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Diabetes Connections with Stacey Simms Type 1 Diabetes

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Now displaying: 2019
Dec 31, 2019

Tandem's Control-IQ system was approved by the US FDA in mid-December. In this episode, Stacey talks to Molly McElwey Malloy, Tandem's clinical outcomes manager with behavioral sciences.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Control-IQ technology is an advanced hybrid closed-loop system that uses an algorithm to automatically adjust insulin in response to predicted glucose levels to help increase time in the American Diabetes Association-recommended target range (70-180 mg/dL).*

Check out Tandem's YouTube channel, featuring new videos about Control IQ

Join the Diabetes Connections Facebook Group!

This is our last episode of 2019! Stay tuned for new sponsors, new segments and new weekly mini-episodes.

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To use Control-IQ, you must have the Tandem t:slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump.. it does not require a purchase of new hardware.. no new pump needed. You do need to have a prescription from you doctor.

If you are an in-warranty customer the Control IQ update s free. All software updates released through 2020 are free to in-warranty t:slim X2 users. It doesn’t matter when you choose to download the update. The no-cost is determined by our release date, not your download date.

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Episode transcription (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors)

(Time codes listed refer to times within the interview, which starts 5:30 into the episode)

Transcript:

This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom. Real life stories of parenting a child with Type One Diabetes, available now as eBook paperback and audio book, Learn more at diabetes dash connections.com Welcome to our last episode of 2019 and it's a big one all about Control IQ the new hybrid closed loop system from Tandem recently approved by the FDA. I'm talking with Molly McElwee Malloy from Tandem. And I'm going to try to keep this intro short. I know you all just want the information. But I do have a few housekeeping and other things to get to. You can always skip ahead if you wish, I will not be insulted.

But first while my regular podcast listeners insulted first when things like this happen when there is a Big news in the community. We get a lot of new listeners. So I want to go through some basics first. Hi, I'm your host, I'm Stacey Simms. My son was diagnosed 13 years ago, right before he turned two. He is now freshman in high school. He is 15. And boy, time has really flown. My husband lives with type two diabetes, I don't have diabetes. I have a background in broadcasting, local radio and TV news. And that is how you get the podcast. We are four and a half years into this podcast. We have more than 260 episodes. So I would encourage you to head on over to diabetes dash connections. com If you're brand new, scroll through. There's a very robust search feature. So if you want to type in Tandem and see what we've done over the years leading up to this release, or any other topic pertinent to diabetes, you can go ahead and do that it's very easy to search through. It's very easy to search through, and everything you'd want to know about the podcast, including how to subscribe for free on whatever app you want to use. Joining the Facebook group all about me, it's all there on the website.

Okay, let's talk about Control IQ. What is it? Control IQ technology is an advanced hybrid closed loop system. It is the software within the pump. It uses an algorithm to automatically adjust insulin in response to predicted glucose levels. So we're going to talk about that to help increase time in range. Time in range and the recommended target range is 70 to 180. And yes for the International listeners we have quite a few. This is a USA centric episode Control IQ is rolling out in the US. We will be staying up to date on when it is available in the rest of the world where Tandem is already in your marketplace. But this is a USA centric episode so when you hear us talking about numbers, that's the system that we're using.

For Control IQ you must have the Tandem t slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump. It does not require a purchase of new hardware, no new pump is needed. You do need to have a prescription from your doctor and you will hear more about that if you are an warranty customer, the Control IQ update will be free. All software updates released through the end of 2020 are free to in warranty t slim X to users. It doesn't matter when you choose to download the update. The no cost is determined by Tandems release date, not your download date as we're right at the beginning of 2020. That probably doesn't matter to most of you listening but I think it's important to point out.

Control IQ is FDA approved for those 14 and up. It is not a replacement for diabetes management. And it is not a cure. It is not a cure. There is so much information about this online already from Tandem. I will be linking up a lot of stuff on the episode web page. They have YouTube videos. There's so many features that we don't even get to in this interview. I mean, the tubing fill, you can now set that to vibrate so it doesn't beep when you fill the tubing and change the cartridge which I know Benny just so excited about but in this interview, we really just scratched the surface. So please know I will be doing follow ups and there's a lot of supplemental information on the website.

Quick note about Molly McElwee Malloy, who I'm talking to from Tandem, she was diagnosed 22 years ago this week as a young adult. And as you will hear, being in an artificial pancreas trial, changed her life. It changed her career path, everything. And she is one of many, many people who has been with this project for a very long time. We do spend the first four minutes of this interview on that subject on who Molly is and getting to this point. And if you're dying to get Control IQ info, again, go ahead and skip ahead. But I think her story is an important part of all of this and I think it sets up all the information very well.

One more thing. There will be a full transcription available for this interview. A lot of you have been asking for that. That's a new feature I'm making available for the podcast in 2020. So stay tuned on that for every episode, but this transcript will be right on that episode web page. The best way to read it go to diabetes dash connections. com scroll down and click on this interview to open it up. All right here is my interview with Tandems, Molly McElwee Malloy,

Stacey Simms 0:01
Molly, thank you so much for joining me. I can only imagine how busy you are and how full your inbox is.

Molly McElwee Malloy 0:08
It's a really exciting time. For sure. Absolutely. No doubt.

Stacey Simms 0:15
Well, congratulations. We're very excited. I mean, personally and professionally. I can't wait to talk to you about this. So let's just jump right in. I do have to ask you though, for people who may not be familiar, tell me a little bit about your background because Boy, you have been with this project. Really, I want to say almost since day one, tell me about your involvement with what has led to Control IQ for Tandem.

Molly McElwee Malloy 0:39
So I'm, I'm sort of what you would call like the obsessed fan who went rogue. So I, I was in an artificial pancreas prior in 2006. And full disclosure, because no surprise to anybody who knows me but I have a bit of OCD. And for me, that was manifesting is testing my blood sugar 30 times a day. Wow. And yeah, it was really out of Control. Or as most, you know, endocrinologist say, I was a perfect patient with zero Mental Health Quality, but life like it definitely was impacting my quality of life. But I participated in one of these trials. And it was, you know four IVs and somebody at your bedside for 32 hours and the whole nine yards, but for me, it was life changing that for a period of time, I could relax for the first time and just let somebody else take Control. And everything was fine. And I sort of just realized that deep breath at that time was exactly what I needed. And I and I was like, Well, I'm going to do whatever it takes to work on this project. So you know, at the time, I was a professional musician, which makes getting into science..

Stacey Simms 2:05
Be vert interesting,

Molly McElwee Malloy 2:06
Just a super, super easy transition (laughs). As logical obviously, as you've spent your life, being a musician that makes sense to just go into science. So I went back to school for nursing and continued to participate in trials through nursing school. And then when I graduated they hired me on at the Center for diabetes technology at the University of Virginia, which is where all of this magic was taking place. And I have not looked back. So they hired me in 2010 have been acquainted with the algorithms since 2006 as a patient, and here we are, it's almost 2020 it's 2019. And it's finally getting to market so I've done that and I worked with a startup called Type Zero technologies, which commercialized The algorithm licensed it the Tandem diabetes care. And then I jumped over to Tandem to pursue commercializing the algorithm. So, a little bit of like a dog with a bone, go and fill it out. But it was sort of my glimpse at sanity. Like, this is what sanity, this is what my life could look like with diabetes. If something was managing it in the background, I was really only worried about the big things. And I saw that and I was like, that is exactly what I will do. That's what I'm gonna be doing. I will do this all the time until it gets there. And it is. It's been a very long journey. very rewarding journey. Very difficult journey, but to be here today, wearing the device is magical.

Stacey Simms 3:54
Okay, I'm gonna stop you there. I could talk to you for a long time about the process. But as you listen, I know you want to get to Control IQ. So I will just say, I've talked to Molly a couple of times before and I will link up the other episodes because the background on this, as you mentioned, type zero, you know how Tandem came to have that software, the development of all this, it's really important. And it's really interesting to listen to. So I will link those episodes up. But let's talk about Control IQ, so many questions. What are the what are the first steps? What's going on right now.

