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.
2013 Diabetes Mine Patient Voices
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.