Continuous glucose monitoring (CGM) technology can be a very useful tool and a safety net for people living with diabetes. The device allows users to have an almost constant stream of glucose level data, and alarms can help prevent severe high or low blood glucose levels, which can be life-threatening when left untreated.
The Dexcom CGM system also has a Share and Follow feature, which allows for data transmission to “followers” via the Dexcom Follow app. In the event of a blood sugar emergency, this can serve as an additional safety feature, as others can be notified if a patient is experiencing severely out-of-range blood glucose levels. In particular, parents and guardians of children and teens with diabetes often rely on the technology to monitor blood glucose levels remotely, allowing them to have oversight and peace of mind when their child is at school or extracurricular events.
Unfortunately, sometimes, technological glitches occur that can affect a large proportion of users. For example, we saw this on last New Year’s Eve, when many were affected by a Share outage, prompting the question, Are We Too Reliant on Technology?
Last weekend, another widespread technical issue with the Dexcom Follow app services arose, which impacted the ability of followers to receive data and alerts. This particular outage was so persistent that it created an outrage in the online diabetes community, triggering an array of reports from major news agencies, including The Wall Street Journal and the New York Times.
We asked the diabetes online community if they were affected by this glitch and what their thoughts were on the gravity of the issue. Here are some highlights:
“We were very thankful that my son’s (age 20) phone was still alarming and that he still lives at home. He is a very deep sleeper and does not awake to the alarms and is hypo-unaware. Thankfully I could hear the alarms from my room and was able to treat two lows Sunday morning while the system was down. I hate to even think what would have happened if the system had been entirely down or if he was living by himself.”
” I felt extra grateful for those who created alternative platforms, like Spike, XDrip and Nightscout. My family was unaffected due to these options. I spent some time giving tips to others who were frantically trying to find options due to their dependence on the Dexcom servers. It would be amazing if more people were aware of all the choices.”
“I was terrified that it wasn’t gonna come back in before she went to school. She’s always been really good at monitoring her sugar, but now that she’s into the teen years, she’s getting teen spaciness, plus they have so much work to do at school that she often forgets to look at her CGM until she’s too low or too high. There’s a great school nurse who monitors her sugar, and I monitor it from work. Without us being able to monitor it it could be scary. Especially when she’s playing basketball or in the high school building where there’s not great reception for her phone even on the Wi-Fi. I felt pretty angry at Dexcom for not being more on top of it, and also for not letting us know what was going on. I think their techs didn’t even know what was going on. When I called I got a really nice tech who called me back within half an hour or so, but had no idea what was going on. Very annoying, and could potentially be very dangerous!”
“I was annoyed that they didn’t address it until HOURS after people complained. My son was home with us the entire time and we homeschool, so I didn’t have that to interfere. If he had been elsewhere, I can see it being a huge problem with no warning, because he is only 8 and I still help manage his care with access to follow when he is with my friend. I’m glad that it wasn’t a particularly bad night for us thankfully, [but] I wouldn’t have gotten any alerts the initial night it went out. It was annoying over the next few days not knowing when it would come back BUT we still had Dexcom to rely on. So yes, annoying and frustrating, but my real issue is with how Dexcom handled the issue.”
“This speaks to the profound impact that medical data sharing has had on the diabetes world (and no doubt other disorders with comparable technologies). My take is that “when” many of those impacted began to adopt or embrace these technologies has a great impact on how the sudden loss of those services were interpreted or felt. Without question, parents and supporters of adults with type 1 bore a huge brunt. And prior diabetes experiences further impacted the way this loss was perceived (history of rapid shifts and/or medical consequences of out of control values at any age).”
Yet, others had a different perspective:
“I think the only big problem I see is Dexcom not alerting people immediately when it went down by phone and email and instead posting on Facebook etc. I can understand it is very concerning to assume Dexcom was reading when it actually wasn’t. I also agree communication seemed horrible… However, from there I have lots of opinions. First, at least the user still had readings. I get many are super young, but couldn’t a baby monitor be used to hear alarms? Back-up plans are never convenient and suck but they’re the reality of type 1 diabetes. As someone who went years without a CGM, part of me was shocked how the articles made it sound like their kid was going to have a coma because of this. Then again, I myself recognize I have become attached to Dexcom over the years. But in all honesty, it’s such a privilege to have and most type 1s around the world don’t have it, and then some other CGMs don’t even have a follow option. So, all in all, I think it came across the wrong way. I understand the frustration given many parents have had Dexcom since diagnosis and aren’t used to having to do things differently. I don’t feel this had a place in mainstream media though.”
“I felt extra grateful we still manage only with syringes paper and pen. Tech change and communication break down is not something I ever want to have to deal with. This just makes me feel more strongly against us (our family) using CGM, pumps, apps…”
” Things go wrong. The share outage is the same as if your prescription didn’t go through, you ran out of sensors, your child is at camp with no upload capability, the new insurance doesn’t cover Dexcom, etc. You need to be prepared. To not prepare is to prepare to fail and too many people were not prepared.”
Dexcom first acknowledged the issue on the morning of November 30, 2019. For several days, the outage persisted, as the company was unable to identify and mitigate the underlying problem quickly.
The company relayed the following statement on December 2, 2019, concerning their ongoing troubleshooting and mitigation efforts:
“We are still investigating official root cause. We did not release any updates or changes to cause this issue, further complicating our investigation. However, we have determined that a server overload occurred due to an unexpected system issue that generated a massive backlog, which our system was unable to sufficiently handle. There continues to be a 24/7 cross functional effort with our partners at Microsoft to address the problem. Restoring Dexcom Follow is our number one priority and we have teams throughout the company working to get this feature back up and running. If you are a Dexcom user impacted by this outage, we advise you to monitor our Facebook page and website for the latest updates. This is an unfortunate but isolated event for Dexcom, and it has revealed some areas for improvement, both with our system and in how we communicate with our users. Once we have solved the issue immediately at hand, we will follow our standard assessment procedure to learn from what happened and help prevent issues like this from happening again. Additionally, we are committed to creating a more optimal customer communication experience moving forward.”
In the late evening of December 2, 2019, Dexcom reported that the technology had been restored to “near normal performance” for most users. However, it now appears that there are still ongoing glitches with some systems, in particular for Android Follow users, as well as some reports of issues with app login.
Stay tuned for additional updates or visit the Dexcom Facebook page for the latest announcements.
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Were you affected by this technical problem? Did you feel this significantly impacted your or your loved one’s daily life with diabetes? Please share your thoughts in the comments below.
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