Paloma Kemak, a native Arizonan, uses social media to put a spotlight on continuous glucose monitors, tiny medical devices that have revolutionized diabetic health care.
She fills her Instagram feed with the floral backdrops, travel photos, wide-brimmed hats and pet portraits that have become the mainstay of the modern influencer. And every so often, she posts images in which she poses with the back of her arm facing the camera to show off a less common accessory — the small white sensor that monitors her blood glucose levels.
Kemak, who has Type 1 diabetes (her handle is @glitterglucose), says she created her online presence to fill a gap she saw in the real world: positive representation of diabetics like her.
“I just like to show my life and how great and fun and cool it is,” she said.
She says she has often felt misunderstood and frustrated by non-diabetics who don’t understand why she had a piece of technology attached to her arm. When Kemak happens to see someone else wearing a CGM out in public, she says that’s often a sign that she’s “going to make a new friend.”
In 2019, Kemak saw a stranger at Starbucks wearing the same CGM as she was, and approached him to strike up a conversation. Instead of the usual diabetes-related bonding, though, he gave her an unexpected response.
“He was like, ‘Oh, I don’t have diabetes…you should just eat better,’” Kemak said. “I was so shocked.”
For many diabetics, CGMs are a crucial tool, mechanical devices that repeatedly measure the levels of sugar in a person’s blood. A small patch affixes to the skin on areas such as the arm or stomach, and the CGM transmits its readings to a sensor or phone, where the user can read real-time measurements.
But diabetics aren't the only ones who can use CGMs.
Though Kemak’s experience might have been an anomaly for her, more and more non-diabetics are starting to use CGMs. And like Kemak, they post about it.
They film themselves attaching the sensor to their biceps, triceps or stomach. In some posts, a CGM appears tiny alongside cross-country skis, giant barbells, outdoor vistas and plates of perfectly-portioned food. Recipes abound, as do workout regimens.
Charismatic and often clad in matching workout gear, CGM influencers promise what so many other wellness and fitness accounts on social media promote: better health, better sleep, a more “optimized” body. They peddle a range of diets, from carnivore to vegan, with varying amounts of scientific evidence to back up their claims.
The wide range of available evidence hasn’t stopped startups, and investors, from marketing the technology anyway. Levels, a “metabolic health” company that connects patients with physicians who can write prescriptions for CGMs and sells proprietary data tracking software to users, received $12 million in seed funding in the fall of 2020.
Other CGM startups abound: Online health news website Healthline estimates that at least 39 companies are devoting attention to the technology in one form or another. And rumors abound that popular wearables like the Apple Watch or Fitbit may include glucose monitoring in forthcoming models.
But some companies sponsoring glucose monitoring influencers do not have control over the content associated with their brands if it’s not on their platform. That means that, though they can monitor social media for claims being made about CGMs, it’s not necessarily within their purview to prevent the spread of misinformation or untested health claims.
“We don't prescribe (any) specific diets,” said Dan Zavorotny, chief operating officer of NutriSense, a health and wellness company that helps clients to get a CGM prescription. They do that by connecting them to a network of doctors in their state who can write a prescription for the technology. NutriSense also provides subscribers with health data software and access to a licensed dietitian through their app.
“We've had folks who follow the ketogenic diet, we've had folks who follow the vegan diet, and our ambition isn't to tell them like ‘hey, switch from ketogenic to vegan’ or vice versa. It's about improving what they are currently doing,” Zavorotny said.
Heather Walker, associate director of qualitative research at the University of Utah Health who has studied social elements of diabetes, thinks those kinds of life improvements don’t fall under the purview of CGMs, which were designed with diabetics in mind. “You're making a game out of a life circumstance that's actually really challenging,” she said of companies that market CGMs to non-diabetics.
But the line between gamification and medical necessity is still not firmly established, especially as the scientific community waits for formal studies on CGM outcomes for other conditions.
Kevin Jubbal, a physician, entrepreneur and public-facing CGM user associated with startup company Levels, described how he decided to use a CGM to help manage his Crohn’s disease.
When he was a freshman in college, Jubbal had his first “flare.” People with Crohn’s disease, a type of inflammatory bowel disease (IBD), sometimes experience serious GI symptoms such as diarrhea, and even other problems like fever and joint inflammation. Jubbal says when he had that first flare, he was hospitalized for four days and lost over 30 pounds.
“It was a scary time, and that's when I started really prioritizing health,” he said. “It puts into perspective that nothing else matters.”
