The DiabetesMine D-Data Exchange is a great time to catch up on the latest technology and get a sneak peek at what’s coming. This is the conference where #WeAreNotWaiting was coined in 2013, which almost seems like ancient history now! We talk to founder Amy Tenderich about what’s new and take some time to focus on their effort to reach more diverse voices.
Watch the videos from Innovation Days here
In Tell Me Something Good, a big diaversary to celebrate.. Stacey’s son marks 14 years of type 1 diabetes this week.
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Stacey Simms 0:00
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This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, the DiabetesMine innovation days is always a great time to catch up on the latest technology and get a sneak peek at what’s coming. This is the conference where we are not waiting. The phrase was coined in 2013 which almost seems like ancient history now
Amy Tenderich 0:44
stuff that seemed like such a pipe dream at the time like this whole idea of a closed loop system it was like kind of eye roll or like but now we have a very viable do it yourself. Homemade pancreas closed loop system which I’m using By the way, I’ve been looping now for quite a while and it’s a game changer.
Stacey Simms 1:00
That’s Amy Tenderich, founder of DiabetesMine who puts this conference on twice a year. This time around. There was also a big focus on inclusion and representation. Lots of info share
In Tell me something good a diaversary to celebrate 14 years of type one in my house. Betty was diagnosed the first weekend of December in 2006. And I just remembered a funny story from that week that I haven’t told before. I was always the worst.
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 the show. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. As I said in that intro, my son was diagnosed with type one right before he turned to 14 years ago this week, my husband lives with type two diabetes, I don’t have diabetes, I have a background in broadcasting in radio and television, local news. And that is how you get a podcast.
I’m going to be talking about Benny’s diaversary later on in the show, I will tell you a rather silly story that I just remembered about our first weekend home from the hospital. So about a week after we got home, and we went out we had theater tickets. I will tell you that story later on in the show. But stick around. It’s a funny one. I think it just kind of sets the tone for how we manage diabetes and continue to this day. Oh my goodness.
I also want to let you know that friends for life is having another conference of virtual conference. And if you are listening as the show is first airing friends for life is happening this Friday, and through the weekend, December 4 2020. And along with the incredible educational opportunities and the wonderful social stuff that they have great meetups, I am also doing my annual game show I do a version of NPR is Wait, wait, don’t tell me, which is a really fun game show. If you’ve ever listened to it. I do Wait, wait, don’t poke me and I have taped that and we will be airing it and premiering it this Friday. So definitely come by and please check that out. I will link up all the registration information for friends for life from the wonderful folks that children with diabetes, just go to Diabetes connections.com and click on this episode. You know every episode has pretty extensive show notes where I link up information. And I also put a transcript now for every episode in 2020. And we’re starting to work backwards. So hopefully eventually, I’ll have a transcript for every episode of the show. Thanks for your patience on that.
All right, talking to Amy Tenderich from DiabetesMine in just a moment. But first diabetes Connections is brought to you by One Drop in One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drop 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 next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.
My guest this week can be summed up I think in the motto of the conference. We’re about to talk about learn, connect, collaborate, Amy Tenderich was diagnosed with type one as an adult in 2003. And not long after that she started the website DiabetesMine, which is a terrific source of news and information in our community. Seriously, if you’re not reading it, I’ll put a link in the show notes. Make it a bookmark. They even say that anymore. You know, put it in your reading list. They say that anymore. Make sure you check out diabetes mind because all kidding aside, they do a tremendous job on reporting in depth news information in our community if you’re interested at all in technology if you want to learn personal finance stories to they do that it’s a great deep dive and I rely on it for a lot of information, I share her on the show, of course, I always credit them. But in 2013, Amy started organizing the D-Data exchange twice yearly events that focus on technology and breakthroughs. This year, Amy added topics about diversity and representation in the diabetes community. It’s something she was already working on, as you’ll hear before, the events of this year brought it to the forefront for many people who maybe hadn’t considered that before. But maybe it was already on it. Lots of information here and look forward. Of course, it’s always great to catch up with Amy.
Amy, welcome back. Thank you so much for joining me to talk about D-Data. I really appreciate it. This conference is always so interesting to talk about. So thanks.
Amy Tenderich 5:46
Oh, thank you for having me.
Stacey Simms 5:49
first question really has to be just the difference this year in terms of making everything virtual. You know, I was in some of the conference presentations, I have to say this was a cool looking online conference. Do you mind share just a little bit about how were you pleased the way it went? I know at the beginning of the year, it must have been kind of crazy to regroup?
