The supposedly B Corp startup Beta Bionics discovered a massive security flaw in the Dexcom G5 in 2017 that allowed any Dexcom CGM to be easily hacked via Bluetooth to raise or lower the CGM readout number--meaning it could cause a potentially lethal dose of insulin from a connected pump. What did Beta Bionics do? They didn't alert the T1D community. Instead, they used it to create a strategic partnership with Dexcom. Dexcom did not alert their users either. These companies do not care about the public.
The Dexcom 6 does sound like a great advantage for children with Diabetes when it works, and just as useless when its doesn't. There should definitely be an emergency notification immediately at as Dexcom 6 shut down from the company. Also could be useful to adults with Diabetes.
Type 1 diabetics who adhere to a nutritional ketogenic diet such as pioneered by Dr. Bernstein or Dr. Ian Lake will find their highs and lows are controlled and may need only basal insulin. It may be a good insurance policy rather than relying on cgm technology to work 100% of the time.
I use the Medtronics 670G pump. It has an algorithm that reduces or even stops basal insulin delivery if the glucose sensor reports a low blood sugar. (Similarly it increases basal insulin delivery if the blood sugar is elevated.) The pump makes these adjustments automatically, without requiring my attention. It does not rely on a smart phone app, nor does it depend on the functioning of Medtronics’ servers.
1
Clearly there needs to be an FDA safety regulation requiring any company supplying life critical services like this to include mandatory multiple backups for notification. In the mean time a class action lawsuit for damages is appropriate with part of the settlement a binding legal agreement with real teeth that the company must provide for 24/7 IT support plus multiple pathway notifications in case of an outage. Text email and Facebook seems like a start, but more paths is better. Especially with how simple it is to set up an automatic notification system their 24/7 IT staff can use. Separate from their main system in case of it going down. The comments here document their recurrent failure to have 24/7 IT support voluntarily so mandatory it is.
As an adult T1D patient and a physician, it is discouraging to see this company fail at something so basic as timely and effective patient notifications for a significant product failure. I can attest from personal use of continuous glucose monitors that Dexcom’s G5 and G6 CGM systems are superior to their closest competitor’s, Medtronic. They are easier to insert, more user-friendly to calibrate, and vastly superior in adhesive and sensor body design. I am currently using a Medtronic CGM, however, in part because I ran into similar IT issues with Dexcom in 2017 that the company was clearly unable to solve on a Friday night that magically resolved the next Monday AM. In my case, I lost all CGM functionality because I I upgraded my iPhone, and a “server issue” prevented me from accessing my app profile or resetting my password for the duration of a weekend.
Dexcom makes a ton of revenue selling these devices, and it’s past time to see them focus less on profit-taking on more on basic 24-7 IT support for lifesaving medical devices. This incident is a symptom of a larger problem in the medical device industry which is that IT reliability and redundancy is not part of the FDA approval process. Medtronic is barely better in this regard, as their version of CGM achieves reliability through a near absence of innovation. Their CGM data cannot be shared with other users or even your own phone.
2
I use a Dexcom G6 which has been a game changer in diabetes management for myself, other fellow diabetics, and parents/caregivers of children with diabetics. No technology is immune to failure, but because people's lives are on the line here Dexcom needs to send out real time alerts if there is an outage.
1
The other major and deeply concerning issue that Dexcom also does not talk about is the risks that occur if you use an IPhone as your monitoring device. To this day, Dexcom has not fixed their software so it can consistently interact via Bluetooth with the latest IPhone OS. In fact the last 4 versions of iPhone OS do not consistently link via Bluetooth with the Dexcom 6. The net result is the frequent inability of Dexcom users to get readings on their phone.
What’s the most confounding is given how dependent a Type 1 diabetic is on accurate monitoring, is how Dexcom is so behind and seemingly not resolving this issue. There are app companies that don’t have a $1 billion revenues like Dexcom that are can make their products run on the latest OS but Dexcom is still “ working on it”. This is mission critical stuff and all Dexcom will do is suggest you buy their own reader instead. IPhone Users beware!
3
I use Dexcom G6 and never realized an outage had occurred. Dexcom notifying people of a potentially life-threatening situation via Facebook is ridiculous but then since they started outsourcing their customer service - these are questions about health and safety not cable subscriptions - to an overseas call center with untrained staff, it seems that the value they put on their customers/patients health is not what it should be. Also, Mr. O'Connor, a Dexcom G6 can be worn elsewhere, not just on the abdomen. Also, people with T1D are PWD (people with diabetes) not diabetics.
1
I use a Dexcom 6 for myself and this is the first I am even hearing of this issue.
Dexcom will have some explaining to do to me before I thinking of reordering my supplies.
Such as, for example, why it still has not bothered to communicate to me that this issue even existed.
1
I am unable to read this without thinking of the photos of art created by a janitor who was working with items collected by ICE. Included in his work were insulin syringes.
The disparity is heartbreaking.
1
My son, 17, has T1D and uses the g6, which is great when it’s working properly. But there is absolutely no excuse for Dexcom only notifying via Facebook when it could easily have sent texts/emails as well.
5
@Jim H As I wrote in another response, I use Dexcom for myself and this article is the first I am hearing of this.
I am not on Facebook nor do I ever want to be on it.
I am a voracious user of e-mail, however. Dexcom has some nerve here.
4
G6 is awesome. This technology is truly a life changer for those with loved ones with T1D. Things like this happen, and yes it should be addressed. However, the "outrage" here at a lapse in the technology also shows how truly amazing it is.