After experimenting with his diet for years, he started to figure out what made his symptoms better and worse. Keto made things worse. He tried a plant-based diet, and noticed that reducing dairy helped with his symptoms. He tried minimizing nuts and avoided sweets.
In 2019, he tried his first CGM. He watched his blood sugar spiking “all the time,” and was able to see how those spikes coincided with other factors besides diet, including sleep, stress, exercise and more.
“I remember thinking that I have a lot of room for improvement,” he said.
He didn’t wear a CGM at all times after that, but now he’s been wearing one for the past several months. He says it helps him stay on track with the best practices that help him avoid flares.
“I think the main lessons are very similar to the main lessons I learned from the first two or three months. But what I see now is, I'm getting more continuous feedback that holds me accountable,” Jubbal said. “I have noticed for sure that when I wear the CGM, I eat better than when I don't because I hate seeing that spike.”
Jubbal thinks that scientifically speaking, CGMs could be useful for managing other conditions beyond diabetes, an idea he’s tested out firsthand.
“Me having these processed sugars is worsening my inflammation, and that inflammation is tied to my IBD … I think it's based on what we know of the human body and how it works, (and) it totally makes sense,” he said. “But we need more evidence to support it … to prove it through studies, to then make the decisions to cause the insurance companies to change their decisions about what they want to cover.”
As the technology improves, he thinks it might become more popular. But for now he’s doing what many diabetics do out of necessity for a condition that he could probably manage without a CGM.
That’s not something everyone will necessarily appreciate or condone. “You have to be a certain kind of weird to enjoy doing this kind of stuff,” Jubbal said. “Because it does take more work.”
It’s a choice that doesn’t necessarily make sense to David Grigsby, a patient at the El Rio health clinic in Tucson who, before his experience with his practitioner Lisa Beckett, didn’t think CGMs would ever be for him.
“If I didn't have diabetes, I'd be like, ‘Well, would I want to have this thing stuck on me and having to do this stuff? I wouldn’t,’” he said.
“If it wasn't for the insurance companies, I wouldn't be able to afford it,” Grigsby said. “Why would people want to spend that kind of money, and they really don't need it? I would think that's just a waste.”
Grassroots networks and the future of CGMs
Brandon Lopez says when he was younger, using a CGM was a dream.
Now he's running a grassroots effort to help others fulfill that dream, one that big CGM companies say is aligned with their mission, but that some patients say still isn't reaching them.
Lopez was diagnosed with diabetes at age 7. While he was living with his parents, he had an insulin pump — until he went on a hike, the pump broke, and he had to switch to multiple daily insulin injections.
“I thought (a CGM) was something I'd never be able to afford,” Lopez said. “Something that only rich people can afford. That was a fantasy for me.”
In 2019, he got a job that had better health insurance and that dream of being able to use a CGM became a reality.
“It’s life-changing,” he said.
But he didn’t stop there. In 2017, he had started to raise awareness about the need for unused diabetic supplies, and every so often he would get a donated package from someone offering up insulin, a CGM or other medical equipment for people who needed it.
During the pandemic, things started to pick up. More packages started coming in, and the Embrace Foundation was born.
Now, every Wednesday, Lopez and other volunteers visit a dimly-lit storage facility in Chandler to organize, label and distribute donated diabetic supplies. On the wall behind them, Lopez has taped dozens of letters from donors. Scrawled on notebook paper in Sharpie or carefully printed and typed, many thank him for his work and offer up catalogs of supplies including insulin pens, sterile syringe needles, medications and — occasionally, but less frequently — continuous glucose monitors.
The Embrace Foundation’s website describes CGM supplies as “limited,” and Lopez says that he has to make difficult decisions about how to allocate supplies.
That, he believes, is not because of a manufacturing issue or a shortage of devices but simply because CGMs are so expensive, and so coveted, that patients rarely have reason to donate them. He says the Embrace Foundation really only receives CGM donations from the families of deceased patients who don’t need them anymore, if there’s an upgrade to the technology and a patient gets access to a newer model or if the patient switches CGM brands.
Dexcom confirmed that the company is not experiencing a device shortage.
“Dexcom’s product supply isn’t impacting access to CGM, as Dexcom does not have supply challenges at this time,” said James McIntosh, a spokesperson for Dexcom, in an email. “It’s the need to continue to expand coverage that limits access for some individuals.”
Lopez tries not to discriminate between Type 1 and Type 2 applicants when distributing CGMs, and typically aims for a first-come, first-served approach, but with not enough devices to go around, he also tries to prioritize emergency situations.