Amy Tenderich 6:09
Absolutely. It was it was been a big learning curve, obviously moving from in person to online, no matter what kind of event you do. I mean, first of all, there was this, oh, my God, I’m in the events business. And now we have COVID. And you know, what’s going to happen? And there was some question about whether people would still be interested. But I feel like I found that people are really anxious to connect, because we’re not going to all these in person events. You know, most of us feel like we’re just sort of out there some kind of juggernaut on our own trying to keep up just by clicking on links. And so having a conference that allows people to connect, I think is you know, something that people are still really looking for, we had to do it the first time for our June event, because we do these D-Data events in June and then in the fall. And so you know, that was literally starting from scratch. Our event, as you may know, is sort of like a leadership forum, we always kept it at about 150 people Max, try to keep it somewhat intimate, so that it really put an emphasis on collaboration and interactive sessions. And you know that the networking part of it is really important. So we thought, how can we recreate that.
So it’s not just people sitting and watching, you know, one presentation after another, especially when everyone’s doing so much of that these days on zoom. So I’ve been working with the same event manager, actually, for years, a lovely woman who, out of San Francisco, who helped me find this platform that is really, in fact, they do use it for much larger events up to thousands of people. But the thing that’s so special about it is it kind of recreates the experience of sort of walking into a live conference you like sit down at a table, and then you’re able to immediately see and talk to the people who are at your table. And if you jump over to another table, then you’re talking to that group. So it kind of looks like a zoom breakout room. But the idea is that it’s you know, it’s sort of oriented by table. And then what if you want to work together with the people at your table, there’s even this whiteboard function that lets people have kind of a little sandbox to play in. And so that we do, again, a lot of interactive stuff, where we try to get people to talk with the group at their table and brainstorm things. So they were able to use that sort of shared space where you can draw pictures and you can post links and and you know, get creative. And you can actually capture whatever your your table does there as a, you know, an image and save it for later if you want. So it really it has this great functionality that allows both live presentations, pre recorded presentations, and then a lot of interactivity. Yeah, so again, it was a big learning curve. You know, it really helped me that we had done this once in June. So going into our two day event. Now in the fall, I had a better I didn’t have to kind of recreate that whole wheel of just understanding how the online platform works. You
Stacey Simms 8:48
know, this conference is so well known, as you said, leadership technology, things come out. And we’ll talk about this that, you know, years later come to market. But one of the things that you focused on early on and or even really, before the conference was this survey and discussion of representation.
Amy Tenderich 9:06
So yeah, what happened there? It’s actually I’m kind of proud of myself and this was prior to the whole, you know, uprising around George Floyd and the big sort of, you know, visibility of the Black Lives Matter movement back in January, I was talking with Cherise Shockley and a few other people and said, You know, I feel like we should have a panel at our event to kind of delve into this I feel like this is a it’s sort of something that’s a little bit on the margins we talk about every now and then but this is so not solved, but I feel like people of color are really not represented and and Sharif was all over it said absolutely. We need to have this conversation and started recommending people and so I had already spoken to Mila Clark Buckley, who you may know and a few other people reached out to area Lawrence. And then of course, everything kind of exploded and it was like Okay, wow. And so, in our planning sessions, I basically kind of convened this group of advocates of And I said, Listen, you guys, I want to have a session, I think it’d be great to have a live kind of Roundtable. But, you know, what else can we do? Or how do you guys want this to run? What do you think would be meaningful? So what was so cool is that that group actually drove the whole content of it. So they said, Listen, we’re happy to come and be on a panel and talk. But you know, we, again, people of color are not a monolith. Right? They can’t represent everyone. And they sent me to get more voices involved.
So they had the idea, you know, can we do some kind of research? Can we do a survey so we can gather, you know, input from a larger, you know, swath of our community? And they also said, What about a video? What if we got people to, you know, because we had done this before for diabetes mind with our winners, and you’re familiar with the Stacey, where we have these people who are patient voices winners, basically applied to have a scholarship. And then if they won, we flew them out to Northern California, and put them up to be part of the event. But in years past, we’d had those winners each do a little snippet, and just them talking about, you know, who they were and what their sort of advocacy soapbox was, was in the area of diabetes, if you will. So the idea was to do something along those lines, where we ask a larger group of advocates of color, to just say a few words about what they do and about their thoughts on you know, being a person of color with diabetes, you know, what’s good, what’s bad, what would they like to have changed, see change, I said, it’s completely up to you guys. So I don’t know if you got to see that. But we created this compilation video that started off our session. And it was really impactful, because it was just people saying, their bit, you know, what’s disappointed them or why they do the work they do, or what they would like to see change. And it’s just what, you know, I can’t I talked about this session is sort of unveiling what’s been left unsaid for too long. You know, I think that a lot of this was kind of going on behind the scenes.
