Without warning, the surprise came as the recent Medtronic Diabetes Advocates Forum was coming to a close. Our group of about 30 advocates was sitting in the conference room listening to Nancy Katz, VP of consumer marketing, give closing remarks when she made an announcement that caught us completely off guard.
The news: We were being given the chance to use the newly-approved mySentry system and related products on a trial run for three months.
We didn't ask for and honestly didn't expect this.... Incredible offer that would be open to us, if we choose to accept it. I'm pretty sure I heard a roomful of gasps and someone may have proclaimed "Holy shit" when hearing this. It might have been me.
News about the FDA's approval of this gadget came in early January after something like four years of talk and waiting by many in the D-community, mostly parents. This is essentially like a CGM-connected alarm clock, which has a monitor that can sit on a nightstand or desktop and display real-time CGM sensor data worn by an Adult or Child With Diabetes. Through an outpost that can be placed up to 50 feet away. Shows predictive alarms at both BG ends and is marketed as being "just a glance away" to provide some peace for nighttime sleeping without worry of dangerous Lows.
But the device is mind-boggling expensive and hot off the shelves, meaning insurance might be more reluctant to cover it without first seeing the need and value of those patient end-users (Med-T let us know within a week of the DAF is that both Ohio State
Health Plan and AvMed Health Plan in Florida have already established coverage).
This mySentry offer came on Friday, March 30. And I spent about three weeks pondering the possibility and whether it was something I wanted, needed, or even had the stomach to accept. This has been something I've struggled with and have not been sure if I'd participate in, even though I'm a loyal Medtronic pump user myself (a Dex CGM wearer, though!).
I'm close to a decision, but haven't officially decided yet. I let the Medtronic folk know about my possible interest last week, and they've sent me prescription forms that need my Endo's signature before anything more can happen. And so that's where we are at this point.
On one hand, the issue of fairness was on my mind. Is it fair that I am offered this opportunity when so many others in the Diabetes Community aren't? Why should I have this chance when others probably need it just as much, if not more? Especially those who might view it as an incredibly important new device that they really want, but just can't access at this time?
And it's not even just the mySentry device, which costs a mind-blowing $3,000 (WTF, Medtronic?!?!? Are you freakn' serious?). No, we're also talking extra stuff, too. I currently use the 722 Paradigm pump that does not have predictive alerts; so that means I'd need a 723 Paradigm Revel, which would cost me roughly about $399 after a trade-in rebate for my previous generation pump. Tack pump supplies and CGM sensors, and we're easily into the hundreds of dollars that I would probably have to hand over after my insurance coverage. So in total, I'm guessing that post-insurance (assuming there's even coverage for the MySentry at this point) we're talking a few thousand dollars.
Then, I questioned my own ethics and objectivity. More so, how this might look to skeptical eyes and critics: Medtronic not only flew me to California and put me up for a couple nights in March, but now they're basically buying my publicity by waving free devices and supplies at me for 90 days. Not to mention the tab for airfare, transportation and lodging that Medtronic paid to get me to the forum. How can I possibly even consider this as "objective" coverage that can be defended, especially through my lens as a newspaper reporter who knows better than these types of things?!
My heart and mind wrestled with this, leaning against this generous offer by Medtronic.
But two things made me look at this differently.
First, I realized something: the importance of evaluating this very newly-approved device outweighs the concerns because of a very simple truth: I tell it like it is.
Don't expect sugar-coating (is that a diabetes joke there?), or a glossing over of critical components to make this out to be good when it's really not. And if it's good, I'm not going to be critical or negative about it. (Seriously - what D-device has ever been 100% good and not worthy of some criticism? None, as far as I've experienced.) My integrity, honesty and transparency stands on its own. And if critics or skeptics don't like it, they are free to not read my posts or my blog at all.
I'm a patient, and this is a seriously-interesting (but overly-expensive) new gadget. If it's being marketed as something it's not, that is important to talk about and tell people who might be considering using it in the future. BEFORE they put the time and money into getting it for themselves.
There's something else, though. In the end, the decision was one that both Suzi and I reached together - based on our differing views.
See, I believe in the potential benefit of this device and think it will help provide what the marketing people have said is that needed night-time relief. Not only for myself, but for my wife. That it might actually help wake me up and prevent some of those night-time lows when they come at me unexpectedly. Plus, it can be taken when traveling and that's particularly appealing for me - as I'm prone to going Low when I am by myself and that's even more scary when Suzi isn't there with me.
I saw a demo (link goes to Sara's fantastic recording of the presentation from the front row) at the Medtronic DAF and heard the alarm(s) in person, and really think it's something that would draw me out of deep sleep and motivate me to test, treat or take care of whatever needs to be taken care of in the middle of the night.
My Loving and Supporting Spouse disagrees, and doesn't see the need. She leans toward thinking this is a glorified "alarm clock" version of the CGM that I already have and use. Although it may make a noise that's louder and more noticeable than the little oval-shaped Dexcom or even the Medtronic CGM-pump Paradigm combo that I had used before, she thinks it's too easy to silence and ultimately won't stop me from hitting "snooze" and ignoring it.
Yes, my wife sees the benefit for a parent in another room who might not have to wake up in the middle of the night and go check a child's pump or CGM. Or even those sleeping alone, who might be more prone to sleeping through the less-audible sound or burying the device under a pillow. But for us, who sleep in the same bed (when I don't fall asleep on the couch) and basically have each other as a layer of security in case of sneaky Lows, she's not convinced.
And so, that's what has guided our decision up to this point.
With this trial, we may see that one of us is correct and the other's wrong. Or we may see that we're both right or wrong to some extent. Either way, that's something we can share, together. So that the story is told based on our observations. No, it's not fair that everyone can't go through a trial like this. But it's a start, I suppose, in getting the message out about this gadget and what it does or doesn't mean to those of us in the Diabetes Community.
But before a final decision is made, I want to hear from YOU. What do you think, based on all of this? I've read some other blogs and commenters voicing concern about this arrangement, and know some of my fellow D-advocates have also been wrestling with the issue. Just some of those I've seen write about this include - KellyK, Kim, Sara, Sarah (Sugabetic), Scottie J, Amy and Bennet to name just a few of those I've seen so far.
I'm happy to talk more on this whole topic, and of course will be sharing as the trial period moves forward. So stay tuned for that and please don't hesitate to reach out and ask questions, offer comments or criticism, or whatever may be on the mind. Feel free to comment here on this post, send an email, use Twitter, or just give me a call if you feel the need. Eager to hear your thoughts on what direction to go here. Thanks!