This week, catching up with Dexcom CEO Kevin Sayer – overseas at the ATTD conference. We talk about everything from a G7 update, new partnerships, in-app notifications and those sensors that you’ve probably heard about getting stuck. We also talk about competition, customer service and a lot more.
In Tell Me Something Good, a Miss America contestant with T1D has pretty stellar week – and it has nothing to do with her crown and sash.. this is about engineering .
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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Episode transcription (we're in beta so please excuse grammar, spelling, punctuation and the fact that AI can't figure out Dexcom speak)
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:26
This week, catching up with Dexcom CEO Kevin Sarah overseas at a big diabetes Technology Conference. We talk about everything from the g7 new partnerships in app notifications. And those stuck sensors that you've probably heard about or seen on social media.
Kevin Sayer 0:45
There's a freak out factor but Let's face it, if that's your last sensor, that's not fair. And that's not right. So we noted it, we've seen it, we've read it. We've done everything we can to mitigate it. I'm very comfortable we’ll see this come down.
Stacey Simms 0:57
We also talk about upcoming CGM Competition, customer service, direct to Apple Watch and a lot more.
in Tell me something good on Miss America contestant with Type 1 diabetes has a pretty stellar week and it has nothing to do with her crown and sash. This is about engineering. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider.
Welcome to another week of Diabetes Connections. I am your host Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, just before he turned two. That was more than 13 years ago. My husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and TV news. And that's how you get the podcast. longtime listeners know what the show is all about. letting some new people know because let's face it anytime we talked to dexcom or talk about anything New technology, we get a lot of new listeners. So welcome!
If you've come for that, I hope you stick around and go through our almost 300 past episodes. Now, you can find everything at Diabetes Connections. com, we have a very robust search, there's the regular old search box on the upper right hand side. Or if you click on the episode page, there is a way to sort them by category. So if you want to see all the technology episodes are all the ones with athletes are all the ones about family or advocacy, you can sort them that way as well.
Before we talk to Kevin Sayer, it is important to point out that as you heard the very top Dexcom is a sponsor of this show, and has been for a few years now. Our agreement means I talk about them in a commercial, which you will hear later on the show. But it doesn't mean that I don't get to ask hard questions. I really try to serve you as you listen, I try to serve you first. And if I'm not doing that this show doesn't work ethically. It's really important to disclose these things. And I always get upset when other either podcasters or bloggers or speakers don't do that. If you're a longtime listener, you understand how it works around here. Hopefully, I am doing a good job of serving you. But just to be clear, the advertisers in the show pay for the advertisement. And I believe in them, and I'm glad they're here. But they do not tell me what to say, in the show anywhere else on social media, or when I write a blog, that sort of thing. It's not that kind of relationship.
So we're talking to Kevin coming up in just a couple of minutes asking your questions. I took a whole bunch of them from the Facebook group. We do have a Facebook group, it is Diabetes Connections, the group, very original, but very easy to find that way I thought, and that's really the best way if you want to ask these newsmakers questions I usually ask in the group and you can always contact me that way. That's coming up in just a minute.
But first Diabetes Connections is brought to you by another sponsor, One Drop. It is so nice to find a diabetes product that Not only does what you need, but also fits in perfectly with your life. One Drop is that is the sleekest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, take as many test strips as you need, and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes Connections calm and click on the One Drop logo.
My guest this week is Dexcom CEO Kevin Sayer. He is joining us from the International Conference on Advanced Technologies and Treatments for diabetes, which this year is in Madrid. So as we're talking to Spain here, please pardon any glitches or weird phone sounds that might pop up but hopefully all will go away. Kevin, thank you so much for joining me. I appreciate it.
Kevin Sayer 5:02
Oh, thank you, Stacey. It's good to be back again.
Stacey Simms 5:05
All right, let's start with the news that has already come out of the conference. And that is this official partnership with Insulet. With Omnipod. Can you start by talking a little bit about? And I'll be honest with you, I'm a little confused. I they're already in clinical trials for Horizon. I thought this agreement was a done deal. Tell us about the agreement with Insulet.
Kevin Sayer 5:23
Actually, we've been working with Insulet since 2007. This is a long time relationship. And most of our work in the past was then under the form of a development agreement to jointly develop products together. The announcement this week is the culmination of all that development work over time to basically say, look, we've entered into an agreement whereby we know how we're going to commercialize our joint systems. And also, as we have entered into these development agreements with our partners, we typically do it one generation of technology at a time, we made the g7 system available to the Insulet team as well. So once they get a rising launch with G6, as the G7 system gets ready to go, it will be will be able to migrate over to that system as well. So that that was the purpose of this announcement and the other. You know, the other reason for it, there is so much going on in the interoperability world right now. We index coms as well, it's important that everybody knows that we have these relationships. And this relationship is very close and near and dear to us. So we therefore thought the announcement was good on something we have been working on for a very long time.
Stacey Simms 6:29
When we look at interoperability, you've mentioned already G6, G7. Can you just take a step back and give us a little bit of an update on that so Insulet will go with their horizon, which is not out yet. That'll be g six and G seven tandem with control IQ also g six mg seven
Kevin Sayer 6:50
Tandem has access to G6 right now. We've not yet signed a G7 agreement with them, but we'd expect to do that and then they're very near future. We've also signed a relationship with Lily and their connected pens and their platforms, whereby they'll have access to G six and G seven as well. We have several other smaller relationships with some of the smaller pump companies or others where they have to six, access not a lot of g7. At this point in time, we have to look at that strategy over time and decide what approach we're going to take with partners. The interoperability world creates some very interesting business scenarios, which I wish I knew the answer to all of that, but it ranges anywhere from let's say, one person and go or two people and just work with them to maybe a few or just open it up to everybody. And I think it evolves over time. For us right now. We think it's important that we support certainly as many as we can, but offer even a heightened level of support to those who are going to have commercial offerings in the near future as speaking towards Tandem and Insulet. In particular, the control IQ uses g six and we read certainly very good things about that is that since we've been out there. And so we'll work with them all. This is going to evolve over time. All the answers are available. Sure.
Stacey Simms 8:07
Okay, so let's talk about control IQ quickly, because that's been in the news quite a lot lately. We just started it about three to four weeks ago. It's been working very well for my son, but Dexcom owns the algorithm, but used to be called or maybe still is type zero.
Kevin Sayer 8:23
So let me give a little clarity on the fundamental or the underlying science and the calculations behind the algorithm are in fact, developed a type zero and owned by Dexcom. Tandem has filed that as their controller. They have done some user experiences some modifications as to how it is integrate into their pump, but the fundamental algorithm is owned by Dexcom. And type zero. That's correct. So the sensor in the algorithm driving it are Dexcom properties.
Stacey Simms 8:49
This is a little bit more esoteric than I expected to get in so quickly here, but what's it like being in the algorithm business and Do you have plans to perhaps get some other algorithms in Your tool kit, if you're like us, not the only one out there
Kevin Sayer 9:02
know when we've looked at those, and we love our team in Charlottesville, we have some decisions to make there too. So what we're going to do long term with the algorithm and how available we're going to make it, it is a great business opportunity is a great skill set for us to have as well. With that team in Virginia, we've learned a lot about our sensor, their opportunities to take the science has been developed for automated insulin delivery and apply it to decision support for those who really don't want to use a pump all the time that we could possibly provide some good decisions along the way that would help them better manage their diabetes in the manner that they want to. I think there are a lot of opportunities to do that here.
What we're going to let it play out, we're still early on in in that one. They're certainly next generation algorithm to come after they control iq version of it, which is kind of a step up or there's even less user interaction where you possibly won't have to announce all the meals and Everything that will be a little more aggressive on treatment and require a little less user interaction. And we got to figure out what our strategy is going to be to do that and how we're going to go with that.
So we're kind of in the algorithm business, but sensors are still our biggest, you know, that's where we pay our bills, the most important thing for us, when we saw that asset was kind of available out there that we felt it was something that we just needed to control. And then we're thrilled with it. And quite frankly, it's worked out well for me, too, because they're right away from us in San Diego. And we can very much collaborate very quickly, since we have access to those scientists and they have access to us.
Stacey Simms 10:39
So let's talk about the g7. We've talked about it before. Can you give us an update, what the features will be? What makes it different and the timeline?
Kevin Sayer 10:49
Well, as we've talked, I'll start with the timeline, as we've said in our public statements, will be starting a typical study this year. Our hope is have a limited launch in 2020 The limited line for that have a significant impact on our financial results. So in the public world, we don't say a whole lot about the limited launch, we intend to do the full ride in 2021. And I don't have a perfect time frame yet, I will tell you, the mitigating factor will more than likely be our ability to scale it up. As you know, from your community. We learned a lot in 2019, about scale and all those lessons were not necessarily positive, the Dexcom. But they were good learnings. It was hard, we underestimated some things when we rolled to six out the way we did and I don't know that even if we delayed three or four months like to its original plan launch date, that we would have solved those problems because the demand for G six was so much higher than we anticipated.
It would be you know, in the past, we could overcome 20% more demand than we have because we didn’t fill that many sensors. So yeah, if you’re manufacturing 2 million sensors. We can come up with another 200, 300 thousand, that's not a problem. But when you use the numbers we're at today. becomes a problem. So if anything, we learned anything from the big six launch, we are going to be prepared to scale g7 when we launch it, because when it comes, nobody's going back, just like nobody's going back to G five g six
features of the product, as we've talked about before it much thinner, smaller profile, disposable electronics. So there's not a transmitter component anymore. There's no assembly of anything before you put it on, you literally take it out of the box, press the insertion device into your skin and hit the button and you're gone much smaller plastics profile. from an environmental perspective, patients will be glad to know that we get that comment frequently on our current system about all the plastics length of where we're shooting for an extended wear period.
I have to tell you, we will balance the extended wear period against the accuracy and performance of the system with respect to iCGM standards. We know we have to have this as an iCGM to talk to these automated delivery systems and sometimes you make trades offs. Length of wear versus accuracy, as most people know, at some point in time, the longer you wear a sensors, the more difficult it is for to perform perfectly. One of the things that I often that isn't understood about g six, I can give the perfect example, these standards set by the FDA on iCGM are difficult. They're not simple to meet. And literally the way that g six algorithm works is if through our and our analytics, we look at the sensor signal and determine that that sensor is about to become less accurate than it should be, under iCGM rules, we turn it off. So there's a perceived lack of reliability from some of our patients on the sensor, when in fact that's not the case at all. We're turning it off intentionally.
And that's very often associated with physiology. You know, people's bodies are different, and even sensor sessions can be different based on how much activity you have or where, the place you insert the sensor. So we're hoping for an extended To 15 day, where it certainly wouldn't be less than 10. We will go either way, but we need to make sure we meet the criteria. The sensor is much shorter than g six. So it will be a shorter sensor from our user experience so far and our preclinical work we've had nothing but great feedback on that.
Stacey Simms 14:17
What does that mean? Is it a shorter wire or a shorter device, smaller, shorter wire
Kevin Sayer 14:22
Shorter wire with the direct insert, not angle, but it is straight in but it's very, very short.
Stacey Simms 14:33
More to come on the g7 and many other Dexcom issues. But first Diabetes Connections is brought to you by Real Good Foods, good foods, and their philosophy is all about keeping it real with food with community and with each other. And if you go on their website, you can find out so much more about the product real food, high protein, it's not about chemically made protein powders. This is about food, chicken cheese Right, low carb, grain free and zero added sugar. They keep adding products. We are big fans of the original pizza and the poppers but they've added a breakfast sandwiches with sausage or with bacon, cauliflower crust pizzas, chicken alfredo, other Italian entrees. They just keep adding more great stuff, find out more, go to Diabetes Connections calm and click on the Real Good Foods logo. Now back to my interview with Kevin and we were talking about the g7.
You mentioned the the longer were balanced with their performance Do you expect the g7 to perform differently to perform I hate to say better but to use the criteria you were talking about with the iCGM? Do you expect fewer issues with either Physiology or the sensor sensing that something is wrong and then turning off.
Kevin Sayer 15:57
That is our hope and our belief? We have learned So much from G six, as to what we can improve and make better It's been one of the scientists said to me the other day, he feels like he's working in a semiconductor factory. We're learning that much about sensors these days, as we're preparing for this setting to launch this product, we may not even be able to get all the things we've learned into the first version. But I think there'll be a couple of iterations whereby I know the extended wear will come and I know that that the reliability will be there. One of the things that we put around ourselves as a criteria is to significantly improve the reliability percentages. And we were experiencing on G six today, both on G six going forward and on g7. It just doesn't work. Patients have to return to the sensors, because they fall off or don't last long enough. We have to make that experience more consistent. So we're very focused on that. Not just with you seven, but with the six improvements as well.
Stacey Simms 16:51
All right, this next one, I just have to get it out. Kevin, I feel like a broken record. But can we talk about direct to watch what's going on? I know there's been a lot of holdups but is that something that’s happening?
Kevin Sayer 17:03
No, and we're working on it I appreciate you asking again, is technologically very difficult a Bluetooth protocols on the watch are not the same as the phone. And I go down to r&d and I asked the guys a question, every time I talk to you tell me what's going on. And it's not only difficult from the Bluetooth perspective, there's an experience perspective, it's also difficult with respect to the alerts Can we make it worse, audibly loud enough for by somebody can hear them? What happens when you take your watch and you put it on your charger and it's your primary displaying walk away, there's some where issues and some issues around the watch to create a little bit different experience and required a bit more fun on our part, and quite candidly, a lot more complex engineering. And we have done firmware updates to get us closer there.
When we're done. We'll announce it. The other thing I would tell you is even if we weren't finished today, I wouldn't tell anybody I'm not trying to tell anybody till every transmitter in the field is was compatible because it will be different. version of the firmware on the transmitter. And while it was still be seamless on your iPhone or your Android phone, it will look the same if we announced direct to watch, and then we have a bunch of transmitters in the field that don't go director will watch, we're creating a tech support issue that will just again lead to patients being upset. So we're working on it, it's just a ways out and all these opportunities or engineering, things we have to get done are not just caused by Dexcom, either. There's Apple things that we just have to understand better. They work very closely with this. They're very helpful. It's just taking a lot of time. Sure.
Stacey Simms 18:34
Well, thanks for the update on that. It's nice to know, you know, there's always a fear that these features may not get rolled out right. There's always a fear that and I know you know, this is the type one community that we see CGM makers and other technology companies looking at the the enormous type 2 market which has very different needs very different wants, and that we will be left behind so the watches I mean, it's a little bit dramatic to put it in that way. Looking at direct watch, but you understand what I'm talking about, right?
Kevin Sayer 19:03
Yeah, I do. And I let me respond to that a little bit, please do. You're right. There are a lot more people with type two diabetes, type 1 diabetes, but there is nothing that we do for people with type 1 diabetes, that can't create a great experience for people with type two diabetes. I would argue that the good things we do for type one patients translate better over to type two then heading down a path with lesser accuracy, or lesser connectivity or fewer features. You're much smarter to make a product performance is superb level and then make the changes software related rather than then system related. And rather than sensor related, which is the way we're doing it now.
Or you know, there was a big fear that g7 would be a type two product only hired that from a lot of patients because barely our partner been a great partner has been very much focused on type two where they're on duo, a managed diabetes management program, but that's not the case. We We will launch our g7 system with his ice ice jam label current plans are a legit person in the type one space. After that, even with G six, we can adapt the G six platform to a type two patient that has a different software experience. It doesn't detract at all from what we do for our core market. And where we sit today, the most important thing to do is to get a like if you get accuracy and performance and reliability and consistency, you can take that anywhere. And that meets our type one patients need and will also gives us the business flexibility that we need to go forward. But we're not going to do that if we were looking at something for another market.
And I'm speaking way out in the future. today. It might be another platform that would measure multiple analyze that wouldn't have ice jam accuracy for glucose, but you'd have some combination of pick for analytics glucose, ketones, lactic acid, some other one where it's maybe 20% lack less accurate all four but you get a picture of everything. That's more of a diagnostic As we look at sensors in the future, that's something we would consider. But that's, you know, that's advanced r&d and something that we would look at. We don't have an intention of going a different direction right now. We believe that the features we have we can migrate to type two without compromising our current patient base.
Stacey Simms 21:18
All right, let's talk about some specific type one stuff. And let's talk about following up. And no pun intended there. I apologize on the share and follow issues from late last year, you put out a very sincere apology, you really seem to have taken some steps. I appreciate that. I'm sure it couldn't have been too easy to put that video out, and we appreciate it.
Kevin Sayer 21:40
But no, actually, I didn't tell you that that did not bother me at all. We couldn't put it out until we knew the answers. But that's the way we run this company. And that's the way I will always behave. If we do something that doesn't work. You own it. You don't hide and I wanted to do the video of the day with day one and Gemma calming me down, I wanted to write a letter or reduce something I was wasn't happy that we could not go faster. But now we will always behave that way will never behave any differently.
Stacey Simms 22:13
I have some questions. Go ahead. Alright. Alright. So my first one is, you've updated the website and I'll put a link in the show notes where people can go to check in just last week, there were a couple of issues that were resolved quickly. But I noticed that what happened to me I'll give you my personal story. I noticed on my follow app for my son that we had lost signal, there was a brief notification, I apologize. I can't remember what it said. But something like you know, server error, but something came up a little teeny red line on the app. I cleared it without even looking at it too closely. And I went on my way because I don't My son is 15 I don't look at the follow up as much as some other parents do. But then on a Facebook group, someone said go and check the Dexcom page because They're updating the situation there is an issue. Great. So we all went. But my first question is, you will have announced, I believe that you're working on push notifications of some kind, because it didn't occur to me and maybe shame on me to go to the website. So can you talk about the timeline for that and what those in app notifications will be?
Kevin Sayer 23:19
Sure. But let's go back a step we said and I said in the video, two things we're working on it immediately is a server status page and a product status page on our on our website. So you can go to the Dexcom website, and you can see how the system is functioning. And you can see that clarity is functioning Share and Follow how they're functioning, and we give an update to those in real time, will then implement before in the first half of the year, we're two months into the year almost before the end of June, we will have in app messaging to whereby if there is a share or follow or clarity or whatever issue we can send a message directly to the patient and are the followers servers are down, this is what's going on and it will come in the app won't come through text messaging yet. That'd be something we would do a little bit later. And in all fairness, I don't know that we have everybody's phone numbers to whereby we can push text, but we can't push to the app into the app users. So that'll be here by by mid June.
As far as anything going on Recently, there were a couple times when the status page was yellow. And they worked through those quite quickly learning from what's gone on in the past and got that resolved. And we're now establishing the boundaries for what example what yellow server status means, on our webpage. Because when we started this and just adding totally, one of the the apps had yellow and it's happened to two clinics in the whole country. But since it happened to two clinics, we made it yellow, just in case it happened anyplace else on reality. That was the two words had happened and we dealt with it so we're being rather cautious is causing anything that we We will make it yellow over time, we'll put, you know tighter boundaries around that. But we will make it yellow. We'll work through the issues. We've improved our internal communications, I knew something was going on from the minute that thing went yellow, I was getting notifications. And I was I was traveling, so it's going much better. And we'll build a structure up and continue to make it better. That's all I can tell you. So we'll keep improving.
Stacey Simms 25:24
And I know that you'll be researching this, but I'll give you some patient feedback real quick is that please don't text me. You don't need my phone number in app notification.
Kevin Sayer 25:34
Okay. Yeah, I would rather not understand. balance that with everybody else because
you're catching a flight for the airport, what happens? You get a text message. So the expectation since we're on your phone is we have the same infrastructure we just don't
Stacey Simms 25:53
do what I don't get a text message from the airline. I get a notification from the app. It shows up on my similarly you get a text from Because you probably,
Kevin Sayer 26:01
I guess it depends I Yeah, I know. Anyway, you have to be more like everything else that people experience.
Stacey Simms 26:08
Exactly. Okay, so I have a couple of questions. Many of these questions that I've asked have actually already come from my listeners. Of course, we all have a lot of the same questions. But here are a few that people sent in. Rachel, as we're staying here on the follow up. Rachel wanted to know, if you're still working on having the follow app getting same notifications as the primary app, because all of us parents, especially with older kids, now, we never know when the sensors is expiring when the transmitters expiring, is there any work being done to get the follow up to be a little bit more robust for parents work any caregiver?
Kevin Sayer 26:43
Yeah, we're continuing to work on the follow up and add add more to it. I think it'll be continual development cycle and will continue to add more. I will tell you from the teenager or the college students share a perspective the last thing they want is their parents. Getting The alerts from their app. I know that firsthand, because I talked to a couple of No, no, no, no. And so we try and balance it all. We will make the the share system more robust as time goes on. Because if we learned anything thing from the server outage, we learned how important share was. It is very important to everybody.
Stacey Simms 27:19
Yeah. And all due respect, when you have the first update, when you could make it for 10 followers. You know, not every kid wants everybody their school following them either. I mean, but these have to be parental decisions with good education. So, you know, I think I get what you're saying. But these are all, let's just see, these are wonderful problems technology has created. I try to leave them alone. Alright, so.
Okay, the next question came from a few people. And Gosh, I don't know if you can answer this, because this is more anecdotal, but we've been using the G six since May or June of 2018. And it seems to me Just in the last two months, I have seen pictures and heard anecdotal reports of sensors getting stuck at insertion to the point where in my smaller I have a smaller local Facebook group. People are posting the things they have used to whack the sensor because you're supposed to, apparently on Facebook, you whack it with a wooden spoon to get it to release or there might be a button underneath that you can push a pin in. But this is something that we haven't experienced, but that I've seen in the last two months. Are you aware of this? Is this an actual problem that
Kevin Sayer 28:33
just so you understand, we monitor every complaint and everything that's coming very closely, we have seen a rise in those instances. Fortunately, it doesn't result in a patient getting bad data or anything bad happen. We just have to replace their sensor. We've identified the root cause of that and we've taken mitigations to correct that and that should come down going forward. We have this this Not this specific issue, but the fact is when we see things rise in the complaint base, we have a group of sustaining engineering group that jumps on these issues and determines where they came from. we've analyzed this, this specifically and we've implemented improvements and you will see that decreasing significantly over the next several months that should go away.
Stacey Simms 29:20
Okay, cuz I know the good news is there isn't as readings issue, but the bad news is there's a freakout issue.
Kevin Sayer 29:26
There's a freakout issue and let's face it, if that's your last sensor, yeah, that's not fair. And that's not right. So we notice it, we've seen it we've read it and we have we've done everything we can to mitigate that I'm pretty I'm very comfortable we’ll see this come down.
Stacey Simms 29:41
Okay, but I'm glad to hear that. Is there actual advice of what to do if it happens? Is there the release underneath? I'm assume whack it with a spoon isn't something that you recommend?
Kevin Sayer 29:54
Now we’re in anecdotes and I can’t speak to that. The easiest thing is call us and we’ll get us a new sensor as fast as we can.
Stacey Simms 30:02
I gotta ask. I got a couple of questions from listeners who are asking about outside the United States. Obviously our listeners are USA centric, but there are many, many, many in the UK and Australia and Canada. Can you talk a little bit about jif six and G seven, internationally.
Kevin Sayer 30:19
So g six is in Canada now. We launched it there in the fourth quarter. We also launched in Canada, any commerce platform reimbursement is not brought in Canada. Many of the patients have to cover the costs on their own. So we have tried to make it easier and Canada is the first place we've ever had an e commerce platform where patients can literally go online and buy their sensitive transmitters have them shipped directly to them without having to deal with this has been a very efficient and a tremendous growth driver up there. A lot more people are getting access to speech him in Canada because of that. That's been a great experience. g six has been available in the UK for quite some time. And again, the UK business is I want to say three reacts when it was two years ago. So we're doing very well there also, reimbursement is coming, but it is sporadic. It isn't everywhere. We spent a lot of time with government authorities pleading our case, the importance of CGM, and we found that educational process great. they've jumped on board and learn a lot Australia, g six is coming. I know it's not broadly rolled out, but it will certainly be a 2020 product there and should do very well in Australia as well. Government reimbursement, for CGM in Australia has gone very well. Here today. It is growing nicely, are all US strategy. We really have three pillars that we're working on, you know, first those countries we're reversing, that is good. We gotta broaden there. We have to increase access in countries where reimbursement is sporadic. And the UK, Spain where I am Italy, some of those places is very sporadic. Some regions it's reimbursed others it's not. Yeah. And then there is where we don't play it all. Yeah, we're very well In Central and South America, or Mexico, where we've got a filing in Japan virtue six, but we're not launched there yet.
Stacey Simms 32:08
I'm gonna start this question right here. And it's my fault because I'm running over time. And I want to get one more question in. So I apologize. One more question. Okay, so diabetes mine ran a column recently that was headlined 39 potential new continuous glucose monitors for diabetes. Now a lot of these are pie in the sky. We know many won't come to market, but they went through and listed a bunch of new CGM that are going to be your competition. My last question is about customer service. Talk to us about how you're going to improve, maintain, really try to over serve in terms of customer service, because you know, that in the last year or two as the launch of the G six was a challenge, because of supply, customer service has got to be a challenge too. So my last question is, assure us that it's going to be okay from a customer service standpoint.
Kevin Sayer 32:58
Well for us, it will be Well, I will tell you the one thing we've learned this year, more than anything else is scale. It's very difficult. And I just throw some numbers at you. Two years ago, we announced that the JPMorgan conference we had 270,000 active patients. That means we have patients that we know are buying and using sensors. Okay. I announced in an earnings call a week ago that we have 650,000 active using sensor patients. You can imagine the number of sensors we have to produce above and beyond that the number of phone calls we take, we will make customer service priority but scale is a huge challenge here and it is not cheap. We will spend hundreds of millions of dollars getting the g7 factory up and running before you see a sensor. We will invest hundreds of millions of dollars in G six at the same time, getting the factory automated getting the sensors more reliable. At the same time as we looked at the customer experience. There's a lot of things we can do.
We have formed an entire customer experience Team at Dexcom over the past 12 months To go back and look at how we interact with people is 43 screens to start up the G six, new from scratch. Why is it 43 screens was because it was 43 screens and we did seven plus or G for whatever, we did the same thing. We're go back and re evaluating all those things to make it easier. I believe also on the customer service side, we do need to get better. But we need to get better a couple of ways. Product reliability is the first thing if we make it so you never have to call them customer service gets that much easier. But inevitably patients are going to, I believe personally that software can alleviate a lot of customer concerns. As we look to the future we look at putting tech support in the app to whereby I'll give you an example if your sensor poops out at eight days, it says Hey, your sensor quantitate days hit yes and we'll send you a new one. We're looking at things like this to make it much easier for our patients to work with us. We We purposely went offshore to set up a customer service center because quite frankly, we could not hire enough resources here to Do so that is going better as well on the distribution channel and make it simpler. We're going to the drugstore with future products and moving g six there. So there's not as much interaction as well. But I can tell you the customer service piece is every bit as hard if not harder than the technology piece. And we take it that seriously and we will over the next several years.
Stacey Simms 35:18
Seven, thank you so much for spending some time with me. I apologize to your people because I kept you too long. But I always appreciate talking with you.
Kevin Sayer 35:25
Thank you very much.
Unknown Speaker 35:32
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 35:38
I couldn't get to everybody's questions from the Facebook group. I apologize for that. But as you heard, we ran out of time he was doing back to back to back interviews. I don't know who was next in the queue. I'm sorry. I did make him a couple of minutes late. But just a couple of quick thoughts on on my talk with Kevin they're listening back and I do listen back to almost every interview before we air it. I sounded so offended about the text messages. Do not like that I don't know about you. I want text messages to be from my family, friends and emergencies. I'll take text messages from school, and maybe some alerts. But I want my apps to notify me through the app. And I want to be able to opt in and out of that. I know a lot of people disagree. You know, if you listen to the show for a long time, we don't use share and follow like a lot of parents, I have never let any school personnel follow my kid. We do not see the need, but that is us. So you know, I understand Dexcom has to do its market research and make everybody as happy as they can.
The other thing that occurred to me is that when he talked about going direct to watch, and not announcing it, right, waiting till all the transmitters are out there and then announcing it. My first thought was and so many of us who listen are part of the DIY community. I don't know what you do or how you do it. But the first thing that occurred to me was it's going to take five minutes for these DIY folks to figure out that different transmitters are out there. So I'm relying on you to let us all know because I have a feeling As soon as they start shipping whenever that is and he didn't indicate when, you know, I mean really how long it's going to take people to notice that it's direct to watch because I know there are people out there who every time they get a new transmitter their check
up next, tell me something good with one of my favorite past guests, Sierra Santa said, we will tell you what she is up to now she was in the Miss America Pageant just a few years back. But first, as I mentioned, Diabetes Connections is brought to you by Dexcom. And here's what I have to say about Basal IQ. Now, you know, we switched over to control IQ. But the first iteration of this the first software was basal IQ, the Dexcom g six tandem pumps software program. And when we got it, we started doing less work for better results. Should I say that again? less work, better results with diabetes. Vinny always liked seeing his CGM on his pump. But you know, before this change that was really just kind of a cool feature. I mean, he really didn't pull this pump out just to check a CGM. He looked at his phone, but there was some serious sauce and the basal IQ that kept many more steady. His timing range increased significantly when we started on basal IQ. And his agency, you know, we don't share specific numbers, but not only did it come down, it stayed down. It has been the same, really for more than a year. Now, as I think about it, it's just been great. Of course, individual results may vary. To learn more, just go to diabetes, connections dot com and click on the Dexcom logo.
Right, tell me something good. Really My favorite part of every show. Send me your good news stories for those of you not familiar with Sierra Sandison, and I think most of you probably are, she was in the Miss America Pageant in 2014. I had to look that up because I can't believe it's it's been that long already. But she went on stage first in the Miss Idaho pageant in July of 2014, with her insulin pump, clipped to her bikini bottom, you know, when they had the swimwear competition, and then she created the hashtag Show me your pump, which went viral. And I didn't know this till recently, it was NPR as most popular online story that year. Well, then she walked the runway again at the Miss America Pageant with the insulin pump again on her bathing suit. And you know, we all went bananas.
Well, since then Sierra has gone back to school. She's at Boise State University. She's at the College of Engineering there. And last week, she won her team. She's on a team for this, she won invent for the planet. This is a competition where engineering teams come up with inventions and solutions to make the world's a better place. So they only had 48 hours to do this. It's a pretty wild competition. I will link up more information about it so you can see exactly what happened there. And I'll put some pictures in the Facebook group too. But it's a team looks like a team of five people and Sierra posted. We slaved away at the 48 hour event for the planet competition this weekend and it paid off. We had so much fun and so little sleep, but then it gets even better. Couple of days later, she was recognized by the Idaho Society of Professional Engineers. As the number one student in her class of mechanical engineers, she writes, I am so humbled and still in shock this week seems too good to be true. Thank you to everyone who helped me get to where I am today. I hope to make you proud and keep wearing pink while doing it.
Every time I talked to Sierra, you know, it's easy to forget that she is brilliant, right? We look at the bathing suit, which is how most of us first saw her and we're distracted by that. I mean, I'll be honest with you. When I look at Sierra, I'm always thinking about how bad my hair looks because she always looks gorgeous. Her hair looks great. Her makeup looks great. I have joked with her about setting her up to do a clinic for moms at like a friends for life conference that because we all need to walk around with a ton of makeup. I don't know she doesn't all the time either. Just because it's fun, right? It would be kind of fun to learn how to do pageant makeup like that. I'm getting way off topic, but it's So easy to forget when a woman is beautiful that she is also brilliant. And I think that that is so important to keep in mind. And I'm so thrilled that she is so far forward in sharing all of these accomplishments and not compromising what she enjoys, which seems to be engineering and wearing pink and looking fabulous. So Sierra, thanks for continuing to include us in your journey. I cannot wait to see what you do next. Just let us know when you're taking over the world who would appreciate a little bit of a heads up
if you have a Tell me something good. Please send it my way. You can email it to me Stacy at Diabetes Connections. com reach out through social media the Facebook group is a really easy way to do it every once in a while I'll post and ask and other Facebook groups but please seek me out I would love to hear from you. Help me spread the Good News in our community.
