Paloma Kemak is a native of Arizona and she uses social media to highlight the benefits of continuous diabetes monitors.
The floral backdrop, travel photos, wide-brimmed hats and pet portraits that have become the mainstay of the modern influencer are what she fills her account with. She posts images in which she poses with the back of her arm facing the camera and shows off the small white sensor that monitors her blood sugars.
She created her online presence to fill a gap she saw in the real world: positive representation of diabetics like her.
She said she likes to show her life and how enjoyable it is.
She feels like she is being misunderstood by non-diabetics who don’t understand why she has a piece of technology on her arm. Kemak says that seeing someone else wearing a CGM is a sign that she is going to make a friend.
Kemak approached the stranger at Starbucks to strike up a conversation after seeing him wearing the same CGM as the woman he was talking to. He gave her an unexpected response.
Kemak said that he was like, “I don’t have diabetes…you should just eat better.” I was so surprised.
Many people with diabetes rely on the mechanical devices that measure the levels of sugar in their blood multiple times a day. A small patch affixes to the skin on areas such as the arm or stomach, and the CGM sends its readings to a sensor or phone, where the user can read real-time measurements
People with diabetes are not the only ones who can use the devices.
Kemak might have been an exception to the norm, but more and more non-diabetics are using CGMs. They post about it.
They attach the sensor to their body parts. In some posts, a small CGM is next to cross-country skis, giant barbells, outdoor vistas and plates of food. There are many recipes as well as workout regimen.
Many other fitness and wellbeing accounts on social media promote: better health, better sleep, a more “optimized” body, and that’s because of the charismatic and often clad in matching workout gear, CGMinfluencers. There is varying amounts of scientific evidence to support their claims.
Even though there is a wide range of evidence, investors and startups are still marketing the technology. A company called Levels received $12 million in seed funding in the fall of 2020.
At least 39 companies are devoting attention to the technology in one form or another, according to Healthline. There are rumors that the Apple Watch and other popular Wearables may include a feature to monitor blood sugar.
Some companies don’t have control over the content associated with their brands if it’s not on their platform It isn’t necessarily within their purview to prevent the spread of misinformation or untested health claims since they can monitor social media for claims being made.
Dan Zavorotny, chief operating officer of the company, said that they don’t prescribe specific diet plans. They connect them to a network of doctors in their state who are able to prescribe the technology. Health data software and access to a licensed dietitian are included in the price of the subscription.
We’ve had people who follow the ketogenic diet, we’ve had people who follow the vegan diet, and our goal isn’t to tell them to switch from one diet to another. Zavorotny said it was about improving what they were doing.
Heather Walker is an associate director of qualitative research at the University of Utah Health who has studied social elements of diabetes. She said that companies that market CGMs to non-diabetics are making a game out of a difficult situation.
The scientific community waits for formal studies on CGM outcomes for other conditions to establish the line between Gamification and Medical Needy.
Kevin Jubbal, a physician and public-facing CGM user associated with startup company Levels, explained how he decided to use a CGM to help manage his disease.
Jubbal had his first Flare when he was a Freshman in college. Some people with a type of inflammatory bowel disease can experience serious GI symptoms such as diarrhea and even other problems. When he had his first flare, Jubbal lost over 30 pounds.
He said that it was a scary time when he began to prioritize health. Nothing else matters, that’s what it says.
He began to figure out what made his symptoms worse after experimenting with his diet for a long time. Things didn’t get better because of Keto. Reducing dairy helped him with his symptoms. He tried to reduce the amount of nuts.
He was the first person to try his first CGM. He was able to see how his blood sugar spikes correlated with other factors, such as sleep, stress, exercise and more.
He thought he had a lot of room for improvement.
After that, he didn’t wear a CGM at all, but he’s been wearing one for the past few months. The best practices help him avoid flares.
I learned a lot from the first two or three months. Jubbal said that he was getting more feedback that held him accountable. I have noticed that when I wear the CGM, I eat better than when I don’t.
Jubbal has been testing out the idea of using CGMs to manage other conditions besides diabetes.
He said it was based on what he knew of the human body and how it works. To get the insurance companies to change their decisions about what they want to cover, we need more evidence.
He thinks it will become more popular as the technology gets better. He is doing what many people with diabetes do out of necessity for a condition that he could probably manage without a device.
Everyone will probably not appreciate or condone that. Jubbal said that you have to be weird to enjoy it. It takes more work.
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It’s a choice that doesn’t make sense to David Grigsby, a patient at the El Rio health clinic in Tucson who didn’t think CGMs would be for him.
Would I want to have to do this stuff if I didn’t have Diabetes? He said he wouldn’t.
Grigsby said that if it wasn’t for the insurance companies, he wouldn’t be able to pay for it. People don’t need that kind of money. I don’t think that’s a good idea.