Molly McElwee Malloy 4:27
So because of this all happening right around holidays, what we're doing with him doing kind of behind the scenes and, you know, as we speak up through the beginning, or first two weeks of January is we're educating the whole you know, diabetes educator and endo workforce, getting everybody up to date, getting everybody ready, making sure we're on the same page. So that when you go to your endocrinologist and say I want this you know that customer, they are well informed of what's going on. So all of that's been going on in the scenes like, you know, just earlier today I was on the phone with 10 different doctors trying to make sure that we all understood everything. So we're, we're educating as fast and as seriously as we can. We have an excellent online training program.
So you as a customer, if you are current X2 user base, like you are just x to the end user will get an email, and I believe it's the first the second week of January way of January 13. That week, you'll get an email saying, hey, go ahead and login, update your information, make sure everything correct when you get the prescription will, you know will we talk to your doctor and will help you if you're an existing customer with we have that information kind of fully loaded, ready to go. You could also log into the portal, the customer portal and you know, go ahead and start that process. I'm interested, I want this and talk to your doctor. That's all that's one place. It is super easy scripts with your doctor that gets loaded. It's an automatic process. Once we have that, if you've already got that, like a blanket prescription from your providers practice is already going with us and we're trying to initiate that next two weeks. That's already there, we will automatically check on the background and then it will, you know, provide us with going ahead and giving you the green light to issue the next email which will be your training is ready.
And then you will do the online training. And it will give you the ability to learn all about Control IQ. It's very interactive, you can't hit play and walk off. I know people do this on other training like I know we have webinars and we push play and we walk off we do the dishes when we come back. You cannot do that with this. It actually won’t advance to the next part until you've done x, y, z that is asked you to do. We've designed that for a reason so that you actually come away with the knowledge you need to operate the the algorithm and integrated into your life. So then you will answer a couple of questions and take a quiz. And you will have had to pay attention to get this information correct. And if you don't, you can go back and re learn until you do answer the questions correctly. Once you do pass the quiz and the module, you will then get the download code which is specific to your serial number of your pump.
So I know there's been some questions, people sharing about work arounds, can you share it? The answer is no, no. You can't share it. It is your learning and your code is specific to your serial number. So all of that lines up perfectly to allow you to download the software update. And that will be, you know, everything will walk, walk through all the steps and pretty obvious, but for those who think that this some idea that someone will get a code and then we could post it on the internet somewhere and share it like, sorry Debbie Downer you're gonna have to get this on your own. Like, we work smarter than that and the FDA is smarter than that, and they're not gonna allow one code to rule them all. Yeah, so everybody's gonna have to do this upon their own and because it requires a prescription you have to go through all this stuff.

Stacey Simms 8:37
When you mentioned training healthcare providers, and this might be a really dumb question, Molly, so forgive me, but is do they go through a more in depth training? It just seems like a couple of weeks to try to get all of these endocrinologists and CDs on board is a tall task. Do they all have to be trained before they can write the prescriptions and then what is their training like

Molly McElwee Malloy 8:59
this have to be trained before they can write the prescriptions we want them to be trained before, obviously, we'd like them to have knowledge before they write the prescription, but they don't, they need the training to be able to treat patients, right. And I want them to be we want them all to be informed before they write the prescription to know if this is a good choice for the patient. But you could always write the prescription and then the person doesn't do the update. Right. So there's, you know, there's, there's always a couple ways to be kept it at the end if they don't intend to write the prescription. But writing the prescription with knowledge is always excellent. And we want to be aware, it's really, you know, an hour and a half two hours of their time. It's not a whole day thing. I know with other systems, there's been some feedback about like the links of training being really long and and we took all that into consideration. You know, we got the beautiful gift of not having to go first. Right? So we got to see what happens with the market with feedback before we did it. And we implemented a training and the good news with Control IQ is, it's not difficult. You do have to understand some concepts and some differences. Right, but it's not hard.

Stacey Simms 10:27
I guess my concern was that people would be calling their health care providers and saying, Are you trained? Are you trained? Did you do this yet? Because you could see that happening.

Molly McElwee Malloy 10:35
Yeah, and the good news is that we're getting them trained. So and it's on there's an online module they can take to do this. Like it doesn't have to be me on the phone with somebody train them, although we are doing that for them for larger offices that need, you know, to have that interaction, but there is an online module that they can take to get trained. So we do have a provider but site that has been launched. We've been very patient centric and very patient forward and our website and our outreach, and we are adding new dimension to both Tandem and our website, and how we are looking at our business. So, you know, to be honest, when you do this business, there's, there's at least three customers you're looking at, right? There's a patient, there's the provider, and there's the payer, and all those things need to be addressed. And we've been very patient centric. And now we are and we are continuing that we're just expanding to be very have people that are actually focused on providers. And so there is a portion of our website now dedicated to health care providers, and their education and resources specific to them. So that is launched that is up and running, and it's actually a very elegant website a host of resources for healthcare provider.

Stacey Simms 12:10
Alright, so let's get to the moment at hand - Control IQ. How does it work? Talk to me a little bit about you know, the pump settings or what do we have to do you? What is the? What is the basis of Control iQ?

Molly McElwee Malloy 12:24
Yeah, so this is the beautiful thing and I love all things that are based in science reality and truth, right? Like, I don't like we and Tandem doesn’t like this either, but we don't like you know, don't let trick and we don't like you not be able to see what's going on. So the beautiful thing about Control like you would like about all of Tandem technology is that it stays in the science and the foundation that you know in love, which are pump settings that you already understand. So the traditional rules that healthcare providers have used and I can provide you a link to article that’s helpful on you know 15 and 1800 you know, rules that they've always used and you know, implement duration action that is built in on the foundation of many many many decades of science. So, the all of that I can provide you some links and educate people about that what does that mean but your traditional insulin to carb ratio, sensitivity factors and basal rates all still apply. We use that the Control IQ technology uses your pump foundations and your foundations order the basal rate into the carb ratio, correction factor to operate from right so those are specific to you, they always have them they always should be. And that is where we you know, we start the game of Control IQ technology. So Using those settings, Control IQ technology, what we making adjustments from your baseline parameter, so your baseline parameters are exceptionally informative of how Control it technology will work.

Stacey Simms 14:12
So we've been using a pump, let's say, you know, our personal case for 12 and a half years, we're pretty good at the settings. You know, we're going to talk about insulin on board because that's an interesting change. But we have our ratios and our, you know, our sensitivity factor. People like us, you know, a lot of people who are used to changing things on their own, you're basically saying we're not gonna have to learn to use the pump that we know so well.

Molly McElwee Malloy 14:38
Correct. Right. So all the settings that you know and love are great. And you will move forward with those right? Okay, people coming from other systems, like maybe different pump or multiple daily injections, things like that. You're going to want to establish some really good baseline settings and make sure that those are accurate. So you particularly, if you're coming, I could say you're coming from a competitor's product like that, that has automated insulin delivery, you want to make sure that those settings are good to go. Because the previous, you know, previous other things that you may have used, only altered on board and carb ratio, right. So if you're only pulling two levers, the other things may not be totally, you know, set in stone and based and in the reality that you need. So, moving forward, you will need to make sure that the patient has, you know, your patient which would be your son or myself, that user has the pump parameters and settings that are based in

in what you would want to use.

So somebody is moving from a different product. We just want to do a double check and there's going to be in the healthcare profession. We'll have a little checklist to go through and we'll ask them, you know, you're coming from a different product, please look at the baseline settings and make sure that they are perfect for the patient. In your situation, you're just going to be moving from you know, base like you to Control like you. And those settings will apply. I will say a note for your super super savvy listeners who have used Basal IQ. And something we've noticed just in real world data as we've looked at people who data people have up to their basal rate to allow for, you know, like you to go to be like suspend, resume, suspend, resume and kind of hug that line at 80. A lot of people have done that. And I want to talk to that community real quick and say, Look, I know what you did with Basal IQ with riding those basal rates high to hug that line at 80. I saw that we saw that. You did that. We know why you did that. Just look at them. One more time before Control IQ because Control IQ is going to be adding, right? It can add insulin. So just before you go on your merry way with Control IQ like you double check your baseline settings, are they where you want them to be before you go right knowing that a system can add insulin to it.

Stacey Simms 17:20
Okay, so you mentioned a lot of people, a lot of my listeners like to ride that 80.

