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Tuesday, December 16, 2014

Rogue cowboy programmers and helicopter parents....really Dexcom?


Dexcom CEO Terry Gregg and Jay Skyler MD PhD were interviewed by Steven Greer MD about the "rouge cowboy programmers" who have decoded their data for the Nightscout project.


Dexcom I understand where are you are coming from as a company that has to follow the FDA to a tee and go through all the hoops to get your products FDA approved.   What I dont understand is why you needed to call the people & parents of children with Diabetes rogue cowboy programmers?  This is totally uncalled for and a great way to insult the audience you are selling your products to.  We understand it took way too long to get the Dexcom Share approved by the FDA but that is not the fault of the people that collectively say #WeAreNotWaiting   Not everyone uses or like Apple products, you have left out the Android market all together with your Share product...plus you didnt make it rechargeable so that parents/loved ones can carry the Share around outside of the home. Didnt you realize that was something your audience was screaming for?


Our Diabetes doesn't turn off when we leave the front door to our home.  Diabetes is with us everywhere we go.  We need a product that can go with us everywhere we go to help us stay safe with Diabetes.  Fast track the latest Dexcom product, make it portable to be sent to all Apple and Android devices.  You cannot blame parents for making this sort of thing available NOW and not wait any longer.  You dont have to congratulate the people who did this for their hard work but you sure dont need to go on bashing them either.

Helicopter parents?! Really?  Dr. Skyler do you have a child with Diabetes?  I do not have a child with Diabetes but I have Diabetes myself.  I know how quickly and unexpectedly my blood sugar can crash without notice, I can only imagine how fast that can happen for a child with endless amounts of energy!  I read the stories of the parents who are using the Nightscout system and it has changed their lives and sometimes even saved their child's lives.  These "helicopter" parents are trying to in fact help their child live as normal of a life as possible with LESS intervention.  Instead of checking their blood sugar 1000 times a day and asking their child if they feel ok, they can just LOOK and see the answer.  Do you blame them?  Parents of children with Diabetes are the only ones who are going to be constantly aware of their childs' blood sugar readings.  Schools cant make sure they keep an eye on a kids Dexcom, nor can school nurses.   They have hundreds of other kids to care for and teachers are busy trying to teach a room full of kids and keep them under control.  There is  no reason for any medical professional to be so callous and call parents of Diabetic kids "helicopter" parents.  No reason at all.  They should have interviewed Dr. Edward Damiano, who does have a Diabetic child and is working on the Bionic pancreas project.  I can bet you he wouldn't call anyone a "helicopter" parent!!


By the way Mr. Gregg the CGM in the Cloud group has over 9,000 people I really would suggest not upsetting them since you hope to sell your products to them.  The Share probably isn't selling the greatest and that's kind of Dexcom's fault for not making it do what the people who want to use it do (be portable and Android friendly).  In the business world its just not good practice to ostracize a very large portion of your customers/the people who spend their hard earned money with your company.  I think Dexcom needs to offer an official apology for their misstep in voicing their opinion on the Nightscout.

Since the comments for this video have been disabled, let your voices be heard here!  Leave your comments for Dexcom and how this video has made you feel.  Please do not use profanity, lets all be as professional as we can even though this video has upset a lot of you.

12 comments:

  1. Thanks for kicking this off... I am actually a boderline Apple fanboy, yet I cannot understand why the uploader is Apple exclusive. Apple has 13% of the market and only sells higher end phones. Making the uploader Android compatible would do a lot for affordability. Also, there is no reason to require an app on either Apple or Google's ecosystem. A website combined with a text messaging or phone call notification would be platform agnostic. The concept of having individuals download the Share to access information is a bad idea.

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    1. Thanks to Diasend, we can have our Mac Compatibility. Gregg says he is a "Mac-Man" but has a funny way of showing it.

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  2. Megan, thanks so much for your post, you are an amazing inspiration and WARRIOR!

    Like you, we love the G4. LOVE IT. It is absolutely superior to any other CGM out there, which I initially believed was due to a company dedicated to making life safer, easier and more convenient to Type 1 Diabetics and their caregivers. That belief changed drastically after I viewed the video featuring a discussion between Dexcom's CEO and a doctor.