As this episode goes live, it is the last week of February I don't know January dragged by February flew by I'm afraid to The page to March that we have a lot going on. I have three appearances for the book tour. I'm going to be in Wilmington, North Carolina, Winston Salem, North Carolina, and then over to Indianapolis, for the friends for life conference there. I am getting requests for the fall already definitely booking things in September. I think I have something in December already. So if you'd like me to come speak to your group, reach out. I'm trying not to do too many of these a month. I'm trying not to travel every single weekend because I still do have Benny at home even though my daughter's in college. So it's a lot of balancing juggling going on, but I'm loving every minute of it. Our next episode is coming up on Thursday, I'm going to be talking about a little bit of a Twitter kerfuffle. I don't know if any of you saw this if you're on Twitter, but there was a bit of a disagreement started by an eye doctor, a disagreement between how many doctors see their duty to give patients a wake up call and how people with diabetes actually view that wake up call and a real big gulf between these two groups on this One Twitter chat, unfortunately. So I want to share that with you and maybe how we can get our doctors to listen a little bit more. Alright. Alright, thanks as always to my editor john Kenneth from audio editing solutions. Thank you so much for listening. Joining me, please spread the word about this show. Word of mouth is the best way to grow a show like this. We can get more good information into the hands of people who really need it. So post it on your Facebook page, tell a friend who's touched by diabetes about it. I'd really appreciate it. I'm Stacey Simms. I'll see you back here on Thursday.
Unknown Speaker 43:37
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
When a child is diagnosed with type 1 diabetes, most of the time the parents are told that T1D won't stop them. People with diabetes play sports, climb mountains, pursue acting and singing careers and much more. But what happens if a young child is scared to get back in the swing of things?
Stacey has advice for a family she met whose little boy is so afraid of low blood sugar, that he's sitting out his beloved soccer games.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
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 1 diabetes available on Amazon as a paperback eBook and audiobook and at Diabetes Connections.com.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
Hello, and welcome to a minisode of Diabetes Connections. Today I want to talk to you about a question that came up. When I traveled to Maine. This was a couple of weeks ago, I visited a group called the Maine P-Pods. It was a really fun event where I did my World’s Worst Diabetes Mom presentation. And we also had a presentation from Dr. Howard Wolpert who is a renowned endocrinologist and he talked about carbohydrates and really did a good medical presentation as you would expect. And then the two of us - this was really cool -. We got to Do q&a with the audience. So you had me, the mom, the lay person partnered with a pretty terrific endocrinologist. And then there were other healthcare professionals in the audience who were there kind of for support and popped in as well. I'm pretty sure they were also there to make sure I didn't go off the rails, because they hadn't heard me speak before. And when you're billed as the World’s Worst Diabetes Mom, I think they want to make sure you're not going to give the world's worst diabetes advice.
I want to share with you a question that came up that I think probably comes up more often than we realize. This was a mom and dad of a recently diagnosed I probably a couple of months in I'm sorry, I don't remember exactly. But my impression was, let's say six months ago, maybe four months ago. This was a six year old, and this six year old had been so excited to play soccer, really wanted to play soccer, loves soccer, can't wait to join the soccer team. But now with type 1 diabetes, the mom is sharing that the six year old is terrified to play soccer, because he is afraid of going low. And it's really breaking her heart, because he has a brother who is playing soccer and is doing just fine.
So the question was, how can I get my child over his fear of low blood sugars? And I thought this was a great question. Because what we normally get is all the rah rah cheerleading of, you know, our kids can do anything, and diabetes won't stop you and get right back in there. And, you know, that's probably what happens. Most of the time if the parents go along with it, right. It's for the parents to say, right, we're going to get right back in here we go, here we go. But this can't be the only child who is frightened for some reason. So what's going on?
I asked her a couple of questions. And I told her not to answer because, you know, there's only so much information you really want to put out publicly right and I don't want to pop psychologize that's really the turn of phrase, but you know what I mean? I didn't want to play psychologist when I'm certainly not in a, an educated position to do so. But no, it had the medical people there to back me up. I thought it was on pretty safe ground. So I asked her, What is he afraid of? Is he just afraid of that awful feeling? Right? He doesn't want to feel low? Is he afraid that it's going to be embarrassing that he has to leave the field for juice or that his mom is going to be checking his blood sugar? You know? Is he embarrassed about it? Or he wants to hide his diabetes? Or is he truly afraid that something bad is going to happen that he's gonna pass out on the field or he's going to die from a low blood sugar?
And then I asked her, again, not to answer in front of all these people. But where do you think the fear is coming from? Because a six year old is not going to decide that a low blood sugar is dangerous. Somebody's going to tell him this. And if that's what he's afraid of, where did that fear come from? Right. Take a cold hard look. Is it coming from the parents? Is it coming from a YouTube video he said did an older kid at school telling something?
I had a situation with Benny years ago, I want to say he was seven years old at a day camp. And if you're new to the show, my son Benny was diagnosed right before he turned two. He is now 15. And we've been all sorts of crazy situations. But he was about seven years old at a regular day camp. And he came home and he said, Mom, there's a kid at Camp who said, If I keep sticking my finger, I'm going to bleed to death. can that happen? So these kids get this fear, sometimes just from other kids who are just being kids, that other child, maybe thought he was helping? I mean, who knows? Right? Obviously, Benny and I had a whole conversation about how actually, the more you check your finger, the longer you will live, the better you will feel and the happier everybody will be. And he went back to tell us friend No, not gonna bleed to death. All right, one problem solved until the next one.
But my point is you don't know where the information is coming from. So these are a couple of things to figure out. And then what do you do? Well, I suggested that they talked to their kids care team, talk to their endo about this talk to their diabetes educator, because there's a lot you can do to try to avoid those lows. The most common suggestion is usually, to adjust your basal rate if you're using an insulin pump two hours earlier, you can adjust the insulin rate or just take the pump off right before you play and expect your blood sugar not to go down. It takes about two hours for those basal rates.
Part of the reason and I was very interested, I hadn't heard this before. Dr. Wolpert from the stage also answering this question said that there is often insulin on the end or in the canula. So even if you take off the insulin pump, that insulin is going to drip in over about two hours, which is one of the reasons why they recommend that you start adjusting two hours earlier. And I know you're thinking the canula that holds barely any insulin. But remember, this is a little kid, and there are very insulin sensitive adults as well. But when you think about a six year old, what does a six year old even weigh 50 pounds Maybe I should probably look that up. But you know what I mean? They're pretty tiny. Even a big six year old really isn't that big, and a little bit of insulin can make a difference. That's just one thing you can do.
Give a bigger snack, try to set things up a little bit better. Tell the coach, I mean, this is six year old soccer player, tell the coach he's going to play for 10 minutes, we're going to ease our way back into it to even play for more than 10 minutes. I mostly remember soccer at five and six year old as being five minutes of play. And then 20 minutes of snacking. I remember and I think I wrote about this in the book to the hardest part of soccer was that it was all snacks when they were little kids. And Benny never even ran around the field that much. His favorite part of soccer, was trying to stand as far back on the field. He only played when he was five and six years old, standing as far back in the field as he could kicking the ball as far and as hard as he could and trying to make a goal. And he did that a couple of times. So our soccer experience was a little bit different.
Something else that I thought about later but didn't think to suggest the time is talking to This child about professional soccer players with Type 1 diabetes. And I'm mad that I didn't think of this because this was a trivia question in my game show. I want to say last year, maybe the year before I do a game show every summer at friends for life, the big diabetes conference. And this was a trivia question. There is a footballer right a soccer player in Spain, Nacho Fernandez, he has type 1 diabetes, and he's the first person with T1D to score in a world cup. Nacho was told that he needed to quit the sport that his days were done. footballing days were over when he was diagnosed at age 12. He said, No, thank you, I will continue to play and he did so and he has done another world stage. There are lots of footballers and professional soccer players with Type 1 diabetes. So you can look that up. If you have a child who's concerned you to find those people playing the sport or doing the activity. And there's a lot of articles about these people. Sometimes they'll give you tips and tricks and what they do and what they eat. It's really interesting. They can do it on a professional level, you got to have the confidence that your six year old can run around the field on a Saturday afternoon for a couple of minutes.
And then the final thing I'll say, and I did give this advice to the parents at the at this conference was, sometimes you just have to be the parent and tell them, it's time to do this. You're going to be okay. And we're going to go play soccer. I know it sounds harsh, but it's okay. And it's okay to say you are going to go low, and you are going to go high. And that's just diabetes. Maybe it's, you know, an age appropriate conversation about you are your own science experiment. We talked about that a lot with Benny, you know, we're not looking for perfection here. But we're going to learn from it this week. So we can do better next week. And we're just going to keep learning and learning. We're going to make mistakes. We're going to make different mistakes next week, but I'm here you're safe. It's fine. Let's do it.
And this is probably not a great example. But it's the first thing that pops into my mind when we say tell kids to do it sometimes. When Benny was potty trained. And please don't tell him I told this story. But when he was potty training, my daughter was potty trained in three seconds. She turned to that was it were done. She was Piece of cake. And Benny turned to I said to him, Hey, let's do this. Do you want to like, do you want to use the potty? And he said, No. So I said, Okay. And every couple of weeks, I would say, Is it time? Do you want to, you know, and he was saying, No, finally, when he was two and a half, I said, What am I doing asking my toddler? So I said to him, today's the day we're going to do it potty training. And he was like, fine, because right, and we did it. I mean, it was unbelievable to me looking back that I asked, stop asking, just tell them, and sometimes that can work. Now, obviously, you have to kind of figure out what feels right for your family.
And please, the best advice I think I gave here is to talk to your endocrinologist and your care team. But I really believe that if our kids are scared to do something because of diabetes, that fear is coming from somewhere and it can be addressed. So we it's up to us. Find the resources to get them over that fear. You're not a bad parent, if your child is scared, right? You're not a bad parent. If this lasts for a while, we're all just doing the best that we can. And sometimes, like with Benny at camp, the information, the bad information is coming from someplace that you don't suspect. You have these conversations. Keep trying, keep encouraging. Sometimes you're just gonna tell them this is how it is. What do you think? Do you have any advice for this family? You can always let me know I'm going to put this in the Facebook group at Diabetes Connections, the group you can email me Stacey at diabetes dash connections.com. Let me know if you think it this is off base. If any of this is helpful. I am the World’s Worst Diabetes Mom after all, so keep that in mind if you're thinking about taking any advice that I offer, but I will say the health care providers in the room back to me up, I'm answering this question and added some information.
In fact, the best thing I almost forgot the best thing a pediatric endocrinologist stood up and said, I want to reassure these parents, although I think it really is the kid. I don't think this fear was coming from these parents. They really wanted to get him back on the soccer field. He said, I want to reassure you that in the thousands of kids I have seen and that I think he was like 30 years in practice. He says, nobody's ever passed out on a soccer field. And certainly, nobody's ever dropped dead on a soccer field. He said, it just doesn't happen. And we have to get over this fear that our kids are on death's door, when they're diagnosed with Type 1 diabetes. They are not. He was amazing. You know, those are important to treat. You want to take care of business, you got to do what you gotta do. But don't be fearful. I really wanted to cheer. I was so excited to hear him talk about this. Because I think a lot of endos are reluctant to say those kinds of things, and certainly not on a public stage like that. It was great.
So let me know what you think. Tell me what your opinions are on this. How would you encourage a kid To not be fearful and get right back into sports, he will a lot of adults are reluctant to exercise because they're concerned. So what's your advice?
Coming up on our regular episode next week, I am scheduled to talk to the CEO of Dexcom. I do have a lot of questions. I know you have a lot of questions as well. I will be putting a post in the Facebook group there as well soliciting and finding out what everybody wants to talk about. We'll see how much time I get and we will try to get through as many questions as I can. So that will be our regular interview show coming up on Tuesday. I'm Stacey Simms. I hope to see you back there then. And until then, be kind to yourself.
Unknown Speaker 12:45
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
This week, a look at a way of eating for all types of diabetes that sounds – frankly – really hard to do. But the guys behind it say it’s the key for lowering insulin resistance for all types of diabetes.
Robby Barbaro is the co-author of a new book called Mastering Diabetes. We’ll talk about what he actually eats now and why he’s so passionate about this. He has a pretty compelling story.
In TMSG – when an avid scuba diver is diagnosed with type 1, she finds a way to get back in – and under – the water.
Plus, a little bit of a control iq update for us – we’ll tell you how it’s working out.
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!
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, I look at a way of eating that sounds frankly, really hard to do. But the guys behind it say it's the key for lowering insulin resistance in people with all types of diabetes, even so, it seems a little extreme.
Robby Barbaro 0:42
And I come down to the Christmas Day meal and I literally have a pyramid of bananas. We're talking four bananas on the bottom and three then to the true pyramid of ripe bananas. And that's how the practice was done. They were just shaking their head like this. They were kind of laughing and thinking this is not And Alas, there's no way because they've seen me try out different diets over the years.
Stacey Simms 1:03
Robby Barbaro is the co author of a new book called Mastering Diabetes. We'll talk about what he actually eats now and why he is so passionate about this. He has a pretty compelling story in Tell me something good. When an avid scuba diver is diagnosed with type one, she finds a way to get back in and under the water. Plus a little bit of a Control IQ update for us. We'll tell you how it's working out. 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 your host Stacey Simms, so glad to have you along. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed right before he turned two and that was 13 years ago now. My husband lives with type two diabetes. I do not have Diabetes, but I do have a background in broadcasting in radio and television local news. And that's how you get the podcast.
A lot to talk about this week, we will get to Mastering Diabetes in just a moment. But I want to give you a quick update on our experience transitioning over to tslim X2 insulin pump along with a Dexcom G6 continuous glucose monitor. And then the Control IQ is the software that is in the pump. If you're not interested in this, if you're not using this kind of pump, or if you are on MDI or, you know, just skip ahead a few minutes. I do have time codes as always in these newer transcribed episodes for this year. So you can open the episode homepage, open the notes, and you can skip right ahead to the interview. But if you want to know about our control IQ experience, here's how it's going.
We were able to get the new software very early On we got it I want to say the third week of January, we did not get it without issue. Benny's pump was one of the few that could not be updated by plugging it in. There was some issue with the software update that was already in the pump. And even everybody who had that version of the software, only a very small percentage, my understanding couldn't actually plug into the computer and update. Anyway, tandem sent us a new pump with Control IQ on it. And of course, I was to send the old pump back. So we updated immediately it started doing its thing. I will go into more detail about after a month of using it, we're going to sit down and talk about it. But Wow, it really made a difference right away.
The problem was that it was tanking him he was going low, overnight, every night. And I try to not make changes until about two or three days. Right. We have to kind of see how things go. You don't want to overreact. So he went low the first three nights. And then of course we changed it because I'm talking down to 40 you know for extended periods of time. We cut way back on basal. We also cut insulin sensitivity, which really shouldn't affect it when it's in that sleep mode because the sleep mode doesn't give boluses. But we cut back on that anyway because it seemed to be having some issues with corrections during the day really making him go lower than he should have been having to suspend insulin. After that. It really smoothed out. He was using less insulin. He was in range in a very much increased amount of time. You could see his numbers were coming down. It was really cool. Even on a day where he completely forgot to bolus for a big brownie in the afternoon. He went way up, but he didn't stay up. And if you've done that, you know that at least for us, you know if you have like, I mean really, let's be honest, 50 uncovered carbs 40, 50 uncovered carbs. You're going to go up to 300 and stay there for a while. But Control IQ. He did have to bolus but Control IQ brought him down really quickly. It was great.
But unfortunately, it didn't stay great. About two weeks in his pump, the brand new pump that they had just sent us with the update, gave us one of those alarms that you can't reset. Oh my goodness. So I was actually on my way out of town. That was the weekend I was heading to Maine. And Benny was going to be leaving that afternoon for the two day wrestling tournament. So again, he could have done shots, but we were just like, oh, my goodness, you know, what are we going to do? Well, I hadn't actually sent that other pump back yet. It was on my list of things to do, I promise, but I hadn't gotten around to it. So luckily, he put on the old basal IQ pump, the previous software, my husband called tandem, and you know, they went through the troubleshooting is this an alarm that can be cleared? It could not. So they overnighted another Control IQ pump, and I put return the pump on my list of things to do yet again, but then, okay, so then he is at a two day wrestling tournament. It was supposed to be one day, unless they won, which they did, which meant they went to the state championships which spoiler alert, they won. So it was two days of travel and crazy food and then celebration food. parties. Oh my goodness. And as you know if you've been listening while Benny's not actually wrestling this season, he's actually more like the manager because he hurt his knee. So he's doing great, very exciting to be a freshman and have the first school state championship for the wrestling team was very, very cool.
But anyway, alright, so back to the pump situation. So then on Sunday, he's home. He's got the new control, like pump on and then early Monday morning, I want to say five o'clock in the morning, transmitter failure. Not you know, we're not sure not sensor error, not sensor failure, transmitter error for the Dexcom. So Benny turned it off. I didn't even know he just kind of clicked off and went back to sleep until six. I mean, he got one more hour of sleep. That transmitter was two weeks old. It's not supposed to crap out that early, of course. So we had to pull the sensor the transmitter put a whole new set on. Of course I called Dexcom. They replaced everything. But then we're another day really a day and a half between everything that was going on with that. Control IQ so I can say what it's working thumbs up when the technology's not working, which will happen, right? He's fine. I mean, we could always go back to shots, certainly, but who wants to do that? So little frustrating, but we moved forward.
The only advice I have if you're about to start Control IQ, if you're thinking about it, if you haven't made the switch over yet, is, I would highly recommend and please talk to your endocrinologist before doing this, make the change for insulin duration, change over to five hours now, because that's not negotiable on the Control IQ system. And most of us have it set frankly, incorrectly, because we're making up for it in other ways. A lot of studies have been done in this I'm sure if you're familiar at all with Control IQ, you've heard this, but if you haven't, one of the things we did was set the insulin duration to five hours several weeks before starting. And I think it really helped us in the transition. Something to think about something to talk to your endo about and then you just Gotta be patient, make changes slowly and let it do its job. It's so hard when we're used to managing these dumb pumps, right and do this, do that and stay on top of that. To let it do its thing is very difficult.
Okay, let's get to Mastering Diabetes in just a moment. But first Diabetes Connections is brought to you by Real Good Foods and new brand new from them stand alone crusts, so you can create your own pizza but whatever toppings you want, but this is a cook and serve pizza crust, grain free. It's made with cauliflower. I mean, you know Real Good Foods. They're delicious. high in protein, low and carb grain free gluten free. Lots of varieties. I mean, they have the pizzas that have great toppings on them. They have stuffed chicken, they have breakfast sandwiches, huge variety. I like it because it's really easy to find in my grocery store freezer, but you can go online and order the whole shebang. Find out all the different products that they have and mix and match. Find out more go to diabetes dash connection. dot com and click on the Real Good Foods logo.
My guest this week is one of the authors of the new book Mastering Diabetes. These guys also have a podcast, Robby Barbaro and Dr. Cyrus Khambatta say, focusing on lowering insulin resistance through food is the key to living well, with all types of diabetes. Robby lives with type one. And I promise he's really not saying anything out of bounds here, like, you know, this is going to get you off insulin or this is a cure, but there are some unconventional thoughts that he shares in this interview. As always, when I talked to people who are focusing on a particular way of eating, and I do this all the time, we've talked to people who eat low carb people, you know, high fat keto, people who are making these claims on the podcast. This is not something that I verify or confirm during the interview, and do my best to give you all the information. But again, before you make any changes, please talk to your endo. I really did enjoy talking to Robby. Here's our conversation.
Robby, thank you so much for joining me. I am so intrigued by everything I have read and heard. Thanks for coming on,
Robby Barbaro 10:09
Stacey. It's really an honor to be here. I love your show. And the fact that I'm getting to be on it is just really exciting to me.
Stacey Simms 10:15
Oh, thank you so much. We have so much to talk about. I have so many questions for you. But I want to start at your beginning. You had a fairly typical from what I seen onset of type one diabetes as a teenager as a tween, really, but you were diagnosed by your brother.
Robby Barbaro 10:31
Yes, it truly is a fascinating story. So I'm on January 26. That'll be the day that I have lived with Type One Diabetes for 20 years. So I was 12 just about to turn 13 and I complained to my mom, I said, Mom, I am thirsty all the time. I'm going to the bathroom all the time. I think I have diabetes, just like Steve so I have two older brothers. The middle one Steve was diagnosed with Type One Diabetes eight years prior to me and I was pretty sure I had diabetes around said no, no, I don't think you do. Don't Don't be silly. I said, Okay, fine. And then eventually, she went out of town to go look at homes in Florida where we eventually moved. So it was just myself and my middle brother at home. And she called the check in and she said, Hey, how are things going? I said, Mom, I couldn't sleep last night, I was cramping. She said, Okay, go upstairs. Use your brother's bug because meter test yourself. And I was well over 400. And my brother said, right there in there, okay. You have Type One Diabetes pack, your bags are going to be the hospital for a few nights. So we went to the regular general doctor, they ran a few tests. And I remember the doctor coming in said, Yep, you have type one diabetes, we're going to send you to the hospital.
And that was the first time I had seen my brother crying, as you know, as an adult. And he said, Oh, man, just sorry. You have to experience this too. And my parents flew home the next night. And this mother thing that really stayed with me as my dad saying, Don't worry, it's just an infant. convenience, you can still do whatever you want in life. And that was really the mentality that my parents had. And really, they were very, very supportive, very encouraging. And really let myself and my brother really take charge of our diabetes care. And, you know, we were we were both already, you know, type a people that really were on top of it, and we had good medical care from the Mayo Clinic. So it didn't really crush me. You know, I really had a really supportive environment had the tools I needed, and it just began a new life with Type One Diabetes.
I'm really intrigued by your brother's reaction because on the one hand here, you have a brother who's nine years older than you you look up to him, I'm sure and you see that he's probably doing pretty well with this. So on the one hand, it's okay I'm gonna be fine. But then he gets emotional. And he says for you, so that's the had to have been tough to digest as a kid, like I'm going to be okay but there is the sadness too
Robby Barbaro 12:55
play the sure the whole thing was honestly it kind of like, I can I sort of remember certain bits and pieces. I remember driving in the car and talking to my parents on the phone. And just it didn't really, it didn't hit me like I didn't kind of fully understand what was going on. But I guess I just ease into it. And at some point, I guess you just you don't really have a choice. It is what it is, you know? Yeah,
Stacey Simms 13:19
no doubt. So the years go on, I assume that you were treated more traditionally in terms of you start on insulin, you're eating particular diet, you know, your parents are keeping you busy in school. But you had other health issues as a teen
Robby Barbaro 13:35
I did. I had plantar fasciitis, which was frustrating. I was a competitive tennis player. So that's really a painful, painful feeling in your feet when you're walking and trying to run so I would wear these big blue boots at nights to try and help with passive stretching to do plantar fasciitis. I had chronic allergies are all the time, so I took Nathan x and Claritin. D and I would still get sick. As a teenager. I had cystic Acme, which was really frustrating and I tried everything microdermabrasion treatments, laser treatments, oral creams, like oral medical or eye creams for my face and oral medications. Eventually, they put me on Accutane. And that's one of the most serious drugs you can take for acne, your parents actually have to sign a waiver, because some people have committed suicide and that drug. So I also had warts on my feet. So these were just a collection of you know, frustrating, I think, standard symptoms that a lot of people have. Wow.
Stacey Simms 14:33
So when did all the fruit stuff start? When did you decide?
Robby Barbaro 14:38
I mean, I'm sorry. Yeah. I mean, I'll tell you the journey to get into the fruit stuff. So growing up, this is when I was living in Minnesota, you know, doing standard diabetes care. I went to the Mayo Clinic in Rochester, Minnesota with a Vincent cloud, and we would go there and they just had a great team. We had an endocrinologist. I had a dietitian, I had a psychologist. So it was a team effort. There. And the key thing I remember learning from them was like using a log book and actually got quite good at that. But I had standard care. And my dad was into selling supplements through a network marketing company and getting exposed to what they were teaching and some of their educational material was the very beginning of me really considering Okay, wait a minute, there's something to nutrition there's something to diet outside of just following a standard American diet, not really thinking about it. So that was the beginning. And it was a slow evolution of learning. Okay, wait a minute, you know, trying to avoid additives or foods like MSG, like that's good. That's a good idea for your overall health. And I slowly progressed. Eventually, I came across many different lifestyles.
But as I was on this journey of learning as much as I could, I came across a book called natural cures they don't want you to know about by Kevin Trudeau. Now, I'm not recommending this book. This guy ended up in jail. Yeah, there's, there's some things I'm not recommending it. But I came across this book, and it planted a seed in my mind that you know what, maybe it's possible to reverse type one diabetes. If I just eat as healthy as humanly possible and I take care of my body. Maybe I can put myself in such a healthy state that my body will regenerate new beta cells. And now it's just it was the theory the hypothesis. Okay, wait a minute. Like, I know other people haven't done this. But hey, somebody has to do it first.
You know, for example, Roger Bannister was the first person to run four minute mile. And before he did, the smartest people in the world said that's impossible, your heart will explode. And once he did it, other people started doing it. So I do think we're gonna we're gonna figure this out at some point some way how to get beta cells to work again. Naturally, I do believe that but that's not happened. So I go down this mission of Okay, I will do anything and everything to give my body the best chance of healing itself. So I started learning about the concept of fasting. So fasting is when you when you go to bed at night, you're doing like a mini fast and you in the morning you eat breakfast you're breaking your fast and healing and regeneration happens over that time. So it's okay, you know what type of dietary habits can I do to increase the chance of my body healing itself. And this led me to try summarize, the first thing I tried was a Weston a price foundation diet, and that was eating a lot of grass fed beef. They advocate for raw milk, I remember going to farmers markets, and I would buy milk for cats because you can't sell raw milk to humans. And again, I did see some improvements as I cleaned up my diet and got rid of any sort of junk and processed food. There was definitely some improvements but I didn't see anything specific happen to my diabetes health or my insulin intake or my blood glucose control.
So I continue to learn more and learn more, and eventually, I came across a dive by the name of Dr. Gabriel cousins and He was in a movie and he produced a movie called raw for 30 days. And in this movie, he showed how people following his protocol, which is essentially a plant based ketogenic diet. He didn't call it that at the time because ketogenic diets weren't really popular, but that's what it was. I would eat lots of nuts and seeds, lots of vegetables and oil. Like that's basically where my calories are coming from on this phase one, Gabriel cousins program. And you gotta remember, everything I'm doing here is with this mindset of Okay, I'm going to reverse type one diabetes, I'm going to heal this is a strong live a strong motivation. So at this point, I am a freshman in college at the University of Florida.
Stacey Simms 18:42
Okay, I'm gonna stop you right here for the question. So you're trying this experiment, you're experimenting on yourself, basically, I mean, to boil it down. And were you still seeing your endocrinologist? Were they telling you dude, you know, you're losing weight. Let's be careful was anybody giving you a push back at that point?
Right back to Robby will find out what is endo said. But first Diabetes Connections is brought to you by One Drop. getting diabetes supplies is 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 strips 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 get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to diabetes, connections calm and click on the One Drop logo. Now back to my interview with Robby and I'm asking him if with all the weird things he was doing with This end of gave him any pushback.
Robby Barbaro 20:06
Okay, it's a great question. Yes, I would see my endocrinologist every three months you know, you got to get your prescriptions and whatnot. And here's the interesting part I think probably a lot of people with type one are gonna have a similar experience which is unfortunate but they never asked me about my diet. Oh my god, I kid you I kid you not I have been through except for the Mayo Clinic Mayo Clinic they were very detailed. They asked me everything I need, they log it, they kept track of it, but after that, they had two different endocrinologist in Florida. And I think I've had one different one in Los Angeles and not a single one of them not a single appointment. Have they asked me exactly what foods do you eat? Not one.
Stacey Simms 20:48
You know it's interesting because I don't think our endo and Benny's a child obviously. So he hasn't really asked me what do you eat but the they sent us to a dietitian or a nutritionist years of years ago. We never really followed up but You know, he's asked us just kind of like, you know, what are you especially when he was little? What are your favorite foods? What's your favorite fruit? What's your favorite vegetable? You know, he would kind of play. He was great with kids, you know, and ask him about that. But we definitely talked about food and he knows how we eat. So that's really fascinating. All right, so you're on the sly, nobody's following up on you. You're doing fine.
Robby Barbaro 21:17
Yeah, I mean, and the thing the key thing was, I think, from the endocrinologist perspective, give them a little bit of credit, I guess, is that my a one sees were always quite good.
Stacey Simms 21:27
There was no need for them to go into.
Robby Barbaro 21:29
Yeah, exactly. There wasn't a need to like pride and how can I really help this guy? I appeared healthy. I all my other blood work was fine. My agency was fine. I think they did. Like Okay, he's doing great. Like, let's let's just call him the next patient. So at this point, this is where it gets interesting. Here's where I love to talk about the diabetes nuances because your audience because you're gonna understand this stuff. At this point. I'm a freshman at the University of Florida. And again, my mindset is how can I you know, take less and less insulin and eventually not need any That's the goal. And in hindsight, what I realize is What really matters is if you're taking lesson lessons one that's only really significant in regards to reversing type one diabetes, if you know you are also starting to produce more of your own, if your your C peptide level is increasing, if your beta cells are, you know, starting to become functional again, that would be a good thing. But in this case, I was dropping and dropping man. So I took at this point, I was taking 10 total units of insulin per day, I was using only fast acting insulin. And I was actually still doing it through MDI, which I would not recommend, but I would actually take small injections throughout the night, and I was eating 30 grams of carbohydrate per day no more than 30 grams. So my carbohydrate insulin ratio was three to one, and that's a metric of insulin sensitivity.
So you can calculate your 24 hour insulin sensitivity by taking your total carbohydrate consumption, dividing it by your total insulin consumption. This was good like I was getting so excited. Eventually I reached a plateau I thought it was dropping and dropping and dropping that just fader on 10. And the problem was, I had terribly low energy and I was losing weight. That was the big problem. I couldn't keep weight on. And I was on campus, several situations I just basically blacked out, I'd have to stop, you know, that feeling of Okay, wait a minute what's going on, I have to like, recalibrate, you know, get home rest. And it was scary. So I went back to my naturopath who I'd seen throughout high school who helped me with a lot of supplements and food sensitivities, stuff like that and say, Okay, what can I do next? And she's okay, maybe you could benefit from therapy. And I was like, okay, maybe I'll do that. But it was gonna be very expensive. And I was gonna have to drive from Gainesville, Florida to Tampa, Florida, to be able to do this. And I was ready to commit to it. I would do anything to continue pursuing this path. Now, before I committed I heard a podcast and this is where the fruit comes in.