And some of these people of color also told me that in the past, they kind of if they had a negative experience, they would kind of brush it off, they would just say, Oh, it’s kind of a one off, it didn’t. It’s not necessarily racism, it’s just, you know, I had a bad experience. But when they start to connect with each other and share these stories, they realize there’s a lot of commonalities, you know, of getting brushed aside of being misdiagnosed of sort of not being proactively told about all of the latest, you know, technology options, because maybe a healthcare provider would sort of assume that they weren’t going to be the ideal candidate for a pump or a CGM or something cutting edge. So, you know, it seemed that there were some themes. And when we saw this group of advocates, each recruited more people in their community. So we had a team of about 12 people who actually helped craft the survey questions and vet the survey, and then helped us get it out there to the community. So we had about about about 207 people who completed the survey, there’s always some people who start and don’t complete answers. And I did a whole presentation on sort of summarizing the results, which is also a video that’s posted online that we’ll be sharing with people. But yeah, it was just so eye opening. So so many of their concerns are similar to anyone with diabetes, right? They’re worried about costs and access, and you know, finding a physician who’s empathetic and, you know, who treats them as you know, as a partner in their own care, and all those things. I mean, those are things that I would say are across the board for anyone with diabetes or issues. But what also became very clear that they do not feel represented, we got very strong results that people said, both in marketing and in educational materials, they don’t feel represented, they need to see more people who look like them. And that’s everything from you know, skin. And he says to, you know, just, you know, seeing someone who looks like me, who might actually use that product.
Stacey Simms 13:43
Wow, I mean, so much going on there. And I know a lot of people were posting that they were really excited to not only be involved in it, but to see it. And I always hate this question. But what comes next for something like that?
Amy Tenderich 13:55
Is the million dollar question. And that’s actually one of the things where you feel like you’re sort of a victim of your own success because you have an event and people say, this was so great. What else you gonna do? I’m like, What do you mean, I’m still recovering from this.
Stacey Simms 14:12
Back to our interview in just a moment, but first Diabetes Connections is brought to you by Dexcom. And when you got a toddler with type one, you do hear rumblings for a long time about the teen years, you know, hit us full force a little bit earlier than most and I’m so glad that we had dexcom Benny’s influence started going way up around age 11. He’s almost 16. And it has been an absolutely remarkable transformation, I think is really the only word for it. He’s so much taller, everything’s different. I mean, I need to tell you what puberty does, but along with the hormone swings, I cannot imagine managing diabetes during this time without the Dexcom continuous glucose monitoring system. We’ve been able to react more quickly to highs and lows, see trends, adjust insulin doses with advice from our endo. I know using the Dexcom G6 has helped improved Benny’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, go to Diabetes connections.com and click on the Dexcom logo. Now back to Amy, where I have asked her what’s next.
Amy Tenderich 15:19
So I don’t know. But you know what the fun thing is, I mean, not only the fun thing, but I think the important thing is to not try to decide that too soon, the world is changing. And these events are always about kind of what is timely and what you know, we try to sort of take the temperature of, you know, what is boiling up hottest in the in the patient community and in the industry. So especially with our D-Data day, with the technology side of it, you know, we try to let the dust settle from the existing event and see where things are going. What are people talking about? Is it suddenly that smart pens are all coming out to market? And people are buzzing about that? Is it some of the latest trials for the closed loop systems? You know, is it sometimes it was like accuracy of, you know, cgms, that became like a big hot button. You know, obviously right now a lot of it’s just about affordability and access, it’s an always an ongoing issue. But we really try to and again, especially for the day to day I try to check in with the community, you know, I’m a conduit, but I’m not one of the hardcore developers, or the people who work on loop who make these incredible tools. So I always check in with them and say, you know, what is the community buzzing about what else is you know, who’s working on something new and cool? How are people feeling about the latest commercial products have come out, or a lot of people you know, chattering about that they have a lot of input, you know, and just try to sort of find out what’s happening out there and then address those things. And, you know, really keep it fresh and timely. So that we’re really having conversations about the things that are like currently on top of mind,
Stacey Simms 16:49
it’s so hard to predict, certainly, right, what’s going to take off because you always have devices and people at this event that are as you said, so cutting edge and, you know, certainly the DIY crowd is always well represented. So it’s hard to figure out what’s really going to hit Were there any products or standouts, I saw a non invasive CGM of some kind like a bracelet that was there. I know Dexcom spoke there was the there was a loop link. I mean, was there anything that really struck you or that you want?
