Tuesday, April 17, 2012

MySpouse and mySentry

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!

14 comments:

Leighann of D-Mom Blog said...

Here's the thing, Michael: parents and patients who are interested in the (expensive) technology want to hear about the pros and cons of this type of device from people actually living and dealing with diabetes BEFORE shelling out the big bucks. It's difficult to know from glossy brochures and websites whether a product lives up to its claims.

Think of the other couples in your situation who are on the fence. They might read your posts about your trial and think "Yes, I can see where this would really help our family" or "No, I don't think the benefit outweighs the costs."

I have no doubt that you will report fairly about your experience. As long as you disclose and are honest with your opinions, I see no problem with you doing the trial.

And make sure you are clear: You are not receiving this system for FREE to keep FOREVER. You are giving it back at the end or paying for it (hopefully with the aid of insurance). Think of it as test driving a car.

(Disclosure: Our family is currently using the system on loan and are heavily weighing the costs.)

Cara said...

I don't know that I would feel the need for one if I had someone with me all the time. I personally would LOVE to be able to afford one (or to have insurance pay) simply because I can't hear my MM cgms alarms at night AND I love alone. Sometimes my alarms go off for HOURS before I hear them. It's scary & dangerous.
As for the objectivity, I don't have any problems with them offering you guys this opportunity. All of you have been honest & forthcoming about what Medtronic had given & offered you. Sure, it could make your opinion slightly skewed, but I doubt it.
I doubt it because anyone who if willing to be honest about the fact that something was given to them is probably going to be honest about their opinion.
I've been given items to write about on my blog before & I've always been honest about them. The things I don't like about a product, I say. The things I do like about a product I say. I may be NICE about how I write it, but it doesn't stop me from being honest.
BTW, I'm always proud of the job you guys d do when representing us in the D-OC. Sure, I'd love to be there, but if I can't be, I'm proud of who is.

Scott E said...

Mike, I can't speak to your financial concerns - those are for you to decide. But regarding your thoughts of fairness, impartiality, and being sucked into a sales pitch, I think you should go for it.

First, on the issue of fairness, yes, it's true that others probably can benefit from this more than you. Others probably could use the financial assistance or the security the MySentry offers, for the sake of their kids in the next room, more than you. But by declining this offer, it won't get passed on to someone more deserving. This unit will just go back on the shelf, ready to be sold to whoever coughs up the manufacturer's suggested retail price.

Regarding impartiality, while your concerns are well-intentioned, remember that we as bloggers are not journalists. We cross that line every time we discuss treatments and invoke the "I am not a medical professional" disclaimer (I think you have one of those, right?). We're more like columnists, where opinions are understood and expected to be such. In fact, we're not even columnists, we're just advocates - trying to make it easier for PWDs to navigate life. So long as you're committed to using this trial for good and not evil (I'm sure you are), I see no problem with trying it and writing about it, if you choose to do so.

Finally, this offer isn't like a drug-dealer trying to get you addicted to a free sample of meth. Medtronic knows that bloggers, particularly the ones they've chosen, are influential, and this is your chance to influence the MySentry 2. Do you think that, after three months, they'll take it back, no questions asked? I'm sure they'll solicit your feedback: what do you like, what don't you like, what would you change; so it can be incorporated into a future version of the product. Personally, I would love to have that influence over the developers. I could give them a list of simple, easily implementable enhancements to the Revel/Guardian that would put Animas and Dexcom to shame. But, alas, I don't. You have the chance to make the next big thing even bigger, better, and more useful -- for all of us. That's a tremendous gift, please don't turn it away.

Shannon said...

Great (and objective) post, Mike. I have been very interested in the MySentry and have been stalking it somewhat, reading everyone's blogs/updates about it. I even know of a parent of a Type 1 that is considering switching pump manufacturers when her warranty is up, just so she can get this new device and actually get some rest during the night.

As an adult, I also am notorious for silencing my CGM alarm. And it's usually clipped to me, so I also don't unclip it to then turn the backlight on so I can see my BG. However, if it was RIGHT THERE on the nightstand..... I think that'd be very beneficial. I'm looking forward to the day when this is available for public use and even more so, the day when insurance companies will cover it. :)

Thanks for representin'!!

Barb (Diabetes Advocacy) said...

I agree with what many others have said. I am not a reporter. I am a mom of a CWD. I LOVE hearing from people who have used the technology to see the pros and cons (including the high costs that you have mentioned). You have always shown yourself to be unbiased and fair. Personally, I love free but with free does not mean that you have bought me. I believe that only people living with diabetes can truly rate the quality of these devices. If you don't live our lives, it is impossible to be unbiased. You live here and you and your wife will chose what is best for you. Your logic and review so far is great!

Richard said...

Some moms in the Facebook parent's groups have this device and, apparently, it was covered by insurance. I find that hard to beleve since it is so new and not many people even know about it yet.