So I heard a podcast from this guy, Doug grant, he's a chiropractor, and he was talking about how people who eat you know, healthy diets and you know, the fruit, that that can actually also help detoxify your body like the nutrient, the nutrient density can help your body eliminate, you know, heavy metals and toxic substances. So I'm like, Okay, wait a minute, this guy's tell me I get to eat all this fruit. He's telling me it's going to have these healing properties. This sounds a lot more exciting than doing the collation therapy. So I'm going to give this a shot. And that was the beginning of the journey of eating fruit. So this guy, this guy, Doug Graham, he teaches basically, you know, basically a fruitarian diet to a certain extent, I would not cannot comment on fruitarian I don't think I follow a fruitarian diet, but I started working with him. And in this is September of 2006, in December of 2006, is when his book comes out. And I read the book straight through and one of the testimonials in the back of the book is my my co founder of Mastering Diabetes, Cyrus Khumbatta. So his testimonials in the back he's also living with Type One Diabetes. He had this amazing transformation of his health and his insulin. sensitivity. And I was blown away. So I go Google his name. I learned some more. I see pictures of him on the internet like, wow, this guy's ripped. He's fit like, this is awesome. I'm really optimistic. I'm going to do this. And so I started working with Dr. Graham and I start eating lots and lots of fruit like literally the first week Ain't nothing but bananas. The second week, I hate bananas and lettuce. And then I continue to add model meals of fruit like this is the beginning I even much differently now. But
Stacey Simms 25:26
I can't wait to hear because this sounds horrible, but go ahead.
Robby Barbaro 25:30
It was really as kind of like, it was like an elimination diet to a certain extent. This is around Christmas time now of 2006. And I remember my, my grandmother was was in town for the holidays. And I come down to the Christmas Day meal and I literally have a pyramid of bananas. We're talking four bananas on the bottom and three then to the one true pyramid of ripe bananas. And that's how they eat for Christmas dinner. They were just shaking their head like this. They were kind of laughing and thinking this is not going to last so No I cuz they've seen me try a lot of different diets over the years and a little bit No, it's it's basically lasted for for 13 years now but again, here's the change the changes that I started eating all this fruit, you would think that I would then need absurd amounts of insulin to eat all this fruit so I'm eating nowadays 600 700 sometimes 800 grams of total carbohydrate per day, and the insulin I'm injecting is somewhere between like 25 and 35 units I mean, depending on how active I am, depending how consecutive my fitness has been, but like I have some Instagram story how so people can see all the details recently, it's actually been under 30 units. But the here's the the percent change. If you can't do the math of that say, like little over 30 units per day and like 700 grams carbohydrate, you're going to come up with a 24 hour insulin sensitivity ratio somewhere around like 22 to 124 the 126 to one that is a 600% change in total this instant sensitivity going from three to one to 25 221 so I'm eating all of this carbohydrate energy, but I'm not needing excessive amounts of insulin, I'm actually using a physiological normal amount of insulin. I think that's an important goal for people living with Type One Diabetes is to live a lifestyle where the insulin you're injecting is close to what your pancreas would have normally been succeeding prior to being, you know, having beta cells and not working properly.
Stacey Simms 27:28
Wait, wait, let me stop you there, because and I had lots of questions about the food. But what you're saying about the normal amount of insulin is not what I was taught. I was always taught that if my son didn't have diabetes, his pancreas would produce whatever amount of insulin he would need. So I mean, let's say you know, we're not talking about someone who's going to spend 20 years eating high fat foods, fast foods, people cupcakes every day. Let's say someone who has you know what kind of an everything in moderation diet, wouldn't their body just produce whatever amount of insulin they would need? Or have I? Is there a study or something that says no, no, you should only be producing 30 units of insulin a day?
Robby Barbaro 28:06
So it's a great question. It's an important question. So there is research that shows how much insulin a healthy human will produce, you know, over a 24 hour period, and it's somewhere between, you know, 25 and 50 units per day. That's fascinating.
Stacey Simms 28:22
I'll have to look those up. Because I really didn't realize there was a, you know, kind of a standard or normal, I just thought it was okay, if you're eating this, then that's what your body does. If you're a teenager, then this is what your body puts out if you're pregnant.,
Robby Barbaro 28:36
Absolutely. No, there's like there's definitely a range. And you know, this definitely goes into the whole research of insulin resistance and what's happening in pre diabetes and type two diabetes and you know, doctors who monitor fasting insulin levels and sort of markers like bad or to get an idea of somebody's state of health, which, again, I think it's an important conversation. That's not happening. often enough in the type one world, which is the fact that we actually can very easily monitor our insulin sensitivity type ones are the most fascinating test subjects for insulin sensitivity on a meal by meal basis. And that's sort of why part of the reason Cyrus are so passionate about what we do is because as people living with Type One Diabetes, we live, eat, sleep, and breathe insulin sensitivity on a millennial basis. And we know that that is the solution to people living with pre diabetes and type two diabetes that is the cause of their condition. It's insulin resistance. If you can learn how to reverse that and maximize insulin sensitivity and be able to utilize insulin that your pancreas is still producing, then they can just become free of diabetes. And this has been shown in peer reviewed research for almost 100 years now.
Stacey Simms 29:56
Okay, so let's go back to the food because If you told me that I was going to eat a pyramid of bananas, or Ooh, maybe add some lettuce, I would tell you that's not happening. Get out of the car, we're done. So tell me a little bit more about what you eat on a day to day basis, if you don't mind and I won't, you know, we all well, I won't judge I'm just going to say, tell me a little bit more about what you eat on a day to day basis.
Robby Barbaro 30:23
It's such an important question and I will get to what I eat. But I first I want to start off with the passion and understanding that satisfy both have for making sure that people who decide to you know follow our program or join our coaching program. Absolutely love every single meal. Like we are very passionate about that and we really work with people about getting specific feedback about the types of foods they like the texture, you know, the different flavors to add and like there's so many different ways to do this. You know, low fat plant based whole food approach that we're talking about. So we've actually put it into a very simple, easy to follow like traffic light system.
Stacey Simms 31:08
Okay, so tell me about that a meal about like a client would eat perhaps rather than what you're obviously able to limit yourself in certain ways.
Robby Barbaro 31:17
Yeah, so So basically, it's going to come down to picking specific ingredients. So we have a green light yellow light red light category. So the green light foods include fruits, starchy vegetables, lagoons, intact whole grains, then you have leafy greens, non starchy vegetables, herbs, and spices, and mushrooms, those are all the foods in the green light category. And any given meal we teach people can include any combination of those ingredients that they desire. And the reason they're green light on our program is because those are all they're very nutrient dense, they're high in water content, they're high in fiber, those are not unprocessed foods, and they also are low in their fat content. So that's really the key of what we're doing here. That's why I can eat so many grams of carbohydrate and not need an excessive amount of insulin and actually just use a physiological normal amount of insulin. It's because we have reduced our fat intake.
Stacey Simms 32:09
Okay, so give me an example of a green light meal like break it down, I'm looking at my plate what's on it.
Robby Barbaro 32:14
So for breakfast, you're going to have one to four of your favorite fruits. So this could be berries, pears, mangoes, papaya, bananas, you name it for your favorite fruits, then you're gonna have some some greens or non starchy vegetables. So it could be lettuce could be a rula. It could be cucumbers, could be zucchini, stuff like that. And also ground flaxseed or ground chia seed in order to make sure you meet your essential fatty acid requirements as an insurance policy. So just by having a small amount of those ground up, you literally automatically right then and there just in your breakfast meal have met your essential fatty acid requirements, even though it's not completely necessary because if you eat enough calories from Whole Foods You would also meet your requirements, but we're sort of doubling up and giving people an insurance policy. So fruit is our primary recommendation for breakfast. You can also have things like, you know, hash browns for breakfast, or, you know, this being breakfast dishes, there's a variety of things their lunch would include, for most people, much more starch, heavy meal. So that's things like potatoes, butternut squash, like a bean stew, something like that. But again, it's going to also have vegetables going to have herbs and spices going on, sometimes mushrooms, the after like a dinner meal. And again that that afternoon meals, the starch focus is allowing people to eat the bulk of their energy at that meal because that's when people are most active. And then you didn't have like a snack in the afternoon fruits a great snack, you know, potatoes are great snack, stuff like that. And then dinner would include, again, there's going to be a starch component of being component, maybe a fruit component, but it's going to be heavier on Vegetables because we are not as active in the evening most of us and that's a good time to really focus on the vegetable nutrient density. And then again like people could have like a dessert like a fruit based dessert. I like have something like an ice cream or something you take banana as you put it through a blender, combine it with some wild blueberries and you have it's really amazing it's delicious. So they're very simple meals like and again everything is is whole that's the that's the really the key nuance if somebody wants to like truly do it 100% but I also want to emphasize you don't need to do and hundred percent to get the results but that's unrefined whole ingredients combined into bowls. That's really how it goes. Right got
Stacey Simms 34:41
Robby Barbaro 34:51
So, again, this is this is the fun part about talking to people. You know, there's many people living with type one, type two The fact that we get to test our blood glucose on niobium basis makes this condition very unique. So if somebody has heart disease or they have cancer, they can't really see that, did things get better or worse based on that specific meal, you don't really know they don't have a key metric. So I'm sure a lot of people listen to the show, have eaten a potato, eaten a starch, heavy meal, eaten some bananas, and they just saw their blood glucose skyrocket, and they're like, man, how is this guy robbing? that food is not the reason that I just saw my glucose meter go to 202 5300. And here's the deal. This is the eye opener. What's happening in that case, is you're likely again, this could be nuances around insulin timing, which I will get into for type one diabetes, but in general, let's say we're talking about type two. The reason that when you ate the banana you ate the chemo. You saw a bug because is because you're living with insulin resistance. It's because what you ate prior to that meal, which has brought about the state of insulin resistance, and what that is, insulin resistance is when your body is struggling to take glucose out of your bloodstream and into your cells. All right, and this is caused the primary cause is when there is fat stored in cells that are not designed to store fat. So your adipose tissue is designed to store fat, okay, you're supposed to have a little bit of fat in your muscle and a little bit of fat and visceral liver cells. But when you have excess, it inhibits the function of insulin, okay, influence sociopaths open the door and allow glucose to go everybody stream into yourself. When that function is not working. Your blood glucose level goes up and up and up. And that's what's happening and pre diabetes and type two diabetes that's the cause. Now, this is also a major problem for people living with Type One Diabetes Type 1.5 diabetes and insulin dependent type two. So the insulin we're injecting in Is it working as efficiently or properly, and that is the resolve. That is why a high carbohydrate meal will result in a high blood glucose reading. So as you begin to lower the fat in your diet, and these cells that have fat that's not supposed to be there starts to get cleared out, all the sudden insulin works again.
So for me, I mean, for example, I just again, I'm on this whole crazy for people but I just had a lunch today that was 230 grams of carbohydrate at one meal. And I know that's more carbohydrate than some low carb people would eat an entire week. So I had mangoes I had white supposed to I had my Mesa potay I had spinach, I had a ruler, that was my lunch, I injected 4.5 units of insulin for that meal. And then I can see on my Dexcom I can see the profile it goes up, you know, maybe 131 40 comes right back down. And this is insulin sensitivity in action and anybody listening to the show can absolutely do an experiment and test that themselves and begin to observe. How can I make insulin work more efficiently in my body, it truly comes. It's wildly simple. It's wildly simple. It truly does come down to how many grams of fat you consuming per day. And we encourage people to use nutrition software to just observe this, just just gather data, just become consciously aware of how much fat you're consuming, and most people will are. It's very eye opening. It's very eye opening fat is hidden, it's hidden everywhere. And a lot of the packaged foods, a lot of simple foods have added fat to them. And it's coming in the form of oils in a lot of cases. And I'm in simple plant foods like avocados, nuts and seeds. They have a lot of fat in a very small quantity. So we're teaching is to have people not consume more than 30 grams of total fat per day. Another metric is to not exceed 15% of total calories coming from fat. Once you meet either one of those thresholds, you will absolutely positively see your insulin sensitivity improved. And again, I know in human biology, like there's a lot of complexities a lot of nuances in science, but this one is truly black and white. I have never seen one single exception in the hundreds of type ones that we've worked with thousands of people but hundreds of type ones. I have never seen a single exception of somebody increasing their whole carbohydrate content of their diet, while simultaneously decreasing the fat and not see an objective improvement insulin sensitivity they will eat more total grams carbohydrate and they will inject less insulin every single time and it will happen in a matter of days. So we run to me seed every time with retreats.
Stacey Simms 40:00
I just have to ask you. So the flip side of that is the very popular, low carb high fat diet where you're not supposed to have more than 30 grams of carbohydrates in a day. I thought that fat kept you fuller, right isn't important to have enough fat in your diet so that you feel seated.
Robby Barbaro 40:19
Okay, this is a such a fascinating cover. so important. So we wrote about this in detail in our book. And we have a whole section on calorie density and satiety. And the leader in this whole field of research is Barbara rolls at Penn State University. And she has done hundreds of studies on satiety. These are very complex studies to try and study human society and change the macronutrients of various foods is actually quite difficult. When you read the study design. You're like, wow, that's that was brilliant and very, very complicated, but it's fascinating research. And what she has found she wrote a book called volumetrics, which I'm sure many people heard about it was actually just ranked as far as like one of the best diets for 2020
Stacey Simms 41:05
volumetrics. I remember covering this like 20 years ago, the and I, what I remember from it the most is that it was all about you eat the same volume of food every day. So maybe if you had like more soup, you know, we're more healthier. So you're getting
Robby Barbaro 41:20
Yes, you're getting hit this. So the cover of the book is a bowl of soup, because her research is that society is basically water plus fiber, its bulk. It's those two things combined, which you didn't research of them isolated, like just drinking water alone does not have the same impact on society as when you have the water in a whole food with the fiber. So your point is very valid though, because So what I'm saying is there's a lot of research to point towards the diet that we're teaching here being very satisfying because of the bulk that's included the water and the fiber in every meal. So it's definitely satisfying Don't worry about that. But again, your point is valid. There are a lot of people who are doing a ketogenic diet. They're not, you know, following those principles and having a lot of bulk, but they are staying quite satisfied. So there there is an element of truth there. But when you look at the and again, that's anecdotal stuff, which I know we both heard, I have not seen much research, peer reviewed published research on that specific topic. So I think there's more to be studied. And I honestly want to have set up a podcast interview with Barbara rolls, just to ask her that specific question.
Stacey Simms 42:34
So funny, because I was a health reporter for a lot of my career. And I remember volumetrics and I drank a lot of soup. I remember it. So before I start wrapping this up, I do want to ask you, I know that your goal initially, as you said, was to try to reverse type one diabetes, right? What's going to cure this for me? And obviously you haven't stopped taking insulin. You're not at all telling people to do that. But when you look at how you're living, and What this plan and your partnership with Cyrus has led you to? Is that still in the back of your mind?
Robby Barbaro 43:06
It absolutely is in the back of my mind that we got to figure this out. There's so it just, I mean, Stacy, do you agree? Like, it doesn't seem that complicated? I mean, why can't we beta so why can't we just go? Like, like stem cells die all the time. And then there's new stem cells that create new ones, why the beta cells so difficult to recreate?
Stacey Simms 43:28
I'm not smart enough to know but I do think it's a lot more complicated. I mean, no autoimmune disease has yet been cured. So I'm very very very hopeful Don't get me wrong, but yeah, I don't I don't know that diet alone You know, of course will ever do it but I'm very the things you mentioned right there. I'm very, very hopeful about but are you still feeling like you're the walking experiment?
Robby Barbaro 43:50
So I couldn't agree more that my after 13 years of doing this, and you know, hitting plateaus of insulin use on two different approaches. I think it's good. I'll be more than diet as well, for sure. And I, hey, I would love to be the experiment like the first person that makes makes it happen. I would love for some miracle to happen. But yeah, it's it's definitely in the back of my mind. But I will definitely say it's not as much as the forefront as it was in the beginning. So the back of my mind is really the appropriate way to describe it. I think about it. I certainly try and be active in the community of researchers who's looking into this and learn from some of their research and glean insights. And I just I want to participate.
Stacey Simms 44:31
Excellent. So the book Mastering Diabetes is for everybody with all different types of diabetes. It's not just about type one, right?
Robby Barbaro 44:39
So the answer is yes. And it's really for people who are living with insulin resistance. So that's everybody with pre diabetes as everybody with type two diabetes, that's people living with gestational diabetes, and that's majority of people living with type one is 1.5 diabetes, and it's also people who don't have Diabetes yet. So in America, we have over 80 million people living with pre diabetes that don't even know it. And there's also a nurse, a big chunk of people who are living with insulin resistance who haven't gotten to type two diabetes or pre diabetes yet. So insulin resistance is really at the core of what we're teaching here. And the reason is, is because insulin resistance is the central node for a wide range of chronic health conditions. So when you're living with insulin resistance, you're increasing your risk for heart disease, for cancer, for chronic kidney disease for high blood pressure, high cholesterol, for rectal dysfunction, for depression. It's a long, long list of unfortunate conditions that are associated in some resistance. And that's part of the reason we're passionate about getting this message out to the Type One Diabetes community as well because we don't die of high blood glucose readings. We die of the complications of diabetes, number one being heart disease. So inside this book, we also cover the science and research of people who've actually been able to reverse heart disease and that whole connection between maximize your insulin sensitivity for your long term health, but also for your short term health in having more energy for getting rid of brain fog, for reaching your ideal weight. It really truly does come back to this one simple concept. If you can focus on how to maximize your insulin sensitivity, you are setting yourself up for success in the short term and the long term. So the subtitle of the book is the revolutionary method to reverse insulin resistance permanently in type one, type 1.5 type two, pre diabetes and gestational diabetes.
Stacey Simms 46:43
I'm really excited to learn more about you and you know, hopefully down the road we can have Cyrus on the show as well. But one more question before I let you go. What are you having for dinner tonight?
Robby Barbaro 46:52
Okay, so tonight I'm going to tell you exactly how
Robby Barbaro 46:55
I enter it into nutrition software. I personally enjoy and My food into nutrition. I like dialing in the ratios I really really enjoy the confidence Okay, this is exactly what I'm having. And I feel really confident in this specific dose of insulin. And for people who don't like using nutrition software, we advocate this idea of go to meals and you sort of know this intuitively as a type one mom but you make certain meals that you've you already know the carbohydrate concept is the same thing. It's one it's this apple, it's this potato it's this But whatever it is, it's some combination of these you know ingredients and I know this amount equals this many carbohydrates this my grams carbohydrate, and you know, we can know what to do so dinner tonight is going to include lettuce or rubella, oranges, mangoes, papayas, and carrots, and it's going to be a total of 110 grams of carbohydrates. And I will also add that this meal is going to have 2.6 grams of fat And it's all by itself naturally without having to add any specifically high fat foods. And in the book, we also go into detail about how much fat you need to absorb fat soluble vitamins. And the research on that is really fascinating. So I hope people check it out. Excellent. Well,
Stacey Simms 48:18
thank you so much for joining me. It's absolutely fascinating. I'm thrilled to have you on To learn more, because I've seen pictures of the fruits and the plates and the you know, I haven't seen the banana pyramid. But I've seen lots of stuff online. So I really appreciate you taking the time to explain it. Thanks for coming on.
Robby Barbaro 48:34
It's great to connect with you. And I really appreciate you having me on. Thanks again.
Robby Barbaro 48:43
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 48:49
I will link up more information on the things we talked about including some studies and some insulin resistance stuff that you might find interesting. I gotta tell you though, I was distracted. A lot once early in the interview and he was talking about bananas and he didn't tell him this I probably should have. I hate bananas. I hate them so much. I don't like the way they smell and like the way they feel I can't stand them. I do like banana bread. It's not the flavoring so much I guess when I think about it, although it's only banana bread. I don't like banana flavored candy. I don't like banana flavored ice cream. So when he kept talking about that, I was like, oh, enough. Okay, so I will link up more about Robby and Cyrus and their podcast and their book at Diabetes Connections.com
up next Tell me something good but first Diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one like we did. You hear rumblings for a long time about the teen years everybody dreads that. But you know it hit us at full force a little bit early. I was so glad we had Dexcom Benny's insulin needs started going way up around age 11. And he has grown. I don't know, seven inches. In the last four years, along with all those hormones swings, I can't really imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system, we can react more quickly to highs and lows, see trends and adjust insulin doses with advice from our endocrinologist. I know using the Dexcom G6 has helped improve Ben he's a one C and overall health. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, just go to Diabetes Connections.com and click on the Dexcom logo.
I always ask for good news stories in the Facebook group. It is Diabetes Connections, the group I really hope you can join us there if you're not there already. I love how the group is going very supportive. We talked about the podcast a bit but it's not just about that. So please come check it out and you know, find people That are well educated and smart and fun and living their best lives with diabetes. This week's Tell me something good is a story I read in another Facebook group actually and asked if I can share and Cindy said yes. So let me read you her post.
“Hi, I want to tell you about something I'm very excited about. I'm a scuba diver and an underwater photographer. I've been diving since 1985. I have over 1700 dives, but I got diagnosed with type one. Last June of 2019. I was concerned about ever diving again. That was my first question for the doctors. we dive in remote places we dive for weeks when we go but we went ahead and booked a trip in the Philippines. In January for three weeks we have been here before we know the manager we know a lot of the divers”
so she had a whole plan included wearing a Dexcom she was going to wear the Libra sensor as a backup. She brought in meter of course as a backup. She was wearing her Pump tantum pump went out of the water between dives, and bringing long acting pens for a backup. Here's what she did 56 dives in three weeks, dives were 60 to 75 minutes each. Each dive was 50 to 100 feet deep. She tried to get her blood glucose to about 140. Before going into the dive, she only missed one dive because of being low. She had to wait for numbers to trend up on another one. She did carry orange juice and snacks on the boat. She did plug in a few times to the pump to correct and she ran higher than she usually did, which you really didn't worry about. I'm so glad to hear this because it was her first time diving and overall her nights were nicely in range.
So she says “here is the exciting news.” Her Dexcom worked great. She had it kind of stuck under the wetsuit with a patch. She did a couple things to kind of keep it on but it didn't come loose. The Libra also didn't come loose. You put a patch over She let everybody on the boat know that she had diabetes. She wanted to make sure that people around her were informed. Her friend and her husband would check in every single time she was about to go under with, you know, what's your number. She also carried a tube of jelly. She says you can get this on Amazon a tiny tube of sugary jelly. You can break the tip off and squirt some in your mouth regulator and all that scuba gear, the regulator. She does give a little bit of advice for other divers here. I mean, she was a diver for 35 years before she was diagnosed.
This is a post in the type one diabetic athletes group on Facebook. But if you'd like to get in touch with Cindy, if you have questions, I have a feeling she'd be more than happy to help you out and I would be more than happy to connect you. If you're thinking about scuba diving and you haven't done it before or you are interested in getting back on the wagon if you've been diagnosed. She says that she really wants people to get back in the swing of it. She also says I'm not telling you how to manage your Diabetes underwater or telling you Dexcom works perfectly underwater. I'm just sharing my experience and excitement of being able to do what I love to do. And she posted a bunch of pictures. I will I'll share a couple of these in the Facebook group. I think this is excellent advice and I'm just so happy that somebody was able to get back to doing what they love after being diagnosed with diabetes because that's what we tell our kids right you can do anything. But you know, it can be complicated.
So way to go Cindy, this is fantastic. I'm so excited for you. And the picture she posted of the fish and some of the underwater stuff is breathtaking. Let me know if you have a Tell me something good story. It can be anything like this. It can be a milestone with your kids. It can just be something that is good news for our community. Email me Stacey at Diabetes Connections. com or posted on Facebook. Just tell me something good.
A huge thank you to everybody who has posted recently about the world's worst Diabetes mom, as I travel more and do this book tour, it is just incredible to hear everybody else's worst stories. I mean, we all have them. And to learn what the what the book is beginning to mean to a lot of people, I did have some interesting feedback. When I went to Maine, they've given it to their clinic, they the group that I spoke with, bought some copies, and gave it to their local pediatric endocrinology group to give to some newly diagnosed families, which I thought was fantastic. If that's something you're interested in. If you have a clinic, or a diabetes office, or a group that is interested in having books on hand, obviously you can buy them and give them out. But please get in touch with me. Because when it's a situation like that, I'm sure we can figure something out either discounted pricing or, you know, maybe we can find something I'm pretty good with sponsors. And I'd love to make the book available to more people and that hadn't occurred to me that clinics might want it. So if you're in I was interested or if you're a health care professional and you're listening, if you're a CDE, please let me know. I'd love to start working things out. I'm going to work on this on my site as well. But just let me know.
Coming up in March, I'm going to be in Wilmington, North Carolina, Winston Salem, North Carolina, and then out to Indianapolis. Can't wait to meet so many of you, as you listen and as you read, boys this fun. thank you as always, to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. In a couple of days. We've got our mini episode that airs on Thursday, and this week, I am going to be talking about when a child has a fear of diabetes, when you know, we tell our kids Oh, won't hold you back. But what happens when a parent tells a little kid No, it's not gonna hold you back and the kid says, I'm scared. I think it will hold me back and I don't want to do this new activity. This was a heartbreaker. So we're going to talk about it and kind of find out what to do. Alright, I'm Stacey Simms and I'll see you back here on Thursday.
Robby Barbaro 57:03
Diabetes Connections is a production of Stacey Simms media. All Rights Reserved all rounds avenged
Transcribed by https://otter.ai
Two big topics for this mini-espidoe. Stacey talks about Spare a Rose and talks to the leaders of Patients for Affordable Drugs.
Spare a Rose is an initiative to get insulin and other vital diabetes supplies to children in the developing world. Learn more here
Stacey also talks about what we can do about the price of insulin with Patients for Affordable Drugs founder David Mitchell and Lauren Stanford, the community organizing director.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
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 at Amazon as a paperback ebook and audiobook. Learn more at diabetes connections.com
this is diabetes connections with Stacey Simms.
Stacey Simms 0:26
Hey, welcome to this week's minisode something a little bit different. I've been doing these short episodes all year long for 2020. And this is our first interview type episode. But I wanted to get some information to you that I thought would be interesting and helpful and about patient advocacy. So we're going to talk about what's been happening with patients for affordable drugs. I spoke about them. Last fall of it put out a report and I wanted to follow up on it. Of course there's a lot of information in the news these days about the price of insulin price of insulin There were advocates at State of the Union address. These are not the same advocates, but a lot of the same push. And I also want to talk about spare arose. So let's do that first spirit arose is an initiative that happens every year to help kids with diabetes in developing countries, so that they can get insulin. It doesn't take a lot of money to help out and it really does make a huge difference in the lives of these people around the world. Why is it called spare arose? Well, back in 2013, a group of people in the basically the diabetes online community realized that for the price of one rose for Valentine's Day, they could make a huge difference in the lives of children. So you spare a rose, you save a child, they've expanded it so that you can, you know, spare quite a few roses. There are different ways to pay for this. But it's really a very simple concept. Where does the money go? There is an organization called Life or child, and they partner with diabetes centers in places like Rwanda, Mexico, India, to give critical supplies to young people who really have nowhere else to turn. Right now, this program supports 21,000 people in 42 countries. And the goal here, no child should die of diabetes. If you'd like to learn more, I will link up everything in the episode homepage. You can see pictures of the families that have already been helped. You can read stories of kids who need help, and you can find easy easy ways to donate. So if you can possibly spare arose this Valentine's Day, it would be very much appreciated. We have done a lot on this in the past. I will link up a very fun episode we did a few years ago with Carrie Sparling and Scott Johnson and Bennett Dunlap, where we talked about this initiative. Gosh, it was probably 2015 maybe was 2016 but it was a while ago about learning more, and why I really do urge you to consider taking part in Spare a Rose
While you're learning about that initiative, I also thought it was a good time to take a look at what's happening here in this country, and what's going on with our communities struggle to get the word out about the price of insulin. And if you've been following a lot of this, it has really heated up in the last couple of years. It seems like a lot of state legislators are taking this on. But at the federal level, it seems like it is stalling and you know, what can we do? Well, patients for affordable drugs put out a report a couple of months ago now. And I want to follow up with them and learn more about what they're doing. What we can do what what can be done about the price of insulin because I think when many of us hear this, we feel like there's just nothing I can do. It's overwhelming. Politicians are just arguing they're never going to get anything done. Well that may be true, that last bit, but there is something we can do. So I wanted to talk to the founder David Mitchell and community organizing director Lauren stand I should note that since I talked to them, each are three, which they're mentioning here did pass the House at the time of this interview, it had not yet passed, but the Senate has not acted. I reached out to Lauren to get an update on that. And she said that they need to pass the health care package by May. So they are pushing for them to include s 2542. It is less far reaching than HR three, she says but would bring meaningful relief to many patients. This is also called the prescription drug pricing Reduction Act introduced by Senators Grassley and widen and it has passed out of the senate finance committee as of this taping in a bipartisan fashion. It has not yet passed the full Senate and it includes the following it would penalize drug makers for price gouging. It caps Medicare beneficiaries out of pocket spending on prescription drugs, and it requires pharmaceutical companies to justify high prices. I will link up information on this as well as h3 and the other items we talked about in the episode homepage. Here is my interview with David Mitchell and Lauren Stanford, David and Lauren, thanks so much for taking some time to kind of explain a little bit about this. I really appreciate it. Thanks for being here.
David Mitchel 5:18
Thank you, Stacey, for the opportunity.
Stacey Simms 5:20
Thank you for having us. Before we talk about the report itself, and you know what we can do as individuals. David, let me just ask you to explain a little bit about what patients for affordable drugs is all about. Can you talk to us about the organization?
David Mitchell 5:35
Yes, patients for affordable drugs is the only national patient organization focused exclusively on policies to lower drug prices. We're independent, we're bipartisan, and we don't take money from anyone who profits from the development or distribution of prescription drugs. We do two main things we collect patient stories elevate those stories to policy makers and elected officials and train people to be advocates Lowering drug prices. And we are building a community of patients and allies that can be mobilized in support of policies to lower drug prices, both at the state and federal levels. My wife and I decided to do this, because she's a cancer survivor. I am a cancer patient. I had an incurable blood cancer. My drugs are very expensive. They're keeping me alive, but they're keeping me alive at a cost list cost of $875,000 a year right now. And just one of my drugs and oral cancer drugs carries an out of pocket cost of more than $13,000 a year. So we have a personal experience here. And we're trying to bring that experience to bear to mobilize folks who are struggling with high drug prices, whether it's for cancer drugs or Crohn's disease, drugs, inflammatory drugs, insulin, there are millions of people who are struggling We're trying to help them have a voice and get something done that will actually lower the prices of drugs.
Stacey Simms 7:06
Was it your personal experience with your cancer diagnosis that led you to start patients for affordable drugs? Or had you been doing this and then this happened.
David Mitchell 7:15
I had been doing health policy work in Washington, DC for about 30 years, then I got cancer. And my experience as a patient was really searing for me to find out how difficult I prices could make trying to manage a chronic disease or stay alive with an acute deadly disease. And I became increasingly frustrated because there were no patient groups speaking out about drug prices. Literally one day I woke up and I had an epiphany. And it was, hey, maybe if nobody else is going to do this, you should try. And that morning, I went downstairs and my wife said, Honey, can I retire? Can I work for free? Can we put in some of our own Money and try and build an organization of patients that would fight for lower drug prices? And she said yes. So here we are.
Stacey Simms 8:07
All right, I could talk to you about the organization for hours and hours. But we're really here to talk about this report the truth about insulin prices. So Lauren, let me ask you, as a person who lives with Type One Diabetes, what do you get out of this report? what's the takeaway here?
