Q: How do you fit millions of people with diabetes into a room that seats 120?
A: Send 10 Patient Voices winners to the Diabetes Mine Innovation Summit.
On November 15th, an eclectic group of people converged on the Stanford School of Medicine for what has proved to be one of the most monumental days in my diabetes career. (OK, so it’s not a vocation that I would have picked for myself, but I treat it like a career, except there’s no time off and no 401K and the medical benefits are tepid at best.) Medical investors, the FDA, representatives from pharma and device manufacturers, non-profit icons, big names in diabetes, physicians, and for the first time ever, payers from a few large insurance companies all talked - sometimes with each other, sometimes at each other, and even at one point, yelling at each other about diabetes.
There was laughter, there was anger, and there was wonderment over the promise of technology and the frustration over the same technology. There were surreal moments and for the first time in what seemed like forever, a moment where I was left speechless, jaw gaping and heart pounding. Intrigued? Thought so.
Amy Tenderich, the woman behind Diabetes Mine and the Innovation Summit, welcomed everyone with a brief overview and the Patient Voices video, which I have already provided for you in a previous post. This summit was to share ideas surrounding the topic: “delivering on the promise of diabetes technology”. I’m going to give you a spoiler early in the post: the diabetes world is not even close to delivering on that promise.
Strip Safely and the FDA
Dr. Courtney Lias, the FDA representative of the In-Vitro Diagnostics division (overseeing pumps, strips, etc.) was first-up on the podium, giving an overview of the role that the FDA plays in the technology innovation machine. She stressed the importance of an open dialog between manufacturers and the FDA well before the tech is submitted for FDA approval. Requests for more data slow everything down, but if the FDA and the device manufacturer are skipping down the yellow brick road together, there are fewer surprises. (I don’t know how close a relationship the FDA and Dexcom, Tandem, and Animas have. There was a collective sigh heard around the country when the integration of Dexcom and these two pump companies were delayed for “more data”. Case in point.)
But what was a proud moment was the mention of the Strip Safely advocacy campaign held up as an example of advocacy that is working (for better or worse, I’m sure, in the FDA’s mind). As her slide titled: Patient Interaction stated: If our goals are aligned, can support our efforts. If not aligned or in sync, they can hurt policy implementation. Good communication is key. Bennet Dunlap, my partner in Strip Safely (He’s Batman. I’m Robin. I get to say “HOLY…..” a lot.) and I were tickled to see Strip Safely mentioned. We made a few waves with the FDA initially, but we also understand that they’re just as frustrated as we are. We need to work together to find a way to enforce the accuracy of the technology that is currently on the market.
Swept Away by Tidepool
This, my dear readers, was the reason I believe in the power of our community. Tidepool is a California Public Non-Profit that is putting into action my dream… or to be more accurate, it went beyond my dreams and straight into my fantasy. (No, not that one. Shhh…)
Tidepool is providing an open-source platform for real-time data from all devices I wear to the cloud, securely, sharing the data in real-time with anyone who should see it. Text messages to parents if their children go hypoglycemic while at school? Yep. Text message to physicians if a certain parameter is hit? Yep. It hit every one of my requests and some that I hadn’t imagined, including a little app called nutshell, which Brandon Arbiter created. You input a meal (in the example, it was Huevos Rancheros) and the carb count and how much insulin you take to cover it. The next time you eat that, you can look back and see if you went outside your acceptable range - and you can adjust accordingly.
I could type for hours about how much I admire what they are doing - and if they have a fan club, I want to be their President. (Heck, I’d make T-shirts and do spirit hands while cheering in their office. Too much? Probably.) They are a non-profit and as such, need a little financial help. Take a look at what they do and if you like what you see, you can donate to them. Out of all that I saw in relation to technology at the summit, this is the one thing that I am most excited over. That data would help a lot of us make good decisions in real-time. We need to support projects like this that will help us use the technology that we pay dearly to use.
Third Verse, Same As The First (Hat Tip to The Violent Femmes*)
Anna McCollister-Slipp, co-founder of Galileo Analytics and a T1 to boot, was blunt. Since the last DM Innovation Summit, nothing has really changed. We are still stymied by proprietary technology, frustration of the complexity and the cost, and the stall on the innovation disruption needed to make our lives with diabetes easier and more manageable. She was an excellent speaker, but left me feeling deflated and a little depressed. It’s not as if I didn’t know this already, but sometimes I want it
sugar-coated Splenda-coated just a bit.