Molly McElwee Malloy 17:27
Let's talk about people, man, a lot of people love that they want like, they want that super, super tight Control and I get it. I totally get it. But you got particular, you know, space of listeners needs to be open to the idea that we're now going to be adding insulin right? So if you've kind of made these aggressive pump settings with Basal IQ and now you're going to be just on your merry way. We don't want you to experience hypoglycemia, right? That, you know, we don't want to put anybody into hypoglycemia land. My personal least favorite experience of, of diabetes? Well, let's, let's not do that.

Stacey Simms 18:10
Right. But the question then is, what are the targets? I thought Control IQ wasn't really going to let you ride that 80. Can you talk a little bit about I mean, obviously, nothing's perfect hypoglycemia can happen hyperglycemia can happen, but what is it aiming for?

Molly McElwee Malloy 18:29
If your listeners can pull up the little chart, the patient pamphlets that I that I gave you, there's one of them that has a really good visual of what that looks like. And just so that we can go from soup to nuts, the person who has now downloaded Control IQ technology, all you have to do is turn it on. It’s either on or off. Just to preface all of this before we get into target and all of that. There's no kick out with Control IQ technology. Control IQ technology works, so long as we have CGM. And I will say that as long as we have a continuous stream of CGM, or we will continue processing that data. But if there are 20 minutes or more of missing data from that CGM and those who are very savvy with Dexcom know that you can kind of get internet readings occasionally. I'm not talking about reading, you've got a loss of CGM for more than 20 minutes, we're going to revert to your pump settings. And so we can get that until we can get that information back up and running. But if we miss a value or two when we come back, and we've got that information, we're running full steam ahead We're good to go. If we have any data point in that 20 minutes that pops up, you're still in. It are still in the game. They're still playing. But there's no kick out. Right?

Stacey Simms 20:14
So as you mentioned that, just to be clear, there's no auto mode or manual mode to kick out of. So if you lose the CGM signal for that period of time, as you said, What did you say 20 minutes.

Molly McElwee Malloy 20:26
It has to be greater than 20 minutes

Stacey Simms 20:28
if you lose CGM signal for 20 minutes, it just goes back to regular Tandem pump, all the settings are in it. When the signal comes back, it automatically starts Control IQ, you don't have to do anything else.

Molly McElwee Malloy 20:40
Correct. You could sleep through the whole process, right? You do you right. Like if we lose it, we'll we'll get it back as soon as possible. We're going to alert you that there’s no CGM available, right? Right. We're gonna alert you that this happening. But if you're sleeping or you're doing something else and you are not paying attention to it, we’re going to keep running with the ball in that process without having to like all these bells and whistles, and there's no modes, right? Control IQ is on or you can turn Control IQ off. There's no mode.

Stacey Simms 21:16
Alright, so let's talk targets.

Molly McElwee Malloy 21:19
Yes. So there are several targets, the one you will call the main target is the number 112.5 which in the pump, it's going to default to 110. Why because you don't have 112 point fie as an option. 112.5 for those who are interested is a weighted average between 80-120 with the least amount of hypoglycemic outcome. So if you're a statistician or mathematician and you love numbers you can a bunch of scenarios of hypoglycemia and when it will likely going to happen in all these different situations which is what did happen to come up with this number you would come up that 112.5 had the least amount of hypoglycemic outcomes in the greatest amount of time in range and you know successful euglycemia. Yeah, so 12.5 it is. And it will show up as 110 in the settings 110 will be the target. In the settings that you set up for Control IQ it is non-negotiable. We have different ranges for things that we're using throughout the way the system progresses, but as far as looks on the settings on the pump, is going to show up as 110.
Now when you enter the system, as long as you're in euglycemia land, like as long as you're in range and predicting range, which would be predicting 70 to 180, we’ll use your pump, right your pump study should be adequate. But the minute your predicted to be outside of the range. And this is where this graphic is really helpful. If you’re predicted to be 70, right, less than 70, we're going to start decreasing basal insulin. It's predicted when you start going below 112.5 right. And then when you get to 70, we're going to stop basal delivery. And this is during this time, right? So the during regular Controller to you, if you are predicted to be less than 70, you start going down less than 112.5 we're going to decrease basal, and we'll eventually halt basal. Now if you're above 112 point five and you're heading up, and you're predicted to be above 160, we're going to increase that insulin delivery and increase that in the background until you hit a prediction of 180 and that's not you hitting 180. That's the prediction heading 180. If the prediction hits 180 then we can give an automatic correction bolus once an hour during waking time and I'll go over more about what that means in a minute.
But predictions to be above 180 one at if there was, you know, not been another bolus in the last hour, we can give one at that point to try to keep blood sugar more in range. So the range 70-180 again, 112.5 is euglycemia. Going below that, you know, we start decreasing if you're predicting below the lower than 70 we're going to, you know, stop basal insulin delivery, you’re predicted to be above 160, we're going to be increasing basal insulin delivery of your predicted to be above 180. We're going to deliver an automatic correction bolus once an hour during the waking time. And by that I mean when you're not using exercise or sleep. There's three activities in Control IQ and they are Control IQ or what I call wake time. There's sleep and there's exercise. And those three things have three different targets. Because if you think about it, those three activities have very different applications for your blood glucose. So, waking time 70 to 180. That's sort of where we aim for all things during the day to accommodate for blood glucose fluctuations with meals and stress and schedules and everything like that. Sleep is something you program. So you can have just like you would program a basal rate. So if your basal rate normally changed from three to 4pm, every day… the sleep is, you can program that right. So mine is programmed for 10pm to 6am. So from 10pm to 6am I'm sleeping and it will automatically go into sleep, it will automatically come out of sleep. I don't have to do anything. And during sleep, we're going to target 112.5 to 120 which is a much tighter range, but we're not giving automatic correction boluses during sleep,

Stacey Simms 26:02
can you tell me a little bit about the thinking there? It seems obvious. But is it just because a person is sleeping and can’t adjust the pump? I'm trying to figure out the logic?

Molly McElwee Malloy 26:14
The logic of not having the autocorrection? So the logic around not having the autocorrection overnight is about being super conservative with the FDA and their comfort level . But also, the algorithm really drives a really tight range during that time because there's not a lot of interference, right? You think about sleep it's like for blood glucose is the easiest time to manage diabetes, right? because nothing's happening. Although you are asleep, so technically difficult because the operator is asleep, right but as far as what's happening with diabetes, sleep should be a pretty steady state. So if we can automate going into and out of and having a really timeframes for that period of time, then we can kind of optimize time in range by, you know, six hours a day being really tightly Controlled, or however long the sleep activity is. And we noticed in the in the clinical trial, those people who had a sleep schedule and not everybody did, and you do not have to set one. But those people who had a sleep schedule had significantly more time in range. So that's just something to notice. No, you don't have to set one right? Could you have automatic corrections going all night long and being awake, I'm sure you could do that. If that that's how your diabetes works. Great. My diabetes, your diabetes, somebody else's diabetes, they're all going to be different, right? We all have different versions of how we metabolize things and how we sleep and how we process and our activity and you know, sometimes, you know, the sky's blue and sometimes it's not and it just depends. That's life with diabetes, some things will work with some people, somethings won’t.
We did have in the clinical trial have some people we refer to as Sleeping Beauties who had sleep going 24 hours a day and and that would put you at the you know, like the 112.5 to 120 all the time, no automatic corrections but you would get basal increases and basal decreases to try to keep you in that range. And for some people, that's great. You know, that's where you want to live, that's fine. You will not get the automatic correction, you will need to give that correction when you need it. It's not going to be enough to accommodate that. But hey, if you're sleeping beauty and that works for you, that's fine.
Then there is exercise. Exercises is a button you press. You go into options you press exercise – start. I'm exercising now and then I will leave it on exercise and when I want to stop I will go in and I will stop exercise. And while I'm exercising will be a little Running Man on the side of the screen to show me that I am exercising. And that will tighten the reins to 140 to 160. To help prevent hypoglycemia, it also engages what we call the brakes or the prevention of hypoglycemia by 10x. So if you think of a car rolling down a hill, and if you think of getting your brakes tightened 10 X, the minute you start going downhill, you're going to stop, right? It's going to be like that, stop, it's gonna be really, really grippy. And that's the way it works doing exercise. We anticipate hypoglycemia. Now you can still get an automatic correction bolus, and you can still get an increase in basal during exercise because there are people who will go high during exercise. With the pediatric sports particularly, you notice a big difference between game day and practice day. Like game day there's a lot of adrenaline there's usually a lot higher blood sugars and practices it’s low blood sugars. So You know, this is why that's still going on in the background, starting in an hour before starting at the time of exercise, leaving it on an hour after all of that's going to vary depending upon the person and the activity and you're going to have to play with that and see what works for you. You know different strokes for different folks. And some people won’t need to put on the exercise right they'll be fine where they are. It just depends on what you're doing your body, your diabetes, what's going on. And as to when you start it and when you stop it or if you use it. Likewise, you know you could put exercise on 24 hours a day if you wanted to, if you needed to ride a little bit higher or you know were feeling very cautious about something you know, and you want it to be, driving all day or something you know, like I just want to be a little bit higher today

