“It’s kind of like walking blindfolded — that’s what it’s like to manage diabetes without a CGM,” says 31-year-old Keary, owner of the website Grace & Salt, and a spokesperson for the maker of the CGM that she uses, a Dexcom G6. Using Dexcom’s Follow app, Keary and her husband keep tabs on both mother and child. For the Cheneys, CGMs offer “a huge sense of security and peace of mind, just knowing that I could catch something before it became too dangerous,” she adds. That’s why when the technology behind CGMs fails, it can be scary. One such failure of Dexcom’s Follow app happened on Thanksgiving weekend of 2019. In a Facebook video message, Kevin Sayer, the chairman, president, and CEO of Dexcom, called the outage “unprecedented.” RELATED: FDA Approves First Implantable CGM for Type 1 and Type 2 Diabetes
How CGMs Work to Help People With Diabetes Manage Blood Sugar
CGMs use a tiny sensor that’s thinner than a needle and around ½ an inch long inserted under the skin to measure glucose levels in the fluid between cells, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). They return the data to a receiver or smart device app via a transmitter that is connected to the sensor. CGMs help people with diabetes, most often those with type 1, understand how things like food, exercise, stress, and sleep affect blood sugar. Ultimately, CGMs help people with diabetes prevent risky blood sugar swings before they happen. As reported in an article published December 2, 2019, in The New York Times, without immediate alerts to warn caregivers of their loved ones’ changing blood sugar levels, some awoke on the morning of the Dexcom outage, Saturday, November 30, to find out children had become hypoglycemic (having low blood sugar) while sleeping. Many more were shaken over what could have happened, and experienced partially disrupted service for several days afterward. Dexcom declined to disclose how many people use their Follow app but said the outage affected a “large portion” of users. “Parents were very frustrated that they could not see their children’s numbers,” says Carla Cox, PhD, a certified diabetes educator in Missoula, Montana. Sayer says the outage happened when new components to the Follow platform failed during a move to a new cloud service provider. The outage affected “followers” who rely on cloud service and a Wi-Fi or cellphone connection to get data from a “sharer’s” CGM. Because the Cheneys were all together visiting family, their workaround was to check each other’s phone apps directly. The monitor uses Bluetooth to transmit data directly to the CGM user’s phone, so the sharers were still able to monitor their own glucose levels and receive alerts. Dr. Cox, who also is registered dietitian and spokesperson for the Association of Diabetes Care and Education Specialists, says the parents she was in touch with took a similar approach. If their children weren’t with them, the parents called them for their glucose numbers. “I did not have any parents that were overly mad, just frustrated,” says Cox. RELATED: The 14 Best Apps for Managing Diabetes
What to Do if Your CGM Service Fails in Any Way
The outage did illustrate the need to be prepared for any kind of interruption of continuous glucose monitoring, says Cox. “Everyone needs a backup plan. CGM is amazing and has changed so much about diabetes management. However, technology — even with many safeguards — can fail,” explains Cox. Whether it’s due to a platform service outage, spotty internet or Wi-Fi service, an expired sensor, a failing transmitter battery, or lost equipment, interruptions can and do happen to continuous glucose monitoring. Cox, Cheney, and others shared five tips for creating a backup plan for keeping track of your glucose levels.
1. Be Ready to Get Back to the Basics
“Although we rely on the great data from CGM, using a glucose monitor and finger stick glucose testing should always be available,” says Cox. According to the Diabetes Teaching Center at the University of California in San Francisco, the traditional finger-stick method involves pricking one finger with a lancet to draw a drop of blood, placing the drop of blood on a disposable test strip, and then inserting the strip into a portable glucose monitor or meter, which analyzes the blood drop and then reports the blood sugar reading. Donna Duncan, an SEO consultant in Haverford, Pennsylvania, with type 1 diabetes, takes this back-to-basics approach. She has been using a Medtronic 670g insulin pump with a Guardian Sensor CGM for the past 10 years. Yet, she says, “If I am unable to use the insulin pump for any reason, I revert back to injections. I don’t need to do anything different or special if I don’t have access to a functioning [CGM] sensor because I back it up using finger sticks and a blood glucose monitor anyway. The latter’s readings are more reliable.” The NIDDK Health Information Center recommends that you do a finger-stick test twice daily to check the accuracy of your CGM. An interruption in CGM service is not the only reason for mastering this backup method. It can also come in handy if the way you feel does not match up to the glucose reading, says Cox. “For example, if you are feeling sweaty and have a rapid heart rate (potential signs of hypoglycemia) and your CGM says 110 mg/dL [milligrams per deciliter], double-check it then also check it with a finger stick.” “I always recommend people have spare blood glucose testers stashed around, like in their car and office, and at home for those scenarios,” says Sarah Sato, a Superior, Colorado–based nurse practitioner and certified diabetes educator who has type 1 diabetes and relies on the Freestyle Libre system for continuous glucose monitoring. RELATED: Marathoner With Type 1 Diabetes Shares How a CGM Helps Keep Her Blood Glucose Controlled
2. Check Equipment and Supplies Before Leaving Home
“When heading out for an adventure away from home, particularly an overnight or extended stay, make sure the sensor will not expire during the event,” Cox advises. That goes for batteries in your transmitter and backup glucose meter, your phone — make sure you have the means to keep it charged — and other equipment and supplies you are taking.