Amy Tenderich 17:19
Thank you for asking. So the fall event is actually this two day thing where one day is kind of our broader Innovation Summit, it was our first event that we ever did. And then the second day is D-Data where we go really deep on the technology. So that’s why this time, the first day, we did a featured panel on telemedicine and like whole person care. That was very cool. That included Vita Health, One Drop, health first, and what’s the fourth person, fourth group that was there. I can actually look it up. But yeah, but we really because obviously telemedicine is now just medicine. Right? Right. Right. You know, it used to be the sort of add on thing that you could do if you wanted to, but you know, now it’s really how care is being delivered. And the whole notion of like, Can we get past just focus on glucose numbers and lots of coaching combined with technology. And then they’re trying to help people with like a variety of health conditions while doing really high quality diabetes care. So we have this great talk about it. And I’m sorry, January AI was the fourth company and they are this amazing new machine learning based company out of the Stanford area that is actually doing a platform currently for type two diabetes, but I think they will be expanding. And that group also did a demo on day two, the first day again, was kind of this broad look at like what’s going on in healthcare and diabetes care, that’s when we had our inclusivity and diversity panel, we also had an interactive group problem solving exercise where we got people to we had a little It was kind of like choose your own medical adventure. It was this video of this, like a sort of mock patient and had her talk about her issues that she’s facing. And then there were sort of three choices of what you could recommend for this woman to do as sort of her first line of defense with her diabetes care. And then we had people discuss that at their tables and decide and then vote on which one they would pick first. And then we showed what how they played out in real life, you know, and in order of what people chose as the first choice, so we’d have to do some really cool stuff to get put people kind of in the shoes of a health care provider but also in the shoes of the patient as in again, we have a mix of people at these events.
So you’ve got you know, diabetes educators there and endocrinologists and even some like nutritionists and other people who are recommending stuff to patients and then you have patients who are you know, walking the walk and so it was kind of a cool way for them to discuss like, Okay, if you recommend this to this woman, like what are the pros and cons gonna be? How is this gonna play out? That was really fun. I we like to put people in the driver’s seat and kind of see what they do. And a lot of this event is about the fact that you might have someone who is like, You know, really big has big following online as a patient advocate sitting next to you know, the CEO of some major pharma company, sitting next to you know, someone from FDA, and then all these DIY folks mixed in. And you know, we’ve got healthcare designers, and we’ve got educators and someone who might be the head of the you know, Joslin Diabetes Center. And so they get a chance to kind of interact and great networking, and I think really gives people a lot perspective and helps to break down barriers between these groups. You know, it really does.
Stacey Simms 20:31
I was there two years ago, and it was the first time that I was in the same room as somebody from the FDA. And I remember thinking, This is amazing. And it turns out that part of it was my fault. Because as they explained to me, when I asked like, how come I haven’t seen you before, you know, basically, you can come to us, and here’s how, and I have put that information out, and I will again, but it was it was one of those situations that you know, I’ve been in the diabetes community for 12 years at that point. And it just hadn’t occurred to me that I could have access to somebody like that. And this is a, you know, a public servant, really. And they explained how to do it. And you know, what the deal was, and it was funny to me, because I while I have a podcast, I’m a diabetes mom. Right? So it was a really nice, you know, lowering of by perceived at this as this boundary. And I’m sure that many other people feel that same way. It’s It’s nearly as you said, it’s a lot of interesting people in the same room.
Amy Tenderich 21:21
Yeah, thank you. And I mean, that’s why I had this little panic attack when we, you know, when they close down all the Yeah, person events, like, how can we recreate that but, you know, as much as it gets old, being on online stuff all day long. It’s amazing what you can accomplish, really. And you know, there are some, like I said, Great platforms that are being improved upon. So after we use this platform in June, we actually gave them feedback about what we would like to see. And they’ve made some progress, like, yes, it’s really great.
So you’re asking about the non invasive cgms and whatnot. So CGM, obviously is this burgeoning area. So our opening speaker for D-Data this time on Friday, November 6, was Kevin Sayer, the CEO of Dexcom, talking about the future of CGM. And clearly, I mean, if anyone’s qualified to do that, it’s them. They’ve led the way. But there are dozens of kind of want to be you know, me to CGM companies coming out, they’re doing all kinds of stuff from implantable to, you know, non invasive to semi invasive to just straight up Dexcom copies. We did a story diabetes might not long ago, something like 39 new companies working on cgms, you know, yeah, so there are many, many of them. Obviously, the non invasive or minimally invasive feature has been a dream for so many years. And there was this white paper written years ago called the deceitful Turkey, by an expert physician who had been researching it for so long, it’s a very difficult thing to crack to be able to get something that is accurate and really usable. That doesn’t penetrate the skin at all. But then you’ve got companies like bio link that are working on like they call minimally invasive with these like micro needles. So it’s not drawing blood, but it’s sort of like pokes into the skin very minimally. Mike Hoskins and I, who’s my main man diabetes, mind, we were just talking about this the other day that it’s probably time to do another story to sort of explain where we are with non invasive technology. Because Yeah, nobody’s really done it yet successfully. But there are lots of companies that are just on the verge of having something really viable, which is exciting.
Unknown Speaker 23:27
I’d read that story. Yes, definitely.