Stacey Simms 30:53
Your kids first sleep over

Molly McElwee Malloy 30:55
your kids first sleep over and you want that automatic bolus, they're going to snack. And, you know, if you think about it, like if I think about my kids there, they are active 24 hours a day until they crash, right? So if they're super, super active, and I'm getting, I'm getting frequent lows from that activity, I might put them in exercise all day, right? So depending on what's going on with that patient that time and what works for you, they'll be different. They'll be different reasons why different activities are better for some people than other people and when you want to use them, but they're all available to you to use as you want to because we all deserve choice, and we all should have Control over what happens with our diabetes.

Stacey Simms 31:43
It's really interesting. Okay, I'm trying to get through the list because I have I have 14 questions for everything you answer. So I know we'll talk again, but I do want to ask you about insulin on board and I will set this up by saying in the last few months, I've been reading up a lot on this in anticipation of what we're going to talk about here, because Benny's insulin on board, which is as you listen, you may not realize there's a setting in the pump, all pumps, where you try to figure out how long the insulin that you're giving is lasting, and this is with MDI as well, but the pump does it automatically - you have to tell it and then it keeps track. So we have always said Benny's at three hours. And then when he hit puberty, we kind of tightened it up. And I've learned that it really didn't matter what we said, or what we thought that everybody's insulin on board, studies show, is about five hours. And so that's what's in Control IQ?

Molly McElwee Malloy 32:40
Yeah, it's at five hours. So if you look at some data, and again, I can provide you with links to some published data on that, the data says it's between four and a half and six hours. So let's split the difference and call it five hours. So we're using five hours for several reasons. One it’s established data we can rely, on you can hang your hat on it. Also, it's a static number, right? So if you are, if you are trying to aim for targets with a multitude of patients, a multitude of patients and you're trying to automate an algorithm, you cannot then vary IOB without causing some pretty crazy ripples, right? So it's going to work for some people, some people not, we want something that works for most people, right? Like, I understand that Control IQ is an amazing solution for a lot of people. And if some people are like, I'm so much better when I do it myself. Do it yourself. That's fine, right? Like that's why we have choice. But in order to design a system for the masses, you're going to have to go with the large majority of scientific evidence, right, which again, shows insulin on board somewhere between four and a half and six hours. So going with five hours and keeping that static when you're aiming for different ranges, and you're allowing people to do different basal rates and carb ratios and sensitivity factors, you will have to lock something in and we've locked IOB. And that gives you some really good results, obviously, but and for skeptics, I will say this, you know, try it. Try it and see what you think. Because it may not be as different as you think.

Stacey Simms 34:27
well, I’ve been shocked to find out that the entire looping community, and the do it yourself folks, all of those systems are based on five hours, pretty much.

Molly McElwee Malloy 34:37
Right, right. And you do have to assume some, you have to make some assumptions, right when you're writing an algorithm that's going to modulate insulin for the masses. And one of the assumptions is how long does this thing last? If you change that, all the other math has to change. And that makes it a very unstable algorithm. A very unstable system. And then it’s not for the masses, right? So that is why it's locked in and there's a lot of scientific evidence. And the DIY community has embraced us too, you know, at that five hour time frame.

Stacey Simms 35:13
In terms of the rollout Molly, I remember when we got Benny's pump about a year before Basal IQ was available. And as I was looking back, it was a pretty seamless process for us. In that I remember it was FDA approved. We got the email, we got the prescription from our doctor then Tandem said here's your code, and we downloaded it and the whole process took from FDA approval to on Benny’s pump, with no special treatment, was 35 days. I'm not going to hold you to that. I'm not asking you to keep to schedule, but I am going to ask and I think 35 days was pretty great. Is there anything that you all learned from the Basal IQ roll out that people who went through that can expect to experience differently this time around or did it work pretty smoothly?

Molly McElwee Malloy 36:00
Yeah, so I mean, you always learn, right? You always learn, and we're always learning and Tandem is excellent at collecting data and then understanding, you know, and learning from it. So one of the things that we did, we did learn there is that we needed a more robust patient portal. And so we've done that we've built a more robust portal, and we've built a lot of automation in the background. So doing things like if you entered, you know, I'm going to update this and your physician had a blanket statement on board. And, you know, we could automatically line those two things up. It doesn't have to be a separate step it just automatically Yes. Okay, you're good. We have this checked in our records checking. We have this and this is on file, and we can do all of it. So there wasn't a lot of automation that there is now and there were maybe a couple extra steps involved in getting people either approved or making sure we had all the documents and we've streamlined all that. So it should be a very seamless process. The update itself could take eight minutes, but it shouldn't take much longer. You know, it's the eight minutes from, you know, whatever you're on now the Control IQ, and then you know, and then just reschedule it and doing the online training right before that, that's, you know, a little bit of chunk of time, but I think 35 days is pretty good. So we got approval this past Friday 13th. And we plan to roll out those emails to existing customers a week of the 13th. So it might be coming at close, but I think you can probably you could probably figure on the 35 days.

Stacey Simms 37:43
(laughs) I'll give you some grace for the holidays. I mean, the last approval was August, so we only had to worry about back to school. I'm not too worried about 35 on the dot. I did want to ask you a couple of questions from the Facebook group, the diabetes connections Facebook group, you've answered a lot of them, but I had a really good question from Tim who was asking about in the clinical trial, he said, You know, people were able to familiarize themselves with the pump in the system about two to eight weeks, I guess. So he said, what took place during that period? And how much interaction with healthcare professionals was required? So I guess the question really is, how much do I need to interact with my healthcare professional? How much do I need to ramp up and learn before Control IQ will work well for me, we've mentioned you know, there are variables.

Molly McElwee Malloy 38:29
So I think, and I think looking at that run-in phase, that was what it was called that two to eight weeks is that when you were taking people from multiple daily injections, introducing them to CGM technology, introducing them to pump technology and getting pump settings straight. So that was the longer run in period for people who were completely naive to both CGM and pump technology. And they could they could be allowed up to eight weeks, I don't think most of them completed their run-in phase much faster than that. And most people have people that already had pump or CGM or some knowledge of one or the other could go but at a much faster speed. So it was just getting them up and running and comfortable with the technology and the physician or whoever was overseeing at that site felt comfortable that, yes, this person is ready to proceed to the next step and go ahead and use an automated system. So that just allowed for all walks of life to come in and to do this trial. And that's really what that was about as far is, you know, how many connections how many touch points with an HCP. You know, I can't speak specifically to each situation. But typically, in a run-in phase when you're getting people up and running that have never used technology before, you might check in with them every couple of days and then do a download at the end of the week and then check those settings. So And I would suggest at a later time you having one of those sites, the principal investigators on to talk about the studies it’s fascinating. And they could really get into the weeds of these details, because I think Tim had a really good question about that. As far as the average person though, getting up and rolling, the big thing with Control IQ technology, is you have to have good pump settings. Right. So that may be a couple of touch points you maybe have to have with your HCP if you've never had a pump before, right? Or you're and you're just waiting for the first time. Or if you've had pretty poor settings, and maybe pretty poor Control along and you've never really sat and been like, Huh, I wonder if these are right, or your HCPs never sat down with you into like, let's take another look at this. That that may take you a visit or two but if your pump things are pretty good, you should be fine to go And then you can check in with your doctor. At your comfort level, right, like there's no recommendation. As long as you feel like you're doing well, then great.
There is a mobile app that will roll out with this. It's embedded into the technology update for Control IQ that will give people access to this mobile app, which will be available on Android and iOS. But this will allow for automatic uploads to the cloud. So the data will be going seamlessly to the cloud. You could also then see it on your phone. You cannot yet bolus from that phone or dismiss alerts or alarms. But you can see what is happening from that phone. And it will, it's a ways to send data to the portal so that your data is always updated. And so you know, your healthcare provider can check in and say how you doing and I see this is happening or I see that's happening and you can all beon the same page without actually, we go into the office or upload your pump or any of that stuff. Yeah, I believe it that process.