My wife and I are big hikers, mountaineers and back country skiers. Predicting low blood sugars during these activities has dramatically improved our quality of life and recreating. Seeing trends not only helps with adventures though. Day to day management is not only easier, it is better. It is significantly easier to maintain proper blood sugar levels, and the G6 is actually accurate.
7
Although I may not be in the twilight of my life I’m, Surely a lot older than when I was a kid. and NOW, and having to deal with adult onset diabetes, type two, I just could not imagine having type one being a kid, as I used to sit with a bag of gummy bears and put down a half pound of them in one sitting… Hmm, could that be why I have type two diabetes, and hate fads like running with out a purpose, like the cops.
2
The outage only "puts [you] at risk" if you are gullible enough to risk your life and health to technology that you don't control without a backup plan to make sure that you can monitor without the technology. If you choose to risk your health and life on technology, your life is only as safe as the technology is reliable. To think otherwise, is to take unnecessary risks.
9
@Lona Obviously you do not manage the life of a child who has T1D. Your outside perspective is understandably ignorant. Parents managing T1D children, who are unable to care for themselves, 100% have manual glucose monitors which we do revert to when dexcom has issues (quite frequently). What we rely on with a Glucose monitor, like dexcom, is a simple phone alarm to tell us when readings are not making it to our follow apps (which gets data from Dexcom’s servers). Those alerts did not occur as they normally do when the servers are up and glucose readings stop for some other reason; that is the failure and frustration. Dexcom must ALWAYS have a means to notify users immediately that their service is down.
28
For those who are suggesting that the FDA needs to investigate, the FDA role in medical smart phone apps has only just been announced. In September of 2019, the FDA announced its "guidance document to inform manufacturers, distributors, and other entities about how the FDA intends to apply its regulatory authorities to select software applications intended for use on mobile platforms (mobile applications or "mobile apps") or on general-purpose computing platforms."
I’m a T1 adult who equates control with steady blood sugar levels not simply constant feedback from testing. Constant testing should be an affirmation of your control measures - diet, exercise, sleep, and medication - not a primary control tool.
2
@Linda hoquist Linda so am I, for 40 years. But being responsible for a child with the disease is entirely different. The heuristics you're talking about are learned over time and with experience, experience children don't have and can't judge with the same degree of maturity. And the dynamics of the disease are very different for a child, in whom development causes many hormonal shifts and a highly variable disease state.
9
@Linda hoquist Did you get T1D as a child? If not, perhaps you are not aware of the effect that hormones and changing schedules (sports for 2 hours 3 days a week but not others), etc., has on blood sugar? My T1D daughter is a figure skater and skating has a strong effect on her blood sugar, often for up to 12 hours later. But not always. It's a mystery we are still figuring out (been 1 year now). Without the Dexcom, it would be impossible to even begin to try figure it out at all.
4
@Linda hoquist You are an adult and you have your blood sugar under your conscious control. Sounds like you have forgotten that it does not work the same for a child. A child is usually not capable of what you do, not for years after getting Type 1 diabetes. From age 7 when she suddenly developed diabetes my daughter needed adult supervision until she matured. For years as a single dad I went to work exhausted because I slept in naps between nighttime checks. This company is just lucky their negligence was not fatal.
2
As father of a child with Type 1 (diagnosed at 4), this is one of the scariest stories I've read. This tech was not around back then, so we had to monitor his levels the old fashion way, which is very stressful for all parties, especially for my son who had to prick or take a shot up to 15 times a day, so I get why parents would use the tech.
There should definitely be a fail safe and countless back-up systems for events like this, and the manufacturer(s) needs to be more proactive when such events happen. There is zero excuse for not warning uses of the issue immediately.
19
I am not criticizing the parents commenting here. It must be very difficult and worrying to have t1 children. Do you not use the G6 receiver or G6 app to get alerts? I am t1 and use a Dexcom G5 with the receiver.
If something can go wrong, it will. One word, Parents: Lawyer. Also: Class Action. The only thing Businesses respond to is losing Money. Also, is there a comparable system available ? Or is this the big new thing, and the early adopters are guinea pigs ?
Beast Wishes.
10
@Phyliss Dalmatian No, this is not a flash in the pan. I've had the disease for 40 years, most of it without this tech.
CGM is like taking off a blindfold and being able to see while driving, after having done it by "feel" and "planning" and stealing a look every few hours, which is, comparatively, as ridiculous as it sounds. But it was all we had.
Double that for a child, who has a child's judgment and a child's understanding of a highly dynamic disease. Parents of T1D kids don't need this to work 100% of the time, but they absolutely do need to be notified in a timely way when it fails.
3
This is a horrible thing -- and the real problem here is a company that STILL has not solved the problem with the sharing which allows loved ones to know how someone is doing. AND it took them FOREVER to alert users. This has already endangered lives.
3
I rely on the G6 for safety but I knew when the system went down on Friday that it wouldn’t be fixed until Monday after the Thanksgiving holiday weekend. Dexcom was too cheap to pay for overtime expert help during the weekend. Sure enough the system came back up Monday morning after Dexcom’s staff returned from the holiday. Shame on you Dexcom; you make tons of money off this this product. You could have shelled out a little to her a few people to fix the system over the weekend.
17
I first read this as 'outrage' which it surely is.