Lauren Stanford 8:22
Well, Stacy, I will tell you, when I first read this report, it was kind of shocking. I knew the prices of insulin, were out of control, but just seeing it all written down and laid out. Like that was kind of horrifying for me as a patient. And I know when people in the community saw it, it was kind of the same feeling like seeing the chart with the prices just going up and up and up and reading about the 300% increases and all this and that it was really like startling, but really good information, but kind of heartbreaking at the same time.
Stacey Simms 8:56
Lauren, let's go through this a little bit, because in the report, you will Aren't pulling punches. I mean, there's a section here that's headline price gouging and price fixing. Tell us about that. So not pulling punches. Yeah,
Lauren Stanford 9:09
we're really there's a lot of facts in this. And I think that the spec facts kind of speak for themselves, the price gouging. You can when you're reading the report, you can see that the three companies Eli, Lilly, Sanofi and Novartis, they've all been working together, it seems and price fixing this insulin to keep raising the prices and the report, our chart goes back to 2001. And you can see since then there's been this steady increase from all three of them. It's just crazy. I mean, I can't put into words how exactly it makes me feel. But David might be able to speak a little more to the history of the price gouging and fixing
David Mitchell 9:47
Well, the fact of the matter is that those three companies have managed to take control of the global insulin market, and they have effectively blocked other competitors from entering the market with The enough competition to actually drive down prices. And rather than compete with each other on price, they are content to maintain market shares and divide up the profits and be able to keep raising their prices in lockstep. It's very important to look at that chart and see whether or not they talk to each other and say, Hey, we're going to raise our price 15% next month, or not, they can each see what the other one is doing. And clearly, none of the three is willing to lower the price in order to try and steal market share their content to keep high profits and divide them up. We're going to have to break that cartel in order to lower prices or develop the ability to negotiate with the three directly which is why legislation to permit direct negotiation by Medicare in this country for lower prices is so important.
Stacey Simms 10:54
One of the things that that strikes me when you use words like cartel and gouging and fixed is why hasn't the government already stepped in? If this is so blatantly obvious, right? Why hasn't the government stepped in and said, you cannot do this?
David Mitchell 11:10
Apparently, I'm not a lawyer, apparently, unless they get on the phone and say, we're going to move our prices 15% all at once and talk to each other about it. They are allowed to do shadow pricing under our current law, and they're allowed to see what the other one is doing and then just match the price. So long as they don't talk about it. You can see what they're doing. It's obvious, but under law, if they don't talk to each other and collude, it's a harder case to prove. That's my understanding. I'm not a lawyer, to say, however, that the government isn't doing anything about it. You have to put one word behind it and that is yet because there are plenty of bills in Congress that would tackle high drug prices. And would allow, for example, Medicare to negotiate directly with the drug companies, including the insulin companies for lower prices. And there are bills to encourage the development of more generic and biosimilar drives that would provide additional competition that would also lower prices. So there is a recognition that this is a problem. But as with every one of the drugs we're fighting for lower prices for enough has not been done yet. We have much more work to do. The fact is in our system, drives are supposed to get a period of time to make a lot of money when a new drug comes to market and then we introduce competition through generics and biosimilars to make prices go down. Insulin is the exact opposite. We introduce these three drugs and instead of prices going down because of competition, they just continue to go up. And it's because of the abuses of these companies engaging regulators recognize it And I believe that within the next couple of years, we will succeed in making insulin look like the more normal model of high prices end and prices go down.
Stacey Simms 13:12
One of the things that I think is really interesting in this report are the personal stories, because it's not just numbers, which are great and useful information. But there are faces and names of people who have rationed insulin who would talk about the struggle to afford it. And Lauren, I mentioned that you live with Type One Diabetes and you have for more than 20 years, can you talk about your experiences and of the people that you know as well because I know you have to know people who've really been in tough spots.
Lauren Stanford 13:39
Yeah, and I always say that I am definitely one of the lucky ones because I've always had help and support with paying for my insulin and I've had my parents to fall back on but especially through my work. At p for ad I've heard stories about I were talking with a patient Yesterday who has to sometimes not pay your electricity bill so that she can afford her insulin every month? And I just hear so many stories like that every day and it's awful. And I mean, Stacy, you know, in the community, I think there's been, I want to say a isn't he? We don't. There's been multiple people who have passed away, I think five in the last year from rationing insulin, and it's just incredible that this can happen in America. I can't believe it. And like I said, I talked to people every day that are rationing their insulin, and it's just outrageous and heartbreaking. And like we say to legislators, when we're on the hilar we hear in our stories, like insulin isn't optional for us and rationing isn't an option at all or it shouldn't be an option that people have to do
Stacey Simms 14:48
something to do. I think one of the ways in which my eyes have been opened in the last few years is you know, when when we're fortunate like you and I Lauren to have insurance, right, right go and I get my supply and my insurance pays for it and it's 25 bucks for me it's no big deal here and there, but then there was a time where we were one bottle short, and they said okay $300 Yeah, that one vial of insulin right you think you think who is paying these prices? Right? It seems like well everybody I know has insurance. So even though the list price is $300 are people really paying that and you come to find out and correct me if I'm wrong here. The system is so complicated that even if you have insurance, sometimes you are paying list price you're paying different prices is that something that you found as well
Lauren Stanford 15:34
was prices are really important because a there are people who are uninsured and be when you're on a high deductible plan, you're paying lowest prices until you meet your deductible. So if you have a $5,000 deductible, then you are paying those lowest prices until you hit that 5000 marks and you know how many bottles of insulin someone may need in the first month of the year. I mean, that could be pretty close to five thousand dollars and a lot of people don't have that
David Mitchell 16:02
out of pocket. So well and I would add that in some plans, insurance plans, even after you meet the deductible, you will have a co payment or coinsurance and frequently that's based on list price. That's certainly true in Medicare. You pay all of your out of pockets based on list price. So list price really matters. And I think it is somewhere in the range of 65% of people who pay for some or all of their medications through the year based on with price.
Stacey Simms 16:41
David, you mentioned earlier, some solutions. Some you said yet. I really liked that. When you said there's this is you know, there's not solutions yet. Can you talk a little bit about some of the things that Congress is considering and also you mentioned a couple of them but help people who are listening Try to make a difference. am I calling up my representative and saying vote on this? am I writing letters? What can we do?
David Mitchell 17:07
Well, you can come to patients for affordable drugs.org and share your story with us because we will see to it that the story gets put to work making the case for why this problem needs to be addressed. And then if you're if they're interested, we'll be in touch after they leave their story and not for money because we don't ask patients for money, but to let them know of times that they can call their right their member of Congress or state legislator to speak up for reforms. What are some of the reforms? There is a bill in Congress right now and it may be voted on in coming weeks, called HR three, which is a very comprehensive bill in the House of Representatives that allow Medicare to negotiate over drug prices, and was set as a cap a number that is no high Or than 120% of what six other wealthy nations paid for their drugs. This would lower prices in this country dramatically, because we pay two to three times what other countries pay for their drives. HR three has other good features would cap out of pockets for people on Medicare, it would include inflation caps, so their prices can't be raised more than inflation. year over year. There's a bill in the Senate that is bipartisan, being championed by Senators Grassley and why didn't that would have inflation caps, again, making sure that drug makers can't price gouge by capping increases year over year at the rate of inflation. And the Trump administration has thrown its support behind the senate bill and the Trump administration may be about to bring forward April causal only covering Part B drugs. Those are drugs administered by doctors and nurses in hospitals or doctors offices that would use reference pricing international reference pricing to literally lower the price of Part B drugs to small sliver of drugs. It's only a pilot program, but it's very significant that the administration has brought this idea forward. So there are a number of proposals that are floating around. There are a number of other dynamics in play right now. And I'm laughing It's not funny, but there is a lot of obviously political energy being sucked out of the room by the impeachment process and the partisanship that exists, but I can tell you for sure that if Democrats and Republicans Both in Congress and in the White House could get a deal on drug pricing, they would all really like it. Because there's so much anger and energy around this issue. They want to go home and campaign on having done something. So we are trying to leverage that political energy to see if we can get something done. Before we get too deep into the election year in 2021, it will become increasingly difficult. Yeah, that
Stacey Simms 20:25
makes a lot of sense. It really does. I'm curious, and I don't want to be devil's advocate here. But and I know there's a lot of hope. And there's a lot of energy, as you say, but I'm trying to think of a time where we actually made progress on medical pricing, and things like that. And I mean progress, where prices came down and access improved in the last generation or so. Not to say it can't happen now. But has it happened have we had success in any of these things?
David Mitchell 20:55
know we actually have the most expensive health care system in the world. Some people think we have the best health care system in the world. But we don't actually, we have the most expensive health care system in the world, other countries have found a way not only to pay less for their drugs, but to pay less for all of the elements of health care, and still have better health outcomes, longer life expectancy. We have a system that is built in many ways, not only the drug pricing system, but the whole system is in many ways built to benefit the people who make money on it more than benefit the people who is supposed to serve. So we have hope, and drug pricing because 90% of Americans say they want Congress to do something about it. Democrats, Republicans and independence, there is an enormous energy. It's the only reason that there's hope because pharmaceutical industry is probably spending about a billion dollars a year to fight anything that would lower drug prices. And the amount of money that our side has, is dwarfed by that billion dollars. But what they don't have and we do is a very angry electorate, demanding that the people who they send to Washington and state capitals do something. That's what gives us hope. And that's why having people speak out is so important.
Stacey Simms 22:27
Lauren, let me ask you, you have been at patients for affordable drugs for not not too long. A couple months now. Are you? Okay, are you more hopeful than when you walked in the door?
Lauren Stanford 22:38
Ah, definitely. I don't know if that's because of the political timing, but I can tell you what, these people if anyone's going to get it done. It's this group and our advocates. We have strong voices and to echo what David said before something that we have that pharma and the pharmaceuticals don't have are these compelling patient stories and I think we're doing a really good job of making sure they're heard on the hill and that something needs to change. And I'm definitely hopeful that something is on the horizon, there is not a more deserving cause I think then lowering drug prices so that people can afford to live. So I'm very hopeful.
Stacey Simms 23:19
Thank you both so much for spending some time with me. We will link up the full report, you know, as we have in the past and information, how people can get in touch and share their stories, but I really appreciate it and thanks for fighting the good fight.
David Mitchell 23:31
Thank you, Stacey very, very much. Thank
Unknown Speaker 23:33
Stacey Simms 23:34
information on everything they talked about at diabetes connections. com, click on the homepage to learn more about patients for affordable drugs, the legislation that they talked about a link up some insulin for all hashtag stuff as well some other resources that are out there. And of course, I will also link up to spare heroes that I talked about at the very beginning of the episode. I know Valentine's Day is just about here as this episode airs. It's tomorrow but it is Not too late. And of course, the sparrows initiative will continue for a few weeks after Valentine's Day as well. So please, if you can take part back next week with our longer interview episodes, those drop on Tuesday, and I'm going to be talking to the guys behind the new book that's coming out. They have a podcast to mastering diabetes. And I don't know if you've seen these guys, their claim to fame, their big trademark is they're like, eat 500 carbs of fruit. And I had to talk to them, because it could not possibly be that simple. Of course, it was not. But they really were fun to talk to. It was an interesting conversation. It didn't go quite the way I thought, because sometimes there's a lot of snake oil out there. This is not that they are the real deal. They are the real different deal. But it was great to talk to. That's on Tuesday. And then next Thursday, we will have another minisode and that will not be an interview episode as I just did. And that'll be back to just me talking about one topic for 10 years. 15 minutes. I love doing these. There's so much fun. I've learned a lot already in just the last couple of weeks and I hope you're enjoying them too. If you have a topic that you'd like me to talk about our question you'd like answered, please let me know Stacey at diabetes connections. com or you can just go ahead and post in the Facebook group. I have so many fun interviews lined up. I'm so excited for the weeks to come. But I always want to listen to you and deliver what you would like to hear. So if you got something, please please please let me know. All right, I am Stacey Simms. I will see you back here on Tuesday. Until then, be kind to yourself.
Unknown Speaker 25:42
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
Ask the D-moms is back! We’re tackling leaving kids home alone, keeping perspective when you’ve been in the diabetes community for a long time and driving with T1D. Moira’s daughter was behind the wheel before CGMs and Stacey's son just got his permit.
In Tell Me Something Good, an amazing way to raise awareness. We’ll talk about the Run Across America – one man – from Disneyland to Disney World.. and its’ going on right now. More about Don Muchow from Diabetes Forecast Magazine (2019)
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is diabetes connections with Stacey Simms.
Stacey Simms 0:27
This week, ask the D moms is back. We're talking about leaving kids home alone. Keeping perspective when you've been around this community a long time and driving. Moira’s daughter was behind the wheel before CGM, which had one advantage:
Moira McCarthy 0:42
The good thing about a blood glucose meter and a driving teenager was I had proof whether she had or had not checked her blood. You are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them I don't know how else
Stacey Simms 1:01
I have an idea.
You'll hear what my idea for kids with CGM is. It's something they can do before they buckle up in Tell me something good an amazing way to raise awareness. We'll talk about the run across America. One man going from Disneyland to Disney World. It's going on right now.
Welcome to another week of Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. Hello to new listeners from Maine. I spent this past weekend in South Portland, Maine, talking to the PPODS. I love that name. Parents and providers of diabetic children. It's got a little logo with peas in a pod. Very cute stuff. Now I'm taking a little bit of a chance saying I was in Maine this weekend because as you know, I do tape this podcast a couple of days in advance. And as I'm getting ready to go to Maine right now Actually, it looks like there's some snow in the forecast. So fingers crossed, that all goes well, and that my plane takes off on time, and that I wear the correct footwear. You know, I used to live in Syracuse, New York. I'm from New York, and I lived in upstate for 10 years. I had all sorts of boots and coats, but I moved to Charlotte 20 years ago. Most of that stuff is long gone. So I was really hoping for Sunny dry weather for main. But it looks like that is not to be so yes, I'll be posting on social media about how it goes. But assuming all as well, I make it there and back with no delays. Fingers crossed. I'm sure it'll be a great time. And of course as you're listening, it was a great time.
It's one of those funny things that I thought about a lot especially when my kids were younger about the differences raising kids in the south and in the north. My sister still lives in New York and her kids were growing up. She would send me the cutest pictures but they would in snow pants and snow shoes and jackets and scarves and gloves. And I was throwing my kids at the door, not necessarily with flip flops all year round, but pretty close to it. Benny, I don't think owns a pair of long pants. He basically wears shorts, even when we get a flurry or two here. But I also always thought about diabetes, and how much more difficult it must be to manage all the gear for kids, when they're all bundled up. You know, you do hear about static issues with some of the diabetes technology and other stuff like that. And I was just always really happy that I didn't have to mess with it too much living here in North Carolina.
All right, I'm going to be talking to my friend from the northeast. My friend Moira McCarthy, lives very far from me, but we'd love to get together virtually every once in a while. And I'll be talking to her in just a minute but first Diabetes Connections is brought to you by One Drop. And you know, I spoke to the people at One Drop, and I was really impressed about how much they just get diabetes. And it makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop, diabetes care delivered, learn more, go to diabetes, connections calm and click on the One Drop logo.
My guest this week is my dear friend and fellow D mom. Moira McCarthy, Moira is of course a renowned writer and author, a speaker and advocate, a professional travel writer and much, much more. Her daughter was diagnosed at the age of six more than 20 years ago. And in this go round, I get a little selfish with my questions. Yeah, I have a question for more. You know, Benny just got his permit to drive in early January. And I wanted Moira’s advice. So we talked about that. And we, you're going to hear us kind of puzzle out some things on the spot. We came up with a couple of ideas. And we didn't talk about this ahead of time, and I debated editing some of it out. But I think it's kind of fun to listen to the wheels turn. So you'll hear that and we also talked about when is it okay to leave your child home alone. And then we got on a bit of a soapbox about being blunt, because we're very blunt and the blowback that we both take for that. I will link up all of the stuff that we talked about here, including I mentioned a blog post that Moira wrote back in 2013. And you'll know it when you hear it and I will link it up at the episode homepage. So here is my chat with my fellow D mom. Moira McCarthy.
Hello Moira, it has been too long. How are you?
Moira McCarthy 5:45
I know the holidays went by 2020 started whereas the year going I am really good. I just got my hair did and while I was there, I was thinking all this is perfect because I'm staying and I are doing the podcast and then I remembered that they can't actually see you on the podcast. So people should just assume I've always had my hair dead right before it I
Stacey Simms 6:08
always look beautiful. It's so funny with the show because a lot of times when we do these interviews, you know, you can open up the video window, but half the time I'm in my pajamas, or you know, it's late
at night, and I don't want I don't even want to show myself to the person I'm talking to. Maybe one of these days we'll do a video podcast, but not today. So I've been dying to talk to you because right at the beginning of the year, Vinnie got his permit now in order to drive in North Carolina. I know in North Carolina. No, he's like four. Yeah, exactly. You can get your permit here at 15. And then you can get your driver's license. It's a graduated system, but you can get your driver's license at 16. So a lot of kids like my son at 14 and a half, you know, go to Driver's Ed, and then they take the the written portion, then they take the driving portion and then they're behind the wheel and that's where we are So I was so happy to talk to you because we're a few weeks into this now. But what do you think of driving and diabetes? I know it was a little different when when Lauren was driving, but can you share your experiences on that?
Moira McCarthy 7:12
I it wasn't that much different. The first thing I will tell you is Lauren is my second child, my older daughter is four and a half years older than her. And so we had experience teaching a child to drive before and I can honestly say that, I think that Lauren having diabetes made me take it all more seriously and do a better job than I had with her sister. So I think it's kind of a benefit. And one little example I can think of off the top of my head and then we can talk about details about kids with diabetes and driving and what they should do is um, I remember realizing that was really important to teach Lauren, my daughter with diabetes, how to pull over safely if you had to pull over suddenly for some reason for her it would be a low blood sugar or something right. And I realized that I don't think I ever taught my daughter that like, I think if you just say well pull over as soon as you're low, they're going to, they could pull over. And so place it, it's really dangerous to pull over, you know, instead of like go to the nearest exit or, you know, if you cannot make it there call 911 type of thing. And so that's just one example of many that I think that it caused me or led to me to do a much better job.
Stacey Simms 8:22
If you're listening and thinking, of course, they're gonna know how to pull over, get me just you've never driven with a new driver, because it's amazing what they don't know. You think they've been your car for all these years? They must pick up on everything. But I never taught Leah, my older child who's now 18 you know, I never taught her how to pull over safely. That's going to be lesson number one when she comes home next,
Moira McCarthy 8:41
because seriously, you can say most people must but how many times have you seen people pulled over like on the median strip side instead of the other side of the highway? You know, or or up next? What jersey barrier when you're like, No, no, don't get out of your car there. So as far as kids with diabetes, we were big problem. opponents have a contract for driving. And you sign the contract right at the point that he's at now, when they begin driving, and you sit down together and you discuss it, and there's actually a chapter in my book on driving and there is a sample contract. I'll tell you in a moment what I would add to that, because that was written five or six years ago, but you come to agreements together on what the expectations are, and then you both signed the contract. And for us, we did have low blood sugar amount that we expected her to pull over, if she got that low. And then we didn't really have one for high and we can talk about that if you want to. But our agreement was that if she forgot to check before she drove, she would have the keys taken away from her for a period of time. And sure enough, the first month, she had her license, she did it and I had to take her keys away for within that day, I had to drive her everywhere again. I say well, that's not a punishment if you drove them but it was a punishment. So with the Contract everything is out in the open and clear. And you as a parent have to stick to it and your child has to stick to it too.
Stacey Simms 10:06
So when I said things are different, all I really meant was CGM, which obviously not everybody has.
Moira McCarthy 10:13
Yes. So I will tell you what I would add to that contract and what I think about CGM and then we can talk about it more. I personally think it's super important that your children never ever, ever, ever look at their CGM while they're driving. Now, that doesn't mean they shouldn't use it. But just like a cell phone, it should be put away somewhere. And if they hear the sound, they should proceed to a place where it's safe to pull over and look at it pulled over. Because you know, and I know, it only takes two links of an eye if that for a kid to look down at something else, and look up and end up in a bad situation in a car.
Stacey Simms 10:52
Yeah, that's a great point. I was just thinking of checking the CGM when you start the car and I think a lot of people would be okay with their kid glancing at it rather than doing the finger stick. That's a personal thing I think that parents have to decide. But what's interesting is so Benny has an app from, I guess it's from the DMV, it's probably not, it's probably from a third service that the NC the North Carolina DMV is working with. But it's an app on his phone to keep track of his hours of driving. So instead of filling out the piece of paper that my daughter did just a couple of years ago, when he gets behind the wheel, he first opens the driving app and clicks on or whatever the heck he does. And then he opens the CGM app, and looks at that as well. Yeah, so I'm really happy because he's getting in the habit of just checking something, right. He's got to pull out that driving up every single time. So we're making him look at the CGM, too, but it never occurred to me to tell him don't look at it while you drive. I mean, obviously, his phone has to be away and that sort of thing. But I can see where he would think, well, this is a safe thing to do. I'm trying to figure out what my blood sugar is.
Moira McCarthy 11:52
Yeah. Every time I mentioned it to a parent, they're like, but but it's safe because it's their blood sugar. I'm like no. You cannot let a teen or any driver for that matter. Look down at a screen when they're driving even if you feel like they're just glancing. It's in my opinion, the most important thing and driving and CGM is that.
Stacey Simms 12:13
Yeah. And just a little bit of a heads up for people who may not know. And I'm going to say this, but I'm going to give a warning, my own warning at the end. You can now if you use a dex calm, and maybe there's other CGM that will do this. You can now say, hey, Siri, or Hey, Google, what's my blood sugar, you can actually do that in your phone. However, I still be really careful about that while you're driving. I don't think a lot of teams are driving for hours and hours and need to constantly assess their blood sugar. So that's my warning is even with that. I would still not want my child constantly checking blood sugar. So I just don't think it's safe and it didn't occur to me until you brought that up more.
Moira McCarthy 12:48
The interesting challenge for you parents, such as yourself, putting Benny on the road is the good thing about a blood glucose meter and a driving teenager was I had Proof whether she had or had not checked her blood, you are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them. I don't know how else
Stacey Simms 13:13
I have an idea. contract you get behind the wheel, you take a picture your blood sugar, you don't need to send it to me at that moment.
Moira McCarthy 13:21
That's a really good idea. But I wouldn't make them I send it to you because I'm not sure that I would sit home. Let's talk about this because I don't know the answer. Will you sit home and watch his blood sugar's on his CGM when he's out driving around in the car? Huh? Well, I don't know. I think I would say no, but
Stacey Simms 13:44
Well, I'm gonna say I'm going to be honest. I'm going to say I will glance at them, but I will rely on the alarms. So I think and he and I will talk about this as it's funny to think about this as we're recording, but I think what we'll do is if he hits a certain number, then you can expect a phone call For me, not a text, you know, but maybe a phone call, but I don't think that number is going to, it's going to have to be low, you know, and just to check in on him, but I also don't want to distract him. So yeah,
Moira McCarthy 14:12
this is a good question.
Stacey Simms 14:14
But all the phone calls now we're you know, we're hands off. So but there's but it's also not legal in every stage talk on the phone when you're driving. Oh my gosh, what a thing we've gotten ourselves into.
Right back to us try figure it all out. But first Diabetes Connections is brought to you by Real Good Foods. I love this stuff. They're so easy. They're so convenient, and they're good and they're good for you. One of the fun things about going to the Real Good Foods website is not only can you see all of the products, I mean, I usually buy it in our grocery store. It's really nice to just have it in the freezer there but all of the products are online, and then you can go into recipes. And if you've heard me talk about this before you might be thinking recipes isn't the stuff pretty much ready made. It is But then they have all this fun stuff you can do with it, and different ways to prepare it and mix and match a stuffed chicken power bowl. Spicy Italian sausage lasagna. I'm not sure what this is about pizza fries and ice cream. Okay, you're gonna have to go check it out and see the recipe for yourself. They have a lot of great offers, and you'll find out what makes them so good, but you really don't know until you try them. Find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now back to me and Moira and we're working out this driving and CGM thing in real time.
Moira McCarthy 15:43
No, I think this is really good. I think we can think this through. I think that what I would do is, like you said set a parameter but also if I see it, give it a little bit of time. Like I wouldn't assume the minute I see it, that he's driving and not Although I don't know, I think the best thing I know everybody's doing it a different way now, but I think the best thing might be not to watch them from home because they need to learn how to manage their blood sugars in the car on their own.
Stacey Simms 16:15
Yeah, I think I'm still gonna have him take a picture every time I begin.
Unknown Speaker 16:20
Unknown Speaker 16:23
You just have to send it to me.
Unknown Speaker 16:24
Right? And then every once while like I would
Stacey Simms 16:27
do, you could say I'm
Moira McCarthy 16:29
just gonna take a look at that. Just show me and then you see. And also even if you never say that, he knows that you have the ability to ask him. That's the secret. I think that's a very good idea, Stacy.
Stacey Simms 16:40
Why thank you. It's you win. Please trust but verify. I'm gonna talk to Benny. Maybe we'll follow up on this a little bit more and kind of see how it goes. But when I didn't I meant to ask you earlier when you took Lauren's keys away. I'm curious because she's such a shy and retiring type of person. How did that I mean, obviously she learned from it. It was important but she she was probably pretty upset.
Moira McCarthy 17:01
She was upset, but not at me because we had that contract. And so it wasn't like I was saying, Oh, you did this and now this is your punishment. She made a decision to do something, knowing what the outcome would be. And so she was mad at herself.
Stacey Simms 17:19
Hmm. Right. I got to get a contract ASAP. Yeah, you work? Yeah, it does work. We did it for social media. I do and it definitely works. Okay,
Moira McCarthy 17:27
great. parents with kids without diabetes or learning to drive need one that like I said, I learned so much from my second kid with diabetes driving that I should have done with my first one. So,
Stacey Simms 17:37
alright, so on to the next question, which was not for me. And thank you for answering my question and letting us hash this out a little bit. So I was at an event in South Carolina recently, and it was so cute. There was a mom with a daughter who was diagnosed about a year ago, the little girl was seven. And at this event I mentioned Okay, my husband's out of town. I'm an hour and a half away from home. I was in Columbia, South Carolina. Ben, he was home alone, Benny was not only home alone, he had gotten himself a ride home from wrestling practice, he had made dinner I don't even I'd left him some food, but I really don't know what he ate. And I was not going to be home until about 10 o'clock at night. And I shared that with the audience because I had my cell phone out, just like you do with any kid just in case diabetes or not, you know, thing if your parents was the closest, and they needed to be around, and so I could make a joke about I don't know what he's eating for dinner and that kind of stuff. We didn't talk about it very much. But at the end, that parent and little girl came up to me and the little girl was like mom asked her a mom asked me Well, how old do you think kids should be when they can stay home alone with diabetes? And the little girl is so cute because she's like,
Unknown Speaker 18:40
I told you I told you I'll be old enough.
Stacey Simms 18:46
So this is a good topic because as usual, it doesn't just happen. You know, you plan for things and I should say, because I was an hour and a half away and I did this with my older child to my neighbors are great and I have friends you know? 10 minutes. away, I had two people that were on, as I like to call it, they're on hot standby, not necessarily for diabetes, but like if you can't get a ride home from wrestling, or if I don't know, lightning strikes the house, you know, whatever. Right? So what what are your thoughts on leaving kids home alone with diabetes?
Moira McCarthy 19:17
So I know that I sound like a broken record. But ask yourself what you would do without diabetes on board? And that should be your answer. I honestly did not see. And Lauren was my second child. So I did have a child that I had to make those decisions with before. I didn't see any reason that diabetes would make the answer any different. Now, the answer is super complicated, because in some states the legal question and in some states, it's not and then some situations parents are in desperate situations where they're going against something they may want to do. And so it's a complicated thing. So the way it worked for me in our town, you can take the babysitter training course when you're 11 and a half. And so that's when kids in our town between 11, a half and 12, that's when they kind of start babysitting a little. And so I backed it off from that by about a year to a year and a half. And that's when I would start like leaving them for short periods of time. Or if we were just going to a movie that was 10 minutes away. And as you said, always with you know, Mrs. Jones is home across the road, if you can't get me type of thing. And so I don't really see any reason, and maybe you can tell me what the reasons are. Why that answer would be different with a child with diabetes. And I say that I raised a child with diabetes, I fully understand all the responsibilities they have, but they should become just sort of a part of what they do and how they live and how they do all the other things that Everybody else does when they do it. What do you think? Am I wrong?
Stacey Simms 21:04
Yeah, unfortunately, I'm, I'm going to agree with you. We're going to be nice and boring here. And I did pretty much the same thing. Yeah. I quit. But I can play devil's advocate in a moment. So we did the same thing in fifth grade. And I think that's when they're 10 or 10, or 11. But it was fifth grade, specifically, that I started leaving my kids home alone. Leah was the older child. And then same thing with Benny, and it was a quick trip here or going there. The diabetes definitely made me more nervous. I would have to write it right. I think it's important to say when we're saying this, you know, it's not. I know, you're not just cavalierly, although Lauren could probably run the town by herself at age 10. You know, you weren't just cavalierly, oh, it's fine. It's fine. You have to do a little bit more. But I do think the fear is, especially with CGM, which helps but also shows you everything. The fear is the kids going to be reading a book in the chair and then just fall over people are concerned That their kids gonna play a video game and forget to look at their CGM or check their blood sugar. And they're going to collapse. I mean, let's call it what it is. People are terrified to leave their children alone because they're afraid of the worst possible scenario. I mean,
Moira McCarthy 22:12
what kind of video game?
Stacey Simms 22:17
But you know what's really funny is a lot of times, this is a real thing. Kids get so distracted. And I have one of these, they get so distracted with some of these high intensive video games, that they don't release their blood sugar's low until they stop playing, or that their blood sugar's really high. Now, it's fine, because they stopped playing and say, Oh, I really low and then they treat, right? Or they stopped playing say, Oh, I'm really high and they take some insulin. So it's not that big a deal. But I think once you see that happen, you're thinking, well, what if I wasn't home? And the answer is, if you weren't home, the kid would treat the blood sugar, right?
Moira McCarthy 22:49
And that goes to the perception that many have that if their kids blood sugar's low, and they bring them something or something that they're quote unquote, saving their lives. Yeah, and I think that they really believe that but what I always say it's kind of like saving a life sort of the same way, if someone's really hungry, you feed them. You know, I mean, I don't know of any cases of kids just falling off their couch and dying from diabetes. I know that cars hit houses randomly while a kid sitting on a couch or lightning strikes the roof or a tornado comes. In other words, people die. I just don't feel like there's that kind of urgency. Now. That's an educated child who knows how to take care of themselves. I'm not talking about a child with special needs more, or one who's newly diagnosed and has absolutely no idea or the rare rare case of the true hypoglycemic kind of where person which is a whole different ballgame and frankly, doesn't really exist in children. So it's sort of not in this conversation. But I think that if people could understand that those arrows are not even though You can make it have a siren sound, it's not really
Unknown Speaker 24:02
an ambulance situation,
Moira McCarthy 24:05
that might make it easier to do. And of course, all children are different and all children are unique. And there may indeed be a 16 year old boy who still needs a babysitter for different reasons. But just speaking in generalities, if your child has been educated about their diabetes, and they're within the age that you would leave them alone, it's more about you than about them, leaving them alone, I think.