Amy Tenderich 23:31
You know, especially now that you know, one of the big hot topics is the idea that CGM is going to become really, truly become standard of care and become more widespread use even among people who are not on intensive insulin regimen. So it’s like what is going to help them be comfortable wearing it and get the most out of it. And we had another interactive session on Friday. And that was all about that it was a mock. We had people at their tables pretend that they were like a design group making a new CGM. And they had to pick their priorities for designing the CGM, and talk about why they did that. And were they trying to simplify data learnings for people? Were they trying to make it more motivational to use a CGM? Or were they trying to kind of like increase the consumer appeal and have it you know, have this kind of sexy look and feel. But I think a lot of people agree that especially for non insulin users, you know, the, the physical factor of the sensor is going to be a big deal breaker, right? But
Unknown Speaker 24:26
Amy Tenderich 24:27
yeah, there’s just so much going on. And you know, it feels like it never changes. But then again, if you look back, it’s like, wow, things have really changed so much, even since we started doing this. And well,
Stacey Simms 24:38
and that’s what I want to ask you about too. We are not waiting. The phrase, as you obviously know was coined at the D-Data exchange. I was at the first one in 2013.
Amy Tenderich 24:50
That’s correct. So we started doing the Innovation Summit in 2011. So we had two of those events. And then the third year, it became clear that there were Are all these sort of people out there who were tinkering and you know, doing yourself the sort of technology savvy, it started with a group of D dads, basically diabetes dads who work in technology, who were like, Hey, we can do stuff with this. So and we decided that we would host a get together for those folks. And we were doing the summit at Stanford School of Medicine, that we just did it as a pre day to our summit, the day before, we got this sort of classroom, in this bio center directly across from the big hall, and just invited a bunch of people who were happened to be, you know, in or near the Bay Area, who would be able to come and we thought we’d have, you know, 25 people or something. And we were smashed in this classroom with like, 50 plus people, and there was all this excitement, and everybody was like, sharing their, what they’re doing. And we kind of realized, like, wow, we’re really onto something. And I want to give due credit to Howard Look, and Brandon Arbiter, from Tidepool, who really helped me I, you know, they were just coming on the scene then too. And so we were having all these conversations, and I said, Hey, you know, I really want to do this event, you guys want to help me, like get this group together? So we worked on it together. And what happened is the next day at the summit, I had asked Howard to get up and sort of summarize what happened at this D-Data exchange thing. And he kind of, you know, presented this term, which I believe the first person to utter it was Lane Desborough who is also a diabetes dad, as you know, and then worked at Medtronic for many years, and then was at Bigfoot for a while. But he basically said, what I’m hearing here is that we’re not waiting. We’re not waiting for the, you know, industry or for the FDA or for anyone to tell us it’s okay to do this. We can do it. We’re doing it. Yeah. And yeah. And then it’s, you know, just as you know, absolutely blossom from there. So,
Stacey Simms 26:38
as you look back at that, and it’s been seven years, and it seems like as you had said earlier, it seems like things are moving so slowly and things would never change. And now Surely, there’s a long way to go, right. It’s not perfect. But now we have hybrid closed loops. On the commercial level, we have more DIY stuff, we have DIY stuff that might be going to be FDA soon, thanks to type pool when you look at the last seven years and your own diabetes management. And if you don’t mind me asking, what are your thoughts about how far we’ve come since lane said it, and Howard wrote it on the whiteboard, you know, we are not waiting. It’s pretty remarkable to look back at these seven years.
Amy Tenderich 27:14
It’s absolutely remarkable. And it’s stuff that seemed like such a pipe dream at the time, like this whole idea of a closed loop system, it was like kind of eye roll or like, but now we have a very viable Do It Yourself homemade pancreas closed loop system, which I’m using, by the way, I’ve been looping now for quite a while. And it’s a game changer, you know, and now the industry is coming out with them, it’s a little slower. And obviously, on the industry side, you know, they have to, you know, there’s so much risk averseness they need to be really careful. So they’re, you know, have to make incremental changes. But we’re getting there, I think soon. Again, you know, the idea of just getting a pump without a CGM, or even a smart insulin pan without something connected to it would just seem silly, because it’s like, of course, you want to have the whole deal so that you can both continuously monitor your blood sugar and then also get help or have it automated to decide your dosing your ideal dosing amounts. So we’ve come a hugely long way.
Insulin pens were done back then and talked about connecting them it took, you know, it’s only very recently that the pen came out. And that we’re really going to be able to actually use pens in a larger system, again, connect them to CGM and whatnot. And the apps obviously, becoming incredibly long way they were pre primitive back in the day. And, you know, I like to say the biggest problem was that so much of the stuff was being designed by people who don’t, you know, not only don’t have diabetes, but don’t have any patient experience at all, it was being designed, it was just engineering driven, or clinically driven. And it wasn’t livable, and it didn’t solve real world problems for people, any devices or apps that just add more burden, it’s not going to be continued to be used. And it makes absolutely no sense. You know, no, no
Unknown Speaker 28:56
Stacey Simms 28:57
if you could look into your crystal ball for us just for the next year. Really, I know a lot of things were held up this year, because of COVID, things that we kind of expected in 2020 might be pushed to 2021. Or further, I won’t hold you to it, we’re not going to really make a bet on this. But I’d love to get your take on what you’re looking forward to in 2021.
