Weston Nordgren is a mover and shaker in the diabetes online / innovation community. Yesterday, he shared his family's story of the diagnosis of their infant son, and how he and his wife got involved with the CCM in the Cloud group tinkering with Dexcom technology to make it more useful for families struggling to keep their T1D kids safe.
Today, Wes shares Part 2 of his story, on helping to revolutionize the Diabetes World by bringing this patient-led initiative and technology know-how to the healthcare professionals closest to diabetes patients.
#WeAreNotWaiting to Change Healthcare, by Weston Nordgren
Sometimes I muse that getting the word out about a myriad of open source solutions in our worldwide community is similar to the ‘Whos’ in ‘Whoville’ -- banding together with all their might to let those in another world know that they exist. Other times it feels like a worldwide bubble of over 43,000 people all immersed in disparate projects to either provide a solution for an unmet need in the T1D community, or augment and streamline an industry solution.
We are so immersed 24/7 in our individual and collective lives dealing with a brutal chronic disease that we forget that we are barely getting the word out of our bubble of 43,000, or as I call it, “the largest small community in type 1 diabetes.”
As we attended the #AADE17 conference (annual meeting of the American Association of Diabetes Educators) earlier this month, we once again stood on each other’s shoulders to proclaim our existence and the respite that can be found through the open source solutions emerging from the #WeAreNotWaiting community.
We had only been an online community at ‘CGM in the Cloud’ for a little over three months when (blogger and advocate) Kerri Sparling shared the first stories of our existence with the CDEs and others at the AADE conference in 2014. That was followed by Molly McElwee-Malloy, a CDE and blogger for AADE, further sharing our community with this group.
Those were the early days of our community, and the early days of a ‘single solution revolution’ that disrupted industry timetables, a revolution that began to meet the unmet needs of thousands with T1D across the world.
Our community today continues to grow at a rapid pace with a 36% increase in just the last 12 months.
We wanted diabetes educators, who see an average 30 patients a day, to hear about all of this exciting development happening in the #WeAreNotWaiting community.
At this year's #AADE17 conference in Indianapolis, we actually felt like we had finally taken root at the convention.
We not only had a booth were we could interact ‘one on one’ with the nation’s largest body of highly skilled CDEs and other educators, who directly influence the lives of so many families across North America, but #OpenAPS innovator Dana Lewis also gave a presentation on that open source artificial pancreas technology on the second day of the conference.
The first day and a half, we met a vast amount of diabetes educators who were utterly astonished at what our community had been doing. As we spoke, some commented that they had goose bumps at hearing about our ‘all-volunteer’ community’s journey, some had tears in their eyes as we described the great lengths many members had gone through in order to ‘pay it forward,’ and one industry director of training broke down and cried at the thought of all the people in need being helped.
Quite a few of the diabetes educators were visibly upset that they had never heard of
Nightscout or OpenAPS prior to meeting us, because they had patients in need of
one or more of our solutions… right now. Sometimes we spend so much time in our community bubble that we forget
that there are hundreds, thousands, and millions of people out there still struggling without
any type of solution that our community or industry offers.
I can definitely divide the conference into two parts: the part prior to Dana’s presentation, and the part after. The first part of the conference was filled with the above-mentioned interactions, but once so many attendees had heard Dana’s presentation, the second part was very, very different.
Shortly after Dana’s presentation ended, we started to see people ‘homing in’ on our booth with notepad and pen in hand, with a very intense look in their eyes. There was genuine astonishment that no one had told them of these wonderful open source solutions from remote monitoring of all major CGMs to three full-blown hybrid artificial pancreas systems (most of which had been available for multiple years).
All I could think was that the ‘megaphone’ to get the word out in an all-volunteer community that funds its advocacy efforts through the sale of $10 bumper stickers is woefully inadequate when you consider there are more than 20,000 CDEs in the U.S., who all together interact with more than one million people with T1D. (This is where I try to increase the size of our ‘megaphone’ by listing the www.NightscoutFoundation.org/Donate URL and asking for your assistance ;)
There was once a time when not only had I never heard of a CDE and the wonderful work they do for the patients in their care, but I also had no idea how much our family would benefit over the years by having CDEs as a resource. As our family transitions from the open source LOOP hybrid artificial pancreas system to the Medtronic 670G hybrid artificial pancreas (due to our son being unable to use a DIY solution at school), we have found a great resource in our current CDE, who earlier this year successfully made the very same transition that we have just days ago embarked upon.
So at AADE this year, I shared our family’s success story with as many diabetes eduators as possible about how a ‘so called’ brittle diabetic could go from his worst A1c in 9 years to his best A1c in just 90 days. These multiple hybrid artificial pancreas systems from our community had wrought a ‘night and day’ transformation that was heretofore unavailable to our family, because my wife and I, no matter how diligent in our manual T1D care, could not for the life of us modulate our son’s basal insulin at a frequency that compensated for his gastroparesis. The algorithm for the LOOP system that we were using could dynamically alter the basal hundreds of times a day if needed based on what his physiology was or was not doing.
Please email us at [email protected].
It has taken determined individuals and caregivers in our community that were battling the real-life hazards of this chronic disease day in and day out (while sleep deprived), to bring about this amazing change of life through DIY technologies that now include more respite, full sleep cycles, increased calm, and all at no cost to our family and the thousands of other families in our community.
These same individuals and caregivers provided these solutions either self-funded, or relying on funding from the sale of $10 community bumper stickers (that echo the clarion call of #WeAreNotWaiting).
So I ask the medical device companies to take their millions and billions, their boardrooms and project teams, their infrastructure and departments, and provide commercial versions of these life-changing T1D technologies that exist, and have existed in the DIY community for quite some time.
In closing, I would like to share the extremely honest and bold words of Jeffrey Brewer, now CEO of Bigfoot Biomedical, as he addressed a room full of industry leaders at the ADA 76th Scientific Sessions in New Orleans last year: “With all due respect, we are not waiting. The tools exist. We should be ashamed that we haven’t done this yet.”