Stacey Simms 24:28
Yeah, I agree. I agree. You're not you know, you have to decide. And I saw this at another event I went to we were talking about sleep overs, you really have to decide that your child is not on death's door when they're diagnosed with Type One Diabetes. And I know you and I both get a lot of flack. A lot of people who will not say this publicly, but will dm us and email us and tell us that we're wrong, but we're not. You have to decide that your child is not on death's door with type one, or you won't live life and this is one of those tiny little things that you may not be thinking it as you listen, but if you're reluctant to leave your 13 year old home loan? And the answer is because you're afraid they're going to go low while you're not home and collapse and die, then I don't know anybody else more who speaks this bluntly. And it drives me a little crazy. I think when we speak so bluntly, it's a little scary. But it's also honest. And it's important, because when you have this kind of fear, you have to name it. And you have to talk to your endocrinologist about it. If you have this kind of fear, you know, and just find out about it.
Moira McCarthy 25:22
It's really interesting you say this, because I've thought a lot about this in the past 24 hours because of something that was written and perhaps you can link this to this podcast this month, which is rensis new article. Yeah, about how she almost walked away from it all. And I will be honest with you, and I think this might be important to talk about in in that I know there are people out there because I'm listened to widely and read widely, who think I am just the most fun feeling uncaring person in the world because I say to them, you could move past your fear and you could do it for the sake of your child and you don't need to have this fear and they therefore Fear is so part of them, which I get that they take it as a personal affront. And I had been thinking, you know, maybe it's time for me to stop saying it. Maybe it's a different world and thank god my daughter grew up before everybody was as afraid as they are now. We were all afraid we're humans, but then I read rensis thing and I was like, no, it's okay to be blunt. Sometimes, you know, it's that old song cruel to be kind in the right measure. You're doing it for the best reasons. And and when I see parents who are so scared and so paralyzed and passing it on to their children, if they think it or not, or not passing it to the children, just their affiliate that way, it breaks my heart because I know in 95% of the cases, that doesn't have to be the case, right? Yes, yes.
Unknown Speaker 26:43
Yes. Well, I know she was saying
Stacey Simms 26:48
it is it's very difficult, but I'm glad you're sticking around. And you know, it's funny, you mentioned you are widely read, and it brought to mind this year, in the last couple of weeks. Of course, we've all seen the big excitement over control IQ with the tandem insulin pump. as Laura and I are speaking this is at the very beginning of this. So I don't have anything to say yet about our usage of it. By the time it airs, I'll probably have a lot to say. But every time I think of closed loop and this is a hybrid closed loop, I understand but every time I think of artificial pancreas more I don't even know if I've ever told you this. I remember where I was when your column came out. And I read it called something like I held hope in my hand
Moira McCarthy 27:26
is held in my hand. So it was about Anna Floreen. Oh, yes, yes.
Stacey Simms 27:30
I was at the Honda dealership in Ft Mill, North Carolina, waiting for my van to be serviced. And I was crying.
Moira McCarthy 27:41
And it was believable. That was the first time that anything that treated diabetes that way existed outside of a hospital setting. Yeah, that day and I met her for lunch. She had to stay within three miles of the hospital, but she could go out So we met for lunch. And it was the first time I had watched Anna, not have to weigh what she was eating that way with the scale. But you know what I mean? Right, right. It just blew my mind. So Wow, that's a good memory for me. I got kind of choked up when you brought it up.
Stacey Simms 28:15
Oh, absolutely. And of course, this isn't exactly that. It's not the I don't remember what software was being tested. And you still have to count carbs and do that with this with control IQ. But I think of you. And if you're not familiar, Moira and I are friends now. But I was just a fan back then reading all of her blogs and books and everything. And so I wanted to ask you, because then I don't know what year that was. But you know, you've been in this world for a long time. You know, born was diagnosed 22 years ago,
Moira McCarthy 28:43
Stacey Simms 28:45
years. 23 years ago. Two and a half. Yeah. All right. So I don't know if you can answer this question. You know, we've been into for 13. And I feel like sometimes, as you mentioned, you're thinking, well, maybe I should stop talking about it. You know, how do you how do you kind of keep on going, going going because I've I really hope you continue to do so. It's a very selfish question.
Moira McCarthy 29:05
It's a good question. And I remember a million years ago, I, I'm going to say was 1999 or 2000. So I had been in the diabetes sphere for Lauren was diagnosed in 97. And I went to my first jdrf International Conference they used to have, and there were all these people who were doing so much and were so smart and knew about all the research. And I got up and I asked the question, they were also hopeful. And I asked the question, is your hope real? I want someone who's been in this for a long time to answer is this hope real? Because I don't want to hang out find out in 15 years, like this is all just some stupid cult, you know? And this woman named rd Johnson got up, and she's very well known in the diabetes community look her up but um, she said, I think it had been like 15 years since her son have been diagnosed at that point. And I remember thinking, wow, and she's still involved. Team. I know I'm going on. I mean, I waited a year till I got involved. So it's been 21 going on 22 years. So, but I think it's a really good question. And I'm going to say that it's not easy. But I have a couple reasons to keep pushing. And most of my friends who were super involved, sort of start dropping away about 10 years ago, there are not that many of us who have been constantly involved for two, three decades. Yeah. But the first thing is that I really did make a promise to my daughter when she was diagnosed that I would try until there was a cure. And I think she would totally understand if I said right now I'm over it. I did the best I couldn't image for but that's as far as I can go. But I, I want to appreciate and respect that promise. So that's the first thing and I'm very thankful for the jdrf ride to cure because that makes it more palatable at my point to be involved. I would feel weird doing a walk to Now you know what I mean? I do and I do like riding my bike. And I like the people who are there. And I'm thankful to all the people who donate I mean, I just registered to ride like two days ago, I think I have almost $5,000 and people are so good. And then the second thing is, I have to find some positivity out of all this for me, I have the positivity for my daughter's easy. All I have to do is look at her and see her career, her life, her happiness, it's all good. But I have to get something out of this for me because raising a child with diabetes is is a lot. And I think for me what it is, is if I can share my mistakes and what I learned from it with people now and if they can believe me, then maybe I can make it easier for someone else and that makes it worth while what I went through. Does that make sense? Does that sound hokey and stupid? Oh, it
Stacey Simms 31:54
sounds wonderful and genuine. Yeah, it really does.
Moira McCarthy 31:58
It gets harder and harder. Because I know that I'm people think I'm a dinosaur, but what I understand is, I'm kind of a dinosaur, but I'm a dinosaur that's evolved. Like, I understand technology and respected and I know what's going on. Do you know what I mean? It isn't like I'm stuck back in barefoot and that was fine.
Stacey Simms 32:20
I know the trick that I know you're trying to pull here is using technology to the best of its ability to help us and not hold us back.
Moira McCarthy 32:29
million percent. Yeah, we know it's so happy. So happy.
Stacey Simms 32:33
Yeah, it's and another thing that you said that I just want to bring out if you know as you listen, a lot of newer people we mentioned control IQ. And you mentioned jdrf Moira, and I think this is just another reason to stay in the game. You may not realize as you listen, that control IQ way back in the day was called tape zero technology and type zero technology came out of University of Virginia. Maybe you know that if you listen to this podcast, but you may not know That the first funder of type zero technology was jdrf. And without the biking that you do more and the walks that so many other people do, and the fundraising that goes on, you know, the control IQ and other closed loops, hybrid closed loops, I need to be careful. You know, it's not going to happen. And I know a lot of times like, because I see the comments, people don't know that jdrf does these kinds of things. They just kind of think it springs up. But I wanted to tie all that together. As you mentioned it since we already talked about it this episode, and it's just really important to me to have that link. If that makes sense. I feel like I'm helping
Moira McCarthy 33:38
even further back from that type zero, when the very first continuous glucose monitors came on the market. No one was buying them. They weren't getting any attention. Zero insurance companies were covering it. And so at showed her up and I was one of the lead people on this. I chaired advocacy nationally and stuff like that at the time, but a whole team of us The first thing jdrf did was no company wanted to fund studies. The NIH didn't want to fund studies. No one cared about CGM. So jayda funded studies in six centers across the country, on children and adults in CGM. And those were the very first studies that showed that they would make any difference. And that's when companies started saying, Hmm, maybe we might want to invest in this product. So then companies invest in the product. And what we did is we physically and I was one of these volunteers found people in large insurance companies, because no one was covering them, and filled out their paperwork with the mic by hand, got them covered in all the big companies. So then we could say, well, there's a precedent for you, someone's been covered in your company. And that's how they got covered. So that's all I just thought that was an interesting little It
Stacey Simms 34:48
is alright, we'll have to talk to jdrf. We're going to do the Time Machine thing where we go back and talk about CGM and the artificial pancreas project and all that kind of good stuff. A great idea. Yeah. But more thank you so much for popping on and sharing some of your wisdom. We're not doing this every month like we were last year, but we'll do it here and there.
Moira McCarthy 35:07
Yeah. Thanks for having me. It's always good to catch up.
Stacey Simms 35:09
All right, and I'll be consulting your book for Benny's driving contract as soon as we
Moira McCarthy 35:14
add the CGM thing. Don't forget no looking at your CGM. I love
Stacey Simms 35:18
Unknown Speaker 35:25
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 35:31
I'll link up all the information on things we talked about at the episode homepage at diabetes connections.com. And wherever you listen to the show, a lot of people listen through social media or on apps. That episode homepage has all of the information. And starting this year, every episode has a transcription as well. So go ahead and please check that out. Isn't it funny though, how I remember that blog post and exactly where I was when I read it. It's just funny how things stick with you and I can't believe it was more than seven years ago. Now. Oh my goodness.
All right, I will have Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it's their diabetes management software. And for a really long time, I thought it was something just our endo used, but you can use it on both the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I have been checking it about once a week, I'll be honest with you, since we switched over to the control IQ software, I am checking it more often. Just because this is new, and I want to see the trends, but it really does help us dial back and see the trends and not overreact to just what happened one day or one hour. Those overlay reports help the context of these glucose levels and patterns and you can share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the best CGM systems working for us. Find out more at diabetes connections calm and click on the Dexcom logo.
A couple of days ago, Don Muchow took off running, and he is not gonna stop for quite some time. Don is running across America took off on February 1, and he is estimated to reach the finish line on May 8, he is heading east started in Newport Beach, California. And the plan is to run 2830 miles in less than 100 days. The goal here is to make the fastest to Wendy crossing to date because other people have done this. But he also hopes to compete the first ever solo run by anybody from Disneyland to Disney World. I will link up all about Don because this is obviously not his first time doing something like this, although I think this is the longest one, but man, it's wild and he's got the whole route. You can support him. You can can track him, you can join him. He is doing this with the support of many people and not least of which is coming from his wife who's driving the support van. And one of the things that stuck out to me as I was reading about Don, is that he didn't do his first five K, until he was 43 years old. He was diagnosed at the age of 12, in 1972. And at the time, they really thought it was just too dangerous. You know, there was no easy way to check blood sugar in those days. So they said, you know, skip gym class, don't do a lot of physical activity. And he says he followed those instructions for a long time. But when he was 44 years old, he needed treatment for diabetic retinopathy. And then he decided, look, it's only going to get worse if I don't make some changes. And that's when he decided to start running. Well actually started walking.
And this is a great article from diabetes forecast magazine. I'll link this up, and you could read the whole thing. But he didn't start out with an iron man. He and his wife decided to start eating less and then they started walking. He said it was boring at first, but then it got more fun, bigger accomplishments. And then he ran his first five K. And he went on from there. He eventually founded a chapter of the diabetes and exercise Alliance, which is a community of people who are really active with diabetes. And really active seems like an understatement when you're talking about crossing the country, just on your own power. There are two people with type one who have done this before we actually spoke to one of them. We talked to Noah Barnes and his dad, Noah walked in 2017 spent the whole year basically, and is holds the record for the youngest person to cross the US on foot. So I'll try to catch up with Don as he is on this journey or shortly after, but again, I'll link up all of the information because the route is there, how to support him, his there and all the dates and everything else. So I urge you to follow along and they're also posting all this stuff on Facebook to T one determined all one word, Type One Diabetes run across America. The page and he's reporting you know everything blood sugar's food, sleep, whatever you want to know. This is great. We're all behind you done. Good luck. Tell me something good.
Quick little update on Benny. Many of you have been following his injury this year he started out on the high school wrestling team. And the got pretty badly injured in October needed knee surgery. It wasn't really wrestling, it was just bad luck. So he is doing much better now. He's been off the crutches since the beginning of January, hallelujah. He's feeling great. He is dying to get cleared or ready to wrestle, but it looks like he's not going to make it by the end of the season, which is really the end of this month. But you know, it's hard to have perspective when you're only 15 but the doctor is really looking at this as a long term issue and doesn't want him to have any problems when he's 30. I think Benny would trade that right now given the choice to wrestle a couple a match. But of course, we're gonna kind of let him and luckily his coaches gonna let him either. I'll keep you posted as that goes because we were really in interested to see how he would do with diabetes. We got the blood sugar stuff kind of under control at the beginning of the season after some serious lows and some big problems with I mean, he had one practice I told you where he 75 uncovered carbs, holy cow. It's such intense physical activity. But we're more concerned and curious now about keeping gear on. Because when he actually wrestles, which he hasn't done yet, he's done it in practice. But you know what I mean, we had to figure out where to put the Dexcom the pump, he wears a tend to pump, he can just clip that off for the match. But the Dexcom is gonna be really interesting. So I'm talking to some people who are in the wrestling community. And we're going to figure this out because he will be back on the mat soon, even though the season's over the club season apparently will continue and he really wants to participate in them. So I hope it continues. It will be fun to see and I hope we can experiment with different places to put the decks and see what goes on with that.
My next trip is in March 1 weekend in March. I will be in Wilmington, North Carolina. Really excited to go to their first JDRF summit there. It's gonna be a little cool to hit the beach but Wellington's always a fun place to go hang out. thank you as always to my editor john kennis from audio editing solutions. Thank you so much for listening. I'm Stacey Simms and I'll see you back here on Thursday for our minisode
Unknown Speaker 42:20
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
Watch your language! That's what Stacey is trying to tell herself this week. When you're a parent of a child with a chronic condition, it's hard not to say things like "our diabetes" and "our CGM graph." But it's not "ours" exactly, so how do we better talk about this?
Stacey also shares her frustration as she finds herself falling into the trap of perfect numbers and trends. While her and Benny's experience with Control IQ has been wonderful so far, it's also bringing back some of that perfection trap she thought she'd left behind.
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Stacey Simms 0:00
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 1 Diabetes. Available as a paperback eBook and audiobook. Learn more at Amazon or diabetes dash connections.com.
This is diabetes connections with Stacey Sims.
Stacey Simms 0:26
Welcome to another week of the show. I am so glad to have you here! This is one of our minisodes the shorter episodes that have become sort of the editorial page. If you look at the podcast as a newscast, as I often do. That's my background. I'm a broadcaster local radio and television for many, many years before I started the podcast. So the Tuesday episodes which runs longer and usually have an interview with a newsmaker. That's the news. And then these episodes have kind of become the editorial. And this week, instead of the headline stop doing this or think about before you do that, which I've been Doing a lot lately. I'm going to talk about why I think what I'm doing is wrong. And maybe you could help me with that. I know I'm not alone. But I'm going to tell you straight up here. I don't really have the answer for what I'm going to talk about today. And this is really about parents. But I'm hoping that if you're an adult with type one, you will listen to this as well. Maybe it'll sound familiar to you, maybe your experience can help us.
So this is all about my struggle, to, in a nutshell, stop thinking about it as my diabetes. It's not I know this in my brain. My son has type one diabetes, he was diagnosed right before he was two. We have been living with this for 13 years. And sure, my family is affected by diabetes. My family has to deal with diabetes, but my son HAS diabetes. And I'm kind of exaggerating, but you'll get a better idea in a minute why I'm saying it in such strong terms, because I know this is not helpful. So I'm going to tell you a story. This story happened in December, a couple of weeks before we got control IQ, the new hybrid closed loop system from Tandem. It does tie in, I'm going to tell you about our experience with control IQ, and then how it relates to all of this.
If you've seen me talk or you read the book, you know that I'm really fighting against this pressure for perfection. And I think and it makes me laugh that a lot of people like I was just in Raleigh this past weekend talking to parents about this. A lot of people think that I now have this down pat that I know, that I that I am perfect at not being perfect. And I think what's really funny is, it never ends, right. There's no finish line to parenting, where you're like, Whoa, great job. I'm, I'm all set. right good for me. I did it. I mean, there are big milestones, like college and when your kid moves out permanently, but I really don't think that there's a point at which we can say, that's it. So we're all trying to improve. And I think this story will highlight really just What a dingaling I can be sometimes, because this stuff isn't easy, right? And we're always trying to improve. So let me tell you the story, and then you tell me how to improve.
Alright, so this happened, as I said, in early December, so almost two months ago now, Benny was right in range before bed. He was hovering right around 125. And for the last few weeks before this, he'd been dropping about 15 to 20 points overnight. That was it. Right? Just a little drop and then steady. So that was a fine number to just leave alone. But he texted me because this is how we communicate in my house, even if we're in different rooms. Right across the hall. He texted me a few minutes before I was gonna go in and turn out his light. And he texted me I feel really low. In my head looking at the dexcom I said, You're not low. You're 125 I don't want to treat that. You're going to mess up our great trend. And you're just going to go high. You're going to mess up our great numbers. I didn't say that out loud.
I went into his room and this is what I said. I said, “Really? Because Dexcom says 125. You feel low?” And he said, “I feel like I'm dropping. See now I'm 117.”
Even without the Dexcom number moving down a smidge. I knew my hesitation was selfish and misguided. Alright, it was dumb. He's not foolproof, but Benny knows his body. He has been living with diabetes for 13 years. And he felt low. And in my head, I'm like, “Stacey, come on. These are his numbers.” Did you hear me earlier when I said, you're gonna mess up our great numbers? I mean, I, it hurts me to admit that. But it's his number. It's not mine. It's not ours. So I said, “Okay, I trust you. Let me grab you a drink. Do you think you need more than that?” “Nope, just a juice box should be fine.”
Benny sleeps with an apple juice bottle by his bed. But it's it's a full like 25 or 30 carbs and he didn't need that much. So I grabbed Little can of pineapple juice, and I poured about 12 to 15 carbs, like a juice box, basically, over ice in a highball glass, because sometimes it's just gotta be fun. And in my head, I was kind of feeling guilty, even though I hadn't shared with him. I'm trying to make up for that by the splashy cocktail. So he loved that. And he drank the juice and he went right to bed. Now, I assumed I was going to hear that Dexcom high alarm pretty soon. I mean, I went to bed, but I just figured out right, I guess I just gave him 15 carbs he didn't need but instead, I woke up at 5:50am like I do every day. It showed that he had stayed between 100 and 130 all night long. He had been feeling low, he did need that juice.
While I am thankful that I didn't go into his room and say, “don't mess up our numbers” I didn't say what I was thinking out loud. It bothers me that I thought it at all. I mean, after all this time I do trust Benny with diabetes. I do respect his decisions. And I know that even though he is from perfect, right? He really is safe and happy. So why do I still have those thoughts at all? It's not about the good health outcomes. I mean, that's the first thing we think of as parents, right? We want our kids to be happy and healthy. And I would be lying if I said, Well, it was out of health concern. It was because I wanted to make sure that he felt good, and could sleep well and have a great day at school the next day. That's what I'm supposed to say. But it was about the straight-line graph. It was about wanting, I don't post them, but it was about wanting to not mess up the pattern we were on. I mean, what, would I really rather my son feel crummy and ignore what he has to say to me, showing him I don't trust him. I don't respect him to see that kind of graph. Ah, so how do we get past that?
Not only am I not answering that right now, I'm going to tell you another example of how it's now getting worse. And this is because of control IQ. First, let me say I love this system. tandem is not a sponsor of the podcast. They're not telling me what to say. Not that they ever did. But man, this is an incredible piece of software for us. I am so excited. We've had it as I'm taping the podcast, we've had it for about 10-11 days now. And in the last seven days, Benny's blood sugar has been in range 70% of the time at minimum, I think only for two days. For the most part, he's been in range with less work a lot less work. I don't think in the last seven days he has bolused for a correction, it's only been for food. Now the first couple of days we did have to do a lot of adjusting. And this is very typical. If you are on any kind of hybrid closed loop system and this is includes the DIY systems is my understanding the people I've talked to, you realize right away that most of your pump settings that have worked pretty well for you all this time are wrong. It's just that we are manually compensating for defaults. We're paying attention like we're supposed to, we're checking that Dexcom, we're poking the fingers a million times a day, right? We're really manually using the pump to get the most out of it. And not letting it run on its own. Because it's dumb, right? It's not a smart pump. Most of these pumps, most of the programs that we've had until recently, they're just a dumb brick that gives you insulin when you tell it to.
And when you switch over to the automated systems, you really have to trust and you really have to adjust. Because not only is the insulin duration all for most of us, but your basals are off, your sensitivity factors. I mean, I'm not going to go into too much detail here of all of the changes we had to make. But you do have to take your time with this. In fact, as I'm telling you this, we are still at the very beginning of making the changes here, even with those great outcomes we're seeing. I haven't changed anything in about five days. I've talked to Benny's endo, and we're going to wait another week probably just to kind of let it play out and see what really needs to adjust cuz it gets harder, right? The more in range you are, the less you want to tweak, but I know we can make it even better. But in a nutshell, we had some incredible lows like sustained under 50 lows that we hadn't seen and of course we overtreated for those. And then we had the perfect storm over a weekend of a birthday party that was an overnight party, huge dinner that he completely forgot to bolus for and then tried to make up for half an hour later at a bent canula. So that was high, high, high high for hours and hours and hours, which you know, of course, messed up my control IQ graph. And I am not kidding. Yeah, I know he was high. I know that he said he felt fine, but you know, he didn't feel great. I know that while Yes, his health is my number one concern in my little brain. I'm thinking, well, I want to show our control IQ graph and how great it looks. And I want to be like all those other people I'm seeing with their great results right away and isn't this supposed to be amazing and I want better results. And that's what I was mad about.
You know, I feel like a dummy admitting to this. But I know I'm not alone, because I am seeing a lot of my mom friends. And a lot of people I don't know, on Facebook, who are not necessarily saying it as plainly as I am, but who are definitely struggling. And sure we're struggling with the actual numbers. But I think we're also struggling with the expectations and we're struggling with our kids are old enough to do a lot of this themselves. So we're struggling now. With How do I and I'm doing this to Benny? How do I not helicopter, right? How do I not say to him five or six or seven times a day? Did you bolus? What did you do? What's going on? What do you think? How about this? Did you check? I mean, we don't talk about diabetes all that much in a day to day basis. But with control IQ and wanting to know what's going on with it, and wanting to be able to tweak it and make the adjustments. You have to talk about it. And we're out of practice. So I said to Benny, a couple of days in Look, you're just going to have to be patient with me, you understand why? If I'm driving you crazy, you have to tell me. And if you just want to give me the pump and walk away, so I can see what you did, that's fine too. But we have to find a way that I can see what's going on without driving you bananas, and that you can feel good that I'm still trusting you, I still respect you, I still think that your decisions about your body are ultimately the most important. But I need to help you with control IQ. Because at 15, and everybody may be different. But my kid is not old enough to really go through this and troubleshoot. And he's not interested. I mean, he didn't even really want to watch the training. He wants me to tell him about it. And that's fine for us, because we've talked about it now and I feel a little bit better about it.
But and I'll share another embarrassing thing. I just said that, you know, the last seven days, boy, he's been in range to 80% of the time. Well, today he's kind of struggling as I'm recording this. I'm not exactly sure what's going on. But he got to school and he went over 200 He probably ate some thing, right? I mean, it's not it. You don't have to be a genius to figure this out. And then he went back down. And in my head, I'm like, should I text him? No. Should I find out? What's going? No, you should leave them alone, Stacey, which I did. But I'm also thinking, Oh, I really hope that we're in range. But in my head, I'm thinking, Oh, I really hope we're in range more, because I don't want that 80%. It's messed up. I mean, come on. Oh, this stuff is not easy. I think acknowledging that It's troublesome to think this way, is important. I think acknowledging that I'm still going to think this way, is important. I'm trying to work it through and change it. Thank you for being my therapy on the show this week. Maybe I'm yours as well. If you have similar thoughts. I'm not really sure how to get past it, other than to acknowledge it and talk it out and laugh at it a little bit. Do you have a better idea? Do you have a way that all of us who are thinking about these lines And graphs as ours, and I'm not talking about younger kids, it's so different when your kid is two, or four or seven, or even nine. But once they're in middle school, you know, this transition, to independence, their own care for them to think about it, to take ownership of it, to know that you trust and respect to them. Even if you're questioning, I trust and respect my husband doesn't mean I don't ask him questions, right? It's a difficult transition. But it's such an important one, because soon enough, he's going to be in college and independent, and he's going to be out on his own independent, if I'm lucky. So I do think it's worth discussing, even if it's a little embarrassing.
And I was at a JDRF conference this past week that I mentioned in Raleigh, and I brought this up, I was with three adults with type one. And I mentioned I was going to call myself out on the podcast this week because of my graph thinking about it as my numbers. And their reactions were really interesting. They didn't tell me I was a terrible person. They didn't tell me I was a helicopter mom. They just said yeah, it's Gotta be tough. It's got to be hard. But it's really important to know those are not your number. It's not your diabetes. I think something else that's important to keep in mind is, this is so new, right? These closed loop systems are so new, there really isn't even a good instruction manual for how to know what your pumps settings should be adjusted to 10 history, the great job with the training, I think endocrinology practices are doing a great job with helping people but let's face it, most of us are getting advice on how to adjust this stuff from Facebook, which is not the best place ever, because I'm seeing a lot of people had a lot of highs, we had a lot of lows, the advice there is not going to be comparable, right?
So I'm going to give myself some grace. I'm going to give myself some patience. And I'm going to hope that I get better at this, that I continue to see the humor in this that hopefully Benny continues to see some of the humor in this and that I can continue to watch my language. I don't mean keep it PG. I mean to watch my language so that I am not saying my, when it comes to graphs, or diabetes, or more importantly, maybe most importantly, about how Benny feels, right? Isn't that the most important thing? I can see that number, but it's really about how he feels, how he wants to react at 15 years old, it is well, to the time to let him do that. So I hope I can continue to work toward those goals. Well, now you know why I am the world's worst diabetes mom. I really hope that if you get a chance to check the book out, you let me know what you think about that as well. It is available as an audio copy and you can get that for free. There's lots of opportunities there. I will link up all this stuff on the episode homepage. There's also a transcript of every episode beginning this year, and that's very popular now. So I'm hoping to go back soon and transcribe more of the episodes. We have almost 300 of them now. Holy cow back next week with our full Interview episodes. In fact, next week more McCarthy is back, ask the de moms is back. And we're gonna be talking about a variety of things, answering your questions, including talking about driving, because Benny just got his promise. And yeah, we're trying to figure all of that out as well. Oh my gosh, this stuff never stops. So I will see you back here for that on Tuesday. And in the meantime, be kind to yourself.
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged.
Transcribed by https://otter.ai
This week.. what is monogenetic diabetes and why should we – on a mainly type 1 diabetes podcast – care about it? The majority of people with monogenic are misdiagnosed as type 1. People like Kristin Skiados who thought she’d lived with type 1 for 38 years and her daughter Ava, was also misdiagnosed.
We’ll talk about how this could happen, what it means for the rest of us and what monogentic or MODY is all about.
In Tell Me Something Good, how a little sister’s diagnosis changed a sibling's outlook and career..
And what the heck is a diabetes merit badge? We’ve got em! (Find out more here)
Get the App and listen to Diabetes Connections wherever you go!
Episode transcript (rough transcript, please forgive grammar, spelling, punctuation)
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is diabetes connections with Stacey Simms.
Stacey Simms 0:27
This week, what is monogenetic diabetes? And why should we on a mainly type 1 diabetes podcast care about it? Because the majority of people with monogenetics are misdiagnosed. people like Kristin Skiados who thought she was living with type one for 38 years.
Kristin Skiados 0:44
It really was a phone call that was the answer to a new life. And it was probably the first time that I was speechless on the phone and the fact that That this meant there was a possibility to not be on insulin was just amazing
Stacey Simms 1:06
Kristin’s daughter was also misdiagnosed. We'll talk about how this could happen, what it means for the rest of us and what might have genetic or MODY is all about in Tell me something good. How a little sister's diagnosis changed a sibling’s outlook and career plans. And what the heck is a diabetes merit badge? I got them.
Welcome to another week of the show. I am so glad to have you along here on Diabetes Connections. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host Stacey Simms. My son was diagnosed 13 years ago right before he turned two I don't have diabetes. I do have a background in broadcasting and that is how you get the podcast. Hello to any new people joining us from the Raleigh Durham, North Carolina area. As this podcast is airing, I am just back from the JDRF type one nation summit in that area and thrilled to meet many new people and see some familiar faces. Not too long a trip for me. Of course, I'm in the Charlotte, North Carolina area, but always fun to go to those conferences, see people in person, talk about the show, talk about the book, the world's worst diabetes mom, and make those connections that I care so much about.
And this is the second time that I have taken the diabetes merit badges on the road. I am so excited about this idea. This came to be I guess it's one of those ideas that came kind of suddenly but then was also years in the making. I have always thought that we deserve like a gold sticker or a huzzah! Or hurray when something goes right in diabetes land. You know,There used to be a joke in the community that when your meter read 100 that confetti should come out of You know, stuff like that. But when I was writing the world's worst diabetes mom I even mentioned in one of the chapters when I talk about the first injection I gave Benny at home that I really felt like I had done something monumental and I wanted to you know, shout it to the world. And that's how the nighttime ninja sticker was born. So they are kind of silly. Yes, there is one that is a nighttime ninja. These are actual stickers. When I say merit badge, I mean, these are stickers that you can buy things like date night diva, which means you had a conversation without checking your CGM data 1000 times hold music marathoner finally spoke to a supply company representative dia-diplomat, calmly explained that sugar doesn't cause diabetes, insurance hoop jumper, and on and on. A lot is are geared to diabetes parents, which is obviously my perspective, but I teamed up with Rachel at diabetees who's a previous guest to the show and very popular in the community for her amazing shirts at her great Etsy store. So I'm going to link up in the episode homepage and on social media, more about these stickers, you can buy them in batches. I also have a sticker that's not in the Etsy store yet. And it is wanted for not waiting. It's the DIY cowboy sticker. Because that is for my friends at night scout and all of you who are not waiting, we're gonna do something fun with that, maybe a fundraiser for them. We're still working out the details.
As I said, this came on kind of quickly. I decided in December that this might be a really fun idea. And I called Rachel and she was like, Yes, I'm in and I gave her a bunch of the ideas. And she came up with a couple of them herself. And then she's a genius when it comes to the pictures and the drawings and it really came together beautifully. So right now, there will be a link in the episode homepage. Diabetes Etsy store is the only place you can buy the stickers right now. And I have them on my book tour and Rachel as she goes out and about the conferences, she will have them as well. I'm really excited about them. They're very funny and silly and just a little bit of a pick me up. And if you have ideas for these as you see them and you can see all of them and her Etsy store, let us know we will definitely add as we go if they're popular and people really want them. Love to hear what you have to say
A quick note, this interview is longer than usual. But it is a very complex, frankly, and a very interesting subject and I didn't want to stop talking about it. So I'm doing something a little different. For this episode, we're going to do about half the interview. Then we'll go into our Tell me something good segment. And then I'm going to pick the interview back up. You can always listen to episodes on your own schedule, of course, but I just felt this was a really nice way to lay this episode out with an interview. That by itself is more than 45 minutes. Regardless, the whole thing will be transcribed on the episode homepage. I am thrilled people are loving the transcripts. So if you are one of them, please reach out and let me know. I'm so excited to finally be able to offer this I know a lot of people wanted it Thinking about trying to go back and do more episodes in the past, we shall see.