Stacey Simms 42:08
That was going to be my next question. But my understanding is that the phone app is going to be just for healthcare providers as it's rolled out, and then consumers can use it down the road. Is that not correct?

Molly McElwee Malloy 42:19
No. So there are two parts to this. So the app will be on the patient's phone, right. That's how the data gets the cloud. So the space is going to have visibility to their data. The data going to the cloud goes to the HCP portal, right. So that's the healthcare professional portal, the portal that we offer up to professionals so they can manage all their patients in one place. Right. So they log in, they can see data as long as you have Wi Fi available Wi Fi is both publicly and people having it at home or you can choose to use cellular data. You can send your data for the cloud every five minutes.

Stacey Simms 43:04
I just want to be clear. So when I get my Control IQ, let's say, let's say I get Control IQ by the end of January, when I get Control IQ on Benny's pump, he will be able to look at his cell phone, not do anything with it, but he will be able to view his pump data in real time on his cell phone.
Molly McElwee Malloy
Yes.

Stacey Simms
Yeah, that is amazing. Okay, so I know that many people who are newer might think, well, that's not so amazing. But I mean, after 13 years, you know, we had these dumb pumps and no CGM to have Benny be able to look at his phone and say oh is was my battery charged. Do I need insulin? You know, even the simplest things. And then the idea is down the line. And maybe you can give us a peek into the future. As you said, You can't bolus from it, but possibly someday, soon.

Molly McElwee Malloy 43:50
Oh, we are working on integrating the ability to do a mobile bolus. Yes.

Stacey Simms 43:58
All right. I'll leave that there for now because I know Talk to you another hour about it. But then my last question on the phone is, what about remote data from the pump? Can a parent caregiver, you know, friend spouse, once the Tandem information is on the user's phone, can it be shared.

Molly McElwee Malloy 44:15
So we are working on a remote monitoring feature. But at this time, it will just be available on the patient's phone, and it will be a way to get the data to the cloud. Now you could log in to see connect and look and see what's going on with Benny at school. If he's if he's got Wi Fi going. It's not really meant to be a remote monitoring system is approved for that. But you know,

Stacey Simms 44:44
(laughs) I’m just thinking of all the parents I know All I care about is is it charged and is there insulin in it, but I know a lot of people really want to see, you know, everything but that's really interesting.

Molly McElwee Malloy 44:52
It could be that you know, and then some people know how to like do the mirroring on their phone to another device and you know, there's going to be people will figure that out. And we will eventually have a formal system for that. And again, nothing is intended to be remote monitoring or you know, per share type viewing. It’s supposed to be a, you know, a secondary viewing device of seeing the data. But you know that data is going somewhere and you can log into that place. So, you do with that with whatever you want to, but you'll be able to see that data if he's got Wi Fi going.

Stacey Simms 45:32
All right. before we let you go. I have to ask you, we started this whole conversation about you talking about, you know, finally relaxing when you use an automated system in 2006. So here we are. 13 years later,

Molly McElwee Malloy 45:50
I know.

Stacey Simms 45:53
You've been using Control IQ I shouldn't make that assumption, but have you been using Control IQ?

Molly McElwee Malloy 45:58
I do have Control IQ Okay,

Stacey Simms 46:00
and I'm asking you this I know I may be limited in what you can say and I understand that. Are you as relaxed and feeling more in Control of your diabetes as you had hoped? Back in 2006?

Molly McElwee Malloy 46:15
You know and.. sorry, it makes me little choked up.
I am in a place I never knew existed, right? This is a place that I dreamed about. I'm not worried about what's happening with my blood sugar. I'm not worried. We had my daughter's third birthday this past weekend, and I didn't worry about, was my bolus enough for the cupcake because like it had my back, right? Like, I was like, if it's, you know, this more than this, whatever, it's got me if it’s less than this, it’s got me like, I didn't worry the whole day and I stayed in range the whole day and Got to enjoy my daughter's birthday without worrying about my diabetes. So that was pretty awesome. And that's where I want to live, right? Like I have other things to do. Everybody has other things to do than to try to be their own pancreas and their own organ. So let's relieve that burden and then you just interact with it with meals with exercise, you know, when you need to. It's much more of a relief than I imagined because in 2006, I was hooked to laptop.

Stacey Simms 47:35
Oh my gosh. That’s right!

Molly McElwee Malloy 47:37
Yeah, I was hooked to laptops with four IVs in my arms. And I was willing to do that. And I would have walked around like that. So this is some space age invention that never entered my mind that this could have happened but it is beautiful, very eloquently done. I have to hat tip to the engineers at Tandem, who took you know, years and years and years and years of research to work, you know, work done in neat tidy ways, right? And then put it into a system and made it this eloquent and this beautiful. Where I don't have to think about the 50 things I would have thought about before, you know, is my laptop plugged in and my plugs into the right USB port, my, you know, the things you've got to think about if you are plugged into bigger machine. Sure, like, I don't want to think about any of that. And, and during research, you know, seeing in all the different iterations. You know, we still had even we have a cell phone, we still had the fanny pack, right? Because you had to keep the receiver and the phone near each other and all this other stuff going on and the pump.
And now I'm just walking around with a CGM and a pump on and it's doing it and I don't have to worry about any additional things to keep up at it's pretty great, it's pretty awesome. This is a place that I never dreamed, I never even dreamed of. And I'm just so happy to be here.

Stacey Simms 49:10
Molly, thank you so much for joining me for spending so much time talking about this. It's been remarkable to just for the few years that I've followed along in your journey, it's been wonderful to watch. So thank you so much. And I cannot wait to get this for my son!

Molly McElwee Malloy 49:29
that I can't wait to see what you say. Because, you know, we're like to 2.0 we’ll make 3.0 We'll see what's going on. So your feedback, everybody's feedback is so valuable.

Stacey Simms 49:40
I would have liked to have ended on that emotional note that you have there. But we do have to say, for for many people who have been in this community for a long time, who are emailing you and me saying, Why can't I get the target under 100? Why cant I do this? I want this feature. I want that feature. It's not that they're that people are greedy. It's just that you know, you know we all we all want this so badly. It's a great reminder that this is the first step. This is this is the beginning of the automation. So, you know, I want it all too, but I get it. And I just think it's fantastic. So yeah, this is this is the first one with Tandem. Let's see what happens to the future. So gosh, it's so exciting.

Molly McElwee Malloy 50:21
It really is. And I could say to people who want to customize everything, want to do everything good. Look, the future is coming. And it's coming faster than we then we could have dreamed up and I realized we waited a long time. Trust me, me of all people. I know how long we have waited. But this is a really solid system that we get to build upon. It’s going to be a phenomenal ride. Like I would invite them to try it. See if you can relax a little and see if it brings you any kind of peace of mind. And then we'll work on getting the targets exactly where you want them.

Stacey Simms

So much more information on the website please check it out. And I know many of you have unanswered questions you know you really want to do a super deep dive you want more we will dig into the research as Molly mentioned, I promise we will do mentioned I promise we will be doing follow ups on this as a tandem family. You know, we'll have Benny fool around with it. let you know what he thinks I'm hoping to get him to do a review. As soon as we get control IQ, which, you know, we're not jumping the line, we're there with all of you. So hopefully by the end of the month, beginning of February, I'm really hoping that we'll have control IQ on his pump.