My wife has watched after me since 1964...YIKES!! We sleep in separate twin beds on opposite sides of the room, but she can sense my becoming restless. She wakes me and I test. I have been forwarned about hundreds of overnight lows by her uncanny ability to come out of her own sleep pattern, and know I may be in trouble. I don't think I will need one of these gadgets. My wife is my sentry. Lol!

Let us know how you get along with yours.

Maria Q said...

They offered you a chance to test this awesome thing out because you are a well known advocate, not just any old person with D. They value your opinions more than the rest of us because you're representing us. I understand that this is an ethically gray area but some part of me feels like you guys have to accept this offer for the rest of us. They wouldn't have chosen you if you were upstanding members of the DOC who would worry about disclosure and inadvertent coercion. Either way, whatever you chose, you have to be able to handle the results. We, your readers, are just along for the ride. :)

Princess LadyBug said...

Mike I trust you to always speak the truth & tell it like it is. I think that your input on this device could prove to be extremely valuable, not just to parents but to those of us who sleep alone. I hope you do decide to give it a try. And I can't wait to read everyone's thoughts on the testing.

Jonah said...

I'm gonna voice the other side of the issue- why you shouldn't take it.
Here it is: Medtronic is charging WAY WAY more than they should for a simple device that wouldn't be necessary if they would make the alarms loud enough in the first place, something that they are not likely to do if they can get an extra 3 grand per person instead.
Medtronic will get away with this if this product is accepted as an okay alternative to having made a good and affordable product. That will most readily happen if people like you profile MySentry, and what's more, profile it without having in mind that you had to shell out three grand for it, so that you'll be thinking that it's great- cause it is, if you got it for free.

Sara said...

If anyone thinks that someone trying a product for free from a company can't be objective - I think they should read a little here - http://lifeafterdx.blogspot.com/

Kelly Booth said...

I am going to tell you basically the same thing that I told Scott when he wrote his article – I know that you are going to tell the truth about what you think about it regardless of what those thoughts are. As far as having an opportunity that other people don’t, every product has to start somewhere. I am guessing parents have a better chance of convincing their insurance companies to pay for it since it is another room than an adult would, but you might discover some things that us adults can use for those appeals.

I sleep thru the Dexcom alarms and don’t hear them at all. If the alarms were louder and could put it further away from my bed so that I had to get out of bed to shut it up, that would be a good thing. Although I agree with your wife that it might not be necessary when she is there, it might bring some peace of mind to her when you are traveling.

I say go for it!

shannon said...

seconding leighann's comment, she said it better than i could anyway. :)

MommaKat said...

I always end up finding these discussions late - perhaps because I am a sleep deprived D-mom trying (in vain) to catch up on sleep after emergency surgery. Diabetes never waits, right?

Mine is just one parent view, a single parent, low income, crummy insurance view colored by my experience as a nurse (long before life with D). Bottom line, we do need people to test and honestly, objectively report on the pros and cons of this very expensive baby monitor on steroids. Sure, Medtronic and other companies are definitely charging too much, they absolutely should have made pump alarms louder or adjustable, and it would go a long way if they could at least admit that their error led to the need for MySentry in the first place.

Moms like me appreciate that diabetic advocates such as yourself, those you mentioned, and others have addressed the issue of fairness and equity. Honestly, the fact that you struggled with the decision on that basis provides a great sense of comfort and trust in your role as known diabetic advocates - we really get to see that you are there fighting for people and children with diabetes, and not (just) the companies.

As much comfort as I or other parents might gain from your honest and much appreciated post, the people we really want to see mulling over the issues of fairness and equity are the sales reps and marketing personnel at Medtronic. While I am hugely loyal as a result of their commitment to research, the pressure to buy or at least try to buy MySentry regardless of customer demographic is fierce. Like many parents, I have a kids who drops like a rocket at night - we don't know if it's hormones, honeymoon, or why it persists in our transition from MDI to pumping. Medtronic as a company is well aware that the majority of families with CWDs don't have adequate insurance coverage (if any) for CGM let alone MySentry, and still they push for sales at exorbitant rates, and simultaneously have nearly dismantled their financial assistance program.

Should you trail MySentry, and will families with children or adults who truly believe they need, not just want this device be okay with that? Absolutely yes to both. And, while you're providing feedback on the pros and cons of this device, as known (and appreciated) advocates, you might carry our voices back to Medtronic. It's reprehensible that they're charging that kind of money to consumers, and many feel it's tantamount to asking us to pay for their mistake.

Anonymous said...

First of all, I don't doubt the honesty of everyone who does decide to participate in this offer. (and there's no doubt that it may be a life-changing/essential piece of equipment) (you all will tell it like it is, good or bad) To me,it just reeks of Medtronic trying to get their product all of over the D-sphere (I hardly think they are doing it out of the goodness of their hearts) Even if some people don't like it, others will. (and the opinion of influential d-bloggers does alot to influence others to buy) For Medtronic, its a win-win situation. (their sales can only go up-& they aren't actually giving anything away for free, except the sensors) I wish they were doing this for more people..not just the ones who will blog about it. To me, it just seems like $$$ is the only thing Medtronic is concerned about.