    Seeing the BG# via CGM display is like being able to look out my window 24/7 to see what's going on in the world I am living in. Accessing the CGM #s/arrows remotely (which Nightscout allows us to do) is like having a webcam on the view that I crave--for all those times I cannot have my nose pressed up to the glass (watching my 8-year-old daughter's Dexcom).

    Yet Mr. Gregg and Dr. Skyler view those of us who want to have the Dexcom data available remotely (i.e., Nightscouters) as rogue and overzealous. The other thing I find appalling from the discussion I viewed was a willingness to misrepresent the new Share device as portable. If you want to talk "rogue," look no further than the doctor or anyone on the Dexcom payroll who claims that Share can be toted around the school playground. That's beyond wishful thinking for Share users, though it's the happy privilege of those who have had the wherewithal to create and/or access Nightscout software and equipment.

    I'll be interested in seeing where Dexcom goes from here in terms of attitude and inclusivity. But whether or not the company decides to opt for an abundance mindset, I, thousands of us #ARE NOT WAITING.

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  3. These gentlemen offended me! How dare they call me a "helicopter parent!" Do they even know what it's like to care for a type 1 child 24/7? This "cowboy" approach gives so many parents peace of mind! I love that I can check my daughter's blood glucose wherever I am. We don't even have to be with Bluetooth range! She can live her life as a normal teenager and I can have peace knowing her sugars are ok. Or, I can take action if necessary. This is a life and death disease. You better believe we are helicopter parents. I haven't put my daughter at risk by using this format. I feel like I will put her at risk if I DON'T use this format. These gentlemen need to get EDUCATED on Type 1 Diabetes and on our "cowboy" methods!

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  4. On the one hand endocrinologists want us to have our children check many times per day and report any off numbers to their parents, on the other if we can just look at their numbers we are helicopter parents. No one who has not had a young toddler, pre-teen, or young teenager with diabetes can understand the help that having an ability to immediately see trends without an extra finger prick creates. My son was dx'd at just over 1 year of age. He is now an older teen, I would have given anything to be able to see his levels without waking up every night to check him for 16 years. Many, many times he went extremely low overnight without waking up, had I not checked on him who knows what would have occurred. That is not being a helicopter parent, that is being a preventative oriented parent.

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  5. If my child had T1D (like I do) you better believe I'd cowboy right up there, jump in my helicopter and nightscout away!

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  6. I don't think this is offensive or meant to be at all, the Rogue Cowboy programmers or people who developed the software did go rogue, they took a device and changed it to meet their ideas. I don't think it's a bad thing to have done BUT from a corporate standpoint they did go 'off-book'. Dexcom is correct in this does not have FDA approval and it doesn't meet the necessary specifications, that's why it's not being sold. From Dexcom's point of view they've lost sales of 'Share' because Nightscout does exist so that stinks. I found what the Dr. said to be encouraging the G5 is meant to go directly to a phone, Dexcom is working towards that, they just aren't their yet because they want to make money off of it so it needs approval.
    As for Helicopter parents, yes the term is rather crude but it's accurate, this allows parents to watch over their child's BS constantly. My parents never had anything like this when I was growing up but I'm sure if it had existed they would have used it as well. I don't think he meant being a Helicopter parent as a bad thing, it's not a bad thing, it is what it is though. Parents are hovering over their child's BS levels, that makes them helicopter-ish; no one is faulting them for doing it though.
    I wouldn't take anything they said in this video as meaning to offend anyone, they are a company, their goal is to make money selling CGM systems, this is them stating the facts: that Nightscout is off book, it's not FDA approved and they can't condone it. I highly doubt a video like this is going to affect anyone using or thinking of using Nightscout, but when the G5 system comes out I would expect most Nightscout users will transition to the G5 as they become eligible to upgrade...Dexcom knows this and they know they have the best system out their. No matter if you were offended, is that going to stop you from using Dex? I don't think so.

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    1. Finally the voice of reason in all of this. Well said!