And, you know, that brings me to just a quick personal note on Ben, he was diagnosed 13 years ago, in December. So December of 2006, is when we heard those words, you know, your child has type one diabetes. And I remember a few bits of information from that day, we were not told, thankfully, we were never told, oh, the cure is five years away we were we were never told that and I had been a medical reporter for many years, and I'd covered type one diabetes. And I'd actually covered failed products like the gluco-watch and things like that. So I had my my knowledge around me and I knew there was going to be no cure in the next five years. So we didn't have that. But our endocrinologist did tell us that the artificial pancreas was in the works. And he said three to five years. And we would probably have that. And I have been hopeful, you know, cautiously optimistic, I didn't hang my hat on that. And I knew we'd have to learn to live well with diabetes without an artificial pancreas. But when I think now to 2006, knowing that that is when Molly, within that trial, and other people that I've been so lucky to meet and talk to, since people like Tom Brobson, so many people at JDRF, who were involved in the early early artificial pancreas project, , it kind of boggles my mind to think that I could go back to Stacey in 2006 in that hospital room and say, Look, it's not going to be here as soon as you hope. But your son's going to be fine. And you're going to get to talk to these people that right now are testing it out. I mean, to me, it's just wild. And more importantly than than me still me getting to talk to all these people much more importantly, is that the people with type one as you listen my son get to use it. I'm so excited for control IQ. I'm so excited for anything that takes any bit of burden away from people with diabetes. I'm not looking for the world's lowest A1C? I really know that I am looking for a healthy A1C  that lets my son lives a life he wants without diabetes being a pain in the ass without his mother texting him 400 times a day did you bolus Did you check? Right all that nagging stuff? I don't want him thinking about it 24 seven.

When you talk to people who loop when you talk to people who've used open APS, right, these do it yourself systems. Their first response to you isn't, look at my fantastic A1C, although they're usually very good. It's, well, I get more sleep. Wow, I think about diabetes less. Wow, I worry about my kid less. And that, to me is what it's all about all of these decisions. I’m getting emotional thinking about it. All of the decisions that everybody who has diabetes, forget the parents that the people with diabetes have to make and that burden that is on you. I hope systems like this. Just relieve it a little bit. It's a good first step. It's not the end there is a long way to go. But that's what I am hopeful for. Okay. But that's what I am hopeful for.

And I know that I'll hear from you. You wonderful do it yourselfers who will be figuring out ways to you know, hack the sleep mode and change the exercise mode and figure This stuff out. So we will move forward with lots more information in the weeks and months to come. You know, I don't have a way to wrap this up with a big bow. I don't have a way to end this year by, you know, saying something incredibly motivational and giving you a boost into the new year. But I do have to say that it's so exciting to end 2019 with the approval that frankly, I've been waiting for all year, and I know many of you have as well. And seeing that as another step forward. And looking forward to 2020 and what may come.

Our next full episode will air on January 7, but later this week, I'm going to be releasing a new minisode I'll be doing more of these in the new year just really short episodes where I share some thoughts or some advice. love to know what you think about all that.

Big thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. wishing everybody a happy and healthy New Year. I'm Stacey Simms and I'll see you back here in 2020.

(disclaimer)

At times I mentioned tandem diabetes care. However, I am not compensated by tandem for my actions. And tandem does not support or control this content. I have created the content and it is based on my personal experiences and observations.

Transcribed by https://otter.ai

Dec 17, 2019

With holiday travel gearing up, we decided to check in with someone who travels the world. Jason Viglione is always on a plane, train or car for business and has figured out his own best practices for pump, CGM and the whole routine

Check out Stacey's new book: The World's Worst Diabetes Mom!

Jason was diagnosed just last year.. his anniversary date is coming up in January. Like a lot of adults, he had trouble getting the right diagnosis. We’ll hear that story and a lot more..

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In TMSG – a cameo in a Hallmark Christmas movie.. a diaversary celebrated in a big way.. and a little independence for a tween with T1D that's worth celebrating!

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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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Dec 10, 2019

Meet dietitian and strength coach Ben Tzeel. He says he started getting hooked on strength training as a teenager and hasn't looked back. Ben & Stacey talk about his wild Instagram posts where he shows you how he doses for food like giant donuts, and carbs and macros and diabetes and exercise..

Check out Stacey's new book: The World's Worst Diabetes Mom!

In TMSG: a girl scout troop decides to educate their community (check out the video here) 

and a comic book from the UK aims to educate about T1D (more here)

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Stacey & Ben also talk about specifics to help her son, Benny, as he begins high school wrestling. At his first double practice (weights & mats) Benny needed to eat 75 uncovered carbs to stay above a blood sugar of 80!

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Dec 5, 2019

Listen to an excerpt from The World's Worst Diabetes Mom: Real Life Stories of Raising a Child With Type 1 Diabetes!

If you like what you hear, get the audio book for FREE. Diabetes Connections listeners can use this link to get one free  book and one free month of Audible!

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and here if you want the paperback - eBook - or audio directly through Amazon and you're already an Audible member

This chapter is all about using social media to thrive with type 1 diabetes. But of course, it's also about the many mistakes Stacey has made along this way. Hear the story of how she bolused her purse, instead of her child.

Read the transcript below

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Transcript of the excerpt:

"I think there’s an argument to be made that we can get more out of social media when we share our mistakes and worries than when we only post when things are going “right.” I know a lot of people love to share straight CGM lines and big and small victories, and that’s great. I love to celebrate along with you! But over the years, I find I have more of an impact and get more support when I pull the curtain back and show what’s not going right for us.

The first time I realized this was a scorching summer Saturday in 2010. Benny had just finished Kindergarten and Lea, 4th grade.  It was 101 degrees in Charlotte. I took the kids out to and then to a nearby splash pad. It was exactly what we needed and we spent the afternoon inside at home, trying to beat the heat.

The afternoon blood sugar check was a shocker: 500 BG. Big bolus, but an hour later Benny said he didn't feel well. At this check we got HIGH GLUCOSE! No ketones, thankfully, but something was very wrong. The meter remote was across the room, so I asked Benny to take his pump out of the pouch he wears around his waist. That’s when the problem became very clear. He had no pump to take out. Uh oh.

Even though the pump we used was waterproof, we usually took it off when Benny was in or around water. It wasn’t the rough play – the insets stayed on just fine for that kind of thing and the pump is durable. But Benny usually went low during swimming and taking the pump off helped keep him steady.

Note: this definitely depends on the person. As Benny gets older and bigger, the energy he uses for swimming and water play has changed. When you think about a 5 year old swimming, think how exhausted they get – they use their whole body every second! A 12 year old is still very active but might be throwing a ball in the pool and hanging out for hours rather than swimming nonstop for 30 minutes. We found as he got older, we needed to increase the basal rate for a couple of hours after swimming if we’d disconnected for more than an hour.

As I said earlier, check with your endo about disconnecting a pump and/or adjusting the basal rates on a waterproof pump or pod. Many people have also found success using long-acting insulin along with the pump (also called “untethered) or even switching back to multiple daily injections for vacations or summer if your child swims a lot.

Whether your child swims for ten minutes or ten hours, you do need to put the pump back on! We had forgotten that part. As soon as I realized that, I immediately remembered what I had done. We’d taken off the pump and thrown it in my purse. It was still there, just blinking at me and dripping insulin. All that time I was giving Benny insulin using the remote meter, I’d really been bolusing my purse!!

Once we figured that out, it wasn’t a difficult fix. We clicked the pump tubing back into the inset, did a giant bolus, checked ketones (nope) and refilled Benny’s water. I spent a moment wondering if I should wash my purse or just wipe it out. And if I’d ever get rid of the insulin smell. Ugh.

15 minutes later I grabbed the meter to see if the insulin had started working. Yes, I know it was too soon, but I was nervous and anxious and…. I dropped the meter. It slipped out of my hands, onto the floor and cracked. I have backup meters, but this was the brand new remote meter we’d only had for a month. After almost 4 years of pumping, we finally didn’t have to reach into Benny’s pouch to pull out the meter and could easily dose him while he slept. I didn’t have to turn around in the car while my husband drove and dig around in Benny’s car seat to bolus him for road trip car snacks! We loved that new meter. And now, it was all in pieces on my kitchen floor.

Talk about feeling like the world’s worst diabetes mom. My kid was high because of my doofus forgetfulness. Our brand new amazing remote meter was in pieces. Surely, no one was as horrible a mom as me.

I took my frustration to Twitter. If I tell you the responses were life-changing, I’m not sure that would be an exaggeration. Remember, this was back in 2010 when social media wasn’t was it is today. I wasn’t sure what I would get. Scorn? Judgement?