Amy Tenderich 29:16
Oh, thank you so much. So we were privileged to be able to host the first ever closed loop system showcase at our fall event last year. So the end of 2019, we had six of the companies that are like getting closest to having or already have a system out. And it was just amazing. You know, they came and they talked about the details of their algorithm and you know, how they, what the targets are set out and whether the settings are customizable. And then we had patients there who had used the systems either in the real world or in studies. And I just think that there’s going to be so much continued improvement on these systems. One very encouraging thing is that the studies are no longer being done in some kind of clinical environment or they are doing real world studies where they literally go out Follow people while they actually go out and do sports and eat food and do things that real people do, you know, so I think it’s hugely important for kind of the form factor and just to understand how they can improve on the kind of day to day living experience with these systems. So I’m super excited about that. I do think also that insulin pens, again, gone from just being another sort of thing that you use to stick the insulin in your skin to an actual tool that can help people figure out their dosing and help people keep track of their, you know, their whole diabetes management, regime, and, you know, be connected to, you know, your stream of glucose data, which helps you understand what’s happening. So, you know, all of this stuff is just getting so much more real world usable. And I think that’s really going to be kind of the linchpin going forward. And it’s already hard now for family for people who are newly diagnosed now, to even understand how good they have it. Compared to what it was, like, you know, even when I was diagnosed in 2003, I mean, it was a world away. I mean, right?
Stacey Simms 31:06
What is the next event for DiabetesMine, I know, things are up in the air with COVID.
Amy Tenderich 31:11
You know, so our, you know, traditional pattern has been that we do the D-Data exchange twice a year, so, so again, traditionally, pre COVID, it was in June, on the Friday before the big at a conference, wherever that happens to be. So we’ve done it in New Orleans, in San Diego, and Boston, Orlando, all the places, right. And then in fall, we would do this two day event, which was always in Northern California, it was at Stanford School of Medicine for years. It’s also been at UCSF School of Medicine for the last couple years. And that was the called the Innovation Summit day, which was kind of this broader look. So it didn’t only have to be technology, it could be anything that was innovative, whether that’s a community program, or whether we were talking about innovations in like coverage, or community events, whatever, and just a variety of different things about improving care. And then the D-Data exchange day, which was always the deep dive into technology. And that event kind of has a pattern to it. At least we’ve always done it so that we have a featured DIY talk. So we try to always get some interesting speaker from the DIY community to come and talk about something that they’re working on. That’s cutting edge and new. And whether it be about the community itself for about a particular tool, that we traditionally had FDA come and speak because it’s like, let’s hear from them. They’re so important in all of this. And then we have this lineup of demos that we always do kind of cutting edge stuff. And that’s been everything from as you mentioned, new CGM systems to like apps that motivate teenagers to I mean, we’ve in the past, we’ve even had some I don’t know things for diabetes complications, like socks that can monitor your feet for neuropathy. But right now, it’s it’s been also a lot of AI, you know, machine learning driven platforms that are trying to help people better calculate their insulin doses are better predict what’s going to happen when they eat certain things, or do certain activities, different ways to be able to kind of glean meaning out of your data. Generally, we do June and then we do like early November, it kind of dawned on me that if if Ada does not go back in person, this coming June, which they may not, then we don’t necessarily need to be tied to that date anymore. I mean, the the idea originally was, you know, everyone’s in town. And it started that very first year that we did the bigger D-Data it was ADA was in San Francisco, which is my hometown. So we’re like, oh, everyone’s gonna be here. So we’ll just do this kind of afternoon thing before and get everyone together. And that’s worked really well. Because physically, people are, you know, in from all over the world. But right now, everything’s kind of footloose. Because of COVID.
Stacey Simms 33:44
well, thank you so much for coming on. And talking about all this and sharing these stories and for doing the conference and putting it all out there. And we’ll link up as much as we can. If anybody missed it and wants to read all this stuff. It was really well covered on Twitter, I was following along the hashtag when I couldn’t be there. And we’ll get the word out. But he thank you so much for joining me.
Amy Tenderich 34:02
My pleasure. Thank you so much. And thank you for being part of it. And I hope you will join us again sometime.
Unknown Speaker 34:07
You got it.
Unknown Speaker 34:13
You’re listening to diabetes connections with Stacey Sims.
