What happens when someone without diabetes starts sporting a diabetes device, and describes the experience more like having a new toy, rather than a life-saving medical product?
The Diabetes Online Community gets mad, apparently.
That’s what happened recently when Business Insider journalist Lydia Ramsey tried out a Dexcom G6 CGM (continuous glucose monitor) to track her glucose levels for a few weeks. In her mid-November article, the 26-year-old New Yorker who does not live with diabetes clearly points out that she isn’t “the intended user of a CGM,” but for years she’s been interested in trying one out for herself. To do this, she obtained two G6 sensors to try out for 20 days “in the hope that it would help me find ways to boost my performance and energy through changes to my diet and exercise.”
Across social media, people touched by diabetes were not pleased. Many slammed Ramsey’s piece as being shallow, tone-deaf, and disrespectful to the struggles that PWDs (people with diabetes) face on a daily basis.
But the idea that CGM devices will soon become more mainstream gadgets, regularly used by people without diabetes, is not new. Many CGM makers, including industry leader Dexcom, have been quite vocal about this.
It may even be a matter of survival for manufacturers, given that global stats show CGM usage at just 25% to 30% of the roughly 25 million people in the US with type 1 diabetes, at best. Now that pharmacies are starting to stock CGM supplies, and lower-cost, fully-disposal models are in the works, we may be nearing that crossroad when CGM is not just for people with diabetes.
Coincidentally, Ramsey’s article published just prior to the Thanksgiving holiday weekend, when Dexcom experienced a “server overload” that shut down its data-sharing functions for 48+ hours. Many users were up in arms over this second #DexcomOutage following a similar incident over the New Year’s 2019 holiday. These outages lead to concerns about how the company could possibly meet hugely expanded consumer demand, going forward.
In Ramsey’s account of her experience using the Dexcom G6, she describes both routine workdays around New York and also training for and competing in the NYC Marathon, which she ran with her dad. While Ramsey isn’t “one of us” with diabetes, she has a T1D colleague at Business Insider and has been covering diabetes – the insulin pricing crisis, specifically – for the past few years.
Our team at the ‘Mine had our share of eye rolls reading her CGM piece, especially the way she describes her post-milkshake blood sugar as “boring” and “not as cool as I thought” when seeing that PWD-coveted straight trend line. She also describes her “disappointment” when gummy candy didn’t spike her BGs during an 11-mile run, and makes reference to herself as “Bionic Lydia” in texts with friends.
Understandably, some folks were worried that Ramsey’s “superficial” view makes CGM seem like yet another general health and fitness “toy” that insurers would have little incentive to cover. That is the last viewpoint PWDs would want propagated.
Yet there is some valuable insight in Ramsey’s piece worth noting for the broader non-diabetes world curious about CGM tech and how it might be useful in their general health tracking efforts:
- Food and exercise effects vary: Even though her BG levels were not as volatile as those of us with diabetes, Ramsey was able to observe the impact of different foods — and got to experience our everyday reality that effects often vary even with the same foods. Same goes with exercise; during her marathon training and competing, her BG levels didn’t just drop but sometimes went up.
- Sleep patterns: Ramsey observed that her glucose levels would rise slightly just before bed, and then spike around 3am — what many of us in the diabetes world know as “Dawn Phenomenon.”
- Alcohol (beer specifically): She expected her blood sugars to rise when drinking a high-carb brew, but to her surprise discovered it actually lowered her glucose. This is also sometimes the case for those of us with type 1 diabetes.
- Energy slumps not correlated to glucose: Ramsey writes, “Turns out, the body is more complicated than I had initially thought. Blood sugar levels don’t exactly correlate to energy levels. There are other factors, like caffeine intake, hormones, how well I slept the night before, how hydrated I am, and general feelings of procrastination, that could contribute to my afternoon slump. And even in cases when my blood sugar stays low, like while running long distances, it doesn’t mean I’m out of fuel.”
Ramsey also delves into two psychosocial aspects of wearing a diabetes device that many in our community know all too well:
- That people out in public generally don’t know what a CGM is, and that sometimes people even poke at it on our bodies believing it’s some new type of sports tracker like a Fitbit.
- Location matters, in terms of finding the right spots on the body to wear the device. She learned that the struggle is real, when it comes to worrying about snagging a CGM sensor on clothing, seatbelts or other objects.
Ramsey summarizes her CGM trial by stating that while her BG fluctuations were in fact minimal, “I still learned a lot about my body, and by the end, I was bummed I had to take it off.”