Turns out, all I received was support:

Here are some of the great responses:

@kellyemmaellisThe Party Wizards @staceysimms oh no simple mistake!! At least it can be

easily corrected with pump and Benny had been nice and active to take the edge off!!

@SweeterCherise Cherise/LADA @staceysimms hugs! How's he doing?

@DMomBlogLeighann D-Mom @staceysimms It happens. You realized it and are taking care

of the situation. He'll be fine. ((hugs))

@Kate_Ireland123 Kate Banks @staceysimms diabetes is 24/7, you are not. You can't be

perfect all the time. Its not your fault, you treated it, it's over :)

@PortblPancGrl Stacey D. @ @staceysimmsglad he's ok! And hope his BG gets back to

normal soon.

Other people had done this. Other people made it through. They said I didn’t have to be perfect and that Benny would be fine. It’s hard to describe how much better that made me feel.  I was still mad and frustrated, but I was no longer alone.

I think I was just as relieved to hear that Benny would be okay – that this had happened before – as I was to see these other women not judging me. Not shaming me. They didn’t share the post and invite others to pile on. Instead, they supported me. I didn’t know them but they were willing to reassure me and lift me up.

Of course, Benny was fine – his blood sugar came down, he was safe and happy and thought the idea of bolusing my purse was very funny.  I called Animas and they overnighted a new meter remote. Ours was still in warranty (barely out of the box) so they were fine with a quick replacement.

As you know, by now, this was hardly our first mistake. But it was the first time I remember admitting to one, publicly. It was incredibly freeing and it led the way for me to share more mistakes and missteps."

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Dec 3, 2019

Diabetes nurse practitioner Michael Greenberg just ran the New York City Marathon – his first marathon – with Beyond Type Run, a group of people with type 1 diabetes fund raising and training together.

Find out more about Stacey's New Book: The World's Worst Diabetes Mom

Michael shares advice about running and training with T1D, about what led him to change his career path and how his love of comic books and wrestling help him deal with diabetes.

He mentions Rhone shorts, a sponsor of Beyond Type Run and Path Projects

Stacey talks about Pie Benny Day from a few years back: watch the video 

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In TMSG: a sports connection results in a real life meetup that one kid will never forget.

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At the end of the show, Stacey shares details of Benny's recent surgery - as it pertains to type 1 diabetes.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Nov 26, 2019

Country Star Eric Paslay is on his Nice Guy Tour right now, performing around the US and the world. He talks to Stacey about managing type 1 diabetes on the road.

Learn more and buy Stacey's new book "The World's Worst Diabetes Mom"

Stacey & Eric also nerd out on podcasting a little bit.. he started his own T1D show – Level With Me - earlier this year.

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Tell Me Something Good this week… so much creativity this diabetes awareness month! Did you see the Bachelor with Diabetes. And an elementary school rallies behind a student with T1D.

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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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Thanksgiving episodes Stacey mentions:

Ask the D-Moms Holiday Version

Thanksgiving Round-table: Adults with T1D

 

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Interview transcription 

Stacey:

My guest this week is country music star Eric Paslay. He is touring right now I caught up with him, tpaslay his is several weeks ago actually but there's nothing dated here. I wanted to talk to him again. He was first on the show back in 2017. Because in addition to being diagnosed with type one at age 10. He is now a podcast host. He started Level With Me this year. I'm not sure if he's coming back with that or if it was a one season thing when we talked to him quite worked it out. It's a branded podcast with Dexcom. But we had fun talking about the technical side of podcasting, and what he got out of meeting so many people living with type one. So here is my talk with Eric Paslay.

 

Eric, welcome back to the show. I'm excited to talk to you again. Thanks for joining me.

 

Eric Paslay  7:29

Thank you, Stacey. Good to be back.

 

Stacey Simms  7:31

Alright, so put your podcaster hat on. And I wanted to talk to you about that. Because truly, you know, doing a show like that is such an incredible experience. I'm not sure people realize how much fun it is to be on this side of the microphone, you know, talking to other people going through experiences with type one. What was it like for you to do that?

 

Eric Paslay  7:54

It's just it was it was a lot of fun. I mean, you know, it's fun to get to talk to people. There's so many awesome podcasts. out there about juvenile diabetes, and you're a rock star with Diabetes Connections. And I think it was just fun doing Level With Me we get to go visit people, at their houses where they're at. And kind of you kind of hear what life's like with diabetes. I think a lot of times it's either you have diabetes, the world's ending or I'm overcoming and that's on everything, you know, I can do anything and a lot of times you don't talk about the in between and and I think that's what these podcasts are great for is just talking about these things happening. And with level with me, we just got to talk about real life of, of how spouses and parents like you know, you have a 14 year old son with diabetes, being a parent and just kind of all the day to day activities and things that you did to deal with having diabetes and it was just it was a lot of fun. As you know, there's just incredible people all around the world and it's fun meeting up with type one diabetics that really live life to the fullest.

 

Stacey Simms  8:57

As I said, though, it's a different hat for you to wear well. What made you want to do something like this?

 

Eric Paslay  9:03

I'm not just talking about, talking helps people get used to talking about stuff. You know, I mean, I think there's a lot of type one diabetics who hide it from the world. And it's like, how you go to work and no knows you're diabetic? What if you actually do have a crazy low sugar level happen? What are they going to do? They're just going to not know you're diabetic. You know, I think a lot of people are afraid to talk about it because they're either ashamed or they think they're not tough enough and it's like, you should be excited. We're like living in a time where we're we're getting to survive as diabetics.

 

But you know, I'm not afraid of a microphone on and when we thought, hey, let's let's do a cool little podcast. I was like, sign me up. That sounds like a good idea. And, and it sounds like a great way to get to meet great people and, and just spread the news that you really can't do anything. With me traveling around on the road all the time. It's crazy, crazy, crazy life. of just traveling all the time. Not a lot of people, Lot early flights, late shows that it's cool. Just getting to talk about all the devices I know y'all talk about with the CGM Dexcom and insulin pumps and just all these cool things that really help you live life and not let diabetes get in the way too much.

 

Stacey Simms  10:15

Yeah, let's talk about that. Because you know, you've been on the show before and shared a lot about how you do it on the road. But tell us a little bit about your routine these days with those early flights. As you mentioned, it's kind of a crazy schedule. Anything you've learned that you can pass along.

 

Eric Paslay  10:27

I don't know protein bars don't have tons of carbs but they let me cruise for a good time. I've learned that, you know, I think it's it really is finally getting a CGM. It's like truly life changing. It's you hear the beats that beep beep bepp and you go Okay, I need some sugar or the beep and go Wow, my insulin is not working. You know, Everyone does that sound you know, in the middle of the night they're like, Oh, no. What do you think? Protein bar time.

 

When did you start wearing a CGM?

 

About a few years, and it's truly life changing, it's it really is mind blowing thinking 100 years ago, they figured out these proteins make a thing called insulin and keeps us alive. And to think that there's we're holding a small TV in our hand that tells our blood sugar level. Yeah, I mean, that we can share with friends on a phone is crazy. It's it's truly amazing to see how science and just it's just amazing science and technologies coming together. And it's exciting to see in the next even 10 20, 30 years, what happens with taking care of diabetes and just all kinds of sicknesses, just all the information coming together and people figuring it out. And you talk about on your show. There's just so many cool things happening. I got to do an amazing tour at Vanderbilt here in Nashville a couple weeks back with Dr. Powers. He's my doctor here and it's just exciting to see people doing such amazing research, trying to figure out the immune system And everything with beta cells. Everything that a type 1 diabetic is made out of, trying to reset all those things. It's cool to just just hear how many people really are out there trying to figure out a cure. And until we get a cure, figure out amazingly just easy ways to treat yourself.

 

Stacey Simms  12:17

I'm curious with the CGM, you know, because you were diagnosed it 10 right? Yeah. What your mom and dad might think of a CGM. Do you share with them now as an adult?