Stacey Simms 34:19
More information about DiabetesMine the D-Data exchange. And that video we mentioned near the top of the interview the video about representation what people had to say, it’s only five minutes, it’s well worth your time. I’m gonna put it in the Facebook group and I will also link it up here in the show notes. Really interesting people definitely worth watching and worth possibly a follow if you’re on Instagram or social media as well check them out. And I love talking to Amy because we always learn something new and see what new technology is coming. So of course more to come in the new year. Boy, I feel like there’s a lot coming in 2021 that we’ve been waiting for. So I don’t wanna get too off track or into the future but I’m excited and I’m Hoping to do an episode or two about a summary of what’s coming. And I should also let you know I’ve also got interviews lined up with some of the people that are releasing really cool stuff coming up. We’ve got a lot to look forward to when it comes to technology in the new here,
okay, tell me something good in just a moment. And it’s an embarrassing personal story, but I will share because we’re friends here, but first diabetes Connections is brought to you by Gvoke HypoPen, and you know, almost everyone who takes insulin has experienced a low blood sugar, and that can be scary. A very low blood sugar. It’s really scary. And that’s where Gvoke HypoPen comes in. It’s the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it’s easy to use in usability studies 99% of people were able to give Gvoke correctly. I’m so glad to have something new. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn’t be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon comm slash risk.
Tell me something good. This week is about my family. We are celebrating a diaversary my son was diagnosed with type one, as I always say right before he turned two back in 2006. Which means as hard as it is for me to believe we are marking 14 years and that kid is going to be 16 pretty soon. So the story I want to tell you here for Tell me something good. And if you’re a new listener, he is doing great. Maybe that’s the good news story I should start off with he is happy he is healthy is independent. He drives me bonkers. I want him to do more in his care. I want him to change his sites on the spot every three days and pre bowl is 15 minutes. Every time he eats. He doesn’t do that. But you know what he does so much. He’s super responsible, as far as I’m concerned. And he is almost 16. So for where he is, and what I was told could happen during the teen years. I really keep my fingers crossed, I knock wood I’ll swing a dead chicken if you make me. I mean, I really feel like we have a lot to be thankful for. So having said that, this is a story about how we did everything wrong.
14 years ago, let me set the table. When Benny was diagnosed, I have a daughter. She is three years older than him. So she was just five. their birthdays fall in such a way that she just turned five he was not yet to. And my brother in law. My husband’s brother was living with us. It was a temporary situation. He was with us I want to say for about, I don’t know, a year, year and a half. He was between jobs. We had two little kids. We both worked full time. He asked you know Hey, can I come stay with you for a little bit while I get things settled? And we said please come down and be like a nanny. We can’t have you here fast enough. And it was amazing situation. It really was uncle David was just a godsend, great guy and, you know, left us and went back to a full time job and a great life and relationship in a situation where he now lives too far away. If you’re listening, David, he’s up in Pennsylvania.
But he was there when Benny was diagnosed, which made our lives kind of easier. He had another caretaker in the house when Slade and I took Benny right to the hospital on that Saturday morning. That first weekend in December December 2 I always have to look at the date December 2 2006. David stayed home with Lea until we were ready to trade off and have her come visit and that kind of stuff. And we all learned how to do things together. So we came home Three days later, we tried to go back with our lives. Haha, you know, we were all kind of in the thick of things. And that Saturday night, the following week, Slade and I had tickets to go see a show, you know, I’m a big Broadway fan, love that kind of stuff. And David said you should go I’ve got this. I know just as much as you guys do. And he really did. I’ll watch the kids go and your phone call away. So the theater in Charlotte, you know, we have one of these regional theaters where the Broadway shows come traveling through. It’s about 30 minutes from us. Yeah, you really put the pedal to the metal 25 but 30 to 35 minutes. So we thought okay, this is good. We’re all our doctor says go on with your lives. We’re going to go on with our lives. David’s got this. The show was Spamalot. By the way. It was you know, very funny musical comedy. And we decided to go and enjoy ourselves. We got dressed up. We went not 20 minutes into the show, maybe 30 minutes of the show Slade’s phone starts buzzing, and he gets up and leaves if you are familiar with the show, this is just after he is not dead yet. And the lady of the lakes. So I’m sitting there watching this very funny show, being amused being entertained. But my husband is no longer sitting next to me and I know something’s up right. If he had come right back, it might have been something easy just to question, but he’s not back. I think I made it about halfway through the song that goes like this. I remember seeing that which is the song that really just goes on and on. When that ended, because I wasn’t gonna run out of the theater when someone was singing people applauded and I booked it out into the lobby.
