When Diabetes Technology Fails

It was New Year's Eve, but the celebratory spirit wasn't the only thing on the mind for some families using continuous glucose monitors (CGMs). In fact, it was quite the opposite when a Dexcom server crashed, leaving many in our Diabetes Community unable to see their CGM data stream or view shared data for remote monitoring.

That was the case for Scott E. Kelly and his family in New York, who felt blindsided when the outage suddenly hit without warning from the California CGM manufacturer. Although Dexcom was working diligently over the holiday hours to fix the issue, the company unfortunately didn't communicate that to users out in the field.

Kelly's 10-year-old daughter was diagnosed the day after her 5th birthday and has been using a Dexcom CGM with data monitoring on the phone app for several years now, with "amazingly wonderful" results, he says. But he sure wasn't happy with how everything played out over New Year's Eve.

"I work overnight, and my wife works real-people hours. I always check (our daughter's) sugar overnight to prevent dangerous lows while they're sleeping," he says. "The night of the outage, I had the dreaded 'No Data' signal and just figured maybe her CGM or iPhone was dead, so I called to wake up my wife to check on her. It wasn’t until late the following day that I happened to catch a post by Dexcom on Facebook about an outage."

The outage occurred on Monday, Dec. 31, in the late afternoon, impacting the SHARE servers as well as those using the Clarity platform to view and share data. Dexcom resolved the issue within a day. Here's what Dexcom posted on social media about this issue mid-day on Jan. 1:

"Late yesterday we became aware of an issue with our DNS provider that has affected the Dexcom SHARE functionality as well as Dexcom.com for some customers. We fully appreciate the importance of the SHARE feature and have been working around the clock to fix the problem. Thank you for your continued patience as we work to resolve the issue."

There's no word on how many Dexcom users were affected, but it spiraled within the Diabetes Online Community as people rushed to ask what was happening and if others knew about any issues. What many were most frustrated about was the lack of communication from Dexcom, in that there was no customer-based notification about the issue or any direct contact. Prior to the outage, the last social media post from the company was from Friday, Dec. 28 asking how folks planned to celebrate New Year's, but there was nothing more posted until the late morning/early afternoon hours on Tuesday, Jan. 1, finally acknowledging the issue.

Reassurance is Key

Thankfully, nothing bad happened with Scott Kelly's family, but the potential did exist for some kind of serious issue to arise -- given that this D-Dad and Mom depend so heavily on the stream of CGM data to assure their daughter's safety.

"Technology can fail, but in 2019, on a night when everyone is out and about celebrating, it would be reassuring for patients and their families who rely on something as important as a CGM to know that when it does, the provider will reach out IMMEDIATELY and notify their users that there’s a potentially life threatening failure so they could prepare and switch to other means of watching them," Scott Kelly says.

Likewise, D-Mom Wendy Rose in Arizona was also most upset about the lack of information about what was happening.  While her teen T1D daughter was away at a sleepover on New Year's Eve, Wendy says the Dexcom was alerting pretty frequently, but she couldn't tell if it was trying to notify her of a BG or lost connection issue.

"Since Dexcom didn't communicate the problem, I didn't know what was going on," she said. "I had a device blaring alarms at me with my daughter asleep in a home 45 minutes away. Since it didn't stop alerting, I had to assume she was not responding to the alarms on her end, and she wasn't responding to my attempts to contact her -- through her phone or via social media apps. The last I spoke with her she was High around 10 p.m. and had given herself a huge correction bolus. I was able to see that she was at 118 with double-down arrows about 90 minutes later. I texted her at that point, then saw she was 98 with a straight arrow when she texted back to say she had eaten 30 carbs. I saw there was a server issue before falling asleep, but figured it would be resolved when I woke up to take a peek an hour or so later. Then the alerts started."