In her article, Ramsey notes: “For tech workers taking a DIY approach to biology, CGMs offer a way to quantify the results of their at-home experiments around fasting, exercise, stress, and sleep.” She links to another Business Insider article from January 2017 in which non-diabetic Bay Area biohackers wore CGMs simply to study the uses of such medtech devices.
Of course there are those who have tried wearing a CGM or insulin pump out of empathy, as a way to better understand what their child or other PWDs in their lives may be experiencing. This includes some healthcare providers, for example Lily Nichols, a registered nurse and CDE who does not have diabetes but reported about the experience of trying the device being prescribed to patients in a quite informative blog post.
Many of us have shaken our heads over these practices, because we know it’s not the same thing as being truly dependent on a CGM or insulin pump; they aren’t actually navigating wild blood sugar swings, never-ending carb calculations nor the psychosocial challenges involved with wearing medical technology 24/7. But perhaps one can still appreciate their efforts to gain understanding…?
Around the diabetes online community, Ramsey’s piece drew widespread criticism.
- Australian D-advocate and blogger Renza Scibilia describes this phenom as “playing pretend” on diabetes and criticizes those – HCPs, in particular – who do this. She’s written about that before in a post titled “Why do diabetes when you don’t have diabetes?” and a followup post where she revisited that question.
- Longtime T1 PWD and advocate Kerri Sparling shared this about Ramsey’s writeup: “This article makes me really mad. People with diabetes struggle to access CGMs (among other things).”
- T2D advocate Mila Clarke Buckley says, “This would have been better if she would have juxtaposed it with why they’re beneficial for someone with diabetes, and how it helps our daily decisions. It just seems frivolous, and kinda misses the point of what a CGM can do for someone’s quality of life.”
- Fellow type 1 Mike Parise adds this, “It just bothers me that the writer of the article was able to get her hands on one when so many diabetics don’t have the opportunity to have it (for whatever reason). It just came across as ‘Oh, look at this cool thing and I don’t need it but let me see what a bagel and marathon does to my perfect blood sugar.’ And then, ‘I’m so sad to lose it.’ I know that an article like that is good publicity for an awesome tool for us. But as I mention, something really bothered me about it.”
Others shared concerns about whether Dexcom would even be able keep up with broad consumer demand, since the California company has been struggling to meet PWD demand to date, or how insurers might interpret consumer demand as a sign that CGMs are a “luxury” item.
Not all saw red, though.
From England, two DOCer’s shared different perspectives:
- @DiabetesDadUK noted: “I understand the anger towards the CGM-using journalist. We all want the best tech and meds. Not everybody can afford them. I found the graph interesting and how the BG of a person without diabetes reacts. The flat lines that we chase as T1Ds are unrealistic & unnatural.”
- @Kaylabetes wrote: “An interesting read. Doesn’t make me angry. Pretty good factual info re: use of CGM.”
While Ramsey’s “mainstream” CGM review may raise some hackles in the diabetes community, we have to remember that’s not who this article was written for. Business Insiders‘ intended audience is a much broader swath of people who follow the expanding market for a variety of medical sensors to help consumers track their overall health.
And when reading our community’s visceral responses, we couldn’t help but reflect on the fuzzy lines that exist between the good, bad, and ugly of diabetes: Do we PWDs wish to be seen as “sick” or not? On the one hand, there are so many inspirational stories of Olympic athletes with diabetes and those who can do anything. But on the other hand, many PWDs suffer debilitating complications, and want to be recognized for their struggles. How is the general public supposed to reconcile those two faces of diabetes?
It’s a tricky balancing act, for sure.
Ramsey wraps up her article by noting: “I’ll be curious if there’s a world in which glucose monitoring becomes more popular among people without diabetes.”
It definitely seems like that’s where we’re headed. We have to believe that as CGM (or any diabetes tech) becomes more mainstream, it will become more accessible and affordable to the masses, including many more PWDs.
And that seems like something we can all get behind — despite the emotions we may have about non-diabetes folk being privileged and superficial, or not using a particular device in the same life-critical way that we do.
Mike Hoskins has lived with type 1 diabetes since age 5. As managing editor at DiabetesMine, he has two decades of experience in print and online journalism, and is an active patient advocate in the Diabetes Community. He lives in Southeast Michigan with his wife and their black lab, Riley (his editorial assistant!).