Grassroots Innovation — How the Tech Hive Mind Helps Me Live with Diabetes
Drew Richardson and his own Dexcom G6 Continuous Glucose Monitor. Photo Courtesy of Drew Richardson.
The opinions reflected in this OpEd are those of the author and do not necessarily reflect the opinions of staff, faculty and students of The King's College.
The hardest thing about living with Type 1 diabetes is remembering how simple life was before.
At 19 years old, after two months of weight loss, mood swings and dehydration, I was diagnosed with Type 1 diabetes. Ironically, I was home from school for Spring Break, excited for a much-needed rest. Ever since, I have walked the daily endless tightrope between low and high blood sugar — managed by injecting insulin under my skin, into my bloodstream.
As jarring as it was adjusting to a new lifestyle with Type 1 diabetes, I quickly became enthralled with the technology behind diabetes treatment. What’s more interesting is that the exciting technology was not coming from the big-name medical giants. Rather, it was coming from regular people in the community. Through clever hacks, self-built Bluetooth receivers and basic coding knowledge, Type 1 diabetics were extending the life of their equipment and hacking their insulin pumps.
As a college student on a budget, I turned to this hive mind, this community of diabetics on the Internet. Applying their collective wisdom — delivered via YouTube videos, blog posts and social networks — has simplified my life and preserved my bank account.
Dexcom
The Dexcom G6 is a continuous glucose monitor (CGM) that wirelessly sends blood glucose readings to a smartphone every five minutes. The Dexcom G6 works by using an applicator to inject a wired sensor under the skin. Above the skin, the wire is secured to a casing that holds a Bluetooth transmitter which, in turn, communicates with a smartphone. A new sensor must be re-injected every 10 days. For many, this can replace the old-fashioned method of testing blood glucose levels: taking a blood meter, inserting a test strip, using a lancet to draw blood, transferring blood to the test strip and waiting for a result from the meter.
But convenience is not the main selling point. The Dexcom G6 is quite literally a lifesaver. Type 1 diabetics are at the highest risk for hypoglycemia (low blood glucose), which can cause sudden death. The “Death in Bed” syndrome is when someone suffers from hypoglycemia in their sleep when they are not awake to feel its symptoms. Because the Dexcom G6 monitors glucose continuously, it alerts a user when their blood glucose levels reach dangerously low levels. And a diabetic can program a smartphone to set off an alarm to awaken the user.
I am a user of the Dexcom G6, and I can attest to its life-saving ability. On one occasion, I awoke to my iPhone alarm blaring. My blood sugar was at 40 mg/dL, a dangerously low level. My hands were shaky and my vision was fading, but because of the alerts, I was able to consume the pure glucose tablets I keep by my bedside. They are chalky and unpleasant, but at that moment, I was glad to be eating them. The Dexcom alerts ceased as my glucose levels returned to healthy levels. I do not know how that would have played out without the Dexcom G6.
Dexcom was founded in 1999. Building on research conducted by Dr. Stuart J. Updike and George P. Hicks in 1967, Dexcom began testing an implantable sensor that could detect blood glucose levels while avoiding immune system rejection. The Dexcom G6 was made available by prescription in October 2019. Today, the company is headquartered in San Diego, California.
Great technology is only useful if people have access to it, and CGMs are not cheap. According to Healthline.com, the estimated out-of-pocket cost for the Dexcom G6 is $6,000 per year, or $500 a month. Many diabetics cannot afford the insulin itself, much less a “luxury” CGM. A cheaper option, the FreeStyle Libre system, is also available, but these CGMs require a scan, meaning there are not truly continuous sensors.
The Type 1 diabetic community has created somewhat of a workaround to the enormous cost of the Dexcom G6. On YouTube, countless creators have made videos on how to hack the Dexcom G6 sensor beyond its 10-day life. These hacks are off-label and can affect the accuracy of the sensor. But for most, it’s worth it to save some money.
“I believe people extend the life of sensors to not only save money but to get more out of their supplies,” Maddie Nielson said via email exchange, a creator of a Dexcom G6 “hack” video. “Why wouldn’t you want something to last as long as possible?”
Nielsen, a Type 1 diabetic from Wisconsin, has racked up more than 25,000 views on her video.
Nielsen’s video was the first one I saw detailing a way to extend a Dexcom G6 sensor beyond 10 days. I now regularly use this hack to get the most out of my Dexcom G6 sensors, saving myself about $75 each time.
Insulin Pump Looping
The ingenuity of the diabetic community does not stop at extending Dexcom sensors. Do-it-yourself insulin pump looping is the off-label linking of an insulin pump and a CGM. Using Loop software, users can hack their insulin pumps to work more intuitively. This effectively creates a closed-loop system, where the CGM supplies real-time blood sugar readings which informs the insulin pump to supply a certain amount of insulin, all automatically.