That often means kids with Type 1 who aren’t old enough to monitor their own blood glucose levels, or people whose diabetes might put them at highest risk of being hospitalized.
“It’s hard to say who deserves them and who doesn’t,” Lopez said. “We always tell people that we'll be able to give them (a CGM) eventually, but we can't really determine when that eventually is.”
As of this summer, there were 16 people in Arizona on the Embrace Foundation’s waiting list for CGMs. Six of those 16 have gotten them so far.
Another hurdle is that CGMs still require a prescription, so for people who don’t have access to a doctor who can prescribe one, the technology is unattainable. Lopez said that his team tells those individuals how to get a prescription, but the majority don’t come back with one. The CGMs remain out of reach.
Lopez said it can be difficult to be the person who has to make tough decisions about where their CGM supplies end up.
“(Applicants) give me what they give me. They just tell me a little blurb (on the online form), if anything, and it can be hard to kind of just grant who gets this,” he said. “But I try, to my best ability, to decide who would need one, who would benefit from one.”
As Lopez strategizes over scant supplies, companies are thinking on a much bigger scale. In a quarterly earnings call, Insulet, a corporation whose technology includes a blood glucose monitor integrated with an automated insulin pump, reported surpassing a billion dollars of annual revenue in 2021. The company said it hopes to expand direct-to-consumer advertising efforts aimed at people with both Type 1 and Type 2 diabetes.
Jereme Sylvain, chief financial officer of Dexcom, described a patient assistance program the company introduced during the pandemic and has continued to operate for individuals who have lost jobs or otherwise qualify for aid. But he acknowledged the challenge of eliminating the prior authorizations that make it so difficult for providers to prescribe CGMs.
Dexcom hopes to work with insurance companies — and with the state of Arizona, which is one of the few states whose Medicaid program does not cover Dexcom — to try to improve access.
“We really want to put as many folks as possible close to a sensor to better understand what's going on with their glucose, certainly those impacted by diabetes,” Sylvain said.
He said the company has to scale up operations to bring down the cost of the devices. While he emphasized the company’s role in diabetes care, he acknowledged the potential for using CGMs beyond diabetes.
“We believe that there's absolutely a space for folks to move beyond (using CGMs just for diabetes),” he said. “There are utilizations that can take place there. But in the end, this is something we really have to work with the FDA to get approval on.”
Lindsy Delco, a spokesperson for Abbott, said in an email that Abbott does not condone off-label use of their CGMs.
“Our sensing technology has potential for people without diabetes, which is why we’re developing a separate line of consumer biowearables,” she added in the same email. “We introduced the world’s first glucose biosensor for athletes last year in Europe, and plan to bring more biowearables under the Lingo brand name in the future.”
Abbott and Dexcom both say they are prioritizing affordability for diabetics in the meantime, including programs and corporate goals intended to improve access.
But in Avondale, Ernesto Huerta says those changes haven’t been reaching people like him, his wife, Summer, and his son, Leo. Summer and Leo received their diabetes diagnoses within weeks of each other, and it took them years to learn about CGMs, start using them, and to navigate insurance changes related to Ernesto's job.
Sometimes, those changes meant they couldn't afford the CGMs for weeks at a time. And they still experience certain weeks where Summer and Leo can't both wear the devices that could save their lives, for financial reasons.
“Some of these companies … they do have some programs that will help you. (But) you have to jump through hoops and I don't see how anybody, anybody under any poverty level can run through those hoops,” Ernesto said.
The silver lining, Ernesto said, was not the big companies, but rather the people on the ground who were willing to help, a network of diabetics and their families who stockpiled supplies and gave them to others when situations turned desperate.
He described the parent of one of his son’s friends who gave them a vial of insulin when they really needed it, or another parent who gave them some extra supplies because the particular brand wasn’t working for their family.
That, he says, is where he found solace while he looked for CGMs — not in the system that already existed.
“I felt deserted. Like the whole system just deserted my family,” Ernesto said. “They needed the help, but it's not affordable enough for me to actually help my family.”
Independent coverage of bioscience in Arizona is supported by a grant from the Flinn Foundation.
Melina Walling is a bioscience reporter who covers COVID-19, health, technology, agriculture and the environment. You can contact her via email at email@example.com, or on Twitter @MelinaWalling.
This article originally appeared on Arizona Republic: Fitness enthusiasts use glucose monitors, raising health care issues