Those of you who read our weekly Ask D'Mine column know what a skeptic Wil Dubois is. We can't help loving him for it! He's also one of our devoted editorial team members, so keep that all in mind as you read his take on the 2013 DiabetesMine Innovation Summit that he too attended in Palo Alto, CA, on Nov. 15.
A female pal of mine once told me she's on an eternal quest for the PERFECT pair of shoes. I'm a bit shaky on what makes a pair of shoes perfect, but I would image it would be a magic elixir of a comfy fit, durable materials, a color that would match many wardrobes, a sensible tread that wouldn't show, and of course cuter than the dickens.
Despite a considerable investment in womanpower and raw capital, my buddy is yet to score her perfect pair of shoes.
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I, however, after a similar search, have found my perfect diabetes conference. I have attended all manner of conferences across the country over the last decade or so, and for me the only one that's a great fit is the DiabetesMine Innovation Summit, now in it's third year. I've been blessed to attend all three years of this invitation-only gathering from the overlapping spheres of diabetes patients, diabetes clinicians, diabetes device makers, diabetes drug makers, diabetes industry investors, diabetes inventors, and diabetes advocacy organizations. Additionally, both last year and this year we had representatives of the regulatory community in the form of the FDA. And debuting this year for the first time, the missing piece of the puzzle was dropped into place in the form of representatives from five "payer" organizations—your health insurance companies.
The main Summit lasts only one day, but what a day each year! Stanford School of Medicine hosted the 120 of us who attended, and this year's summit did not disappoint.
A major theme for this year, as last, was in getting our many D-devices to talk to each other.
Of course, the one thing we are missing in the individual propriety silos of D-tech is a common standard. We need a diabetes JPEG, USB, or DVD. All the competing industry players recognize the value of this, but it seems no one will step up to the plate to make it happen. To the rescue comes a non-profit Silicone Valley outfit (even they realize this is a cultural oxymoron) called Tidepool who briefed us on their ongoing development of a free open-source D-data platform. One of last year's patient winners, Jana Beck, has just joined their team, while another of last year's winners, Sara Krugman, is working on their user interface via her new healthcare design studio called Line. I think history will judge their work as the NASA moonshot of diabetes. It's a big effort that might change our world.
That said, early in the day, Anna McCollister-Slipp made a follow-up presentation from her last year's call to action and summed up that the progress on this front from last year was, well, non-existent. She pessimistically pointed out that despite all the talk of better integration and various parties working together for common good, it just ain't happenin'. McCollister-Slipp is a self-described policy nerd who closely follows goings on both in Washington DC and in industry. Her conclusion was that as no real action has been taken by industry since the last Summit, the only solution is armed rebellion. OK, I probably said that a little more strongly than she did, but she called on PWDs to organize and turn up the heat on industry and government.
Patient Power Works
Speaking of government, the FDA was represented this year by Courtney Lias, who runs the part of the FDA that approves meters and test strips, pumps, and CGMs. If you believe that the FDA is our enemy, think again. This undermanned, understaffed, underfunded organization—which has a nearly impossible mandate—actually has a desire almost as large as our own desire to move D-tech forward.
Her bottom-line message to industry: Talk to us early. The FDA is now willing to be part of the design process from the very beginning. In this way, device companies can know what is needed and expected as development goes forward, and avoid unexpected slowdowns and requests for more data down the road.
Her bottom-line message to empowered patients: Hey, talk to us. Period. She says the only way FDA knows what we need is if we tell them. She encourages more communication and more patient involvement on advisory panels.
She also gave a nod to king rabble-rouser Bennett Dunlap's well-crafted Strip Safely initiative. By the way, Bennet told me the campaign was able to dump 2,440 tweets into the FDA inbox on a Thursday morning. The tweet footprint globally was nearly five-and-a-half million impressions, wildly exceeding his expectations and vividly demonstrating that he hit the nail on the head when it came to how important the issue of strip accuracy is to all of us.
More importantly, Strip Safely worked. It's a triumph for organized technological grassroots patient advocacy. Sort of our own little Arab Spring. The FDA sat up and took notice. The wheels of change are slowly starting to move, and I doubt that the indomitable Mr. Dunlap will be content to sit on his laurels for long. (Thank God for that.)
I'm a Doctor, Not a Villain...
New to the party this year, and hopefully not for the last time, were the Payers. Given last year's unexpectedly candid talk from the FDA, Summit organizers wisely scheduled a significant chunk of time to hear the Payers' perspectives and to have a lengthy question-and-answer period.
The main points the payers collectively wanted to tell us, it seemed, is that in general, we patients are not their "customers." Our employers re, and the Payers seemed to view their role as one of saving their customers money. One even said they are "always looking for new technology not to pay for." Hold your horses. It gets worse. They also wanted everyone to know that they exist in a heavily regulated industry that is extremely competitive and exists on razor-thin margins. They have to plan rate raises far ahead, while guessing what the FDA might approve. They discussed with cold honesty how they go about deciding what to cover and not using a population-based calculus. It was, frankly, both depressing and chilling. Until the fireworks started when our own Patient Voices winner Corinna Cornejo used her patient voice to give the panel an earful, and it went delightfully downhill (or uphill depending on your perspective) from there.