3. Double — or Triple — Up on Supplies That Can Fail When You Travel
“We always travel with way more extra supplies than we would ever think that we would need,” says Cheney. “I would not want to be without a CGM, so anytime that we travel I’ll bring an extra transmitter, extra sensors — two to three times more than what I think I would need for the duration of our trip.” Duncan doubles up as well. “While traveling, I carry spares of everything, including insulin syringes, blood glucose monitors, test strips, infusion sets, insulin reservoirs, and batteries.” Because replacement CGM sensors can take a while to come after they are ordered, and insurance may limit how often you can order a replacement, Sato suggests not waiting until the last minute to request one.
4. Have a Backup Plan for When Your Child Is at School, on Sleepovers, or Otherwise Out of Your Sight
In addition to packing backup supplies, communication is key to ensuring that your child will be fine if the unexpected happens while he or she is out of your care. “Talking with the primary adult that is responsible for the child ahead of time to explain the basics of [CGM] sensors and what they mean can also be valuable,” says Cox. Sato advises that the adult who will be supervising your child — at school, this might be a nurse, teacher, or bus driver — also know how to do traditional blood glucose monitoring if the CGM service fails. Having access to a cellphone app is essential for many children who uses CGMs. Because some schools have policies against having cellphones in class, Cheney advises parents to include the need to carry a phone in their Section 504 disability plan that is filed with their school. She also keeps the lines of communication open with Zola, who knows how to text her with her glucose readings in case something disrupts Follow app service. That wasn’t always the case. “Early on, when Zola couldn’t type out a text — because she could not spell yet — we would use emojis,” says Keary. “She would know how to search for the numbers, and then she could type in her [glucose reading] number.” A horizontal arrow meant her reading was flat, one pointing up meant her glucose was rising, and one pointing downward meant it was falling. “I would text her emojis back,” says Keary. “For instance, if her blood sugar was low then one candy symbol means eat one roll of Smarties. Two candy symbols means eat two rolls of Smarties. So it was just a very simple way for us to communicate even though she couldn’t quite read or write yet.” Sato urges caution with this approach and making sure that the meaning of each emoji is clear to both parties. “I have had a few adults send glucose data with emojis relating to how they’re feeling, but the only problem I have with it is that they may interpret an emoji differently than I do.” The Apple Store has a Diabetes Emoticons app to help caregivers and young children communicate in a similar way. RELATED: What to Do When Blood Sugar Levels Drop Too Low
5. Check With Your CGM Provider for Updates and Answers
Since the outage, Dexcom has created a status page at status.dexcom.com, which is accessible 24 hours a day. The company says a direct in-app messaging feature will launch for the Follow app in the coming weeks so that sharers and followers will be immediately alerted to service interruptions. The status page not only reports outages, but also when service on Dexcom’s platforms are “operational” or “degraded.” On February 7, 2020, the status page reported degraded performance on Dexcom’s Clarity diabetes management app. The company reported that the problem was resolved early the next morning. “A yellow alert means the impact to users is very limited,” Dexcom said in a statement to Everyday Health. “In this instance, some clinics were experiencing issues logging into the Dexcom Clarity retrospective reporting app. The login issue had no impact on our core CGM or Follow apps. The new status page worked exactly as it was supposed to in providing a place where impacted users could go for real-time system updates.” Other CGMs have share and follow functionality as well. Freestyle Libre has a LibreLinkUp app, the company’s helpline is open 7 days a week from 8 a.m. to 8 p.m. Eastern Time, excluding holidays. Guardian has a Connect app, and the parent company Medtronic has a 24-hour technical support line if you have any questions. RELATED: The Science-Backed Reasons to Join a Diabetes Online Community
Remember: With a Good Backup Plan in Place, You Can Handle Interruptions
“Technology is technology, and it doesn’t work 100 percent of the time,” says Keary. “I think sometimes we start to get really comfortable and rely on it so heavily that we forget how to live life without it. But at some point, we were all diagnosed and we did have to manage blood sugar without this technology available to us.”