As a registered nurse professionally, Wendy continues: "You can bet my RN brain went to the worst place imaginable -- my 15-year-old daughter was potentially unresponsive... or worse. Call me helicoptery, I don't care. I knew what the previous four to five hours entailed; I knew she required temp basal decreases the two previous nights (and had) lowered her overnight basal again before dropping her off)... I knew she had started her period less than 72 hours prior and her Lows are even less predictable and harder to bring up this time of month."

"I do feel companies have a responsibility to alert users when there's an issue, particularly one as widespread as this was. That being said, I think threatening to sue over a night of inconvenience is a little extreme -- but you can bet I'd hold them accountable for their lack of communication had our night turned into the nightmare I feared."

Should Dexcom have reached out immediately and directly to its customer base? Or at least made a bigger effort to flag the issue on various social media channels? Probably so. But the fact that they were working feverishly into the evening hours, overnight and on New Year's Day should be something to applaud. They certainly were not ignoring the issue.

Still, some users point out that the lack of communication made the issue more troublesome. In online posts, some folks suggested something as simple as adding a line of code in the mobile app allowing users to get a message if there's a server problem. Then, at least, they'd be informed and could adjust accordingly.

On Being Grateful, and Prepared

In fact, as D-Mom Wendy Rose references, some people were so up in arms about this that they were talking lawsuits. Whoa... Time to take a step back for a reality check.

First off, even having a tool to view our real-time glucose data is very new (about 10 years now), and something to be extremely grateful for. So many of us remember what it was like "flying blind" with only fingersticks to guide us. It's even newer (and very exciting) that BG data can now be beamed to a cell phone, which some T1D veterans might even consider a treat.

Is it possible that we can no longer manage a few hours or even a day or two without this advanced technology that btw is certainly not yet accessible to all who need or want it? While outages are unfortunate and inconvenient, let's please get a grip and remember how imperfect technology is. All kinds of devices -- especially those that rely on wireless data streams -- have the potential to "go down" at some point in time.

Personally, though I use and love my CGM, I always have in the back of my mind that it may not work at some point and I'd need to fall back on more "manual" diabetes control. That was true back when I used an insulin pump, too, before transitioning back to insulin pens in order to be untethered from another device on my body. I've experienced multitudes of equipment failures since my diagnosis as a small child in the mid-80s. Whether it was a broken meter, bad pump site, "dead" insulin that worked like ice water, or a CGM sensor or platform not being up to par. I basically live with the diabetes "what if" possibility constantly -- which means carrying lots of backups and being aware of what to do if forced to go without one of my devices.

I honestly think that expressing rage at Dexcom is the wrong way to go, and I'm not the only one.

For example, D-Mom Kirsten Nelson in Colorado (whose 18-year-old daughter was diagnosed seven years ago) says, "As a parent of a T1D who was blessed to be diagnosed in the midst of all these technology advances, I feel saddened by the reactions. We must never become so reliant on technology that we forget how to care for diabetes without it. Technology will never be foolproof or failure free, and rather than casting blame when it fails, we need to remember to maintain back ups and expect that failures will happen."

What may be important for our D-Community to demand is some kind of standard policy outlining how companies like Dexcom (and all med-tech providers) will handle outages -- in particular on the communications front. Maybe all new customers should get a clear notification that, "If an outage occurs, XXXX will happen."

Meanwhile, as people and parents managing T1D on a daily basis, we must be able to go back to the basics at a moment's notice -- the "best we can do" care that existed long before mobile apps, smartphones, insulin pumps, and now CGMs. That may not be preferred, but it's a reality we live with every single day.

Seriously, everyone living with diabetes needs to have the ability to react and adjust quickly when a curve ball comes. If you feel unable to function without a particular device, ask yourself if it may be time to revisit "diabetes basic training."

In short, we can fault a manufacturer for not having safeguards in place or not enacting policy to notify customers of service or product issues. That's fair. But if we're relying on that as a guaranteed safety net (especially for something like CGM that isn't truly life-critical like a pacemaker), then it's on us to also be prepared for inevitable technology hiccups.

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Originally published on DiabetesMine