And Slade was on the phone, pacing and talking and pacing and talking. Here’s what had happened. David had given Benny an injection for dinner or snack, I don’t even know whatever it was it gave me an injection. And remember, at this time, we’re using a syringe and we’re drawing up teeny, teeny tiny doses. He’s getting like point two, five, maybe for 20 carbs, I think I mean, who remembers these doses, but they were minuscule. They didn’t have half unit pens at the time. And they certainly didn’t have quarter unit syringes. I don’t think they have that. Anything like that now. So unless you’re using diluted insulin, which nobody had mentioned to me during his whole toddlerhood, you know, you’re really guessing at the dosage, and you’re trying to eyeball these teeny, tiny poufs and wisps of insulin. So David had tried to draw up like half a unit, I don’t remember the exact dose he was supposed to give was, but he gave him two full units, which was bigger than anything we had given before. It makes me laugh now because to like, it’s like a speck of dust for him now, but two units
when you Wait, 27 pounds is a huge deal. So what David and Slade had already done while I was sitting there watching people singing, they had already called the endocrinologist. And they had actually already gotten a call back. And that’s what the phone call and the pacing, that’s what was going on. When I had walked out, he was on the phone with the doctor. And of course, they advised check the blood sugar, give more carbs if needed. You know, nobody was panicking. So we didn’t panic. His blood sugar was fine. David had checked it before he called he checked it after the endocrinologist called back, he was fine. It gets a little weird, because the dose had been given Well, before the phone call. It was one of those situations where David did it. And then A while later thought, did I really do that? He absolutely swears that he gave the kid two units. But two hours later, his blood sugar hadn’t dropped. So my suspicion at the time was you didn’t give him two units, you probably drew it up and just misread the syringe, which was very easy to do at the time, especially when you’re distracted by a toddler and a five year old or the child didn’t go all the way in, or something really weird happened because his blood sugar stayed steady. You know, we were checking with a meter. We did have a dexcom at the time. But he was checking him every half an hour. We left the theater, we went home. We didn’t want him to have to handle this by himself. And how are we going to enjoy Spamalot, right?
Stacey Simms 41:54
We’re worried about Benny. We’re now home, probably close to three hours after the dose is given. His blood sugar was steady. We called the endocrinologist back and they said look, it’s three hours pass the dose. If he hasn’t dropped, he’s not going to drop you guys are okay. So we being the terrible parents that we are looked at each other and said, you know, our friend was having a holiday party that we couldn’t go to because we had tickets to Spamalot. David, do you mind if we go to the party now? I swear we did. We left we went to my friend’s party. And my friend is only 10, 15 minutes away from my house. And it was what 10 o’clock at night already. So we only went out for about an hour and a half. But yes, I left my sleeping baby and he never woke up. And he never even woke up with all those pokes all those finger sticks to check his blood sugar, which I’m sure David did 10 more times before midnight, he slept through the whole thing. We were all worried but not worried enough not to go to that party.
Ah, I am the worst. We have always been the worst. But you know what he was safe. And our endocrinologist gave us the correct information told us what to look for helped us through it. And there was no sense as we saw it, not going to the party. So I know I’m a terrible parent. That’s why I always say I’m the world’s worst diabetes Mom, I still have not seen Spamalot all the way through. So maybe when it comes back through shark, I’ll go back and make it through the first half of the first act. Oh my goodness. And hey, anybody dealing with a toddler or baby with type one, and those teeny tiny doses, I salute you. It’s not easy. Getting an insulin pump makes it a little bit easier. But anything under the age of five is a circus of you know, type one is never easy no matter what age you are. But we’re heading into 16 year old with it. And that means driving, which is an adventure for another time.
Before I let you go quick reminder friends for life is this weekend, the virtual conference. And if you were able to attend in July, you know that did an amazing job. If you were there, the one thing I will say that surprised me in a very good way was how much just schmoozing. We were able to do. They had specific zoom rooms for different ages, you know, parents and teens and young adults with type one, it was great. And I really wish I had put aside more time in July to attend the conference. Because I didn’t really understand how much just hanging out and socializing we’d be able to do. So I’m putting more time aside to attend this one. And I hope you can check it out as well again, link in the show notes.
Hey, in the weeks to come, we’re gonna have a couple of more episodes in December probably take one off the week of Christmas, even though I celebrate Hanukkah, but you know, we go with the flow. And I also want to just point out that this time of year, there are often a lot of approvals. It just seems like that last week in December, there’s usually a lot of news. So stay tuned. I know a lot of delays happened because of COVID. So, you know, I’m not even sure what’s been submitted to the FDA that was planned for this year. A lot of delays that way, but we will definitely be talking about it. Make sure you follow on social media for the latest and greatest. And thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much as you listen and if you’ve listened this long, I really appreciate it got a little chatty this week with that story about Benny and Uncle Dave. But But I appreciate you listening. I’m Stacey Simms. I’ll see you back here next week until then, be kind to yourself.
Unknown Speaker 45:10
Diabetes Connections is a production of Stacey Simms media, all rights reserved. All wrongs avenged.