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  7. I, too, am offended by this video. My daughter, at 10 years old, has been living with T1D for half her life. She was also recently diagnosed with a heart condition and put on beta blockers, which make her hypo-unaware. Until we got the Dexcom G4, we were pricking fingers every 2 hours! I have been and will continue to sing the praises of Dexcom.

    However, part of the reason we chose Dexcom over other CGMs was these Rogue Cowboys and the world that Nightscout opens...not the least of which is her being able to go on a sleepover at a friend’s house - imagine being a young girl and not having that privilege! Having the numbers available to me means she gets to be a “normal” kid, if only for a little while. Having the numbers available to her school nurse means she doesn’t get pulled out of class as often, the nurse can just take a peek without disturbing her - giving her more opportunity to learn.

    They can refer to us as helicopter parents; I believe watching out for the health and safety of our children makes us responsible, caring parents.

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  8. I liked the video; but I think the article is outrageous. I did not take it as Dexcom badmouthing the Night Scout nor the parents of Type 1's who may resemble a helicopter hovering over there child. We all know how dangerous a disease this is. Where would we be without Dexcom? Can you still remember how bad it was before Dexcom? Let's not bad mouth Dexcom!

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    1. Im not sure how you view my post outrageous? Also I am not "bad mouthing" Dexcom in any way really, I just personally think they over reacted to the Nightscout system and went out of their way to trash talk it when it just wasnt needed. They also should have never interview the other doctor as he has upset many many parents in his portrayal of the reason they use Dexcom. It doesnt make sense at all really since the next gen will go to a smartphone. This tech makes it so parents DONT have to be hovering over their children with Diabetes. They obviously really have no idea how it works or what it does. A parent of a child with type 1 would be neglectful if they didnt keep a watchful eye on their child. Before Dexcom there was the Navigator and Medtronic's cgm....Dexcom is the first to the game and they wont be the last. They need to stay ahead of the game and bring out what the people are demanding so that people don't have to do something like develop the Nightscout. I am not personally bashing Dexcom, but Dexcom didnt need to go out of their way to say these hurtful things to the very customers they are hoping to make money off of.

      I know it wont stop anyone from staying with Dexcom because we are all so dependent on the technology BUT they should not be so brazen...another company could pop up at anytime and get what these people are all looking for faster and without slamming the people they hope to make those millions off of.

      Dexcom could at least come out with a statement that this Dr. Jay Skyler is not employed by Dexcom nor do they necessarily share the same opinions as he does.

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  9. I am a health care professional who works with many children with Type 1 diabetes including several who use the NightScout system. I have to side with the majority of comments on the blog in that I found this interview to be offensive or at least a bit callous. My experience with the families using this system is that it has allowed parents to feel much less anxiety rather than increasing so-called "helicopter" behavior. Several patients I know have achieved significant improvements in control using this system.

    It really would have been much more appropriate if Mr. Gregg would have said that while Dexcom could not condone the use of the NightScout system that the development of the NightScout system reflected a need of the T1DM community and that Dexcom acknowledges this need in the development of the SHARE device. The CGM in the cloud system is an open source project and many concerned parents volunteered many hours to developing the system. I have personal knowledge of the efforts of one of the key people in this project and to call him a "rogue" or a "cowboy" is very offensive given his work, as well as the efforts of many other people, as all of this effort was motivated by the love they have for their children and done in the context of concern about their children with diabetes. On the other hand, Mr. Gregg comes across, at least to me, as bad mouthing the NightScout system because it is competition for the SHARE device. The post by "Anonymous" above (Dec 16, 4:04 pm) appropriately points out that Dexcom's motive is to make money, so of course they don't like the NightScout- fair enough, but again, he (Gregg) doesn't need to be insensitive by calling caring parents who have volunteered for this project by derogatory terms.

    In a similar vein, maybe Jay Skyler doesn't mean "helicopter parent" in a derogatory manner as Anonymous also points out, but the fact that so many people are interpreting it that way at least suggests that he should be more aware of how he is being perceived and use a term that signals a bit more empathy with families (especially as he admits to having no personal experience with patients using the NightScout).

    And like Megan said- why be hurtful to people you want to serve as customers?

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