7
The most important news are not the outage, since outages can happen. Dexcom is intentially downplaying the massive problems by using completely wrong descriptive words like glitch, when disaster is more descriptive.
But the real disaster is that Dexcom has developed an app that does not alert users when the database servers are not available or does not respond as expected. Such an alert would have been obvious, but Dexcom does not like to make such facts visible and possibly have decided that such information is unfortunate for Dexcom.
If you look at the most critical Dexcom app, the Dexcom G6 app that directly communicates with the medical equipment, that app hides signal loss situations for minimum 20 minutes to look better. Updates take place each 5th minute, so much can happen in 20 minutes.
Another problem was that the outage also took down:
- All 3rd party monitoring solutions like Diasend/Glooko, NightScout, Tidepool, Sugarmate, Xdrip, Apple Watch and Fitbit watches - that receive Dexcom G6 data via Dexcom Online/Share.
Many users prefer follow type monitoring solutions from NightScout as it is functionally superior to Dexcoms services.
-All 3rd party analysis solutions, like Diasend/Glooko, NightScout, NightScout Reporter, Tidepool - that receive Dexcom G6 data via Dexcom Online/Share.
This did create monitoring problems for users with automated insulin injection solutions...!
Many users had problems starting new G6 transmitters.
More investigations...?
8
I know people who use Dexcom. It’s a wonderful thing. But the handling of this outage was not good at all.
Any app of this sort should have a built-in alarm when positive communication with the service is unavailable for longer than a maximum timeout. At that point parents would know to start doing testing the old fashioned way until the service is available.
Also, in my opinion absolutely no company should rely on Facebook for critical public information updates. The Facebook algorithm doesn’t always show every post to everyone and these notifications need to be pushed out as an alert anyway because time is of the essence. (Furthermore, even signing up for a Facebook group like that is a type of disclosure of a medical issue, information that Facebook shouldn’t even have.)
23
Rather stunning not to have both a watchdog for no service signal received (directly at the app during an interval, and/or indirectly at the app that the Dexcom server has not received an update in an interval so status is unknown), and Dexcom not issuing a message through any one of many back up services that the Dexcom infrastructure has failed. The app pings the owner that backup manual methods must be used. The EULA won't bring the dead back to life.
Lets hope that Dexcom knows about that odd capability known as encryption.
On the upside, the service sounds like it greatly eases the effort needed by caregivers; sleep deprivation is a hazard unto itself.
6
So many of us are understandably upset and disappointed over this tech glitch and Dexcom’s inexplicable communication lapse. But before we sharpen our pitchforks and call for the FDA To lower the the boom on Dexcom let’s remember how truly innovative this company has been. A relatively small company went head to head with a giant (Medtronic) and created a superior product that has enhanced the health and quality of life for so many of us. There are going to be missteps along the way. I think Dexcom will learn from this experience and make the product and its customer service even better.
12
Our daughter uses the G6 and it’s generally 70 percent good, 30 percent glitchy on an average day, so we still do a lot of finger sticks, but we are grateful to have this tech in our T1D arsenal. That said, as a family without Facebook or other social media, it is incomprehensible to us that Dexcom would communicate this outage solely on a social media platform. As another writer here noted, Dexcom has every user’s email and contact. Instead of using our info for marketing and happy talk, next time this happens (and it will) the company must act with urgency and communicate with customers directly. This isn’t just disappointing. It’s unacceptable.
31
I’m an endocrinologist who prescribes Dexcom CGMs to my patients regularly. This story and the events that inspired it are very disturbing to me. The failure of Dexcom to make every effort possible to inform users of the device networking failure in a timely manner verges on criminal negligence. Needless to say, heads should roll at Dexcom. I can well imagine that a class action suit encompassing all Dexcom 6 users could arise out of these negligent behaviors. Unbelievable... but true!
4
@Tim Graham MD
Yes, it sounds like Dexcom was negligent in more ways than one.
But before you encourage class action lawsuits, ask yourself if there are alternative products available. I don't have expertise in this area myself, but if there are no good alternatives you should consider whether enabling a few class action lawyers to buy bigger yachts, bankrupting Dexcom, will do your patients any good.
8
Tech should always have a backup! Signing up for the monitoring app should include an emergency contact field.
That emergency contact list should be constantly updating from the primary server to a backup server used only for this purpose that won’t overload.
Then, if the main server goes down and there’s an outage on the app, the contacts will stop being synced. That non-responsiveness should trigger a call to all the emergency contacts.
Similarly, if the app stops receiving updates for 15 minutes, it should be programmed to trigger an alarm.
7
As a software engineer I see many potential problems. And that means there are many more I don't see.
It sounds like the apps are always getting data for those they follow. There should be an option to alert if that data stream stops for more than a predetermined amount of time. And it must be initiated from the app, not an Internet based push.
I have yet to find a network that didn't occasionally have problems. And these devices are in homes, where network problems are even more common.
And this would address the service provider going down as well.
17
@Charlie
>There should be an option to alert if that data stream stops for more than a predetermined amount of time. And it must be initiated from the app, not an Internet based push.
There's an in-app option for that. I don't recall if it was enabled by default, but I have it set for 20 minutes which sadly is the minimum amount of time it will accept. I don't think it will alert any followers though because that relies on the Dexcom's servers.
1
@Gary Keith Yes, and Charlie addressed that. It should be a client-side function of the Follow app itself.
Make no mistake: that will cause a lot of alarms. But you can be equally sure that parents and caregivers would prefer that to being unaware that they're blind.