Passion With Payers
And now begins the heated, passionate part of the summit. As I mentioned earlier, my jaw dropped during the summit - and it happened more than once during the panel presentation of five different payers. It began rather sedately and I’m sure that those sitting up at the front of the room, including the moderator (who was incredibly patient), expected this to muddle along smoothly.
They obviously haven’t met the lot of us in the wild.
Insurance companies are not altruistic. They are a cross of risk-management gamblers, firefighters, and paper pushers looking to keep as much money in their pockets as they can. Despite my description, this isn’t a bad thing all the time. Capitalism is what it is.
Like Anna’s earlier discussion, they were blunt, but unlike Anna, they didn’t understand their audience. We are patients and doctors and manufacturers who were stunned to hear them talk, quite frankly, too openly about how they try to avoid new technology and paying out more than they have to, and that patients are not their customers.
My jaw was already unhinged, but another Patient Voices winner, Corinna, sent it crashing to the floor when she stood up and confronted the panel, interrupting the moderator, shouting:
“I don’t give a shit about your spreadsheets!”
If I had a pin, I could have dropped it and heard it jingle jangle on the floor.
The silence was complete.
She wasn’t done. She told them what she thought and the floodgates opened, with other Patient Voices, advocates, clinicians and manufacturers representatives letting the panel understand what they thought of their policies and ideas.
The insurance company representatives became understandably defensive, with one stating that he felt personally attacked. In my opinion, if you’re in the insurance business and are sitting in a room of people who are denied over and over again for the items that keep them and their patients alive and healthy, please don’t expect to have roses laid at your feet or people thanking you for your cost-cutting limits and restrictions on strips and insulin.
Will they be back next year? Time will tell. I’m sure that some of them will wear thicker skin if they do attend.
Diabetes Mine surveyed a large group of people with diabetes about technology and the results were presented by Kyle and… Oh, look. Me.
We’ve got concerns. And complaints. And wishes. And if you want to see the survey results, the data is all right here.
Once again, I was struck with the feeling that none of this data is surprising to people with diabetes, but it may be to those who design the technology for us (and even a greater surprise to those insurance companies who often prohibit us from using the technology that does work).
That’s Not All
I haven’t even gotten to share the afternoon’s interactive creativity session and the closing presentation that rocked my world by Dr. Joe Smith of Westhealth. (Promise you I’ll give you that later. It’s worthy of a post entirely on the topic he covered.) I walked out of that room, my heart filled with the hopes and dreams of millions of us… and the desire to fight for the technology innovation that we need.
You want to hear some other perspectives? You should!
Scott Strange - I’m Sure All Patient Concerns Are Absurd
Amy Tenderich - Exploring Disconnects & Black Boxes
Wil DuBois - A Skeptic’s View of Our Summit: Anger and Hope in Palo Alto
My thanks to Amy Tenderich and the sponsors of the Diabetes Mine Innovation Summit. As a scholarship recipient, I was reimbursed for my flight, lodging, and some meals while attending. I also received a free registration for the summit and a bag that included a Misfit Shine from Target.
*Prove My Love by The Violent Femmes is one of those songs that makes me think of my youth…and laugh.
Do you know the cartoonist, Gary Larson? He’s the guy who does The Far Side®.
My life has been a series of Gary Larson panels. Growing up, I was known as “Ginger Ginger” by my parents. (Due to copyright issues, I refuse to illegally post the panel, but if you google Gary Larson and “Ginger Ginger”, it describes me and any other teenager.) But this isn’t about that cartoon. (Or the one about Midvale School for the Gifted. Or the one I swore was just for me as a languages major…)
It’s about this cartoon where a kid asks to be excused… except in my case, it’s my heart.
I just got back from the Children With Diabetes Friends for Life Conference and I’m suffering simultaneously from withdrawal and overload. The people I met, the things I learned, the emotions that I experienced… it will take a few days to fully process into actual coherent words, but when it does… you have been warned.
Thanks to Diabetes Advocates and the Diabetes Hands Foundation‘s scholarship, the connections I made and the mindset I’ve been in will last until… the next CWD FFL Conference (July 2-6, 2104 in Orlando). The path I’ve walked on for the past thirty years with diabetes will be taking a new direction, so buckle up and come along with me.
