No, this post is not about Vanilla Ice, but you can thank (or curse) me later for using his famous lyrics throughout.
“To the extreme I rock a mic like a vandal…”
I talked about it before, but on November 3rd, a monumental event occurred. With the strategic urging of the heads of diaTribe, an unprecedented meeting was scheduled between the FDA and people with diabetes. #DOCAsksFDA was streamed live, so that those in the diabetes community could listen to and watch those representing the diabetes community have an interesting discussion about what patients want the FDA to understand.
I wasn’t the only one who wanted online access to this meeting. About midway through the meeting, the FDA servers crashed. (Hmmm…. the #DOC strikes again?) While those in the room continued sharing the dialog via Twitter, it was frustrating to not hear the conversation as it was happening. And there was no one at the FDA recording this separate from Adobe Connect.
Except…. someone was recording. Thank heavens. diaTribe employees in the audience whipped out their iPhones and video recorded the remaining hour and a half and have put it up on YouTube.
The conversations that transpired must be seen to appreciate the raw emotion our patients showed as they answered questions. Take some time. Stop, watch their collaboration, and listen…
“…We are all in this together.” - Rebecca Killion (type 1 diabetes, 17 years)
Of course, if you don’t have time, diaTribe has done their standard (their standard is exemplary) job of picking out the pearls from this and you can read them here.
“Dance, Go rush the speaker that booms…”
By the way, if you haven’t entered the giveaway that diaTribe is having, dance on over and do so.
diaTribe is continuing the “diaTribe Gets Fit Giveaway” - giving away ten grand prizes: a fitness tracker of the winners’ choice between a Fitbit Flex or Jawbone Up (and cool bonus prizes!). They only do one giveaway like this each year, so seriously, go do it. Takes two seconds…
“Anything less than the best is a felony…”
I’m heading out to join other patients for the DiabetesMine Innovation Summit, happening this Friday. If you’re unfamiliar with what this is, I consider it to be the only place where patients, manufacturers, Pharma, investors, inventors, clinicians, and payers can have real conversations about the future of diabetes innovation. I’m so grateful for DiabetesMine for putting this together each year and that I’ll be attending for the second time as a Patient Voices Scholarship winner. (My travel, lodging, and some meals are paid for by the scholarship offered by DiabetesMine.)
This is, in all truth, my favorite summit I’ve ever attended. I learned so much last year, and more importantly, left inspired to be more involved with the diabetes community.
This year’s topic is Emerging Models for Improving Life with Diabetes: “Against the backdrop of the Affordable Healthcare Act, which programs have the biggest potential, and how can we address challenges to their success?” And boy, do I have a lot to say as a patient- and a lot to learn as a patient.
“Check out the hook while my DJ revolves it…”
For those of you who have made it this far into the post, let me share my latest story about my hook (a.k.a. my right hand with the finger that continues to paint me as a budget Captain Hook…). I had surgery on October 2nd, felt that something just wasn’t right, and then realized as the swelling from the surgery went down (which takes a while) around the incision site, that something else wasn’t right… I saw a black line in my palm.
One of the sutures wasn’t fully removed when the stitches were pulled out by his nurse a few weeks ago.
It explains why the inflammation wasn’t going away and why scar tissue was developing. I ended up having impromptu hand surgery in his office yesterday, where he pulled out almost a half-inch piece of surgical thread. And then, I got two more stitches to close up that incision. (Fortunately, these are superficial and I’ll take them out myself.)
And I confirmed that, yes, indeed, I do have a PIP flexion contracture and NOT diabetic cheiroarthropathy as he had previously diagnosed. In this case, I hate being right. My options are occupational therapy and a splinting regimen, but it will take time and some injections that are considered to be “white hot pain”.
I feel like I didn’t do enough to push the idea of the PIP flexion contracture at my last appointment and it’s set me back, because I could have done more to alleviate the problem and potentially cured it. (That being said, my surgeon did offer physical therapy and I declined, wanting to see if the swelling was causing the pain.) That’s sometimes the problem with being an ePatient; you know what the possible diagnoses could be, but you may still defer to the surgeon and then disregard treatment choices.