We do not ever trust such technology. Neither should you. Too fast to market, too little testing, zero quality assurance. A proper prick beats everything when testing BG levels.
2
@Dr. Mandrill Balanitis This is wrong. There is a huge difference between a CGM and finger sticks. A finger stick, unless you're doing them scores of times a day, provides a snapshot. A CGM shows trends. This is a huge difference in terms of bolusing for meals as well as warning of imminent highs and lows.
@Dr. Mandrill Balanitis I've had the disease for 40 years. Your opinion is underinformed and wrong on key facts.
Obviously manual blood glucose testing remains the gold standard. But you can't perform it 12 times an hour, 24 hours a day including when you're asleep. Only CGM can achieve that. When combined with a system that can suspend insulin delivery, there is zero question - zero - that it improves safety and QOL.
All CGMs have occasional unreliability. In my (very studied) opinion, Dexcom is the best of them.
And moreover, this is about reporting of monitoring to followers such as parents. On this, specifically, Dexcom was not aggressive enough and did fail their users. They're smart people. They'll fix it. But they need to do it fast.
1
Dexcom should do better, particularly in communicating problems with customers. But as a pediatric nurse diabetes educator and a person using Follow for her own family member, I can tell you that the tone of this article (e.g."..... learned just how risky that strategy can be") is misleading. Before this technology was available, options for "strategy" were limited to the lesser of 2 evils: deliberately ensure the child had an unhealthy, detrimentally-high sugar at bedtime in case it was going to drop, and/or get up in the middle of the night once or twice or more to poke child's finger for a blood sugar test for temporary peace of mind, knowing that it could still drop before morning. Dexcom currently has no rival in remote monitoring, tech that is only as good as your access to the internet, which itself is never guaranteed. I reserve the bulk of my concern for those who don't get to use a sensor at all because they're under-insured, can't afford the out of pocket costs, are denied coverage, or don't have insurance. Now, can we talk about access to affordable insulin?
35
I am waiting for my 1st one to arrive in the mail because I am now experiencing hypoglycemia unawareness. Maybe I should stick with the FreeStyle.
1
@Valerie heffron I would still HIGHLY recommend the Dexcom. My daughter never lost access to her data or her alarms. It was the ability for others to Follow that went down. The customizable alarms are life-changing in being able to ignore your BG unless the alarm sounds to notify you to take action because you're too high or too low.
17
@Valerie heffron
You say "stick with" Freestyle? So if you're currently using it you know that Freestyle doesn't even alarm to alert YOU when you're dropping or low.
5
Our recommendation: Stick (pun intended) with the old reliable One-Touch machines from Roche or a similar one from any long established firm. Newfangled things like that electronic body poking attachment are really in the beta-test phase with you as the unwitting guinea pig.
And with one simple, yet severe, breakdown of technology.. an otherwise beneficial health measuring device is rendered questionable now.
Dexcom should have built a system with sufficient redundancies and safeguards in it that this sort of thing never happens. They did not do so.
Dexcom will likely now never regain the level of trust and benefit their product initially had with patients.
That said.. as with many things medical.. the attention and focus of the immediate user is of paramount importance. Relying on 3rd party monitoring (such as parent of a child) via the internet and cloud technology is a dependency failure just waiting to happen.
That said.. new technology is like this.. prone to unexpected bugs and failures... so if you are an early adopter... know this going in and adjust appropriately to deal with something like this.
4
When I woke up Saturday morning to see that I had not received data since ~2am, I had a moment of alarm. For me, that alarm quickly subsided because, unlike the past 3 months, I happened to be sharing a hotel room with my college-aged T1D daughter and could check on her immediately.
The leadership of Dexcom should have felt that same panic, amplified by the number of children whose parents use this amazing device to sleep at night. We have a contingency plan to monitor blood glucose when we're not getting data. But we need to know that we're not getting data. The communications from Dexcom were slow, difficult to find, and inadequate in content. Technology will fail on occasion. Dexcom's communications should not.
17
I love, love, love Dexcom and I’m willing to cut them some slack for an unforeseen (massive) tech glitch. But what I can’t understand is this: the company has my email address. Why the heck did they not use it to alert me and other customers to the issue? Also, to keep this in perspective, the Dex kept transmitting BG data ( at least on my app) throughout even if it did fail on the Share function, which is what parents are understandably upset about.
17
Why does such a service be connected to the internet of things? Monitoring like this should be a loop between the monitor and an app, not filtered through a data collection service that provides no value to the end user.
10
@Jimal It is a loop between the monitor and the app. The monitor is either the Dexcom receiver (no wifi/internet), and/or the user's phone. If you use a phone, then it can also communicate the data to the cloud, which is then shared with the parent's app on their own phone. In the case of the child who was at 40 (extremely dangerously low), the child's own phone should have alarmed. However, my own 12 year old daughter does not always her her alarm, I imagine it's the same for others. So, parents also want to hear the alarm on their own phone, shared via the cloud. The problem here is, when the parent's phone app lost data from the cloud, the app on the phone did nothing to alert them to the fact. A presumably simple feature that should be added to the app.
14
That’s how it works for the person wearing the device. The G6 can connect to an insulin pump and the official dexcom app. They both use Bluetooth. This primary feature was not affected by the outage.
But there’s a secondary feature that allows others to “follow” from a distance. This uses a different app called “Follow” and goes through the Internet. This is the app affected by the outage.