There are only a few closed-loop systems available on the market, the Medtronic 670G, Tandem X2 with Control IQ and most recently, the Omnipod 5. All three of these systems require a controller to communicate with the insulin pump.
The problem with commercially-available insulin pumps is that some users feel that they don’t have control over the insulin dosage decisions the pump makes. All three of these pumps employ a pre-programmed algorithm and beyond a few basic settings, users cannot personalize the algorithm for their body.
Loop, the most popular community-built DIY looping software, is designed to give the user of the insulin pump full control. After all, Type 1 diabetes is a remarkably personal disease. No two people will have the same insulin needs, so the ability to personalize is paramount.
Loop is a grassroots and non-profit effort to offer Loop software to diabetics free of charge. According to its website, Loop “is an app template for building an automated insulin delivery system. It is a stone resting on the boulders of work done by many others.” Loop takes the same concept commercialized by Medtronic and Tandem and gives the power back to the consumer.
Nate Racklyeft, a San Francisco-based Type 1 diabetic, began Loop’s development in 2015. He soon joined forces with Minnesota-based software engineer, Pete Schwamb. Schwamb sprung into action after his then 6-year-old daughter Riley was diagnosed with Type 1 diabetes in May 2013. In 2015, Schwamb would then invent the appropriately-named Bluetooth receiver, the RileyLink. Loop Version 1.0 was first made available in 2016.
The Loop software along with the RileyLink allows users to choose from a range of pumps and CGMs and link the two together through Bluetooth technology. The RileyLink takes the blood glucose reading from the CGM and delivers data to the insulin pump. The insulin pump then automatically administers the appropriate amount of insulin based on the user’s programs. The entire system is controlled by an iPhone, where users are allowed complete control of the insulin delivery algorithm.
FDA Roadblocks
The Loop software also saves users money. Not only is the software free to use, but Loop is compatible with many older insulin pumps that are now much cheaper than newer ones. Once programmed into the Loop, these pumps have more features than the newer ones, so functionality is not sacrificed. The innovation is promising, but we can see significant roadblocks.
“Loop can’t really be commercialized without FDA approval,” said Schwamb in a Zoom interview. “Currently, Tidepool (a nonprofit) is attempting to do exactly that.”
I have tested Loop, and I can attest to the amazing amount of control the pump offers. What’s even better is automation. The software takes into account physical activity, food consumption and CGM readings to make extremely intelligent insulin dosing decisions, the same decisions a working human pancreas would make. Instead of having to constantly make these considerations myself, the algorithm will do it for me.
Unfortunately, some people have a hard time obtaining the Loop software. Without FDA approval, Loop cannot be downloaded from the App Store, it has to be built manually with the code provided to users via the Loop website. And without an Apple Developer account, which costs $99 a year, the app has to be rebuilt and reinstalled every week.
Nonprofit Efforts
Tidepool, of which Schwamb is the Technical Lead, is a 501(c)(3) non-profit effort to take the technology built by those in the looping community and make it more accessible. Founded in 2011, they hope to attain FDA approval and put a consumer version of Loop on smartphone app stores. This will allow anyone the ability to take their compatible insulin pump and CGM and link it to their smartphone with ease. They haven’t yet gained approval from the FDA.
“The FDA is not the enemy,” said Christopher Snider in a Zoom interview. Christopher Snider serves as the clinic success manager for Tidepool. “The FDA has allowed for innovation by splitting the regulation process for closed-loop systems into three separate components, the insulin pump, the CGM and the algorithm. This allows deeper focus and innovation into each of those components.”
The end goal is to make managing insulin-dependent diabetes less of a tightrope walk for diabetics.
The mission of Tidepool strikes close to home. “Imagine a world where anyone with diabetes and a smartphone might access the latest innovations coming from MedTech, with the flexibility to choose the component pieces to which they have the greatest access or the components that they believe provide the reduction of burden they’re searching for.”
Quality of Life
With a disease that too often makes me feel like my body is out of my control, I am proud to be a part of a community that is taking control, building and hacking its way to a better quality of life.
The grassroots efforts to save money on Dexcom G6s as well as building an entire DIY Looping algorithm to restore control to diabetics are exciting efforts by citizens. It’s a worthy challenge to the medical establishment to listen to the hive and the needs of patients. And perhaps it’s a lesson in how lean startup methodology and agile product development can be used in healthcare.
Drew Richardson showing the Omnipod Insulin Pump. Photo Courtesy of Drew Richardson.
While it’s true that regulation is important for medical devices and technology, it’s also true that people living with a major, life-threatening or life-altering health condition are desperate for solutions. And the intelligence and creativity of the hive mind is a huge resource for them.
Even though I’ll likely never be able to live my life as I did before Type 1 diabetes, the technology and innovation to treat this disease gives me hope that very soon, I’ll be able to come very close.
Drew Richardson is a senior at The King’s College studying Journalism, Culture and Society and Business Management. He is currently a reporting intern at the Brooklyn Paper.