The finger will get better. I will be a better patient. Better. Stronger. Faster. Six Million Dollar Diabetic.
“Quick to the point, to the point, no faking…”
Open enrollment for the Healthcare.gov and some state marketplaces is happening right now in the United States and for the first time ever, we’ve decided to enroll through the marketplace.
John and I reviewed the high deductible plan we had this year and truth? It’s cheaper for us to play for a platinum plan with a low deductible than what we paid this year for premiums and out of pocket. I made some cringeworthy choices for my diabetes (eschewing some prescriptions, medical appointments, and supplies until I met a $4,000 deductible because we didn’t have enough money in our HSA account is something I never thought I would do in my life…)
I, for one, am grateful for the ACA. I know that I am paying through the nose to stay healthy. After I wrote the post about the bare minimum a Type 1 adult could pay for basic healthcare, a comment came in that floored me. Here it is:
Hold on. “I can’t afford it”. These statements need to be qualified and quantified. In some cases this might be true. But with Medicaid for low. no income you get help. For those working, maybe choose the cheapest cell phone plan and most basic cable TV and the lowest possible car payment. Forgo vacations and eating out. You know I gave up these “basic Luxuries” and came up with $4,900 in “savings” applied to my care. The article, like many sensationalizes a terrible burden or cost when taking all things into account is sometimes not there. I acknowledge there are many that cut outgoings to the bone, but too many think it is a right to enjoy their luxuries AND have money for health care for T1D or T2D. - Tony
I don’t think Tony gets what I was trying to say. So, here I go… no faking…
- We have the cheapest cell phone plan. We do not have basic cable… or any cable. (We use HD over air.) We don’t have a car payment, as both cars are paid off. (My car is from 2003 and I’ve sunk over $2k to keep it running this year.) We haven’t taken a “vacation” since before our daughter was born (3 1/2 years). Eating out? We’ve cut out eating out long before you suggested it. Special occasions like a birthday gets a nice dinner out. I cut coupons, shop sales, buy clothes at consignment stores.
- Wait. You mean I can’t have a “luxury” and have money for health care? That having this disease and wanting to be healthy shouldn’t be a right? If you have $4,900 to apply to your care, bully for you. For the rest of us, that $1,591 I quoted was for treatments available 30 years ago and did not take into account the thousands that can be accrued if something goes wrong… like trigger finger surgery. Even with insurance, I am now in debt.
- Sensationalize? No. No. No. If anything, I didn’t sensationalize enough.
(If you would like to comment on his post on my blog, feel free. This, however, if all I will say on his post, because my head and heart hurts thinking about how I’d like to respond.)
And now, you’d think I’d send you off by actually showing you “Ice Ice Baby”, right? Wrong. Here’s Adam Scott, explaining what it all means:
Whenever she hears that song, the dancing must commence.
No matter what you might be doing, just drop it.
Grab a hand, jump up and down, and wiggle wiggle wiggle.
These are the instructions The Kid gives to me, drill-instructor style, while grinning and giggling.
She makes me happy. Just like these five things you should know about:
1. The Diabetes Technology Society announced the DTS Surveillance Program for Cleared Blood Glucose Monitors.
How important is this?
For those of us who wonder if the number on our blood glucose meter is accurate, it’s a majorly huge thing. Once a blood glucose meter is released to the consumer after approval by the FDA, there is no way to find out if these meters are… accurate. This is the post-market surveillance program that Strip Safely and advocates of meter and strip accuracy have been wanting (and the FDA, too!) - it’s coming!
“This surveillance program will provide a significant benefit to both patients and manufacturers,” says David Klonoff, M.D., founder of Diabetes Technology Society and Clinical Professor of Medicine at University of California, San Francisco. “Patients will benefit by having access to more accurate meters on the market and manufacturers committed to delivering accurate products will now have an opportunity to back up claims about quality and accuracy with proof from this independent, third-party testing program.”