2
Unfortunately, I think this is an important reminder to us as parents, that we can’t cede all control to technology. Diabetes is such an all-consuming disease (it must be in your mind 24/7/365) that we were all grateful for a device that could give us a much needed break. I, for one, will be setting my alarm each night to check that Dexcom is working.
As for Dexcom, if this happened once before, I am dismayed that they didn’t have the foresight to think that it could happen again. When this happened in 2018, they should’ve come up with a system to alert users immediately- perhaps like a diabetes AMBER alert. The fact that Dexcom’s only notification to its users was a Facebook post, shows a laziness and lack of accountability that is unacceptable for a company that provides a service that could mean the difference between life and death for its users.
24
@JGC There is a notification in the app with a loud audible alarm if there is a loss of data. It's enabled by default!
1
@Iain Yes, but that feature also failed as a result of the server crash
1
This looks like a classic case of tech incompetence. A developer for life safety-critical products needs to build in failure detection and alerting. The app should be communicating with both the server and the sensor, sending and receiving frequent readings and confirmation that the blood glucose level has been acknowledged by the server and the phone If the server stops responding, alarms should automatically go off at both the phone and the server.
Just wait until the shoddy development of autonomous vehicles puts thousands of two-ton monsters out there with amateurish software systems developed by tech bros whose mantra is still "move fast and break things".
21
I use the DexCom G6 + the Tandem pump. I bagged the entire iPhone-as-receiver concept after about 2 weeks when I realized that it lost contact with the sensor/transmitter much more easily than the DexCom receiver. On the receiver, if you set your child's alert sound to "attentive" the alarm will wake you up even if you're in another room on the same floor. No you, can't monitor your child via this manner while they're at school. However, my early years as a T1D in 1972 taught me a lot about self-reliance. No one could save my life but me.
12
@Lisa The G5 with receiver had much greater range. Anywhere in the house, in other rooms, upstairs, downstairs, etc. Line of sight range was well over 50 feet, which was great when my daughter was practicing or competing in gymnastics. G6 range is very disappointing, and no one mentioned this when they were touting the wonderful new technology.
1
@Lisa I have found that my daughter's iphone 6s has very good connectivity for about the first 2 months of transmitter life. For the last month of the transmitter, it's fairly bad, especially at night. We always use both her phone and the dexcom receiver at night, because often her phone will lose connectivity for several hours at a time, where the receiver will not lose it at all. And it doesn't even only happen when she's sleeping on the transmitter. It's a mystery to me.
2
@Joy Thompson
Bluetooth is notorious for being glitchy and unreliable in any environment where there is RF noise in the vicinity. And there can be so much RF pollution in a modern home where there are many different wireless devices working and interacting... that Bluetooth does get interfered with.
That said.. it is not something that should glitch out for hours at a time.. but rather seconds at a time.. and hence not an interference factor for the Dexcom devices.
4
CEOs like Dexcom's always fall back on that old saw: Hardware eventually breaks, Software eventually works.
IOW, it's not my fault.
But without spending a minute investigating the particular circumstances of this outage, I can guarantee that it can be traced back to Dexcom's strategy of deliberately keeping its Dexcom Follow app off the cloud.
Yes, migrating to the cloud has its own risks, but they can be managed. This was no doubt a short-sighted economic decision, which has proven to now have disasterous consequences.
You reap what you sow.
4
I use the G6 also and it hasn't been working for the last 24 hours for me. I didn't have an outage over the weekend. I haven't received an email from the company. I use the Tandem pump and an iPhone to monitor and have found that it really isn't consistently reliable.
1
My T1 diabetes husband relies on his Dexcom, as do I, to monitor blood glucose levels. I feel confident that Dexcom will take the necessary steps to fix this glitch.
In my home we’re cognizant that technology fails: the cable stops working; Amazon’s Alexa doesn’t respond correctly; the warning light on the car dashboard is just an electrical short. This is why, as my husband’s mother did more than 50 years ago, I wake at least once a night to check if my husband exhibits any signs of hypoglycemia. My late mother in law had no electronic blood glucose monitor. She DID have a ‘professional’ loving layman’s ability to recognize and treat her son’s night hypoglycemia.
I’ve worked in the ED and in many community clinics. A patient’s constitution—are they ill-appearing, lethargical, disheveled?—are oftentimes a better predictor of illness than the ‘latest-and-greatest’ diagnostic tool. Parents who live with children with T1 diabetes should demand improved service from Dexcom. Patents might also take this technology glitch as a starting point to develop ‘non’ technological patterns to monitor a child’s blood glucose that will serve them well when the technology is online, and when the online systems fail.
9
This is 100% inexcusable because it's preventable on several levels, if Dexcom were to use common prevention/detection/alerting practices used in nearly every IT service center for decades now.
11
My five year old daughter use the Dexcom G6 and we use it to monitor her blood sugar level every minute of the day. When she is at home with us and when she is at school this device provides us with the information we need to ensure she is safe and helps us regulate her blood sugar accordingly.
I’m going to agree with every parent who has expressed concern here and on Facebook about Dexcom’s lack of communications and oversight during this outage. Last count I saw over 5,700 comments, most of which were from very upset customers.