All right diabetes Connections is brought to you by Real Good Foods - high protein, low carb, real ingredients. easy to find in a store near you, you can just go to the website, click on that store locator. Type in your zip code in our area. I can find them at Publix, Harris Teeter and at Walmart. And if you'd like to order, their website is fantastic. Lots of great options. I mean, all of the options are on the website. Great breakfast sandwiches, grain free, high in protein, low in carbs, because they use ingredients like cauliflower instead of processed flours or processed starches so you don't get those weird sounding ingredients or weird preservatives. And you can find the list of ingredients right online very easy for the all of the ingredients are on the website, find out more, go to diabetes, connections dot com and click on the real good foods logo.
My guests this week are here to talk about monogenetic, diabetes The type of diabetes caused by a genetic mutation. There are about 10 different types of diabetes that are genetic like this. And we are talking about a specific one today. These are all very rare. Together, they account for about one to 2% of all types of diabetes, but they are very often misdiagnosed, and usually misdiagnosed as type one. If you have monogenetic diabetes, you almost always don't need insulin, you take oral medication, so it is a big deal. Now I have to admit, I struggled a little bit with this interview. I remember vividly researching, when Benny when my son was diagnosed, I was so hoping that it would be monogenetic, MODY or something else. And I struggle now, because there's not an easy test for this. You can't just call your doctor and get a quick result. As you will hear it is more complicated. So as you will hear me ask, what are we supposed to do with this information right?
My guests are Kristin Skiados who lived with type one for 38 years before genetic testing showed she didn't actually have it. And we'll hear briefly from her daughter, Ava, also misdiagnosed for years. And Dr. Tony Pollin, a Board Certified genetic counselor, a human geneticist, and she works with the mano genetic diabetes research and advocacy project that is aiming to get universal access to diagnosis and individualized treatment. So here is my interview all about monogenetic diabetes. Dr. Pollin and Kristin, thank you for talking to me. I am fascinated with this and I'm so excited to learn more. Thanks for spending some time with me.
Dr. Toni Pollin 8:43
Thank you for having us.
Stacey Simms 8:46
Let me start with with you Dr. Pollin, let me just ask you, what are we talking about here? You know, I know people we know there are different types of diabetes. But what is mono genetic
Dr. Toni Pollin 9:00
So if you just kind of, you know, break down, monogenic, you have mono, which is one, and then genic, which is gene, what it means is that there's one gene that's really important in certain cases of diabetes. And we actually know that almost all diabetes is highly genetic. It has a lot of hereditary influence, you know, so their genes, their variations in our DNA that we inherit for from our parents that act in concert with other factors to determine whether or not we get diabetes and whether or not we get type 1 diabetes, or type two diabetes, which even itself is a lot of different diseases. But for some cases of diabetes, the genetics is actually a lot simpler. There's some very specific change, like a misspelling and a gene that causes a person to have diabetes makes them very, very likely to have diabetes really explains most of it. So when we say monogenic, we mean that the cause of the diabetes can largely be explained by a change or difference or mutation in one single gene and that person,
Stacey Simms 10:07
and how is it treated?
Dr. Toni Pollin 10:08
how its treated is it depends on the type. So it's going to sound a little bit contradictory because I just said monogenic. But there's actually several different forms because depending on the individual, they might have their several different possible genes that can be involved. But when an individual has monogenic diabetes, it's one gene. Again, that's explaining most of their diabetes. And so depending on the type of diabetes, the treatment will vary, so some types of monogenic diabetes, the diagnosis doesn't make that much of a difference, but the one that's ones that were most interested in and actually the most common types, that does make a difference. So there's one type of monogenic or one kind of group of types of monogenic diabetes called maturity onset diabetes of the young, and that sounds like a strange name, but that was an observation made in the 70s 60s 70s even earlier, when it was realized that some children had diabetes that looked more like the type that older people got. They didn't need to be treated with insulin and they actually some of them responded really well to oral medications. And so getting back to your question, which is how is it treated? Some people with certain kinds of monogenic diabetes called sometimes these types are called Modi, three and moody one, and they're caused by genes and changes in genes.. And those are treated with low doses, a very old class of drugs called sulfonylureas, and these are drugs that help the pancreatic beta cells to make and release insulin,
Stacey Simms 11:44
those medications is that like Metformin or these oral medications?
Dr. Toni Pollin 11:48
There are medications but what's interesting is back when these types of diabetes were first discovered, when it was discovered that you know you had these children who didn't quite fit either way, they were kids They were part of the way they why and maybe part of why they call it maturity onset diabetes of the youngest because they responded to the medication that was used in adult diabetes, Metformin did not exist. Back in the 60s, there was only one kind of oral medication, there's only really one medication besides insulin that could treat diabetes. And that was a class of drugs called sulfonylureas. So that's things like glyburide, and other drugs like that. And what those drugs do is they help the body to make insulin. They help to stimulate the body's capacity to make insulin and to secrete the insulin and really they said stimulate the body's capacity to secrete the insulin. And so the drug Metformin is is among many drugs. And sulfonylureas still use, but Metformin is actually safer. And so and it's, it's often the first drug that's tried and type two diabetes. The problem is if you think somebody has type two diabetes, and they really have one of these modes, These are these transcription factor types of diabetes, then they won't respond because their problem is in secreting insulin. Metformin helps you to respond to insulin. Metformin is what's known as an insulin sensitizer. So,
Stacey Simms 13:12
but I took you down that road because I mentioned Metformin.
Dr. Toni Pollin 13:15
So that's fine, though, because that's important. And that's actually ironically, one of the reasons why a misdiagnosis is even more of a problem today than it was a long time ago, because it used to be that people were treated with the type of drugs that actually work with monogenic diabetes. Yeah, so yeah, so but that's just one of the treatments. Now, there's another whole kind of class of monogenic diabetes that doesn't actually require any treatment. And so this is due to a partial deficiency of an enzyme called glucokinase. That kind of tells the pancreatic beta cells that there's glucose around and catalyzes a chemical reaction to people who have that form. They actually have a lifelong Mild hyperglycemia that if it doesn't have any other causes, then it's it's largely benign. And it actually doesn't respond very well to treatment. So knowing that you have that form, which is called glucokinase diabetes means that you could discontinue treatment.
Stacey Simms 14:16
All right, Kristin, let me bring you on because you lived with what you thought was Type 1 diabetes for a very long time. Can you tell us your story?
Kristin Skiados 14:26
Yes, I was diagnosed at the age of five, back in 1980. And I had all the classic symptoms of type 1 diabetes. As a matter of fact, when my parents didn't know what was going on with me, one of my friends moms was a nurse. And she said, geez, yeah, I think she might have diabetes, and I ended up in the hospital and the very high glucose. they diagnosed me immediately with type one, and I was put on Matter of fact, I was put on purified pork insulin, and then move to bovine and, and I stayed on insulin for a better part. Love for 38 years. I didn't move on to a pump when I turned 25. And life was just normal for me. I don't ever remember not being diabetic. And I think that was a good thing. I was so young when I was diagnosed, and I don't know what life is like, not having it. And I know it was an adjustment for my family for my siblings, because, you know, my mom made them do all the same things I did minus the blood sugars and the insulin. But they had to eat it and they had to have snacks and they had to get up early to and it just became a norm in our house. Yeah, I went to college, I did all these great things, traveled, played sports, got married my husband and had two kids.
Stacey Simms 15:57
Alright, so fast forward then. So Your daughter Ava, who is now 11. She was diagnosed with type one as an infant. And I imagine that that was, you know, devastating not only because you you've already been through it yourself, but she was so young she was 15 months.
Right back to Kristin in just a moment, but first diabetes Connections is brought to you by one drop, one drop his diabetes management for the 21st century. One drop was designed by people with diabetes for people with diabetes. One drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning one drop mobile app, sync all your other health apps to one drop to keep track of the big picture and easily see health trends. And with a one drop subscription you get unlimited test strips and lancets delivered right to your door. Every one drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your doctor visit, your personal coach is always there to help, go to diabetes, connections calm and click on the one drop logo. Now back to Kristin, talking about her daughter's diagnosis.
Kristin Skiados 17:17
You can have a little bit of the same classic symptoms that I had. A few things were different. And when I kind of looked back on it in hindsight, there were signals kind of all along, I think, you know, she had thrush in her mouth as an infant a few times. She always had yeast infections, diaper rashes. When I look back on it, we're like, oh, maybe this was the manifestation of this but when she was 15 months old, she was still 17 pounds. She was eating a ton of food. I mean, she was the top of the zucchini, whole sweet potato, half a chicken bread. You know drink milk yogurt. Then two hours later, we're drinking more milk or having more yogur getting up in the middle of night. He wasn't excessively peeing all the time. You shouldn't have frequent urination. But she was just underweight. You know, she was the amount of food she was eating didn't match what her weight should be. So I kind of had it in the back of my mind. Well, maybe she has diabetes. She had bronchitis before she turned a year old that we went and we got the blood work done. And her fasting glucose was not actually overly high. It was in I think, the 200 but she was diagnosed as type one. And we had compounded insulin, they had a you know, dilute her insulin because of her at her knees and, and it was devastating in the fact that this was something I never wanted her to have, you know, so there was this mother's guilt of my gosh, you know, she got this from me. And that was Very difficult to deal with and, you know, not so much myself having diabetes, but now my daughter was going to have to do the same things I have to do. And her life wasn't going to be normal. And we had to say goodbye to that normalcy was almost like a death. You know, it was the life that we knew was now gone. And we had to readjust and, you know, her insulin had to be on ice. I had to be cold all the time. So we were always walking around with our refrigerated bags, we have tons of ice packs,
Stacey Simms 19:33
is it because it was diluted it had to be cold,
Kristin Skiados 19:35
okay, and in where we live, we don't have compound pharmacy, so it had to be shipped from Baltimore. Well, and it's the same thing my parents went through this this everything's turned upside down and falling in her blood sugar's every night 7pm constantly changing insulin to carb ratios and, you know, she was on shots and half unit so you know, trying to draw half Unit insulin doses and it was overwhelming. And this is coming from me who's lived with diabetes. It kind of knows more than the average person, you know, but even still, it was a huge adjustment. It was really, really hard. It was a hard pill to swallow life. Now with two diabetics in the house. A lot of care went into Ava, you know, I kind of put myself on the back burner for a little bit trying to manage her and manage me and it was a challenge and being that younger son couldn't communicate with me,
Stacey Simms 20:33
right? That's so difficult. So when in this journey then because here we are talking to you on a podcast about mono genetic diabetes. When did you find out what she really had
Kristin Skiados 20:46
said we were at one of her just regular checkup appointments at University Maryland and Medical Center, and Ava's nurse. She had presented us with this study. Asked if we wanted to participate. And I spoke on behalf of Ava and said yes. And being a biologist myself. I thought monogenic diabetes. And when Ava was diagnosed, I kept saying, How does she get type one like there is that genetic component to it, but for type one day, I think to be passed on Dr. Paul, and you can certainly correct me if I'm misspoken here, there's a lower percentage of inheritance rate for type one computer, obviously, money. So I can see, you know, all the research at the time when she was diagnosed with stem cells, stem cells, stem cell, I wanted genetics, genetics, genetics, and nobody was doing genetics. And so when this opportunity came about, I was like, Yeah, I want to find out more about this. I'd never heard of monogenic diabetes. And I started reading up on it and I thought, This is what I've been looking for. This is what I wanted now. So we entered Ava into the study, and got our blood work done and just waited for our results.
Stacey Simms 22:06
And how old was she at the time?
Kristin Skiados 22:08
She just turned nine.
Stacey Simms 22:09
Oh, so this has been going on for a very long time. This is her whole childhood. And Toni, let me ask you, I understand, how do you live with what you think is type one and it's really something else. I mean, is it dangerous to be on an insulin pump? Is it dangerous to be treated like a type one when you when you actually have something else?
Dr. Toni Pollin 22:31
Well, in some cases, it's not necessarily acutely dangerous, you know, because the problem in all diabetes is the problem with blood sugar. And in certain types of monogenic diabetes, it's because you're not producing enough insulin. You can treat it with insulin and that'll be okay. But there's a couple of reasons why it would be preferable not to do that. And one would be of course, as I think Kristin and Ava will be able to tell you about Better than I can that most people seem to prefer taking a pill to wearing a pump or doing injections. But the other thing is that when you think about, you know, just think about anything that you have wrong with you. It's almost like you know, you can put a bandaid you can kind of treat it superficially, or you can treat it in a more in a kind of deeper way you can treat the underlying problem sometimes not everybody, but for some people, they might be fine on insulin as Ava and Kristin were, but you might be able to be even better if you're treating the underlying problem.
Stacey Simms 23:31
Alright, so let's go back Kristin. Ava's nine, you get the results. Were you both in the study or did Ava get the results in that? They said, Hey, Mom, we better check you too.
Kristin Skiados 23:41
Well, you know, when the study was first presented, I said, Hey, can I get in and they said only if Ava's positive and she presents a mutation. So she had her blood work done in May and we got the official diagnosis on December 5, and I get it. Like I always get choked up talking about that phone call because it really was a phone call that was the answers to a new life. And it was probably the first time that I was speechless on the phone with that with Dr. Three, and he had called me with the results. And the fact that this meant there was a possibility to not be on insulin was just amazing. When we were going through this study, we never really presented much to Ava, because we didn't want to give false hope. You know, we didn't want to build something up that might that may or may not be when we were going through this. You know, we just said what we're going to see if your diabetes can be treated differently. When we got the news that she had kcp diabetes, often known as MODY 13 this is one of the forms Where you can take sulfonylureas instead of insulin. But that's it, you know, it's a 90% success rate of 10% failure rate. So that was something that we didn't want to, once again get our hopes up with her. So we were very cautious with how we proceeded through this whole thing. You know, the news of her having this mutation was amazing. It was probably one of the greatest days of my life. And then that meant Hey, I get in the study to I was I was really happy about that as well. Ava came off of insulin within two weeks of taking the globe, your eyes is still on your reality. But it wasn't an easy process. It wasn't like just start taking a pill and come off insulin. You have to wean yourself off of it. She she had a difficult time she was low. Miss the time like in the 30s. It would take hours to come up I've had to like leave work and pick her up in school and Then you know, at night she'd be, you know, 400 and, and it was kind of like being in that first diagnosis stage all over again with CGM going off and we got her regulated and she's great. Her A1C was just recently like 6.2 I'm sorry. 6.9 she corrected me. I'm sorry. 5.9 Her A1C was 5.9. Yeah. She responded immediately to it like a one See, Why's she was down. Within two weeks of coming off of insulin. Her agency was down into the under seven,
Stacey Simms 26:38
right and this 5.9 is now what two years later?
Kristin Skiados 26:41
Stacey Simms 26:43
And what happened was you did what did you get that phone call? What was that? Like?
Kristin Skiados 26:48
I got a call from Dr. Street in February I think was right around Valentine's Day. And you know, she called and told me that I had the same mutation and It was, you know, once again that see it was like hitting the lottery. It was just something I couldn't believe I was hearing, you know, and of course, you know, the emotions come into play with it. And I thought when she was diagnosed with diabetes, I felt incredibly guilty that I had passed this disease on to her. And now when I look at it, I am so happy that if I pass anything on to her disease wise, thank goodness it was this because if she could still be on insulin, I could still be on insulin. And we're off and it's, it took me about a month to come off of insulin. I had a couple things working against me in this process. First off was my age. I was in my 40s to I think that oldest documented patient in literature was about 36. Oh, so there's a quite a bit of an age difference there. And plus I had died. I was on insulin for 38 years. Compared to another documented case, I think where it was significantly less, you know, so that 90% success 10% failure was pretty heavy for me because I wasn't necessarily responding to the medication as quickly as Ava did. I was kind of not having any lows. And I think Finally, like when I had my first low, I think I was in my classroom teaching, and my students were like, you know, what's wrong? I said, My blood sugar's low. And they're like, Oh, yeah, what do we do? I go, nothing. This is great I with them, because my students had kind of followed me and Ava kind of through this process. And I was like, No, this is I need this to be low. And then it took me about a month I came off of insulin essentially, it was April 28, is when I came off of insulin and I just had my A1C done, and I'm 6.5 Right now, and I take my glyburide twice a day Ava takes it three times. I know that my endocrinologist at Hopkins was shocked that I had a form of monogenic, and he's pretty keen on picking up things like that. But he said with my particular mutation, to KCNJ11. Geez, it mimics type one. And it's harder to identify a KCNJ 11 compared to that of a of a type one because they do mimic each other.
Stacey Simms 29:34
Let me stop you just for a second. Toni. I have so many questions. I think you know, my first reaction as a mom of a kid with type one, it goes back to this first days where we're all thinking, couldn't this be something else? Isn't there another possibility? And I remember find it I found MODY and I found other types of diabetes and I asked my endocrinologist and he said, Stacey, I really wish That he could just take a pill, but this is type 1 diabetes. So am I now supposed to go back or all the parents and individuals with type one listening to the podcast? What are we supposed to do? Should we go back and demand these tests?
Dr. Toni Pollin 30:15
So this is the really hard thing. So a couple things. One of the things that I do worry about and kind of want to temper is that, you know, of course, most people with a diagnosis of Type 1 diabetes actually have type 1 diabetes. And the the study that Ava and then Kristin were in the purpose of that study was really to find a realistic way to make sure not that necessarily every person with diabetes gets tested, but that every person with diabetes gets considered as a possible candidate based on certain red flags that clue you in so there is more overlap, I think that people realize and how people with different types of diabetes present and the resist study done. I sort of always knew this anecdotally, I come at this from kind of a unique perspective. I trained as a genetic counselor, and then went to Winton, and became did research and did a PhD studying the genetics of type two diabetes. And I realized that we had a lot of things we were promising about what would happen when we understood the genetics of type two diabetes and realizing that actually, with some of these monogenic forms, if we could just find the patients, we could already make a difference in their lives. And so I began to realize that it just often wasn't considered, or it was considered so rare, as long as not to exist.
And then in 2012, there was actually a study published that was a study called the search study where they were trying to find all the diabetes, what caused diabetes and in a whole bunch of children at different centers in the country, and they found that you know, at least 80% of the time or more monogenic diabetes or specifically MODY is misdiagnosed, as either type 1 diabetes or type two diabetes, it can be mistaken. There are clues that you can look for. So how did Ava and Kristin end up in our study, when you know their own doctor didn't suspect them? So one of my team members I happen to have on my team, a mate, I'm not sure she may be the only physician who's double board certified in both endocrinology and medical genetics. And as one of our strategies, we had several strategies for identifying patients and trying to find ways of identifying patients and medical systems. One was using questionnaires to have simple questions for the red flags I'm about to tell you and also getting referrals. But also she just started she started to actually look up in the charts of patients who were coming for treatment for their next appointment to look for these red flags. So the one of the red flags we were looking for was children who are diagnosed before the age of 12 months, because we actually know that if they're if you're diagnosed before the age of six months, which is very, very Rare, the overwhelming majority of those cases are monogenic and not type one. It gets more and more likely to be type one as they get older, but the sort of gray zone, one of the things we were looking for was any children diagnosed before 12 months. Well, Dr. Street and saw Ava was coming in, she was diagnosed at 15 months, it was kind of Gee, isn't that you know, that's, that's pretty young. That's kind of borderline, you know, you sort of the line kind of creeps up, because you want to make sure you don't miss anybody. Then when we realize too, that, as Kristin pointed out that her mother also had type 1 diabetes, even though it's diagnosed with a little over age, that raised the suspicion. So that's actually one of the things they look for is when you see type one being transmitted from generation to generation, it happens and there's definitely an increased risk of children. But if it's monogenic, then the risk is more like 50%.
So those are one of the things what's really important is that if it's type 1 diabetes, usually not always, but usually there are antibodies that indicate the autoimmune process. That says that the beta cells are going away, they're being destroyed by the immune system. But you have, especially the right antibody tests, and you don't have those antibodies, that's a red flag, it could still be type 1 diabetes, but when you get anybody's tested and you don't have them, then it raises the chance. The other thing is that the longer the C peptide persists, that also raises the suspicion because you know, C peptide, is a measure of whether the pancreas is actually producing insulin which you can measure even if a person is taking insulin injections, because it's it's the kind of byproduct of insulin that's produced by the body. Those are the kinds of things they look for sometimes somebody is we also look for people this has a really good likelihood of picking people up people who are diagnosed with diabetes, but it's not type 1 diabetes, like it's somehow it's known not to be type 1 diabetes, says Lena we might see some diagnosed with Type Two Diabetes at 25. Especially especially person is not overweight, not obese. So there's just see these sort of a typical situations that raise the suspicion. So you know, there's these characteristics. And we turned out that was our best characteristic for picking people up diagnosed with non type two diabetes and then we can non type one, then we confirmed it by looking at the antibodies and C peptide, then got hits is just, if you think about a physician who sees thousands of patients with diabetes, they're going to start to kind of notice like this one really looks a typical. So people start, you know, just noticing something a typical and sometimes it didn't always fit with the exact characteristics that we were looking for. But it almost fit and it sounded like it could be it sounded like you know, basically this is, you know, a child who maybe doesn't really need insulin.
I mean, there are cases published there's an actual case report published of adolescent rebellion leads to diagnosis of monogenic diabetes because a teenager decided to stop using his insulin and was fine. And so they suspected. So I think earlier when you asked about, you know, what's the consequence of being on insulin when you don't need to be, I thought you might also ask, you know, why is this? Why are so many people you know, not correctly diagnosed. And that's it that there's some people not knowing about it. But then even if people know about it, then there's a lot of overlap. But there are these things you can do. There's a way you can put out links, but we've started to develop resources to help those patients and providers to start to think about it. And there's a website at the University of Exeter, where they have a calculator, where you just put in really basic information like hva watse. And whether you have a parent with diabetes, and it actually gives you based on their own database, the percent chance that someone you know, might have a mutation in one of these genes. But you know, as you can hear, no matter what you do, it's just not always straightforward. And that's what we'd like it to be.
Stacey Simms 37:00
I just and this may sound very ignorant, so pardon me, I can't wrap my brain around the fact that we're all supposed to be so careful with insulin, right? And people are terrified to, you know, to give too much. And yet you got 4% of people with diabetes who don't need insulin necessarily, who are taking it every day and not having these terrible adverse effects. I guess my question is, I'm almost more confused. I might. So not everybody is supposed to get into the testing, but you could be taking 40 units of insulin a day, and have monogenic diabetes, not need the insulin and not know it.
Dr. Toni Pollin 37:38
Right. So when I say not everybody should get genetic testing. I should probably rephrase that if there were a way and I believe there will be in the future for everybody to have genetic testing, then it would make sense got it, people if you know, I'll probably a lot of your listeners are, you know, podcast listeners are probably listening to some of these genomics podcasts. And you know, we're we're now at the point where more and more people have their whole genome sequenced in many of our kind of visions of, you know, what is genomic medicine look like, people often talk about, oh, I want to, I want to have genetic testing to see what I'm at risk for, I want to have my genome sequenced to see what I might risk for. But what I see is in the future, when everybody has access to their genomic data, then it could just become a very routine thing, where, you know, you get diagnosed with diabetes, and they run a bunch of tests, because forgetting about MODY, there's still tests to run to figure out what kind of diabetes you have, if you're, you know, if you're kind of on the border, if you're 29 years old, you're a candidate for type two, your candidate for type one, especially if you're, you know, if you're overweight, you know, some of these other risk factors. So in my dream, everybody has very ready access to their genomic data. And so so if somebody is diagnosed with diabetes, then you'll be able to run an algorithm that will pull up whether there are variants in any of these genes. It's just that we're not there yet, and it's still, there's still costs associated with doing genetic testing. So what we are needing to do right now kind of till we wait till the genome era is that we really need to pay attention. I think a lot of what we need to do is, is we need to, I think stories are the key. So that's why I was so excited to come on here with Kristin and Ava. Because I think that every story is different. And I got interested in this, for the reasons I said that I realized that there was a way that genetics could be used to help. And I A lot of what I knew was just from reading journal articles, but as I got started, you know, got funding for research and started doing the research and started talking to patients, I kept learning more and more nuances. And so I think one of the keys is just finding out I think there's a whole lot to this that we don't know because we don't know the full extent of the patient lived experience, but when we do that will help us to help other people.
Kristin Skiados 39:51
I would have never known I was a monogenic diabetic, had it not been for Ava because my people Parents don't have diabetes, there is zero history of diabetes in my family. So if it weren't for Ava, having diabetes, I would still be on an insulin pump and I would still be taking insulin and probably spend the rest of my life on insulin. So I'm very grateful, of course to my daughter for having diabetes is a weird thing for a parent to say. But when you when you look at, you know, the scope of kind of what's happened in our life and what and how we went from, functionally a pancreas that's because that's what our life had changed to, we kind of stopped being human, and we started being in Oregon. And there's not too many chronic diseases out there where you actually have to do the job of the organ that isn't working. And that's and that's what diabetes is and you become your band, forget, you know, but manipulating the pump and the shots and everything. To go from being a pancreas now to being a person, again, it's a pretty amazing thing. But once again, my position that I was type one the whole time. So if it weren't for Ava, being in the study, this would not be in my life today, being insulin free and on medication. hopefully at some point, people will have access to their genome to identify things like this so that you know, another person doesn't spend 38 years of their life taking insulin when they don't need to.
Unknown Speaker 41:40
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 41:45
Much more to come. We will continue with our talk. The second half of the interview is coming up, including my chat with Ava, Kristin's daughter, and I want to let you know that if you're thinking what are my chances, what are my child's chances of actually having managed genetic diabetes, there's a short quiz you can take to see if it is worth talking to your doctor about this. And I am going to link that up on the episode homepage. It's just a couple of questions. I took it and really doesn't seem like it is worth it to talk to our doctor, but you can take it for yourself and find out more diabetes Connections is also brought to you by Dexcom. And you know, we started with Dexcom back in the olden days before share. So trust me when I say using the share and follow ups makes a big difference. And I'll tell you how long ago we started. We were cleaning out some things and Benny came running into my room and he's like, remember this and it was the share cradle. That's what for you new people. That's the only way we could share for a little while was plugging the Dexcom receiver into the share cradle. But you know, it makes such a big difference when you can see those numbers right. And you have to set parameters, at least we do about what I'm going to call him how long to wait. You know not to overreact to everything. It really helps us talk and work about diabetes less if you had a sleep over or away on a trip, it gives me so much peace of mind. And I really like that I can troubleshoot with him, because we can see what's been happening over the last 24 hours. And not just at one moment. Internet connectivity is required to access the separate Dexcom follow app. To learn more, go to diabetes, connections calm and click on the Dexcom logo.
Time for Tell me something good. And I got a great message via Facebook from Christina and she writes, “I have a good news story for you. My older daughter Natasha, who is 24 has been a great help to her younger sister rose, six rows was diagnosed three years ago. And Natasha has been there for everything. The hospital stay the classes and everything in between. She is busy with her own life, but always had time for us and her little sister because of her sister who has type one And her brother who has Crohn's, she is getting her master's degree to become a dietitian.” Christina, thank you so much for sharing that. Thank you for the great picture that we will share on social media. You know, we know that any chronic condition is tough on the family, and it's tough on the siblings who don't have it, right, because everybody's life is affected. It is hard stuff to go through and make the siblings feel included. They get so much empathy and understanding, but there's can be a lot of resentment and normal bad feelings, too. I think it's important to acknowledge that. So I really appreciate you sharing this and all the best to Natasha, she goes forward in her studies Keep us posted.
And Christina also added and I'll put the city but that's very self promotional. But Christina added that “I want to tell you how much I appreciate you and your podcast. So many times. I feel like I'm living in my own world with this crazy diabetes. I listen, and I instantly feel better. Thanks. Keep up the great work.” Well, Christina, you just made my day. Thank you so much. For that, you know, I gotta tell you, it's so selfish to do this podcast because I do it and I instantly feel better. It's really just a nice way for me to be connected to the community. It's really it's not a one way street here. So thank you for that very, very nice note.
All right, let's get back to our talk on moto genetic diabetes. This is the second half the interview, and we're going to pick up here with a few words from Ava, who was initially diagnosed as a baby. But a study found that at the age of nine, she didn't have type one at all. And I want to let you know here, she talks about her insulin pump and her elementary school experience. And while everyone is different, you'll understand in a moment why I'm saying this, but this did not match our experience at all. And I think it's really important especially if you are newer to an insulin pump or considering one for you or your child, that if your child is being excluded, or cannot do certain activities with an insulin pump, or is being told they cannot. The staff at that school needs better education and It's a great idea to talk to your educator or your endocrinologist or even your pump Rep. To say, my child can't do this with this pump. How do we work around it? Because as you know, if you listen, having a pumps and stage two with tubes, pumps, and he never stopped my kid from doing anything. All right, so let's pick it back up. And here I am. I am talking to Ava, when your parents told you that you actually didn't have type one. But you had something else. Do you remember what you thought about that?
Ava Skiados 46:29
I thought that it was worse, because my mom just told me that I didn't have type one, but I thought that it was a lot worse.
Stacey Simms 46:38
And then they explained that it was good, just going to be different. And did you feel better about it pretty quickly.
Ava Skiados 46:44
I yeah. It took like an hour before they told me that I just fell off of insulin.
Stacey Simms 46:51
Do you remember? So it's been about two years. I'm curious if you remember what it was like to take insulin and where an insulin pump
Ava Skiados 47:00
actually change my site every three days. And when I had to wear the pump, I had a cord. And it got stuck on things. And I couldn't do much physical activity or I could, but like I couldn't do certain things in gym, because it was off the little hack that connected to my catheter, or my pump was all about and a disconnect that way. So I couldn't do many things that other kids got to do. So just kind of like left out and sitting on the lawn, Jim.
Stacey Simms 47:36
Oh, well, that stinks. Tell me what you do. Now, you don't wear an insulin pump. You take a pill a couple of times a day.
Ava Skiados 47:43
I take the post three times a day. And every except for the fact that I can do more things that I couldn't do. I can go without I can just do Without leaving, as my mom can get a card calculated is this and I need to put it into my
Stacey Simms 48:09
your mom talk about what it was like before cuz you know she thought you had type one also?
Ava Skiados 48:16
Yeah, I don't talk about it. No one really brings it up. But if someone brings it up and asked me like how it was before I came off as one. I don't really like to talk about it but I can stuck with how I was before. Grab your eyes.
Stacey Simms 48:34
Do you mind me asking why you don't like to talk about it? It's okay if you don't even want to answer that.
Ava Skiados 48:39
Because I couldn't do a lot of stuff in school. When I was in like third or fourth grade, that's when I finally come off. But when I was in kindergarten through about third or fourth grade, I couldn't really do the last one. I couldn't do many, like I it was hard to do a play that I was it. They had a microphone and my side too, but it always got to hold on to the microphones. We had to readjust it regularly.
Stacey Simms 49:17
Have you sat down and talk to each other about how extraordinary this all is? Because it's hard I think when you're the people in it to see.