Once I can stop being one hitching breath away from a full blown crying jag (which I’m sure will come, but not out of sadness…), I’ll talk about Dr. Ed Damiano’s AP project, about meeting Richard Vaughn, about the feeling of “getting it”, about telling someone that “I’m still alive”, about the FDA and talking to them about the Strip Safely campaign, about the moments that right now are still raw…
But in the meantime, my heart is full.
And it will be like that for a while.
And I’m happy with that.
My iPhone and I have an unhealthy relationship.
Call it co-dependency, call it obsession, call it whatever you want, but it’s always within reach.
I’ve had a mobile phone since the early 90s. My very first job after university was individual/corporate mobile sales, back when reps made a lot of money and plans were not “unlimited talk time”. I had a handheld (ooohh…. Motorola MicroTAC), an installed mobile, and…I kid you not… a mobile fax machine in my car. I calculated once that the amount I talked in a single month, if I had to pay for the service, would have run me over $6,000 if I hadn’t worked for the carrier. There’s a long history of me loving mobile technology. Having an iPhone giving me access to data and apps just heightens the rush.
I have long lamented the technology shortcomings when it comes to diabetes tracking management. For some reason, the tech world can’t seem to get the concept of what information we need to keep us on top of it all. Some were clunky, some were lacking key info tracking, and some were just downright worthless. Search after search for iPhone apps that claim to make diabetes lifestyle tracking easy came up short.
An opportunity presented itself recently for me to test the new U.S. version of mySugr on my iPhone before it’s official launch on June 4th here in the States and I jumped on it. It only seems natural that if I was going to track my daily challenge with a non-functioning pancreas, it would have to be with my iPhone.
From the get go, I was hooked. It’s easy and fast to input data and simple to use. That’s what I wanted and now I have a diabetes tracking management tool that fits me and my iPhone addiction. I give it two thumbs up (and even more thumbs if I could borrow them…)
Set-up was a breeze. You can select your type of insulin therapy (pens/syringes, pump, or even no insulin), your thresholds for hypoglycemia and hyperglycemia and your target range. I had a little glitch setting up my carbs, as an accidental initial swipe had me putting in “exchanges” instead of “grams”.
Want to enter data? Push the big plus button in the right hand corner and a screen opens with the time and location filled in for you. Input your blood glucose, carbohydrates, bolus, temp basal, activity, and notes. Other apps I’ve played with have been restrictive in what you could add, but I love the ability to enter a description of what I’m eating (and even take a picture of it!) as well as a detailed note about what’s going on at that moment. You can also add tags based on how you’re feeling, food intake, or activity level.
Once you’ve inputed your info, the main screen will show you your overall information, including a seven day BG average, deviation, number of carbs taken in, and (I love this) how many hypos/hypers you’ve had based on your BGs. There’s a graph that changes colors based on where your blood glucose level sits at that point. Red (boo), orange (less boo), and green (yippee).
If you’re looking for more in-depth analysis, you can go to the… Analysis screen (I know. They did a great job naming that.) to check out averages by month, 14 and 7 days, and the last 24 hours. This was really helpful to me to see on one screen. There’s also a reports page that you can export and print out (mighty helpful to bring to your endo!) and if you upgrade to the Pro package, there’s additional reports options.
Using mySugr became an easy part of my diabetes management routine. iPhone went next to my meter. Check blood sugar, quick input into the app and off I went. My little monster (which I named Lazy Pancreas) would growl appropriately onscreen or silently purr in contentment (it does have sound, but with a two year old who wants to hold anything that makes noise, it’s on mute). In a previous post, I admitted that I was part of the problem managing my diabetes, and mySugr has become a tool to help sweep away that feeling of frustration.
Now, you know me. I’m not quiet about what I like and what I don’t like, so here goes…What would I change about the app? I’d add a few things:
- There’s no pop-up reminders. Gosh, I have reminders with stupid games on my phone if I haven’t opened the app, so it would be easy to add this feature. Just a pop up on occasion saying: “Hey, noticed you haven’t put your BG in mySugr in a while…”
- Ability to put in a reminder to change my infusion set/CGM. (File that under pop-up reminder, perhaps.)