What has not been reported and is by far the most serious issue of concern is what caused the servers to become “overloaded”. I work in technology and anyone else who runs a web based system will tell you that any overload issue originate with someone sending data to the server or requesting server to the data in an effort to either bring the system down or to try and penetrate the server to access whatever data it holds. In this case, we are talking about the medical data of tens of thousands of customers with Type 1 diabetes who rely on this service. Furthermore, many of these patients are minors, thereby exposing personal identifiable information of children as young as 1-2 years of age. My daughter started using Dexcom products / services at the age of three.
Continued...
22
The CEO’s statement that he “feels bad for them” and “I feel bad for these parents” shows how little he understands or empathizes with his customers and quite frankly how serious of a problem this actually is. As a publicly traded company with $1.032 Billion in revenue (2018) and market capitalization of $20.93 Billion dollars this is unacceptable. The FDA should be called in to investigate this outage and provide a detailed report on the cause of the issue and a full accounting of how the issue was resolved and how it will be prevented moving forward.
This is critical because someone literally could have died. The likelihood is that someones daughter or son under the age of 18 could have fallen victim to this outage. Until Dexcom and it's CEO recognize this fact and the seriousness of the situtation we can't have any confidence that this issue will be addressed appropriately.
Beyond parents who are upset, the Board of Directors, and Investors should be equally concerned. Until Dexcom can show that it truly understands the severity of this outage the company can and will be susceptible and even responsible for the lives it holds in its hands when its services go offline.
This could have been a much more serious situation for any family dependent of Dexcom and it's Follow App.
15
@Juan
The CEO is making insensitive remarks, and appears dismissive.
Said CEO should be terminated, and replaced with someone with some actual empathy and concern for patients.
4
The Dexcom app and Follow service STILL aren't working, despite the company's Facebook posts.
5
I agree with “all the above” but I don’t see anyone else expressing my particular objection to how Dexcom has handled this, so here’s my take.
Dexcom needs to understand and accept the fact that there really are some of us—I’m one of them— who will ABSOLUTELY POSITIVELY NEVER NEVER EVER SIGN UP FOR FACEBOOK. My reasons are irrelevant and unrelated to Dexcom and I’ll never apologize nor should I have to. But for Dexcom ONLY to alert users to this problem by putting something on their corporate Facebook page borders on terminally irresponsible!
And, by the way, I also REALLY REALLY agree with the chap who pointed out Dexcom’s dismal reordering customer no-service department! What a joke! I finally gave up entirely and started buying sensors from CCS Medical. In nearly a year with CCS, zero problems! That’s zero.nada.zilch.zip.none.Not a single problem.
Dexcom sensors are a lifesaver for me, but they got a lot of room for improvement!
45
One would have thought that Dexcom would have had something in place to alert patients if their system failed.
19
To: Dexcom CTO and CIO and COO:
Q1. Have you not heard of “fail soft” designs?
Q2. Have you not heard of “fail over “ design?
Q3. Have you not heard of “mirrored server” design?
If the answer to the above questions is yes, then why on earth did this outage occur?
If your design did not include any of the above, then I suggest you start circulating your CV(resumé) because you should not be in your current position.
23
@Bob W
It could have been a Denial of Service attack from the description of 'overloaded servers'. That should be more chilling than design issues. I'm surprised no one has mentioned it.
2
@Glenda see Juan from Miami's first comment. He mentions penetration or DoS as motivation.
Dexcom needs to put IMMEDIATE resource behind an alerting system that functions outside of the Follow app itself -- exactly like an Amber Alert, as one commenter noted.
They have our email addresses. It's not that hard. If my son's public school system, working on antiquated technology, can manage to send out alerts to all parents' email addresses, then a tech company certainly can.
12
My Follow app also went down but since I use a Tandem pump and iPhone to receive readings, I was not otherwise impacted. That is, I received all of my readings and alarms. I'm sorry for those who were impacted. The Dexcom G6 is an amazing technology that I depend on every minute of the day. Dexcom could have done a much better job informing users of workarounds to get through the outage.
8
I work in the pharmaceutical industry, and for high-risk drugs (those with major possible side-effects or high potential for abuse or diversion) we are required to have a robust risk mitigation plan. The FDA should require this of device companies as well - such as those for continuous glucose monitoring, or implantable defibrillators or pacemakers, since the failure or non-performance of these devices is a life-threatening issue. In this case, the failure was not with the device, but the critical IT infrastructure which supports it. Shame on them! An immediate alert should have been sent to all customers/subscribers as soon as a system disruption was identified, so that manual monitoring could be done. At this point, no one has died, but hypoglycemia can also cause irreparable brain injury. Where is the FDA on this type of event?
30
The CEO's comments are a joke. The fact that a billion+ dollar medical device company that millions of people rely on failed so miserably at basic, timely and honest communication is an absolute outrage. The fact that its servers were overloaded and that's the cause of 48 hours of down time is frightening.
38
This was way more than the follow app! We had no access to my daughter numbers nor did she! However the biggest issue and concern was the TOTAL lack of communication and notification by Dexcom! Yes we as parents know what do for a back up plan, but we should have been informed right away that there was an issue so we knew to put those plans into place! A post on Facebook many many hours after the problem is NOT notification! The was this was handled is totally unacceptable!
18
I work as a architect in software development and IT deployment/monitoring ... its ridiculous that they didnt have proper monitoring or an automated failover plan in place. Also, they should be supporting flagship phones on day one (such as Samaung S10 and iPhone 11) ... they can develop software in emulators like the rest of us and be ready before the phone comes out (and fast track approve it via FDA)
I pay for Dexcom and it's expensive and I expect it to work as advertised. I could develop a better IT solution as an individual than Dexcom as a company can do. They need to take the money on how well the stock and company is doing and invest it in better IT and software engineering instead of giving it back to their investors and executives. If they keep this track up someone else will take the CGM market from them.