Kristin Skiados 49:26
Well, you know, when we were presented with the study option, you know, they thought like, Oh, we have to go we have to get blood drive. She was like, No, I don't want to do that they go you know, but you have to understand not only can this help us but you know, it can help other people and really, when we started getting involved with Dr. Poland through med rapid going to the French for life conference that you know, I totally event that, you know, what we're doing is helping other people. We're giving other people People the potential opportunity to experience life without insulin. And that's the beauty of medical research. And I've done a lot of different and participated a lot of different research studies, where, you know, we kind of get to see the outcome of that. And I and there's an intrinsic value to doing things like this and to talking about it tends not to talk about as much as I do. But yeah, like we've, you know, we've talked about, you know, why we're doing this, and you know, why we're doing the podcast and why we went to Florida. And that was one of the most fantastic diabetes conferences I've ever been to, and why we're sharing our stories because there's other people out there like us, and you know, she's 11 and, and she's in her little 11 year old world, and I'm not sure she really kind of sees, you know, the outcomes of what we're doing. I don't think she's going to really realize that until she's a little bit older. See, wow, you know, there's people in my high school that have monogenic it, you know, when she I think she begins to meet other people that have a form of monogenic?
You know, when I was type one was diagnosed with type one, I was the only person in my town. And I was one of only like nine kids in northeastern Pennsylvania with Type 1 diabetes. So talk about being kind of your own being in a community. Everyone knew I was diabetic at the age that I'm at now and I'm a teacher. Every year I have the diabetic kids, they put them in my class, I think the conventional other diabetics, put them with sciatica, pain, you know, and even got a couple kids in her class that are type one, you know, and so you kind of feel that you're not alone, that you're not just this person with this one illness that, you know, doctors, you know, can treat but it's hard to manage. And I think that as we're moving forward with the research that Dr. Poland is done, that There's going to be a shift where Ava is not going to be the only monogenic, diabetic patient or kid in her school, or in our county, you know, or in Southern Maryland as a whole. Hopefully we'll see. There's more kids out there that had been re diagnosed with a form of monogenic. So we talked about it in terms of the value of it, but I think for an 11 year old, it's a little bit harder to grasp the big picture. When you're still the only kid in your school that monogenic, she's not the only diabetic, but she's the only monogenic kid. You know, when she started Middle School, we had to have a meeting with the administrative team and the nursing supervisor because they didn't know any of this stuff.
Stacey Simms 52:49
Well, wait, let me jump in. Because I know we're getting really long on this interview guys, but I may have misunderstood so she takes a pill three times a day, but does she have to do anything else? Are you still checking blood sugar and worried about highs and lows
Kristin Skiados 53:00
So you we are we have any we still do worry about her highs and lows. So I mean, if she's high, it will come back down when she's low. Yeah, we still have to treat it, you know, 15 grams of carbs. We still have that protocol. She wears a CGM most of the time. So she really just kind of checks in with her nurse and she has to take her glide right at lunchtime. So she visits the nurse there. But you know, when you're dealing with something that's not the norm, people get a little bit nervous with it.
Stacey Simms 53:31
All right, before I let you go and Toni, let me ask you to weigh in on this one more time. I just keep coming back to what do we do? I know that in the future, hopefully we can get more testing. But is it a question now of Okay, my son was dead. Let's use me. My son was diagnosed at 23 months. He looks like classic type 1 diabetes. No one in our family had diabetes before him. I don't recall. You know, not needing Insulin at any way, shape or form. In fact, he's had that classic journey of teeny tiny doses. I remember growing up those quarter units in a syringe, we couldn't see it at all when he was 23 months, and then the basal rates doubling and then doubling again as he hit puberty. So I think we're probably not a good candidate to be tested for this. Right? It certainly
Dr. Toni Pollin 54:21
sounds like classic type one, I should do my kind of disclaimer now that I'm not a physician. But, you know, I think part of the problem is that we still don't know what we don't know, which is why what we were telling people you know, when we've now we've been to Kristin and Ava and I were mentioned at Florida Kristin and I went to the friends for life conference recently, more recently in Falls Church and just the importance of getting those antibodies and the C peptide, because you know, to be No, I think it's becoming more routine to get them. But just because it's possible to even the C peptide, it's possible to not show When you see peptide in the blood because this particular type, so the type that Kristin and Ava are have is actually different than the main types they talked about, where you know, the insulin gets made, but there's this channel that doesn't function properly, and so the insulin can't get out. So I say, look for the typical cases. But if you have any doubts, if you're curious, at least make sure you've kind of had these these kind of baseline measures that make it clear that this really is type 1 diabetes, because we don't know every possible scenario that this can present as I also did want to say, because I wanted to kind of correct something a little bit you were asking earlier, you know, is there harm to being on insulin when you don't need it? I can tell you that this KTP diabetes is potassium channel diabetes. It's most common in you know, really little infants, like we're talking like zero to six months. And I've heard some of those parents, for example, there's a little girl in Chicago, who's actually in a movie called journey to a miracle if you know Educational Resource and her I've seen her parents speak and talk about how she would have hypoglycemic seizures because it was very difficult to control her in her glucose with insulin, especially when she couldn't verbalize what was going on inside what really struck me I went to actually the the premiere of the of the movie they made when they showed it in Chicago. And actually, I think this movie is available on Amazon. So if people want to see it, it tells some of the story but what really struck me was these parents many of these parents saw this as a cure, which kind of surprised me because I thought oh, we don't have a cure but it's better but it to them it felt like going from a kid with a with really difficult to control Type 1 diabetes to you know, manageable, mild type two diabetes like the other thing I should this is kind of really bringing up a whole nother subject but some of the kids who have these mutations it actually affects it has it has neurological function and actually affects some of their brain function and some of that can improve with the treatment as well. So that's just kind of extra, but kind of getting, you know, back to your question of what do we do? This is what's keeping me keeps me up at night sometimes, but it's keeping me in research. This is this is what my research is really trying to do. How do we address all these barriers? I mean, we've talked about some of the barriers, genetic testing can still be expensive. We need to communicate to insurance companies what the genetic testing does and how it's useful. We need to communicate to providers worldwide, when we do the genetic testing, we need to improve the dinette testing. So there are better at telling the difference between which variations in the gene actually cause diabetes. And so one of the other issues that I have is I have a worldwide panel of experts in monogenic diabetes that can pull together not only their knowledge, but they can pull together their cases. So to give an example, the mutation that Ava has, was only reported one time in the literature and because it was recorded in the literature. We were able to say that it was an important mutation in this disease, otherwise we wouldn't have been able to. And so the solution really is communication. That's why we're here on this podcast. And people telling their stories, working together, being open and finding more people so that other people can help come up with other creative, creative ways. So
Stacey Simms 58:22
well, Toni, and Kristin and Ava, thank you all so much for sharing this story for giving us all of this information and for continuing the research. I mean, it's incredible to think about how many people might be walking around with a misdiagnosis. So thanks for coming on. I appreciate your time so much and you know, keep us posted. How about that? Isn't it difficult to think about being misdiagnosed and not having type 1 diabetes? I mean, as Kristin said, it really is a dream. It would be so nice to be able to tell my son Oh, sorry. You don't need to take insulin anymore. There were times during this interview where I kind of felt myself getting I got jealous. I got a little angry. I got resentful. I was very happy for them. I'm happy for any family that that, you know, turns the situation around. Although it doesn't sound like monogenic diabetes is a walk in the park either. I mean, let's be honest, but I had to let myself feel those feelings as we were talking. And if you felt them too, you're definitely not alone. Okay, next stuff on the world verse diabetes mom book tour. I'm heading to South Portland, Maine this weekend. Oh, it is gonna be so much colder. I'm so nervous being the southern transplant that I am. It's gonna be great. I'm talking to a group called the main pea pods, parents and providers of diabetic children. And I am thrilled to be going up there so excited to talk to this group and meet everybody. We're gonna have a great weekend. If you'd like me to come speak to you definitely reach out there's a page at diabetes connections. com called Community It's got our schedule where we're going, where we've been and what you need to do to request an appearance from me. I can come out and do the podcast, I can come out and do what I'm doing this weekend, which is the world's worst diabetes mom presentation, which is all about why you all should be more worst. Making mistakes is a really, really great idea. We have a lot of fun. Thank you, as always to my editor john q. kennis. From audio editing solutions. Thank you so much for listening. Our mini episode is going to come along and just a couple of days. Those are airing every Thursday. So I hope you can join us for that. I'm Stacey Simms, and I'll see you back here on Thursday.
Unknown Speaker 1:00:43
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress.
What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids.
Links referred to in the episode can be found in the transcription below.
Get the App and listen to Diabetes Connections wherever you go!
Beta Transcription - please excuse grammar, spelling & punctuation
Stacey Simms 0:28
Welcome to a minisode of diabetes connections, one of our shorter episodes where I share some thoughts on one topic of diabetes management. I'm your host Stacey Simms, and my son was diagnosed 13 years ago just before he turned two.
Before I jump into this week's topic, which I really feel pretty strongly about. I want to give a thank you to Diabetes Forecast Magazine. We are in their January February issue as one of the top trending items for winter. It just cracked me up. When I opened, I get the magazine. So when I opened it, I laughed only because of the picture that they shared. I knew it was coming, they had asked to review it in the fall, but I didn't know that there would be a full picture. And I certainly didn't know it would be so funny. It's a woman, you know, with the book over her face, kind of like, Oh my god, I can't believe I'm reading this. And I can't believe what I'm reading.
But the funniest thing is that a lot of people thought that woman was me. It's not, but I can kind of see it. And it's so funny to think that even with social media and everything else, because this is basically a radio show, you probably have a picture in your head of what I look like, I always do that for people on the radio, and then you meet them and you're like, that's not what I thought they would look like at all. So if I get a chance to meet you, you can tell me what you thought I looked like. But anyway, thank you so much diabetes forecast. I really appreciate that. And thank you to everybody who's sharing the book. After you listen to the show today. You might say I really am the worst. But I really do feel very strongly about this.
So let's talk about it. This topic of sharing photographs, of children in the hospital, sick day photos. This is something that is very sensitive to a lot of people. But let's talk about why I truly think it is a bad idea to share what I'm going to call these photos of your child in distress. So for the purpose of this episode, let's say children in distress includes hospital photos, Sick day photos, a child upset about aspects of care, like getting a shot or an inset. Any photo that shows your child in a moment of distress or pain or hurt. We see these all the time on social media, a casual post of a tough night of lows, you know, and a sleeping child with a juice box next to them or something maybe a little stronger. You know, we're in the ER today couldn't keep fluids down and needed hydration. And then you see the child miserable in the hospital bed. We see these photos used by organizations and news outlets, Beyond Type 1, JDRF, Diabetes Daily. I am affiliated with a lot of these groups in terms of sharing content, right? You've seen - they'll post my stuff, I'll post their stuff. But I think it's important to call it when I see it. And every time I see it, I just cringe.
Now, I know what you're saying already, right? This is important. We need to show the real side of diabetes, right? We need to show more than the smiles when a kid gives himself a shot for the first time or you know, gets over the fear. If you listen to my longer show that airs on Tuesday, you know that every week we do a Tell me something good. And I very happily show pictures of those people who are featured each week, and I have been accused of being more positive and you know, too rosy sometimes. And, you know, but we're talking about realism. Right? Everybody says we need to show the hospital days they happen. We need to show diabetes isn't fair. Well, of course we do. Yes. Yes. We need to show that that is important. And I am all for realism. I promise it is not sunshine and unicorns and rainbows over here. But you know what we don't need to do to show that we do not need to exploit children. And that's what's happening here. These are kids who cannot give consent to be featured. They can't give consent. They're too young. And they have just as much right to their privacy as we do. How would you feel if someone took a photo of you at your most vulnerable, and posted it on Facebook?
Let's just back up and think about this. And I will get to when I think it can be done and how it can be done in a way that educates and informs and brings out emotion and still protects the child. But right now, let's say on these photos of distress, I did a little bit of research on this and there are a lot of articles about social media and photos. There's not a lot of research because this is Still so new. And when I see research, I mean real scientific published paper, that kind of research. But I did find some interesting articles. And I'll link all of these up in the show notes on the episode homepage. So here's an article from Dr. Kristy Goodwin, She's the author of “Raising Your Child in a Digital World.” She has a PhD in the impact of digital technology on children's learning. And she says that right now, sharing every part of our lives has been normalized by social media. But what happens really, when you dial it down is that it's a desire for a like, which is really a desire to feel connected, which she says is one of our biological drivers as a human, and it is needed to experience empathy. It does fulfill a purpose.
Dr. Goodwin says and here's a quote, “For many parents when their kids are seriously sick, they have lost all control and their world is literally spinning out of control. When parents go on social media, they have a sense of control over their life again, They can post things and choose exactly what aspects of their child's sickness that they want to post.”
Another article is from a pediatric hospitalist from St. Louis Children's Hospital, Dr. Shobha Bhaskar. She says, “We are all looking for support when our loved ones are not well, but when your child is running a fever or has a broken bone, please put down the camera step away from the screen. I'm sure if your child had a choice, they want to look their best to like you do. And your child would not appreciate a picture of them looking tired and rundown on the emergency room that we talk so much about patient privacy rules and rights. But what about the privacy rights of our little ones? Or do we think they just don't have any,” she says,
I'm going to take this one step further. Because I do think while we're on this topic of digital privacy, it's a good time to sneak in something else. In my Facebook group. I have a local Facebook group in the Charlotte area that I started, I don't know, maybe five or six years ago and when I wrote the rules and regulations for the group, the admin announcements. Here's what I wrote. “Please think twice about any pictures you post of your children. A picture of a pump inset on a naked toddler’s backside may be completely innocent, but there are creeps out there. This is a closed group, but there is no guarantee of privacy on any social media outlet. Please, please crop pictures like this very closely. So we can't tell what body part of it is for your child protection.”
And then I go on to say, “Same warning for posting pictures of your child in distress. This includes hospital pictures, pictures during illness, etc. You have our support and sympathy already, your child has his or her own right to privacy and may not appreciate being pictured online in such a manner. These pictures aren't banned. But take a moment to think about why you might want to post something like that.”
If you listen to carefully you might be saying Stacey what? They're not banned in your group but you just got on your high horse and told us how terrible they were? Well, they're not banned in my group, at least, and they are banned at some other groups. But here's why I felt like banning them outright would take away the conversation and the thinking, if you know that you're allowed to post them if you really need to, perhaps you'll stop and think about whether you want to a little bit more. And whenever anybody posts it, I usually send them a very gentle, private message, reiterating what I already talked about here in this episode, we support you, we love you, we're so sorry, Your child is hurting. But why are you posting that picture? Can you please think about your child's privacy? Sometimes I wait, because if the child's really ill, there's no reason for them to hear from me when they're in the hospital. Don't worry, I'm not direct messaging, a parent whose child is in a critical situation in the hospital and saying, could you please check your photo on Facebook? I mean, really, I'm not that cold. But I do if they're not in an emergency situation. I do do it right away, but it rarely happens in my group anymore.
What actually happens is we have conversations about why it's not a great idea, and what we're looking for, and what else we can do when someone's in the hospital. I mean, Benny had knee surgery a couple of months ago. And you bet I took pictures. We took funny pictures when they shaved his leg. I took a picture of his pump in the hospital gown. I took pictures of him and sent them to his grandmother, you know, going in thumbs up, that kind of stuff. I also took a picture of him coming out, because he was bundled up in so many blankets. He was so cold from the anesthesia coming out of it, he was fine. But that's not a picture he'd want me to post. But it was a picture he wanted to see later on. I knew he'd want to see how, you know, kind of funny he looked, but I knew he wouldn't want me to post it. So I'm not talking about not taking pictures, right. I mean, he had a terrible injury when he was about seven or eight years old, and we were in the hospital. And I took pictures. This was when we knew he was going to be okay when things had calmed down and he was stable. And I was sitting there with nothing to do feeling helpless. I took some pictures and sent them to my mom and my sister. And I showed them to Benny later on. I mean, they weren’t gruesome or anything. You know, if you're a longtime listener of the show, you may be thinking, I've never heard about this. And I'm not going to tell the whole story right now. You know, and I also it's a good time to point out that I don't share everything that's happened to Benny, I work hard to protect the privacy of my kids and my family in ways that make sense. So I have these pictures of him in the hospital at the time of that accident, but I didn't post them.
I did mention earlier, there are ways to do this. So how do you do it? Well, when he was in the hospital for his knee surgery, I posted a picture of I don't even know some of the hospital equipment, right, the IV bag, I posted something and I said, here's where you know, we're going in, everything's good. I'll keep you posted. That kind of stuff. And I've posted pictures of him drinking a juice box, you know, he's low and you can kind of see in his face he's look you know what to look for. Rather than a more dramatic picture I've posted on I use it to my presentations. Several years ago, I took a picture of his bedside table, which was just it was one of those horrible nights it was covered with juice boxes and test strips and, you know, inset changes, it looked like a war zone. And that conveys the difficulty of type one diabetes in a very similar way.
I posted this on my personal Facebook page, just to say, Hey, I'm going to be talking about this topic. And I was curious what other people in the community thought, and I got so much feedback. One of the pieces of feedback I got, which I thought was very, very interesting. And by the way, the vast majority of adults with type one that I heard from said, Please, please, please tell parents not to post pictures of their children. It really is something that I know people feel very strongly about. But I did hear from advocates who said, we need to get our cause across. We need to push we need to fundraise. I've two responses to them. One is we've been fundraising for JDRF and some other causes for 13 years. We have raised 10s of Thousands of dollars, we might be close to $100,000. If I sat down and added it all up, we have never posted a picture of Benny in distress. Has he been in distress? You bet. have I written about it? Have I talked about it? Sure. But we have found creative ways to show what goes on with diabetes. And I've never felt like I've exploited him to fundraise. And I know many, many other people who have raised a lot more money than me, who have never posted a picture of their child.
I also heard from people about what the DKA campaign. Now, if you're not familiar, there is a campaign and it's a great campaign to diagnose Type One Diabetes sooner. There are so many cases of children and adults diagnosed while they're already in DKA, while their lives are in danger. The most dangerous time to be type one diabetic is before anybody knows that you are and the thinking was, you know, we need to show the faces of this. We need to show what can happen so that laws can change. And as I'm speaking about this, I'm also thinking about the insulin for all campaign and People who are dying because they're rationing insulin, but I'm going to give you the example of Reegan Oxendine and this is a little girl here in North Carolina. She was a toddler. She died. She had type one diabetes, it was misdiagnosed again and again. Finally she was hospitalized but it was too late. And her story has been told several times, I'll link it up in the show notes. Previously Healthy was a wonderful bit of journalism, photojournalism done by the folks at Beyond Type 1, but I bring up Reegan because it actually illustrates the point I'm trying to make that we can affect change and we can get the point across even if in this case, it is a terrible point, without photos that are exploitive.
If you're familiar at all with Reegan’s story, what may come to mind is the most impactful picture in my opinion. And it's not her in the hospital, and it's not her looking ill and in distress. It's a devastating photo. It's just her mother's hands, holding Reegan's tiny little shoes. Her Shoes fit in her mother's hands. I'll post this picture. It's incredibly powerful. It's disturbing in its own way. But it is not exploitive at all. And it is a photo that really affected change. The law changed in North Carolina. Now is it as a strong laws everybody wanted and we've done episodes on this, I will link up more information on the episode homepage. As you can see exactly what happened. It's frankly, more of a recommendation for pediatricians but got the awareness out it got legislators talking about it. There are other cases of children and adults who have died. And they have been pictured online in many different ways. I am not going to judge those parents. You know, frankly, that takes us down a different road. I'm not sure how I feel about that. And it is certainly not for me to judge how those parents how those families react. However, that's not exactly what I'm talking about here. And I think we all know that I'm talking about the case of your child who's throwing up, run of the mill sick, you know, maybe has ketones that you're treating, who just looks awful. And you know, you grab the camera, because isn't that what we do?
It's so interesting to me how much things have changed. I mean, when Benny was diagnosed in 2006, nobody had a camera because it wasn't on our phones. Right? It never occurred to us to take pictures of Benny in the hospital with Type One Diabetes, being diagnosed because who would bring a camera to something like that? And you know what, I wish I had those pictures. Only because there were so many funny and touching and wonderful and and sad moments that I remember, but I'd like to see I'd like to see little baby Benny ripping off all the stuff that was on him. We had such a hard time keeping anything on him. He's like little baby Hulk pulling off the sensors and things like that. I'd like to see him maybe getting his first shot. He was so brave. I'd like to see his face. Sister hugging him, you know all the things that are in my head, but that I don't have a photo of. And it's because times have changed so much that we don't think about photos.
I have thousands of pictures on my phone, right? I don't even know what they're up anymore. We just take them in a screenshot and I save things and we don't even think about pictures anymore. But I'm telling you, these are pictures that we need to think about. I also think it's important to keep in mind and we all know this, but we don't really think about it when we're posting the internet is forever. And if you've posted a picture of your child in distress, child might be five years old, that photo will live forever. Your child will probably find that photo at some point in their life. So before you post another photo, just stop and think for one moment. I don't care if it's a closed Facebook group. I don't care if it's a private Facebook group. That's a bunch of bull. Nothing is private. In social media. The minute you hit post, somebody else can screenshot Somebody else can save it, somebody else can forward it, you have no idea where it's going, right? So just take a moment to think, why am I doing this? What do I need right now? If it's support and sympathy, I promise it's out there. If it's showing the real side of diabetes, I promise there's a way to show that without exploiting your child. And if the next time you post you're thinking, well, but think carefully, what comes after that. But what is stopping you? Is there a little bit of doubt in the back of your mind? If there is, you know, which other 10 minutes Think it over? You can't take it back once it's out there. I promise. There was love and support and sympathy and understanding and empathy and fundraising and awareness without posting these kinds of pictures.
Agree? Disagree? I know a lot of people feel very strongly about this. And I know when this gets posted, most people aren't going to listen to all the way to the end, they will see the headline and they will tell me I'm a terrible person. So keep in mind, I am the world's worst diabetes mom. You know, what do you think I really would love to hear from you. All kidding aside, we will put this in the Facebook group. I'll be talking about it on social media when the episode airs. And of course, I'm Stacey at diabetes connections.com. You can find that a lot more about the show about the book. And about this episode on the website. Of course there is a transcription. all the episodes beginning this year, have that transcription on the episode home page.
All right, back to our regular full length episodes every Tuesday, and then these minisodes on Thursday. I'm Stacey Simms. I will see you back here next week. And until then, be kind to yourself.
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged.
Transcribed by https://otter.ai
Choosing your diabetes technology can be complicated. Wouldn’t it be nice if there was sort of a Consumer Reports for pumps and CGMs? We found out about Diabetes Wise from people who know it’s about more than the hardware.
Stacey talks with Dr. Korey Hood who lives with type 1 and is with Stanford University as well as Laurel Koester, with the Helmsley Charitable Trust. Together, these two groups created Diabetes Wise. Stacey, Korey & Laurel talk about how it works and why it’s needed.
Stacey spoke to Korey on a previous episode about diabetes gear and mental health. Find that episode homepage here.
In Tell Me Something Good – the greatest game of Marco Polo every played.. and Stacey finds her diabetes doppleganger.
Get the App and listen to Diabetes Connections wherever you go!
Episode transcription (it's a rough transcript, please excuse grammar, spelling & punctuation)
Stacey Simms 0:00
Diabetes Connections is brought to you by one drop treated for people with diabetes by people who have diabetes, and by dexcom, take control of your diabetes and live life to the fullest with dexcom.
This is Diabetes Connections with Stacey Sims.
Stacey Simms 0:23
This week, choosing your diabetes technology can be complicated. Wouldn't it be nice if there was sort of a Consumer Reports for pump and CGMs? Enter DiabetesWise from people who know it's about more than the hardware,
Korey Hood 0:38
there's the physical side to wearing it, then there's this mental burden that is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is the distractions and the potential workaround. So you have to come up with in these various settings, whether it's school work, family relationships,
Stacey Simms 0:56
that's Korey Hood, who lives with type one. He's part of the Team at Stanford who along with the healthy trust created DiabetesWise, we'll talk about what it is how it works and why it is needed. In Tell me something good, the greatest game of Marco Polo ever played, and I find my diabetes doppelganger. 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 your host Stacey Simms. So glad to have you along. And I'm really excited about what we're talking about today. Because I don't know about you. But when we went to pick out our pump for Benny, and I'll tell the story during the interview, it was just overwhelming. And while our educator was fantastic, I really wish we'd had just something to kind of compare and contrast the different types of tech like now exists with DiabetesWise. So we'll get to that and the interview in just a couple of minutes.
But you know, I get so many great things emails and messages and I'm so terrible at reading reviews and sharing this stuff with you. You know, there's all sorts of techniques and strategies for getting people to share more reviews and email you more in blah blah blah. I'm just terrible at that. But I have to share this one with you. Because it was like getting a message, like a message in a bottle from a time machine. So here's what happened. Casey messaged me. “Hi, Stacey. I'm sure you get messages like this one all day every day, but I couldn't resist reaching out. I wanted to reach out and tell you how you impacted my world for the better. My son was diagnosed with type one on the 21st of November of 2019. We are soaking in all the new information, trying to get sleep keep up with our jobs, all while trying to keep our regular life intact. I came across your podcast and more specifically, the episode titled all about babies and toddlers with Type One Diabetes. I immediately thought finally a podcast discussing everything we have been dealing with lately. Plus, it's run by a type one mom – score! and Anyway, long story short, she writes, I listened to it and learned a lot.”
“But that's not why I'm messaging you. I am messaging you because my son's name is Benny. And he was diagnosed just six weeks before his second birthday. His sister is four. If that wasn't enough similarities for you, we are also from Charlotte. They live in Charleston. Now, I know this might not mean that much to you. But for me listening to your podcast, shifted my world, listening to your story somehow made me feel not so alone. All I can say is thank you. Thank you for telling your story and putting your life out there for the world to see.”
It took me a minute, I had to reread it to be honest with you. Because if you're not familiar with our story, my son, Benny, was diagnosed right before he turned two his older sister had just turned five. So it's a very similar story. I mean, they have used to live in Charlotte. It was just this feeling of kinship. Yep, I'm not sure I we're still talking. I'm kind of working out the emotions, because it is kind of like looking at a time machine. And I'm so grateful for the people that were there for us when Benny was diagnosed, and the blogs I read and the people that I talked to. So to be that for somebody else now is really remarkable. So Casey, thank you so much for reaching out. Definitely. Let's keep in touch, our Benny's. Maybe we'll meet at some point, how much fun would that be? I mean, we go to Charleston every summer. That's where we go to the beach. So I'm really hoping to follow up on this because man, those connections are really what it's all about. For me, it sounds really hokey, but if you've listened to the show for any length of time or met me, I think you'll say that that's the truth.
Alright, so DiabetesWise coming up in just a moment. But first, Diabetes Connections is brought to you by One Drop and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the slickest looking at most modern meter My family has ever used. It's not just about the modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to diabetes, connections dot com and click on the One Drop logo.
My guests this week are Korey hood PhD professor of pediatrics and of Psychiatry and Behavioral Sciences at the Stanford School of Medicine. We did a great episode a while back about the mental burden of wearing devices. With Korey It was really eye opening for me and I will link that up on the episode homepage. And we're also talking to Laura Kester T1D program officer at the Helmsley trust. I should note, we taped this interview a few weeks ago. So when they Talk about things added to the website. Some are already there. And starting this year, all of our episodes are transcribed on the homepage. Have you checked that out, you can go right to the episode homepage on diabetes, connections. com, scroll down just a little bit. And the whole episode transcript is there so you can read the episode, if you prefer. love to know if you're doing that. So let me know what you think. Here is my interview with Korey and Laurel. And I start out by asking Korey, what is DiabetesWise?
Korey Hood 6:30
Well, thanks again, Stacey for having us on. And we're always happy to talk about diabetes life. So this is a website that we collaboratively worked on. So I'm a psychologist and clinical researcher and one of the things that we've noticed in practice and and also in research is that people are not always aware of the different device options they have and I'm not always aware of the different technologies available to them for managing Diabetes. And so we wanted to create a resource that was unattached to device manufacturers to companies that hopefully is unbiased and and can be free and people can go there and compare different devices and understand a little bit about what other people who are using those devices have, you know, thoughts on it. And so, we've been doing some collaborative work with the Helmsley Charitable Trust for four or five years on understanding some of these device and psychological factors related to device use. And so we have support from them and have been working on this for much of the past year and a half.
Stacey Simms 7:45
Laurel, let me ask you, I remember years ago now, looking for the insulin pump for my son who was two at the time and it just seemed overwhelming what was out there. I had no idea how to make a decision. What would I find at DiabetesWise how would this have helped me?
Laurel Koester 8:03
Sure. So one thing I think is really critical about DiabetesWise and makes what makes it so different from what's out there is the use of personal stories from real people living with diabetes. So, you know, our ultimate goal at the trust is to help people be aware of all their technology options that are out there, and kind of get the inside story and real talk from other living with type one about their experiences, trying, maybe stopping, maybe trying, again, different types of technology. And we found through some market research that we've done is people really you know, they're kind of two groups of people. There's a group of people that you really trust their doctor above everyone else. Then there's other folks that really look to online information sources. Know, like a DiabetesWise, like beyond type one. But there was nothing really focused specifically on technology. And what is really great about DiabetesWise is that it has a short questionnaire at the beginning that basically serves as an algorithm to help see where people are when they come into the site, and then provide suggestions on what device is right for them through the use of the personal story.
Stacey Simms 9:40
And we're like, I definitely want to talk more about the homestay trust and why it got involved here. I mean, so much for people with diabetes, but Korey, okay, so you've and I've talked before about the mental load people with diabetes carry when we carry when one of these devices is attached. Right and how we kind of don't think about that. I mean, it never occurred. occurred to me when he was two and a half we put the Animas 2020 on him, it never occurred to me to think well, What's this doing mentally to my child? You know, as a teen, it's kind of easier to see. But can you talk about that a little bit about how it's beyond? I mean, they all work really well. There's not a bad insulin pump out there.
Korey Hood 10:19
Yeah, absolutely. I think that, and what you just mentioned, I think is a great a great example of why we have to think about this at different stages. And, you know, for somebody who's, like your son diagnosed the two, and then the family is adjusting and I mean, the burden around the mental burden around diabetes management at that point, even devices are not as really on the parent and so the it's really just a physical side that's on the child, but as they develop and then you know, as you know, many of the people with diabetes using these devices are adults that there's a I think there's a couple different parts of Did that sit in the psychological impact and one of them that we noticed a lot, especially in the teen years, there is the social side. And so what kind of attention is drawn to the person based on wearing these devices and having alerts, alarms, having, you know, disruptions and various things that they're doing. And so I think that the there's the physical side to wearing it, then there's this mental burden that is, is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is, you know, the distractions and the potential workaround, so you have to come up with in in these various settings, whether it's school work, family relationships. And so I think that there's a, there's a lot to think about, that we often I think, especially in the clinical care side, we forget that as soon as people leave the clinic, this is what they deal with.
Stacey Simms 11:56
Just this quiz, well this take me through which pumps beeps Am I going to actually listen to which CGM sensor alarm? Well I respond to I mean, I'm kind of joking. But you know, alarm fatigue and things like that. Are things that really happen. Are those kinds of things taken into account when you're trying to figure out what to choose?
Korey Hood 12:17
Oh, absolutely. I think that you know, one of the things that we wanted to do, and I think that this is best illustrated with our CGM comparison tool, which we did a lot of collaborative work with Laurel and her team to make sure that we got it right. And one of the things that we have there, you know, people can compare the sensors compare the different devices on whether or not it provides, you know, you have to do calibrations, you have to do finger six, but you also know the kind of alerts whether they're customizable or not. Because, I mean, as you know, as you just stated in all the user testing that we did, that is a big concern for People are these alarms and alerts and and what are the ways that we can at least notify people of them and what it's going to be like that also, in our, in our stories, people talk about that. And they talk about it being disruptive at different times and some of the little tricks that they found to actually help those situations. And so we try to, you know, it's just, you know, essentially just real talk about what it's like to use these different devices.