Grassroots networks and the future of CGMs
When Brandon was younger, he was a big fan of the device.
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 don’t reach them.
Patrick Breen/The Republic
At 7 years old, Lopez was diagnosed with diabetes. When he was living with his parents, he had to switch to multiple daily injections ofinsulin after his pump broke while he was hiking.
Lopez thought he wouldn’t be able to pay for a CGM. Rich people can’t afford that kind of thing. For me, that was a fantasy.
He was able to use a CGM after he got a better job that had better health insurance.
He said it was life changing.
He didn’t stop at that point. He started to raise awareness about the need for unused diabetes supplies, and every now and then he would get a package from someone who was willing to give someone the supplies.
Things began to get better during the Pandemic. The Embrace Foundation was born when more packages came in.
Lopez and other volunteers visit a dimly lit storage facility in Chandler every Wednesday to organize and distribute donated diabetes supplies. The wall behind them has letters taped to it. Many thank him for his work and offer up catalogs of supplies, but sometimes, but less frequently, continuousglucose monitors.
Lopez says that he has to make difficult decisions about how to allocate supplies because they are limited.
He believes that it’s not because of a manufacturing issue or a shortage of devices but because patients don’t have reason to donate them because of the high cost. If there is an upgrade to the technology and a patient gets access to a newer model, the Embrace Foundation will only accept donations from the families of dead patients.
The company is not having a shortage of devices.
James McIntosh, a spokesman for Dexcom, said that the company does not have supply challenges at the moment. Expansion of coverage limits access for some people.
Lopez tries not to discriminate between Type 1 and Type 2 applicants, but with not enough devices to go around, he tries to prioritize emergency situations.
It often means kids with Type 1 who aren’t old enough to monitor their own blood sugars, or people with diabetes who are at higher risk of being hospitalized.
Lopez said it was difficult to say who deserved them and who didn’t. We can’t really say when we’ll be able to give them a CGM.
There were 16 people in Arizona on the waiting list. So far, six of the 16 have got them.
It is difficult for people who don’t have access to a doctor who can prescribe one to use the technology. Lopez said that most people don’t get a prescription after being told how to. They are out of reach.
Lopez said it can be hard to make decisions about where their supplies end up.
People give me what I ask for. He said that it can be hard to just grant someone who gets this because they just tell him a little blurb. I try to decide who would benefit from one and who wouldn’t.
Companies are thinking on a larger scale as Lopez works on a small amount of supplies. In its most recent earnings call, Insulet reported that it had surpassed a billion dollars of revenue in 2021. The company wants to expand its advertising efforts to include people with both Type 1 and 2 diabetes.
The company introduced a patient assistance program during the Pandemic and has continued to help people who have lost their jobs. The challenge of eliminating prior authorizations makes it difficult for providers to prescribe.
One of the few states with a Medicaid program that doesn’t cover Dexcom is Arizona.
Sylvain said that they want to put as many people as possible close to a sensor to better understand what’s going on with their blood sugars.
The company needs to scale up operations to bring down the cost. He acknowledged the potential for using CGMs beyond diabetes while emphasizing the company’s role in it.
He said that there’s a space for people to move away from using CGMs just for diabetes. There are things that can be done there. We need to work with the FDA to get approval for this.
Lindsy Delco stated in an email that Abbott does not condone off-label use of their products.
She said in the same email that they are developing a separate line of consumer biowearables. Lingo introduced the world’s firstglucose biosensor for athletes last year in Europe, and plan to bring more biowearables under the Lingo brand name.
Abbott and Dexcom both say they are focused on affordability for people with diabetes.
Rob Schumacher/The Republic
The changes haven’t reached people like him, his wife, and his son, according to the man. Within weeks of each other, Summer and Leo received their diabetes diagnoses, and it took them years to learn about CGMs, use them, and navigate insurance changes.
They were unable to afford the CGMs for weeks at a time because of the changes. For financial reasons, they can’t both wear the devices that could save their lives during certain weeks.
Some of these companies have programs that you can use. “You have to jump through hoops and I don’t see how anyone under any poverty level can do that.”
The silver lining was not the big companies, but the people on the ground who were willing to help, a network of people with diabetes, and their families.
He said that the parent of one of his son’s friends gave them a small amount ofinsulin when they really needed it, or that another parent gave them more supplies because the brand wasn’t working for their family.
He says that’s where he found solace when he was looking for CGMs.
I didn’t feel like myself. The whole system left my family. It’s not cheap for me to help my family.
The Flinn Foundation supports independent coverage of Arizona’s biosciences.
Melina Walling is a reporter who covers agriculture and the environment. Melina Walling can be reached via email at mwalling@gannett.com or on her verified account on social media.