Abbott Diabetes Care is already committed to supporting this program and other major manufacturers will be signing on, of that I’m sure. Manufacturers who do not pass the accuracy guidelines at this point will still be allowed to sell in the U.S. market, but I foresee these accuracy reports becoming important in the future as the FDA looks closely at how to ensure our safety with the help of the DTS. Huzzah!
2. The 2014 Diabetes Mine Patient Voices Contest is waiting for YOU.
From the DiabetesMine website:
The 10 top entrants were selected to receive an “e-Patient Scholarship” to attend the DiabetesMine Innovation Summit that takes place annually at Stanford University in Palo Alto, CA. Each year, our winners act as “delegates” for the patient community, expressing our needs and desires to the Powers That Be: decision-makers in pharma, healthcare, technology design, medical device regulation, software and app development, national advocacy groups and more.
This year, the DiabetesMine Innovation Summit will be held on November 10, 2014. Your entry is a product review video for the DiabetesMine Test Kitchen - and it needs to be in by June 19, 2014.
As a 2013 Patient Voices scholarship recipient, I say this:
The DiabetesMine Innovation Summit was a watershed experience for me. The passion of those attending from various communities: medical device, pharma, clinicians, developers, investors, insurance, and patient advocates was electric and infectious. All of us arrived wanting to share how we could work together to make life with diabetes easier using technology. We left with new ideas and a better understanding of what we need to do to make that happen.
If you have the opportunity to attend, do not pass it up. And this is your opportunity to attend this invitation only event!
3. Sweet! Advantame - the newest artificial sweetener to be approved by FDA on May 19, 2014.
For those of us who are stuck with limited choices for artificial sweeteners, here comes Advantame. It’s super concentrated sweet, but here’s the scoop from the FDA’s site:
Advantame is chemically related to aspartame, and certain individuals should avoid or restrict the use of aspartame. To that end, FDA evaluated whether the same individuals should avoid or restrict advantame, as well.
People who have phenylketonuria (PKU), a rare genetic disorder, have a difficult time metabolizing phenylalanine, a component of both aspartame and advantame. Newborns are tested for PKU using a common “heel-prick” test before they leave the hospital.
Foods containing aspartame must bear an information statement for people with PKU alerting them about the presence of phenylalanine. But advantame is much sweeter than aspartame, so only a very small amount needs to be used to reach the same level of sweetness. As a result, foods containing advantame do not need to bear that statement.
So, heads up - it’s chemically related to aspartame (Nutrasweet). I’m a sucralose (Splenda) chick when I use artificial sweetener (I buy Diet Coke with Splenda in can form, and have been known to bring my own 12 packs everywhere…). I try to avoid aspartame, so this new sweetener will be interesting to watch from a marketing perspective.
4. Speaking of Sweet!, I’m over at A Sweet Life, too.
I recently wrote an article about guilt and food and diabetes. See them all traipsing off into the sunset together? That’s what I’m talking about. (Spoiler: They don’t traipse off well.)
There are some stupendous articles written by some of my favorite peeps… and I’m happy to have been asked to add my voice over there. Pop on over and check the site out!
5. Diabetes Hands Foundation has got you in mind: MasterLab for Diabetes Advocates on July 2nd in Orlando.
Want to be a champion for effective diabetes policy? You’re in luck. The Diabetes Foundation will host the very first MasterLab, July 2, 2020 at Marriott’s Orlando World Center in Orlando, Florida! We are excited to offer the first of its kind, action to amplify diabetes advocacy. If you don’t have a background in diabetes advocacy, that’s ok! No previous experience needed.
I never thought I would be an advocate for diabetes. Hell, I never thought I’d be an advocate for anything. It’s funny how life brings you to new places.
I’ve learned a lot since I made the decision to speak up for myself, but I still have a long way to go… and I’m thrilled that this is happening.
Please seriously consider joining us.. Learn more and register here…
And a bonus Fab Friday Happy, because I’m deliriously happy about this…
Register for The Diabetes UnConference. We don’t want to miss you while we’re there, talking about the things that are important to us - people with diabetes.
Now go wiggle, wiggle, wiggle. Make yourself have a happy day.
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.