The Payers must not have been paying attention to the opening act of this year's Summit: an emotion-charged video compilation of the pleas of our patient winners for access to good tools that talk to each other and simplify the daily burden of diabetes control. There were any number of not-quite-dry eyes in the room by the end of the vid. Mine included.
The reps of the Payers seemed to be caught flat-footed by the flood of near-violent emotion that erupted. Several of them were doctors, who became highly defensive about their roles. One actually said he'd spoken in dozens of public forums and had never been exposed to such anger. The clueless disconnect between the panel members and how their actions affect us reminded me a bit of the AADE panel's actions at the Roche Social Media summit in 2010.
Some of the attendees expressed regret to me later at the tone that this panel took on, and wondered what might have been done to calm things down.
Personally, I'm glad we didn't try to quash the discussion. Anger is a huge part of having diabetes. Insurance companies do have to make population-based decisions, but they also need to understand in doing so, they are often screwing with the lives of real people. We are so much more than numbers, and I think people who deal exclusively with numbers need a periodic refresher about the outcomes of their decisions on our lives. It was obvious that none of them had any clue about what it is like to live with diabetes — except for the woman from the Arkansas Health Exchange, who's living with type 2, and clearly "gets it." And, hey, it's not like we let the audience throw rotten vegetables at them. (AmyT wisely removed all the rotten vegetables from the room at the start of the session. ;) )
Speaking of AmyT, I thought she brilliantly summed up the session by quoting an old Rabbinical proverb: "All beginnings are fraught with difficulties" (which sounds better in Yiddish, she tells me).
But the Payers then went on to cause a second wave of anger when the moderator asked how patients can best communicate with insurance plans and basically gave the answer: your doctor should be the one calling us — it's the doctor's job to advocate for you. This second wave of anger came not from patient voices this time, but from the clinicians present, who blew a collective gasket. Good doctors already spend countless hours on the phone advocating for their patients, without being compensated for this (unlike lawyers who can bill every moment spent on a client's behalf, doctors don't get paid for phone calls, prior authorization paperwork, appeals, virtual visits, or remote viewing of data—and all this can eat up a huge percentage of a physician's time each month).
In fact, one endo told me later that the time burden of dealing with insurance companies has robbed her of so much billable patient time that her practice has lost money every year for the last three years. She stays in the game for the love of her patients, but were it not for her husband's income, she would already be out of businesses. She worries that there won't be a generation of young docs to fill her shoes when she drops dead on the job (probably following a heart attack generated by trying to "talk" to an insurance company on behalf of one of her patients).
Tidbits, Tasty and Otherwise
* In other news of the day, the amazing results of our patient survey that shows that pretty much no one downloads their data because it is such a hassle to do so.
* Those damn Europeans (we love you) get all the goodies first because the European version of the FDA does not require additional safety data on precedent devices like pumps, meters, and CGMs. Rather, they only ensure that the devices meet manufacturing standards. This lets device companies sell their wares over there, while doing the clinical trials required to sell their gear over here in the USA. (It's important to note that not all Europeans are happy about this.)
* Speaking of beyond our borders, Canadian Patient Voices winner Amy Tekrony was absolutely appalled at her first close-up look at American healthcare, as was our winner from down under, type-1 and D-dad inventor Simon Carter.
* No mmol/L in Germany. Patient winner Julia Neese and I were comparing our Dex G4s (her BGLs were waaaaaaaaay better than mine) and I was surprised to learn that the Germans use mg/dL like we do. I had always thought they were mmol/L like the rest of Europe. While she's generally happy with her country's approach to healthcare, she told me that getting CGM covered is quite a trick and she's been paying out of pocket for the technology that she says has completely revolutionized her life and health. Said technology, however, was up to one of its notorious ??? moments, but she had the satisfaction of putting the misbehaving unit right under the nose of one of Dexcom's senior VPs. Sadly, I was pulled away and didn't hear how that conversation ended!
* Speaking of Dexcom, in the very near future they might be unlocking their system, making their data transparent. I was too tech-stupid to understand the technical details and acronyms, but after hearing the pleas from my more tech-savvy peers for better access to the data flowing from the G4, a senior Dex Executive sitting at my table picked up his smart phone and sent a request up the food chain, saying, "I don't see any reason why we shouldn't do this." Keep your fingers crossed.
* Everyone in attendance got a nice logo-enhanced gym bag containing (complements a of Target) a Misfit Shine -- that cool new activity tracker gadget that retails for $120. Nice! I understand they gave them away at the Stanford MedX conference, too, but since I missed that opp I was glad to be on the receiving end here.
* And in my favorite WTF moment, OmniPod introduced a new pod that actually raises your blood sugar instead of lowering it. They donated both milk and dark solid-chocolate pod replicas. Yummy, but I didn't find the carb count on the inside of the (empty) box until the next day. It was 26 carbs per pod. I very wrongly guessed 18, so I'm again calling for a carb-sniffing wand from my high-tech designer colleagues...