solve by changing?
Stacey Simms 48:53
Yeah, when we were looking for a pump, I knew what we were trying to do. Because Benny was fine with shots. I mean, the first two weeks, were called But after that he as long as we didn’t stop him from playing or eating, he would like stick his leg out or close arm out. He didn’t care at all. And he’s ambidextrous, which we learned at this time. So he really didn’t care. He was getting like eight shots a day we were on our endo had us on a routine where he could eat whatever he wants, and we just, you know, we bolused after and it was a routine that worked really well for us for six months. But I wanted an insulin pump because he was getting such teeny tiny doses that we were not even close. You cannot measure with your eye, a quarter unit of insulin in a syringe, at least I couldn’t. And we were really struggling with big, you know, swings because of the dosing. And working with our endo, they recommended an insulin pump for the flexibility and precision. And that made sense to me. And boy, did it make a big change when we were able to really dial in a quarter of a unit of insulin as a dose for my little guy who’s now almost six feet tall. But if you can’t answer that question, right, why do you want to get an insulin pump if the answer is because everybody else has one, put it in a drawer, think about it later come back when you really have a need. And I’d also say, Melissa, and this especially for parents is if your child is old enough and old enough means different things to different people, they really have to help decide if not totally decide.
Melissa Lee 50:17
Absolutely, it just absolutely. And I would say, if your child is old enough to talk, they’re old enough to have a say in this. And I have two children. So I know how early that starts to happen. But so my children don’t have diabetes, and they do take medication for another condition. And the fact that they take medication like that is a constant conversation I have with them about the why and how do you feel about it? And the Do you feel like it’s helping you and in these conversations that I think that we are, particularly as parents, we’re so quick to want to solve things for our kids. We’re like, oh, there’s a technology out there and it’s better than shots. So I’m gonna put this on them and Your children will do best on a therapy to which you have their buy-in. Like, if you really like that pump a has feature x and feature x is not important to them because feature y on this other pump is so much more like okay, that pump comes in pink and that’s what I care about. Like Yeah, the pump that comes in pink, then honor that because again, they’re all good options.
Stacey Simms 51:27
That’s exactly that’s a great point. It comes in pink,
Melissa Lee 51:31
But you know none of them do anymore to like now you have to get like a rubber skin right? Think about it Tandem 670 g like, there was a time you know, 10 years ago, every pump company had five or six colors that would come in and better believe I hate that. I can say that. You better believe that mattered to me. It’s like oh, you know, I like purple but I don’t like their purple.
Stacey Simms 51:53
But it’s important because it is not just something that sort of this way it’s important because think about how much stuff we do with our phones, right? We all decorate and put skins and screenshots and pop sockets. It’s the same thing with an insulin pump. You know, some people don’t care at all. But some people, if I were insulin pump, I would have different things for every day of the week. I mean, I get it. And my son used to care a lot more, we had different skins and he had pink and he had purple and camo. And now like I said, he just got makes me crazy just shoves in this pocket. So let’s go from one, one kind of extreme, which is might, you know, pink to another. We mentioned earlier, don’t buy anything, don’t make decisions on future promises. But I do think it’s important to listen to talk about the most recent stuff, and by the time this comes out, something else might have been improved, who knows. But the software, the inner workings of these pumps is changing. And thankfully, it’s changing at a pace that we hadn’t seen in the previous 10 years. And I think it makes it almost more difficult to figure out what to get right because somebody might really want a tubeless pump, but then they see that and I you know I am guilty of this too talking about how much I Love control IQ, which is only with the Tandem right now. And there’s DIY stuff, which, you know, I’m very vocal about this. I love all the DIY people, but we have never used a DIY system. It’s not something I’m comfortable with. So what’s your advice for people who are just kind of intimidated or thinking about the different software systems now?