 

Eric Paslay  12:28

No, I don't sshare with them now see how they're fine. They (laughs). I share with my wife. Now I share with my wife so she knows where I'm at when I'm on the road, you know, early in the morning, she can check and see if my blood sugar levels cruising. And I share with my band so my tour manager watches my blood sugar level on the road while I'm on stage. And that's insane. It's amazing. He’ll let me know over our in ear monitors were note the crowd doesn't even know what's happening. He'll be like, Hey, you got an arrow down. Orange juice, you know, I'll go over and drink out of Dixie cup. The crowd thinks I'm just partying along and I'm, I am I'm making sure the party keeps going and get some sugar in me. And it really is amazing. It's like a magic trick and I think back to 20 some odd years of finger pricks and and thinking how much picture I really didn't know like really what was the patterns of my blood sugar level and getting to see that on a graph now, but with the CGM it’s is truly amazing and, and I think, hopefully, you know, adding more years to my life with with taking even better control of my blood sugar levels.

 

Stacey Simms  13:36

Let's talk a little more of the podcast because one of the really nice things about yours is you're able to get out of the studio, you know, if you haven't listened to half the show, he he kind of meets with the people he's talking to or hangs out with the family for a while and then the second half, they're in the studio. So it's a really nice mix. And I'm just I'm always curious from a technical standpoint, how are you doing the stuff on the road? I'm gonna get technical here. Are you wearing a mic? Do you have a crew How's it all work?

(commercial break)

Right back to Eric in just a moment I'll answer that question. But first diabetes Connections is brought to you by one touch handwriting your blood glucose levels is the ultimate throwback, the one touch Vario flex meter seamlessly syncs with the free onetouch reveal mobile app to create your dynamic electronic log book. And when you choose the onetouch reveal mobile app, you'll be joining thousands of other people living with diabetes. In fact, as of this past October, one touch revealed was the number one downloaded diabetes management app in the US, Canada, France and the UK to upgrade today to the one touch Vario flex meter and onetouch reveal mobile app, visit diabetes dash connections.com and click on the one touch logo. Now back to Eric talking about production of his podcast.

 

Eric Paslay  14:52

Yeah, there’s a crew, they go out, hang out with the families that we're talking with and just kind of get the sounds of their life where they're at their family. He's running around. I think a lot of times when you're in the studio you can talk about it but you don't really hear the sounds of real life happening sometimes and it shouldn't really is just a just a sweet moment where we get to go and hang out at people's houses or where they're living and hear everyday sounds of being there.  I think it helps people who’ve just been diagnosed or that had been diagnosed for many years to realize you're not alone. And there's a lot of people going through type one diabetes and there's a lot of spouses and kids and family members who have one people they love with Type One Diabetes and just how do you live with that every day. And and it really is, I think it's a really cool thing that we get to do is go hang out with the families for the we saw on the national need to hang out with Blackbird Studios here in Nashville where tons of bands record every year so it's fun for them to come see that and I get to tell him some stories of hair cut my album in here and that is fun. It really is one thing on the podcast I always try to make sure is like you Not just dealing with diabetic, you're a human being like, you're not just to do that back your mother, your father, your brother, your sister, your professional, your student. And I that was one thing I always try to make sure people remember that they don't just wear I'm a diabetic t shirt everywhere they go. It's like no, you said one ingredient of your life, not your whole life, even though it definitely is a big part of how your engine runs. But just making sure people don't just categorize themselves only as diabetic.

 

Stacey Simms  16:30

Yeah, that's what I say to a lot of parents Remember, you're raising a child, not a number. You know, worry less about that straight line and more about is your kids happy.

 

Eric Paslay  16:37

Raising child not a number. I love that.

 

Stacey Simms  16:40

And this is really a dumb question for people who are not  in podcasting or in broadcasting. But I'm always curious, is there different mic technique? You know, when you're talking into the microphone and interviewing these people, and then you're singing or playing instruments, you know, are there different things that you need to do in the studio?

 

Eric Paslay  16:57

I don't, you know, talking to the mic, and I mean, Singing a lot of times, you know you do the vocal set maybe I'll try the vocal fade while the next podcast be like it's so far away from you. When your blood sugar levels everybody wants to be how do you level with it? I mean, it's just like we were just talking with this podcast right now and it's amazing just the technology we have from, from lapel mics where you can hide a mic on you to just a big old studio mic that you've used in radio for years. It's, there's so many cool ways to do it. It truly is amazing, just, I mean, and there's so many podcasts out now from anything and it's just so easy to really record a podcast these days with a computer and a home studio and, and all that and it's, we always joke in the music business. The coolest thing about a home studio is you have a home studio. The worst thing about studios, you can have a home studio. Is it good for music? Is it bad for music? I don't know. You know, there's a lot of music, but it's it really is amazing To do this right now people getting to hear to their little speakers wherever they're flying in the sky or driving the car, on their smartphone to watch them the device being when you're when you're hopefully cruising on a good good level.

 

Stacey Simms  18:15

So you know you mentioned making music of course we haven't talked about that at all. Are you still having fun? What's you know anything new?

Eric Paslay  18:24

Heck yeah. earlier today I've been talking about going on tour and Europe here soon and get back for a few days in Nashville and then Australia for a week. And just traveling around we've got a live album from live in Glasgow that's coming out we recorded it  last summer in Glasgow, Scotland and have all the hits I've written for myself other people so we'll have the five number one songs on there and it's great and excited for that to come out and people get to hear the whole band and hear us live. Fun show have a great crowd and Glasgow Scotland and and then I've got an album that we just pretty much are mixing and kind of putting the final touches on that'll be out probably early next year. So got a live album in a studio album that are coming out and I'm excited to go tour and and play these songs and, and people get to hear how great the band is when we come to your town here. But a lot of really, really exciting things happening.

 

Stacey Simms  19:21

Keeping busy man, thank you so much for joining me. I really appreciate you spending some time Welcome to the world of podcasting. I'm so glad you did it.

 

Eric Paslay  19:29

  1. Thank you, I think yeah, I think the more of us talking about taking care of that it is the more people will be unafraid of asking a question of Hey, I'm having trouble with high blood sugar levels at night or when I eat this. I it doesn't work. You know, I think the more we talk about that, the and more unafraid kids will be to raise their hand and class when they need to go see the nurse. I really was I was always afraid to like disrupt class, something when I'm sitting there and I can feel my blood sugar level crashing. Hopefully a little just people talking about it will help people not be afraid to get up from the meeting and go get take care of their blood sugar level so they can keep rockin and and have a good time doing it.

 

Nov 19, 2019

Christina Martin is the first women with type 1 to compete on American Ninja Warrior. She got into the competition on her first try and made sure to wear her pump and CGM during the run. She even pointed them out for the camera!

Watch Christina's audition video here

Learn more about Stacey's New book!

Christina is also a dancer – at the Olympic level - and continues to run the Type Zero Foundation she started in high school.

In Tell Me Something Good, some good news about travel – a great encounter with TSA from Logan, The Elbow Bump Kid.

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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Nov 14, 2019

Patients for Affordable Drugs has released a new report all about insulin pricing. Stacey has a quick mini-episode to explain what's in the report and how you can influence change.

Read the report here

Learn about Stacey's new book!

Join the Diabetes Connections Facebook Group!

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Nov 11, 2019

This week…. Ask the D-Moms, talking about the holidays. Thanksgiving is just around the corner and it can be stressful, not just because of well meaning family but for many people who are facing their first thanksgiving with type 1:

Find out more about Stacey's new book!

Moira McCarthy and I will answer your questions about food, drinks and what to say to people who after a lot of time still may not get it.

Join the Diabetes Connections Facebook Group!
TMSG – a policy change means people with type 1 can become commercial pilots and a bit about world diabetes day.
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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Nov 6, 2019

Recently, the FDA approved the very first stable liquid glucagon, brand name GVOKE, and as it’s showing up in pharmacies and becoming more available, we wanted to learn more about it.

After all these years.. it’s amazing how we suddenly have two new options on the market. The orange or red box glucagon most of us have held onto since diagnosis was approved back in 1961!

Check out Stacey's book: The World's Worst Diabetes Mom

This is the second FDA approval for a next-gen improved glucagon, in 2019,  following the recent FDA Approval of Lilly’s nasal glucagon, Baqsimi.

The company that makes Gvoke is called Xeris. Stacey talks to CEO Paul Edick and senior VP Ken Johnson.

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Gvoke info:

Main website from Xeris

Savings & Support from Xeris 

Disclosure: Stacey has received compensation and travel reimbursement as an adviser to Xeris at previous events. No compensation was asked for or provided for this interview (or any Diabetes Connections interview).

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