47
@Xues As a regulatory compliance manager - personal and professional user, I am shocked at 1. the lack of amber alert to the issue due to the Public Health Threat and 2. as you said - no back up fail-safe risk controlled mitigation plan back-up?!!!!!!!!!!!!!!!! To hear if from you, and IT sw architect confirmed my worst nightmares in both the response and lack of plan.
13
@Xues They are sadly behind in getting the app to work on android phones, new ones!!
2
The outage affected a lot more than the Follow app. If for whatever reason you needed to log in to the app, you received the error message and this has happened in the past since it was already a google suggestion when I tried to look what the error could be. They have our emails and phone numbers of regular updates by email/text would be much better rather than we will put it on Facebook.
This is not the only problem though. Their sensors are advertised as items that last 10 days which is hardly the case. Since June I had to call at least 5 times to get replacements because my sensor stopped earlier than it should have. It's easier to mail patients a replacement sensor than slow down their growth and see how to really get a product that works as advertised.
8
@PK you hit on another great failing of Dexcom, reordering new supplies. Every time I am due to reorder, it is a painful, obtuse, foreign country customer support staff.
You would think they could setup a reorder process at least as smooth as my drug provider, OptumRx.
3
This is twitter journalism and poorly researched. You'd think from the article that Type 1 diabetes is only for kids, but of course this also impacts many people over 11. To be fair, the article should also highlight the danger of parents and patients who rely too heavily on technology which is not guaranteed to alarm. You agree to that when you use the technology and even though everyone clicks through the legalese, that part is important. Type 1 Diabetes is life or death every day, and Dexcom provides tremendous technology for people with diabetes, but the bottom line is that the user agreements tell you not to RELY on it for a reason. It is not perfect, but it is a vast improvement over everything to date. While many patients ration insulin and test strips, those that can want to use the latest technology, but we have to understand also that failures happen and we can't be complacent.
Obviously we should all expect Dexcom to improve, especially on the customer service and notification aspect, but they do not advertise 100% uptime or even close. Parents are increasingly making the choice to run glucose levels lower than before, which has potential benefits but also risks, as is very evident in this case. There is a place here for personal responsibility too.
12
@Anne
The point is that no notification was sent. I see no commenters that are upset that the system was not operational. They are upset that there was no notification that the system was not functioning. They all seem to understand how to perform glucose monitoring, and would have been up to the task of doing so if they had known there was an outage.
It's the not being informed, not the disruption in service. They all understand that 'failures happen.'
What is the point of using an app if a person has to do the same monitoring that they would have done without the app? That's what you seem to be saying....that these parents should have been up every two hours at night checking their child's glucose levels.
What sense does that make?
26
@Anne This is a medical device, approved by the FDA. It is very expensive. It should be trivial for the follow app to notice that it is not getting updates, and therefore audibly alarm, just as it does for highs, lows, lows of signal, etc. Actually, it could alarm just because of using airplane mode, or otherwise losing wifi/internet access. This not rocket science, and parents justifiably would expect this feature. It's nearly 2020, and apparently the follow capability has been out since 2014, and while I love the dexcom tech in generally, there really is no excuse for this gap. None at all.
5
Some members of the T1D community are taking this issue into their own hands - the Nightscout Foundation has put out a call for programmers to create a Dexcom-independent, open source app that regularly tests Dexcom Share functionality. Nightscout is also calling for this app to immediately Tweet/post if Share should ever go down again.
When technology fails (or doesn't move fast enough), it's amazing to see what people living with T1D or their loved ones will do to solve issues for themselves, without waiting for corporations' frustratingly slow responses.
56
@M So thankful for the Nightscout Foundation and for the Loop community. Even though we were home and my son is old enough to self-monitor, I could still get a sense of what was going with him because of Nightscout.
5
Dexcom needs to do some hard thinking. Two key things to think about are;
1. How do we prevent this from ever happening again.
2. According to Murphy, this will happen again. What do we do to mitigate effects on our customers?
And then they need to publish on their website their contingency plans so everyone can know what to expect. Then customers can develop their own contingency plans.
11
As a parent of a child with Type 1 diabetes...we understand that technology can fail, and virtually all parents who use Dexcom have backups in place.
But I think it's important for the world to know what a disaster this was. The Dexcom servers were down for 48 hours. An outage of that length is unheard of in today's world for any service -- much less an FDA regulated medical device. Dexcom provided NO notice of any kind for nine hours, then issued just a two-line message on their Facebook page. For over 24 hours, there was no notice on the company's website.
This was a complete and total leadership failure.
FDA and Dexcom Board - please pay attention. Our children's lives are at stake.
94
Therefore, to keep your child “safe” you need a Facebook account?
2
@Peter Do they have the capability to send an alert to those phones about the power outages? I am thinking of some totally separate system from the main system, perhaps powered by generators.
Even so, as bad as this was, I am having a hard time thinking of any system for this that is foolproof.
As a parent of a child with type 1 diabetes, who has relied on dexcom to keep my child alive at night for the past decade or more, this is unexcusable. There was no notification or explanation that there was a problem, so no one knew what to do. If parents had known *before bed* (or even with a middle-of-the-night alarm) that they should go to "plan b" (i.e., waking up every few hours to check their child blood sugar), that would have helped! Holiday weekends are the worst time for this sort of thing to happen, as everyone's blood sugar is all over the place due to a different routine.