- A more comprehensive FAQ. I know that that I said that it’s easy to use, but I’m a believer that if you have an FAQ that gives you detailed info on all the tools, you’ll use it more. (And I was frustrated with the carbs/exchanges slider for a few days and if I hadn’t asked someone within the company, I would have bailed on the app, which would have been a shame. It was a point that could have been easily solved with an FAQ.) Same with the graphing. A FAQ on that would be splendiferous.
- There’s no graphical component in the report section. I’d love a graph to print out and pour over.
- I’d like the ability to move the tags around or add additional tags. I don’t use a lot of them, but some that I do require scrolling and others I would probably never use (like the “Chilling” tab… never used it, but the “Stress” tab got a lot of play). If I could move the tabs that I use most to the front screen and add ones that I’d like to see (“Severe Hypo”), that would be very cool.
These aren’t big things - and they’re not deal breakers. I am loving this app.
I won’t get into the “cutesy” factor - you can name your “diabetes monster” that you try to tame by logging your information and keeping track of everything. You may love or hate the way the monster changes colors or quips silly things when you enter your blood glucose. The founders of the company wanted to make the app fun to use with a points and challenge system that can give you free days of their Pro version. (As I was testing pre iTunes availability, I didn’t use the Pro version.)
Personally, I’m sold… and best of all, it’s free. It’s available for iPhones and Android phones. If you’re looking for one sweet app for diabetes… it’s mySugr.
If you want to learn more, you can go to their website. You can also check out the company on Twitter and Facebook and listen to what other users have to say. My friend, Scott Johnson, gives his review about mySugr as well.
Please note: I have not received any financial compensation for this review and have no business relationship with the company, although gosh darn it, I wish I could work with them - seems like a fun bunch of very smart people who know what diabetics are looking for in an app.
Grace Jones is bad ass.
Model, muse to many fashion designers, Andy Warhol’s Studio 54 buddy, actress (Although I will readily admit, I use that term loosely with her.), and singer. Her 1985 song, Slave To The Rhythm, has been pounding in my head for the last few weeks, the lyrics nagging me.
Work to the rhythm,
Live to the rhythm,
Love to the rhythm,
Slave to the rhythm.
I’ve come to realize, the rhythm in my life is The Beep. My meter beeps. My pump beeps. My Dexcom beeps. (Yes, my iPhone beeps, too. Sigh.) I’m a slave to The Beep. It’s what keeps me in check, keeps me alive, and keeps me going. And in doing so, keeps me chained.
I’m looking for some emancipation from being a pack camel of equipment and their appropriate adapters, but I know it’s not happening anytime soon. How about some integration then? I know I’m not alone in saying this: “Why can’t I have a single piece of technology to manage my diabetes?’ One thing that beeps instead of a cacophonous choir of electronic whips, urging me to do something.
My Minimed Pump/Paradigm combination tried to quiet the noise in my head. It really did. A good ol’ college try and I tried to like it. For a year, the pump gave that graph and beeped accordingly. But it hurt. The Paradigm’s sensors…. Ow. Ow. Ow. Did I say Ow? I cringed at the thought of inserting one more Paradigm sensor and realized that as much as I didn’t want to carry another piece of technology, it was inevitable.
I’m happy with the Dexcom G4. Even happier than when I was using the Dexcom Seven +. (And those sensors? Don’t hurt nearly as much. What’s up with the transmitter size though? Oh, I digress…) But it’s still another electronic device.
I want a system that integrates my pump with my CGM and my meter and my smartphone and….wait for it….the ability to download all this information wirelessly to the cloud for viewing on the Internet.
The technology options are close. Oh so close. I’m liking where the OneTouch Verio Sync is going. (DiaTribe has a fabulous first look here.) I’m also into the Dexcom G4/Animas Vibe idea, but I’m not switching pumps due to insurance.
We’re not all there yet. So close and yet so many things to carry around.
With my current configuration, I can’t upload my pump settings/bolus/BG readings in the same place as my Dexcom G4 readings (Actually, I can’t upload my readings at all. Dexcom, meet my Mac.) Diasend looks promising, but according to the website, it doesn’t work with my pump. And proprietary cords? Do not get me started. USB, people. What’s wrong with a simple USB cord?
Any solutions? Help. Otherwise I’ll be stuck with Grace Jones and her androgynous haircut and razor sharp shoulder pads haunting me forever.