Stacey Simms 13:27
Also, Korey mentioned your team and some of the research that you did you had done. Can you talk about that a little bit?
Laurel Koester 13:33
Yes, absolutely. So I think just want to take a step back is, you know, we know the technology works, but how do we get more people to be aware of them, and not only aware, but to then use them and found them. And so we know that there are a lot of different factors that kind of play into the space around technology adoption, you know, there's a lot of barriers, but also facilitators out there. And so we really wanted to hone in on, you know, we know their system level barriers, like insurance coverage. So our idea was, let's go directly to people living with diabetes and, you know, just understand their awareness around different technologies. And some of the market research we did was specific to CGM, but we thought, hey, if there are the system level barriers, and we also know that, you know, maybe not all providers actually know about these diabetes technology, you know, especially if you're talking about primary care providers. And, you know, given the number of people living with Type One Diabetes, but also type two in the number of endocrinologist in the US there’s just not enough to meet demand. There are a lot of people that are seeing in the primary care sphere. primary care providers just, you know, don't have the bandwidth. So some of the market research we did was to, you know, we wanted to learn about information sources that people trusted. And the the two main points that I alluded to earlier was, there was a group of people that really trust a variety of information sources, ranging from their doctor to diabetes bloggers, to online community groups, and then there's another group that overwhelmingly trust their doctor. So for us, this told us that we need different approaches to raising awareness about diabetes technologies, one being through patient facing resources, like diabetes lives, but I think part of our larger vision is to also we understand now from this research that we also need to involve healthcare provider. Ultimately, the truck vision is to increase the use of diabetes technologies for people living with diabetes and others who are on intensive insulin therapy because it really is a an effective tool to help improve management.
Stacey Simms 16:22
Cory I'm curious as somebody who lives with type one, and I assume I shouldn't assume, but I was gonna say I assume who wears devices? Do you use a CGM or a pump?
Korey Hood 16:33
I do. Okay, yeah. So you probably too many of them.
Stacey Simms 16:36
Wait a minute. So tell us how many are you wearing at the moment?
Korey Hood 16:40
Oh, no, I'm just, I'm just exaggerating. I've tried I think everything that's on there.
Stacey Simms 16:45
That leads to my question, which is, do you mind sharing separate from DiabetesWise? How did you choose? And you can mention brand names if you want to, but I'm curious how you go about before there was a resources like resource like this. How you You went about choosing what devices you would at least try and then wound up with?
Korey Hood 17:05
Yeah, I think it's a great question. And I think it's something that
there's there's probably a few themes about how everybody arrives at this place about devices. And I'll tell you mine, but I think that it's there are not that many different routes to people getting on devices. And so for me, I mean, I it was fairly straightforward. This is when you know, back in, this was 10 years plus now when the first CGM came out on the market, and my insurance would pay for it, that was what made me kind of intrigued about it. You know, I heard a I was I've been working in the diabetes space, so I knew that it was coming and and so I wanted to try it because I could, but if I had to pay for that out of pocket, I probably wouldn't have paid for it. I probably wouldn't have done it at that time. So it was it was accessible to me, which was, you know, an important part. And then also, you know, I was
I liked the idea of something that gave me a continuous, you know, feed of what was going on with my glucose because I knew from finger sticks and we still know most people are still using finger sticks that there's you miss a lot of the peaks and valleys with those kind of intermittent glucose readings and so for me that was appealing because then I could maybe catch a low I could. And so I just for the management purpose, I think that I was really drawn to it from the pump side. You know, I've been, you know, you've mentioned the Animas earlier and, and I that was my first pump and I use it for a long time and I still have it in my you know, diabetes Museum of devices at home. But I I, for that it was it was just because of provider said you should try this. I didn't know really a lot about it. You know, I was 1819 years ago and I thought you know, I'll try this and and so I think what I can tell you though now I currently use the Omnipod with the Dexcom g six within the loop system. And so my movement to the occupied was was just because it was working with that system and I was I wanted to give it a try to have to blitz and, and for me and my lifestyle and my you know, when I do physical activity, it's just so much better and so so they do have too long of an answer to your question, but I think it's evolved over time about why I've used devices and I've been drawn to ones more recently that are smaller that don't have to be in and that that make it a little bit easier to do the things I like to do you know, outside of work and family.
Stacey Simms 19:59
Our experience was, was not exactly similar and choosing an insulin pump in that we were given a lot of choices. And at the time, back in 2006, there were actually more pumps on the market, which is kind of sad to think about. And we chose the Animas 2020. Because I felt like of all of the devices that I was shown, it kind of seemed the easiest. I said to my educator, I really said, I need devices, including pump insets. And everything else. I need the the Venn diagram of idiot proof, and does really good does what it's supposed to do with diabetes, because I really was so overwhelmed. And that's what we wound up with. And as Benny got older, and you know, every four years you're changing and making decisions. We stayed with a two pump. We now use the tandem. One of the reasons we stayed with it is because my son is very responsible, great kid does well loses everything. And we felt the Omnipod PDM would be gone in about 30 seconds, but I'm curious. So when you go through the quiz Your pump and sensor and that kind of thing. What kind of questions are you asking? I mean, I should have taken the quiz before I talked to you, sorry. But I'm wondering like, do you want everything attached to your body? So you don't lose it? If that's one of your questions, or if that's, and I'm laughing, but you know, you understand I'm saying that's one of the No, absolutely, yeah, form factor or your lifestyle factor?
Korey Hood 21:22
Absolutely. And I think you raised a really good point about that. The systems that that work well, and are easy to use, have been designed with the person in mind. They've been designed to be, you know, to have the form factor, like you mentioned, but the user experience is something that is positive. And I don't think that all of them are designed and created equally, in that in that sphere. And so I think that, this really great examples of that, and I would say that the tandem is one of those that has You know, and using use an interface that especially for anybody who's been diagnosed in the last few years, you know, that's that's what they're used to in terms of touchscreen. And so with that said, it's a good question about the quiz and one of the things that we did just quickly give you a little bit of history of it. So, in our we did a lot of work serving over 1500 adults with type one 700 adolescents, 700 parents of kids with with type one, to really understand what are the main questions that we need to ask people so that we can put them on the right path toward, you know, an experience where they become more aware about devices and then also maybe matches better to what their lifestyle is. And so we were able to take hundreds of questions and and derive a quiz that have five questions in it. And a part of those questions is about the level of distress and burden that they perceive about that. BTS because we found that that's a really critical factor in making sure that people get the right kind of information about using devices. But we also ask them what their priorities are, what are their concerns? And what are their main ones. And although we don't specifically phrase it, the way that you mentioned, it is that we, we get it, we get at a number of different priorities that people have. And then that starts them on this path. And then because of the way that it's framed, and as Laurel said, around the algorithm, that it will then take people to, based on their responses that will take them to individual stories of others who have those same concerns or same priorities. But then when it one of the parts that's not live on the website, yet, is a device readiness tour device Finder. And so in there, you can drill down a lot more deeply about what your priorities are, and so For example, if someone really wants it to be discreet, if someone wants it really ease of use ease of use as one of the ones that we have in there as a priority, if someone really wants to avoid fingerstick there's all of this that you can tailor the advice or the recommendations that you're going to get based on what your priorities are. So that's great for people who have some idea of what it is, but it's also great for people who are just trying to get a sense of I'm not even sure what my priority is. I'm not even sure what I want out of this so you can learn about it as well in the process.
Stacey Simms 24:34
Alright, so I'm looking at the website, and I know that as you said, more is coming. But it does say there's stuff about pump and smart pump. There were only three pumps in the US as far as I know right now. Which ones are the smart pumps? to dump I'm sorry.
Korey Hood 24:50
Right? Exactly. I there was something funny there that I couldn't quite come up with but I do agree with you that it what we found and said this is Why is it so important to ask people and involve them in in user testing and development? One of the things we found were that people really wanted to distinguish between something you just put on your body that administers insulin that doesn't make doesn't have any kind of alteration or it doesn't change what it's doing based on anything else. And so, you program a pump and they're, they're, you know, they're sophisticated for, say, 1995. They haven't evolved a lot. But they, they still do a great job and are reliable and precise. With what's what we wanted to distinguish is this idea that a pumpkin do something like low low glucose suspend or can be part of a larger closed loop system. And so the smart pump idea really came from what we heard from people and although it's not a, you know, an FDA category of devices, we really heard from people that they wanted to that distinguish between kind of the traditional way that you would pump versus something that has the capability to be within a closed system or to have low glucose suspend. So that was really the distinction there.
Stacey Simms 26:11
Got it. So in other words, if you use an Omnipod on its own, that's a pump. But if you use an Omnipod as part of the non FDA approved loop with a Riley link, now you have a smart pump.
Unknown Speaker 26:26
Unknown Speaker 26:27
Let me ask you. We talked
Stacey Simms 26:29
about this at the very beginning that one of the things that makes DiabetesWise unique and very, very helpful is that it is not put out by a company with a stake in what device people
Unknown Speaker 26:41
Stacey Simms 26:44
Helmsley charitable trust I think many people are familiar with is so much of what it has done for diabetes research and funding and grants. And we've talked to some folks from the homestay family on the show in the past. What was the purpose here? You know why did Helmsley want to get into involved, it seems really obvious, because you're helping people. But I just wanted to ask you about the involvement here.
Laurel Koester 27:08
Yeah, absolutely. Well, I think they see the point that you raised about the the fact that we are an independent entity really speaks to kind of the trust factor not only in you know, what Helmsley because we don't have a financial stake in this. But we're also partnering with some of the leading diabetes researchers in the field at Stanford University. So we really want to ensure that that we're supporting information that is unbranded and unbiased and that people can trust. And I think, again, to underscore that this website is really informed by People living with diabetes is their voices. And, you know, for example, one of the tools that Korey mentioned of this device readiness tool, some of the research that's going into that is, you know, from a sample of people with diabetes, so when people see, you know, different priorities and, you know, writing, as you know, kind of just a sneak peek into some of the features that are going to be coming out, those are actually based on input from people living with diabetes, who are using diabetes was for the first time so it's a really unfiltered real deal.
Stacey Simms 28:44
Cory, what's your hope for this? Do you do you hope that like a CDE would say, hey, let's sit down together go through the quiz on DiabetesWise, or is it a question of people just kind of seeking a little bit more, or even people. What I find fantastic about this is that you have empty I'm on here as well, you're not assuming everybody wants an insulin pump, some curious what your hope is going forward?
Korey Hood 29:07
It's a great question. And I think that the ultimately what we want to do is we want to be able to match the device with the person and their lifestyle and their interests and their priorities. And, and I think one way to do that is that we traditionally don't do a lot of in clinical care is to spend more time objectively figuring out what's what's going to be the best fit, because clinics are busy, providers are busy, it's hard to get that dialed down really closely. And so my goal really is to get the right one for the person and so it's not a one size fits all approach. And if people are using multiple daily injections, and using a meter, you know, I could argue most of the time that you know, add a CGM add dilib re add something that will give you a little bit more glucose information to dial it in. So there's Maybe a little bit of room, but if you don't want to move, and you are really happy with it, then maybe there's some other some areas of distress related to diabetes that we've learned about in this process that we can help you with. And so, you know, I, it's, it's really intended to be a resource that can match and fit with anybody's interested in what they want to do around devices. But also, you know, at a minimum, you know, it educates the person about it, it also can be a resource that like you said, CDs could use one of the things that we found really helpful is we went to a D over the summer and in August and Houston and one of the things that we learned and, and talk a lot about with CDs was, you know, how this could be a helpful tool for them. And so that's another thing that's in process is making sure that we have something that is that can be used by them in a in a helpful way so that they can also get people on the right devices. I mean, I think that everybody If you get the right device on somebody, and they use it effectively, everybody, when there's less time and involved in on the clinical side, they're better outcomes. The person's happier. I think that there's just so many reasons that we want to do this. And then the other vision for this is that we keep it completely free, that we keep it disconnected from are not connected, not tethered to any kind of device manufacturers, we need them, they have to be part of this. And they're doing great work. But we don't want to be as Laurel said, we're not you know, we don't want to be biased or branded in any way we want it to be free and an objective tool for people to use.
Stacey Simms 31:43
I'm curious, what do you mean by you need them for this?
Korey Hood 31:48
Well, I mean, I think that we don't necessarily, we don't necessarily need them for DiabetesWise, although, I mean, you could argue that, you know, we wouldn't have DiabetesWise if we didn't have devices, but that's Maybe getting a little
Stacey Simms 32:02
Korey Hood 32:04
Right, exactly. But But I think what I think I'm just noting that we need for I think the person with diabetes, to have the best chance of the best outcomes we need device companies who are pushing the edge and who, who are, you know, are the competition is a healthy competition. And so I think it's good that they all exist and that they do the work. We just don't want them. We don't want people with diabetes to feel like they have to go to a certain device. And so that's why we we created this so that they could have a more
you know, unbiased view of what's available.
Stacey Simms 32:47
I just didn't want to make sure I just wanted to make sure I didn't misunderstand there that you didn't need them. In other words to give permission to recommend or that they had to somehow sign off on DiabetesWise.
Korey Hood 32:58
Right, right. Okay. There we go. We, you know, if if we want to, we want to work with them on this and make sure that we have accurate information. But ultimately, this is driven by us and our team and our collaborations. And so if there's something on there, that isn't that they don't like then or a story that someone bashes their device, and it's still going to be on the website. But it's also that we we appreciate that they've done a lot of work to bring us to this place where we can actually have these discussions and we can actually have options.
Stacey Simms 33:35
Yeah, it's interesting. I mean, I mentioned when Benny was diagnosed, there were more pumps on the market. And while there are fewer now at least the technology is improving. Before I let you go, Cory, could you speak just for a moment about where it's been for you? And you know, where you are looking for to go in the next couple of years?
Korey Hood 33:54
Yeah, you know, I think that I mean, I've been it's a little bit of background I've been using For over, I think two and a half years now and, and I've found a great deal of benefit from it mainly on glucose control, but also in on the mental side and having longer chunks of time throughout the day where I don't think about diabetes, which is really nice. So I, for me, I've been really happy with the progression, it's not perfect, and there are still pieces, you know, multiple pieces you have to wear, we still have to, you know, stab ourselves with sharp pieces of metal. So there are a lot of these things that aren't going to go away and I don't think are going to go away anytime soon. But I do think that the ability to put something on and to not pay much attention to it for a few days is we're close to that. And I think that that's what is really appealing. For me and I think for others that we talked to is that if we do Just continue to decrease the amount of time that people have to think about it, and they feel safe, and feel like it's reliable. And that's really what we're aiming for. And I really do think that that's where we're moving in the next few years.
Stacey Simms 35:12
Laura, let me give you kind of the last word here, you know, what are your hopes for DiabetesWise and how it helps people
Laurel Koester 35:19
just positing said, That's quite a big question. You know, I hope. I think from the homepage standpoint, we want to make the information about diabetes devices and technology is available to everyone living with diabetes, you know, no matter where they live in the US, you know, um, you know, a lot of times just information isn't accessible for people and we want to make sure it's a trusted source of information. And you know, if someone lives in rural America, for example, and they don't have access to support CT groups or an endocrinologist that they can still connect with people like them to learn about the different technologies and devices and experiences of people that are navigating there. They're the same disease.
Stacey Simms 36:18
I'm thrilled that this is available. I really wish it was around when we were choosing our devices, because it was a little bit like throwing darts at a dartboard. Luckily it worked out. Okay. But Korey and Laurel, thank you so much for joining me. I really appreciate your time.
Unknown Speaker 36:38
You're listening to Diabetes Connections with Stacey Sims.
Stacey Simms 36:44
More info about DiabetesWise on the episode homepage and of course, the link is there to go ahead and take the quiz and tool around on their site and see what you think. Up next. What Marco Polo has to do with type one that's in our Tell me something good, but first Diabetes Connections is brought to you by Dexcom. It's 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's helped us talk less about diabetes. That is the wonderful thing about share and follow. As a caregiver, a parent a spouse, 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 separate follow up is required. You can learn more just go to diabetes, connections dot com and click on the Dexcom logo.
It is time for Tell me something good. And this one made me smile when I read it. Oh my goodness. So Rachel shared a story: “We were at Target today and my son's low alert on Dexcom went off and we heard in the distance, ‘T1 I hear you – Marco’ my boy lit up. ‘Yes, you do T1 – Polo!’ and another kid pops up out of breath. And the two of them just chat for a few minutes about Legos or with with everything in common. I melted.”
So how about that? I mean, we've heard some Dexcom alerts or seen somebody checking their blood sugar. And of course, I want to run over. And how are you and what are you doing here? But I don't I try to contain myself. But every once in a while, I'll say something. But I can honestly say it has never occurred to me to yell Marco, and hope to hear back a Polo. Dexcom alert. So kudos to these kids. And Rachel, thanks for letting us know about it. any follow up? You have we would love to find out. I mean, I can see her son doing this again, and maybe they became friends. I don't know. But I thought it was a really cute story. And if you try it, and it works, let me know.
I think the closest we ever came was interestingly enough at a hotel pool speaking of Marco Polo, this years ago, we took a road trip to Chicago. That's a story in and of itself. We took an RV from Charlotte to Chicago. And we did six states and five days to go see Syracuse play in the NCAA Tournament. Anyway, long story short, we did not bring the RV actually into Chicago, it would have been very expensive to do that. So rather than you know, pay a lot and find a place to park it, we parked our RV at my husband's friend's funeral home in Skokie, outside of the city, but that's not what I wanted to tell you about. Um, so we're at the hotel pool. And we look over and there's a little girl with the Dexcom and Omnipod on the backs of her arms. And of course, Benny at that age, was willing to go say hi, be social. So he did and we struck up a whole conversation and they were so nice. It was a lot of fun. Sometimes those diabetes spottings in the wild, really give you more than you'd expect. There. Just something so rewarding and so affirming about knowing you're not the only one, I think as much for parents as for the kids, and someday I'll tell you more about our crazy road trips, we're on a quest as a family to try to hit all 50 states and the kids were so excited about this when they were younger, I think we're on 27 or 28, I'd have to check. And I think I'm the only one who's still excited about trying to do it has to be all four of us together, you have to have feet on the ground, airports do not count. And so feet on the ground, you can't drive through either you have to actually get out and stop and take a picture. You need picture evidence. You don't have to have all four faces in the photo because sometimes people are grumpy and don't want to take pictures. But we need all four of us. So we have one or two pictures where everybody's holding up a cup of coffee or hot chocolate. That one was like at 6am in Ohio on that road trip. I have another one in Las Vegas where we're all holding up gelato, and you can't see our faces. So I'm hoping this summer not to get completely off track to go to New England with the kids because we've got a lot estates a hit up there. Anyway, if you have a Tell me something good story can be a road trip or anything of the kind, whatever works for you. You can send it to me Stacy at Diabetes Connections. com or post it in the Facebook group Diabetes Connections to the group or send it to me on social media, it'll find its way to me, just tell me something good.
Keeping that busy schedule, which I'm actually having so much fun with. I'm going to Raleigh, North Carolina for the JDRF type one nation summit this weekend, doing not only the world's worst diabetes mom presentation, but also my favorite one about making connections in real life Diabetes Connections. I have been doing this talk since before the podcast came about. That's where the podcast got its name. And I'm also talking about social media. So I'm really excited to meet some new people right here in my state. And then in two weeks, I'll be in Maine, for an event in South Portland, Maine dizzy calendar as I head out on the world's worst diabetes. Mom book tour. And if you've got an event later in the year, things are still pretty busy. Definitely through April. But after that, it slows down to about one event a month right now. So if you've got a jdrf summit, if you've got another event, especially in the fall, please let me know. So we can plan for it. I would love to come and meet you. I can do those presentations. We can do a live podcast, we can just hang out and talk. It's always fun to meet new people. And I do love making those in real life connections.
All right, coming up later this week, another mini episode, where I'm taking on what I think is a pretty controversial topic. In fact, when I posted about this on my personal page recently, I was shocked at the response I got. I'm going to be talking about why I think it really is a bad idea to post pictures of your child in the hospital. Yeah, I know a lot of people do this, but it's just not good. So I'll be talking about that coming up on Thursday. In the meantime, thank you as always to my editor john ducatis. audio editing solutions. Thank you so much for listening. I'm Stacey Simms and I'll see you back here on Thursday.
Unknown Speaker 43:12
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
Using a shot of long-acting insulin along with an insulin pump sounds like a weird idea. But Stacey found when her son's insulin needs went way up around age 11, that it worked incredibly well for them. She explains the method of untethered, which is also sometimes called POLI (Pumping On Long-Acting Insulin), what led them to believe it would work, and why you don't always need to use a ton of insulin to benefit from it.
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Episode transcription (rough transcript, please excuse any grammar, spelling, punctuation errors)
Stacey Simms 0:00
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 as a paperback eBook and audio book. Learn more at diabetes connections.com
this is diabetes connections with Stacey Simms.
Stacey Simms 0:27
Welcome to an episode of diabetes connections. I'm your host, Stacey Simms, and this is one of the new episodes I've added for this year. Where in addition to the weekly interview shows that are longer. I have started doing these shorter mini episodes where it's just me talking about one topic, hope you're enjoying them. It's been really fun to get the reactions and hear what people want to hear more about. So if you're brand new, just real quick. My son was diagnosed right before he turned two back in 2006 he is now 15 and a freshman in high school taller than me, and recently got his permit to drive like North Carolina. And our young, young permitted drivers are graduated licensing. But that's not what we're talking about today. Just to give you context on how old he is, and you know where we've been, he was diagnosed 13 years ago.
couple of episodes back. I mentioned Tresiba. I was actually talking about a Tell me something good segment on the show, which we do every week. Um, a family was sharing their last night of Lantus because their daughter was going out of pump, and Lantus really burns. So I was talking about Tresiba, which is another newer, long acting insulin as an alternative. And I had a couple of people asked me about that, one through email and a couple online. Don't you use Tresiba, they said, as an untethered method for Benny, and I thought this would be a really good chance to answer that question and talk a little bit more about what's called untethered or POLI. They both kind of mean the same thing. They're a little bit different, but we'll go through them.
I will start out by saying, once again, I am not a medical professional. All of the information I'm giving you here is through my personal experience as a parent of a child with Type One Diabetes. I am not a healthcare provider, please call your endo or your care team to follow up and ask them any questions especially about a topic like this one. But this is the kind of topic I love sharing about because the only reason we tried untethered, which changed my son's life and has just been amazing. Over the last. It's been more than a year now. We started in September of 2018. So the only reason we started it is because another diabetes mom reached out and said, Hey, have you thought about trying this? So Cheryl, thank you very much. I'm just trying to pass along the information here.
So what are we talking about? Well untethered means making use of an insulin pump. pump and taking long acting insulin at the same time, a lot of people use untethered to mean that they only use the pump for boluses. So in other words, all of the basal would be coming from the long acting shot. That's why another term has cropped up which is POLI pumping while on long acting insulin. And that is supposed to mean where you do something a little bit more flexible 50% of Basal from the pump 50% from the long acting, and all of the boluses from the insulin pump, and that's actually what we do, but I still call it untethered. So for the purposes of this podcast untethered is going to refer to any use of an insulin pump with long acting insulin, whether you're doing 20%, long acting 100%, long acting Basal, that sort of thing, just for conversational purposes. I think untethered is an easier way to go. I have been criticized online For calling it untethered, because I guess technically it's not correct, but you know me that has never stopped me before.
Alright, so why would you use it? Right? What this is my question, why would you go through all of the bother that is an insulin pump, right? inserting the inset every three days wearing the pump itself, you know if you've got little kids wearing it in the pouch, or if you've got the Omnipod schlepping the PDM around, you know, why would you do all that and then add a shot of long acting? Well, in my case, I couldn't imagine it until Benny became a teenager because what happened was his insulin needs went up so quickly and went up to numbers I never thought we would see. I didn't know people could take that much insulin and be ok.
And in our case, and this is a layperson opinion, but I stand by it. I think the insets get overloaded. You know when your basal rate is 40 50, 60 or more units a day. Those insets just They don't seem to be able to keep up. We had so many leaks. We had so many issues. And we tried everything. We rotated sites. We tried a longer needle. We tried every two days every one and a half days. But you know, I turned around the insulin would be like leaking down this kid's stomach. And we knew that it just wasn't working. Something wasn't going right. Plus, he has the Tandem tslim X2 which holds 300 units, we had switched from Animas which held 200. I mean, no pump holds exactly about that. It says it was always a little bit less because you have to prime it and blah, blah, blah, if you use a pump, you understand. But with that 300 units, he was still changing out his cartridge so much more often than before. And I knew that something had to give.
And then Cheryl reached out online and said, Hey, I really think you might want to try this. It really might help. So we talked to our endo about it. He recommended Tresiba which was also what Cheryl had recommended which is a newer long acting. And I always laugh because when I talk about Tresiba, I feel like I'm talking about whiskey Right, it's smooth. There's no burn. It's steady. It just doesn't sound like you're talking about insulin. But all those things are true. And it just lasts longer in the body than Lantus or Levimr. And that works really well. For some people, it doesn't work as well. For others. Of course, your diabetes may vary as always. But what's nice about Tresiba is once you hit the steady state, once you've been taking it for three to five days, there's a little bit more flexibility in when you have to take it. In other words, if you take Lantus every day at seven o'clock at night, you really have to take it at seven o'clock at night. There's there's not a lot of wiggle room with it. But of course, it's always better to take it at the same time. But with Tresiba you can miss that dose. We have missed the dose by several hours. And it really has been okay. It just works a little differently in the body and I'll link up more information as to why it's a different makeup. It really does work differently in the body and it's been amazing for us.
So we worked with our endo and CDE to figure out the dosing, because we had to change it gradually over time to get to I believe we started out with 30% basal from Tresiba 70% from the pump, and we gradually moved it up. And now he's 50-50. It really took about three months to find the right dosing because we were hitting moving target, right, we went from 30 to 40 to 50%. And we were changing things all the time. But we saw changes right away. I mean, it was incredible. Once those basal rates in the pump came down, it seemed to work so much more efficiently. I really do believe it was the insets, but even if your insetts are working great, and your basal rate is like 20 a day, you know, if it's different and you're not a teenager, why would you want to try this?
Well, interestingly, the first people I ever heard of doing untethered, were adults. And the reason that they shared with me was, they just had a little bit of trouble, especially at first trusting the insulin pump. You know, think about it. If you've taking shots, your whole life with diabetes. And suddenly you're on an insulin pump. But you know, it's been 10 years or 20 years, it may be difficult to trust it, not just the technology, but you don't see the insulin going in, like you do with shots. So both adults said that they started with untethered, because it was kind of an emotional thing. They wanted to make sure that everything was working, they wanted to kind of ease into the pump. And then one person did that for a couple of months and one person stayed on it. And I have another friend who has really bad anxiety and she found herself worrying. Are my insets working? Do I have a bad cannula, is something's gonna go wrong while I'm sleeping. And her endocrinologist prescribed, untethered to help her with that anxiety and to help her feel better and to know that the insulin is indeed going in. And that's made a huge difference for her too. So there are a lot of reasons why you consider something like this.
But I think the most important thing is to know what's out there to know that this is something that you can do. You don't have to do it forever. You don't have to do it at all. But if you want to try it out, you talk to your endo. And you can do it for a couple of weeks, couple of months. Keep it or not, if it doesn't work for you, nothing ventured, nothing gained. And if it works, it could work amazingly well. Benny hit puberty and oh my gosh, I'm sorry, I don't wanna get too personal on him. But I do want to share this. He hit it like a rocket ship. I mean, it just happened so quickly. It was and he was younger than most kids. And his insulin needs went way up, his numbers went way up, because we really didn't understand what was going on. You know, we were doing everything we felt we were supposed to be doing. I was helping him at the time. So I know it wasn't a question of not bolusing. But whatever we did, you know, once you get high, it's so hard to come back down and that was happening all the time. And in my head I'm thinking, you know, is he eating when I don't know about it, is he not taking insulin, you know what's going on, and it was the basal rates, they just needed to be increased. And once we added Tresiba, and took the load off those insets, his A1C, all his numbers, his time in range, everything went back to pre puberty, even though his insulin needs have gone up, and his teenage hormones are obviously still there.
So he's 15. We just had an endo visit and things are finally beginning it looks like to come back down in terms of insulin use. So I don't know how long will stay on untethered and control IQ coming out is, you know, possibly going to change things for us. But he has said he wants to stay on untethered for at least a month into control IQ, and our endo and our CDE supports that and of course, I do too, so we shall see what happens. But if you're a parent of a teenager, and you're freaking out, because their numbers have started to get really high, and you think, oh, they sneaking food, are they not bolusing, but you know, that doesn't feel right. You just don't think that's really the case of what's happening with your kid and I don't want to talk about sneaking food that's those two words should not be used together. So let's just say eating food without bolusing. That's a different topic for another time for sure. But you You're not sure what's going on with your kid. Do not assume the worst is all I'm saying, do some basal testing, talk to your endo about basal needs. Because if like me, your kid was diagnosed at two. And the first basal rates you ever saw on a pump were 0.025 when they suddenly shoot above needing three full units every hour, it's easy to think this can't be happening. This isn't possible. But it is. And this is just one way to kind of help ease the pressure off the pump. If that's not working the way you and your endo think it should be. It's an alternative to think about that really, really helped us.
It is no fun to take a shot every day. I give Benny so much credit. Although now he rolls his eyes at me. I can't even say like, I'm so proud of you. And he's like, Mom, you're so lame. But you know what I mean, right? It's not me taking the shot. It's not you if you're a parent. So we really have to get our kids on board with this. I'm not above incentives. Try this for a month. You know, here's 25 bucks for Amazon, or whatever works in your family. But I think it's important to at least ask these questions rather than live day in and day out wondering, what are we doing wrong? Feeling like a failure. teen years are tough enough. And I know, you know, using Tresiba isn't gonna solve everything. But I talked to so many parents who just don't realize how high the insulin needs can get. I mean, look, a basal rate of four units an hour. sounds crazy, but it's not that uncommon, using 80 to 100 units a day of basal insulin. It sounds bananas. But for some people, that's what they need. And people who don't have diabetes, their pancreas is are just pushing this insulin out as teens. You have no idea how much insulin your kids’ friends without diabetes is making them his body. They need what they need. So talk to your care team about it. Talk to your kid about it. And if nobody thinks it's a good idea, just remember, I am the world's worst diabetes mom.
Oh, I will would be remiss before I go to not say, while I have sung the praises of Tresiba, like everything else in diabetes land, you're often at the mercy of your insurance company. We were very lucky to find that this was covered. But it is not always it is a much newer, long acting, so you may have to fight for it. definitely make sure your endo is willing to go to bat and help you appeal if need be. If this is something that you really feel strongly about, and they do, too. You don't have to use Tresiba as the long acting to go untethered, it's just what has worked for us, but unfortunately, it is so new that a lot of insurance companies do not cover it yet.
Alright, we are doing these minisodes every Thursday, and every Tuesday, we have our regular length interview shows where I talked to newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people just living with Type One Diabetes. Learn more at diabetes connections.com. You'll also find the episode homepage and links to a lot of what I spoke about here, including studies about untethered and a lot more information so head on over to the website, please be sure to join the Facebook group diabetes connections group. I'm Stacey Simms, and I'll see you back here next week. Until then, be kind to yourself.
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Transcribed by https://otter.ai