Melissa Lee 53:18
Sure. It’s such an important question, I think. So it’s only been and it’s funny to those of us who are in the thick of this, especially myself, I’ve been in industry now for four years. It five years it’s been a while there is this. We’re in the very, very infancy stages of automation of insulin dosing. And so for years, this was a promise we were going to get there commercially. And now we have two systems commercially available. We have a third system, the one from Insulet, coming just out of clinical trials, so we can expect that we’ll probably see it go to FDA in the near term. So there is this now it’s not just get a pump. And a pump is a different way to take insulin, which that was my standard line for many, many years. It’s just a different way to take insulin. It’s an electronic syringe. To now it’s actually dosing you for you. It’s actually it has some degree of intelligence, that is changing your doses, without your say, right. And so now it’s like, well, now there’s this whole, like, Is it a quality of life upgrade if I get this product? Or now what if I, I don’t understand how to read like this algorithm? First of all, what does algorithm mean? And this one has an algorithm that does this, and this one has an algorithm that does this, and I don’t know like, it could be green could be purple. I don’t know how to, like, I don’t know, I don’t care, too, which I will say, as someone who has had to write extensive documents about these algorithms and such. I will quote my dear friend, Lane Despereaux, who says all these algorithms work. They’re all the same. It’s I mean, they’re not, but they are. They all work. If it’s coming to market, it’s been deemed safe to use. And you have, there are tiny, tiny details where if you are the person who cares about those incremental details, you probably are the person who actually understands those incremental details like, you know, how will it drive me to a target glucose? And how do they do it differently from one another. And the fact of the matter is, they both do it. And so the goal of any of these systems is to try to keep you at a glucose level that’s safe for you. And they do them differently. But they all do it. They’re all fine. And if you are trying to get into the nitty gritty, you’re going to hear people’s success stories and you’re going to hear people’s horror stories, but they don’t live your life. And there is no one out there who is the exact like copy of who you are with your situation and your child’s situation, to know whether or not the experience they have is experience. You’re going to have And to that end, you know, your, your doctor may have some information on these, do you really want to go through and read the clinical trial data? Would you understand it? If you did? And what would you actually extract from that that was important to you? And this is one of the things that I see in the sort of, you know, and I love my DIY brother in like, that’s a cut my teeth in DIY in many ways, and but like if we’re just going to slice up people’s algorithms to try to decide which one’s going to get you to a 6.5 instead of a 6.6. A1C, like, Is that what you care about? If that is what you care about? Go forth and slice, slice those algorithms read those white papers, that’s fine. But what do you actually care about? And when you ask that of people, they’re often going to tell you, I care about whether I can think about it less. Right. Okay, so what details about this system are going to tell you whether anything about that lesson or not. And it may be well, you know, my sister’s kid has one and she really likes it. Okay, so great. Does your insurance cover it? Go forth? Yep. And that, if I’m trying to choose between a, like a Toyota rav4 and a Honda CRV, like I can get down into the nuts and bolts of the horsepower. And I’m gonna say a lot of words, I don’t understand, you’re gonna notice I’m maybe, like, what is the torque? I don’t even know what torque is. But you know what I mean? Like right? If you’re the type of person that cares about that, then great. Do you need to care about that for your insulin pump system? Or just really like the red one?
Stacey Simms 57:29
Like, there’s also and there are a lot of people who will choose between those two vehicles on what’s the safety rating and how close we live to the dealership? Yeah, right. You know, there’s all sorts of different ways to choose these things, knowing that they all work really well. And then you’re just talking I think a car is a great analogy.
Melissa Lee 57:45
It is, well you know, you either want that middle row seat or you want the extra cupholders. So which one is most important to you? sign the form and send it away and then don’t freak out that you made the wrong decision because all decisions can be unmade. You can always go back to the thing you were doing before, you can always find a way out. And I say that even acknowledging the privilege that I have. And I do want to make that clear, like I have a privilege to be able to afford a different pump. If I, if I really wanted one and whined enough to my husband, he would be like, fine, fine. But the same thing is just like with a car. Okay, so you may have to drive it for a while. It’s not the right thing. You can’t Well, I can’t say you can sell it because it’s a prescription medical device. But you know, there are ways through this. And I think we get really caught up on whether or not we’re making the right decision. And it may just be that there is not a wrong decision. And whatever you make is likely the right decision for you.
Stacey Simms 58:43
Melissa, thank you so much. We could definitely talk for another hour about this, but I think we’ve covered at least the first go-round as best we can. But I really appreciate you spending so much time with me. Thank you. It’s
Melissa Lee 58:54
always lovely to talk to you, Stacy. And I hope that this can help people. At least take a breath And they’ll still post but yeah, but should I get that and that’s fine, that’s fine. It’s okay to ask.
You’re listening to Diabetes Connections with Stacey Simms.
Stacey Simms 59:20
I’m so sad to know there aren’t pink pumps anymore. I didn’t even think about that. It was so important when Benny was little I mean he wanted the blue pump but then we got a bunch of skins and covers that he could change it to whatever he wanted to and Animus had great colors right that was part of their marketing all those that rainbow color scheme of different pumps. Oh my goodness, I guess it you know, you can bring out whatever you want. Any option of pump can be blown out. That’s, that’s not really what I was going for. Any option of pump on the market right now can be decorated any way you want. Please go ahead and share this episode. Yes, it was a long interview, but there is a transcript. And I do think this is a really important topic. That gets kind of skimmed over when people say, just this pump, or just that pump, or I love this one, or I hate that one, or should I even get a pump, and that bonus episode is coming with those true believers. Those super fans who do love the pumps that they use Diabetes Connections is brought to you by Dexcom. And it is hard to think of something that’s changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it helps us talk less about diabetes. It really is so wonderful. It’s so great about sharing follow as a caregiver, a parent, a spouse, you know, a friend, whatever, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow a separate follow app is required. learn more, go to Diabetes connections.com and click on the Dexcom logo.
I mentioned Friends for Life at the beginning of the show, I need to let you know and I’ve put this in a Facebook group and elsewhere on social media but just so you know, I’m doing a special promo code for the world’s worst diabetes mom for my book, if you order it from my website from Diabetes connections.com, use the promo code ffl2020. And you’re going to see $4 off the cover price. This is a pretty big discount. I don’t think I’ve done a discount like this. Since we launched the book last summer at Friends for Life. We did a pre-sale a couple of months before the book came out. And this is a big one. So it’s $4 off promo code is f f l 2020. Of course, it’s always available at Amazon and Barnes and Noble and target. There’s an E-book and the paperback book and the audiobook. That’s all over the place. But I wanted to make sure to let you know about the discount and the promo code for Friends for Life. All right, bonus episode coming in just a couple of days on those true believers in the pumps that they love and then back to our regular Tuesday drop if all goes well, I’m Stacey Simms. Until then be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.