32
Why on earth is this data being processed on corporate servers? This is something that should be processed on people’s smartphones and home computers. Corporate should be the backup.
11
@Liz It HAS to be processed on the corporate servers. How else can they maximize their profits? The company would lose big bucks if subscription fees weren't necessary. Thats why the devices don't communicate directly with smartphones.
@Liz It has to go to some server somewhere, because this has nothing to do with what the patient themself sees - that was unaffected. It's about sharing - the idea is that the data can be monitored from anywhere - i.e., a parent can see it while their diabetic child is at school or at camp.
What server should it be? Your ISP, which will likely be less reliable and who will sell it to the highest bidder?
It has to be secure and so it has to be Dexcom's servers. Who else is it going to be?
@anae That's uninformed. There are no subscription fees.
“ In an interview, Kevin Sayer, Dexcom’s chief executive, said he regretted that his company let its users down and did not alert them to the outage sooner. “I feel bad for them and I understand their disappointment,” he said.”
How on earth can this company NOT send out immediate alerts to their customers. This is a matter of life and death. It’s possible to both work on fixing the problem and notify customers at the same time. Shameful.
71
@Ron
It's called "Criminal Negligence."
We need prosecutors to bring criminal charges against the corporate officers now.
10
Kevin Sayer, Dexcom's Chief Executive, feels bad for parents and understands their disappointment.
That's it?
That is not taking ownership of a the product or service. He should have said, "I'm sorry. Next time we have an outage, you will receive texts immediately. It is the least we can do."
Does he not say those simple words because the lawyers are telling him not to? Where is his humanity? Where is taking full responsibility?
47
The 24/7 need for reliability of this system is a matter of life and death.
And Dexcom now reports that the reason for this failure is that their server unexpectedly became overloaded.
Then Dexcom should not be running its own server. Where is the contingency planning?
Are they kidding?
49
Just wondering if the app could detect outages and emit an alarm “Uh oh, not getting a signal!” (that’s how I would design it!)
15
@Flânuese it does have the capability to alert when there's no data. Unfortunately, that feature was a part of the overall crash, too, further compounding the issue.
12
@Flânuese it is supposed to, but it did not!
6
@Flânuese My understanding is that the "no signal/no data" means that the receiver (phone) is not getting data from the transmitter. The parent's follow app not getting data from the cloud would be a different alarm. That doesn't exist - at least, if I put my phone into airplane mode, the follow app doesn't alarm that I've noticed.
1
What is most disappointing is that the app could easily deliver urgent notifications that service has gone out in instances such as this. My father uses the dexcom 6 and it’s ability to rapidly deliver low, high and no data notifications is one of its best features.
2
@Mara that's a reasonable expectation, but it gets notifications from the server. If you get a notification every time you phone can't connect to the server, that presents a lot of different scenarios, like you are disconnected from Internet/out of cell range. So maybe not exactly easily, but hopefully coming up with an option that works when there are server outages will be at the top of their changes moving forward!
2
Anahad, thank you for shining a light on this vitally important story.
Parents understand that tech occasionally fails; but the tech company’s communication of when that happens shouldn’t. We hope Dexcom have heard and understand that now.
Dexcom said they’ll do better, and they need to. Their customers shouldn’t be left in the dark, particularly when many of those customers are parents providing primary care to their children with a life threatening disease.
11
I think that Dr Coleman-Priscos' comment that more Type 1 diabetic children are dying in their sleep than surviving a nights sleep is extreme and I am disappointed that a professor would say so. Although it does reflect the near constant panic that Type 1 parents go through and I have no idea what our young children think each night when they go to sleep. However, there would be a million children deaths from T1 each year if it were true. I am so grateful that I don't live in the time pre insulin when this was true.
Although I admit to having this fear every night my T1 son went to bed.
7
@Elizabeth I didn't say that and the statement has been removed. I think the author combined a few of my points together in error. I appreciate what you are saying.
8
With all due respect to Dr. Coleman-Prisco, I note she is a liberal arts professor, not a medical professional. I don’t mean to detract from her worthy comment.
However, I’m not sure the journalist should have referred to her as Dr. for this particular article because to some readers it could suggest she is a medical professional.
5
I am the parent of an 11yo boy with T1D, and we rely on Dexcom Follow to manage his diabetes remotely. It was certainly inconvenient that we had no share data, especially because my son was sleeping at a cousin’s house Friday night. Fortunately his blood sugar was fine and we managed without share data for the weekend. The outage is a good reminder that technology is a great tool that sometimes fails. We need to know how to manage without it, and even more importantly, our son needs to know how to manage without it.
11
I am also the parent of a child with T1D. This outage would only have been a nuisance if Dexcom had simply notified those of us using the Follow feature that we should revert to Plan B. Without alerts, one must set alarms to wake and check on one's child throughout the night, or run the child at a higher glucose level to prevent nighttime hypoglycemia. Most of the outrage about this weekend's incident is that we had no warning or indication that our technology was not functioning normally.
22
@Karen Much worse than the outage itself was Dexcom’s total failure to communicate. It’s baffling. They lost a ton of trust with customers
12
@Fred
They did communicate the outage. On Facebook!
Do they know for sure that everyone who uses their devices is on Facebook and follows them?
5