Day three of AADE18 started off with a facilitated panel discussion with a multitude of recognizable diabetes faces and voices from the online community (and yes, I’m using their Twitter handles because this discussion was all about diabetes peer support online,) including; @HopeWarshaw, @CollegeDiabetes , @AmyDBMine , @diabetesdaily, @SweeterCherise .
The discussion focused on why diabetes peer support online (and off) is so damn important to PWDs, and how online peer support helps HCPs to actively engage, support, work with, and promote better management.
I WAS ALL OVER IT.
Am I biased? YEP.
Do I know diabetes peer support is vital to living with diabetes? Yes. I. Do.
IMO: The fact that HCPs (and industry for that matter) are recognizing the importance of peer support, engaging in it, and discussing it, proves it is critical.
One of the panelists, Edwin B. FIsher of @peers4progress, had flight delays and wasn’t able to arrive in time — but his slides did.
Edwin’s the guy who did the “diabetes math” and created the 8,760 Principle - an eye opening diabetes equation that says that as people with diabetes, we spend 6 hours a year with our healthcare professionals, and 8,760 hours caring for our diabetes on our own.
OF COURSE WE NEED AND REQUIRE PEER SUPPORT.
How could we not?
No PWD Is An Island - Bring On The Simon & Garfunkel
The panel members discussed how peer support online is informative — offering 24X7 support on everything from day to day diabetes life, diabetes user reviews of d tech/services, and life stuff that that has nothing to do with diabetes.
Peer support is also incredibly validating and alleviates social isolation.
Living with diabetes can make you feel like you’re an island. Having the support of our community reminds us that we are not.
According to panelist Hope Warshaw, AADE’s strategic plan identifies peer support as a tool for improving clinical outcomes in diabetes care.
Panel members also reinforced that our community is self-policing, shutting down snake oil salesmen and trolls, ASAP.
FYI: Digital health is an example of peer support.
I Know What To Do - I Just Can’t Get Myself To Do It
A session devoted to diabetes and mental health — was standing room only — with spillover into the halls and live streamed in an “overflow room.”
BRAVA to AADE for addressing diabetes and depression!
Again, if you don’t think there’s a link between diabetes and depression - THINK AGAIN.
Depression is twice as likely to occur in PWDs, and depression negatively impacts blood sugars. Untreated depression leads to more severe diabetes complications; increased medical costs, functional disability, and early morbidity.
Sidebar: Hearing all of the above made me feel depressed and sad.
Another Kick in the Pancreas: Depressive episodes not only last longer in people with diabetes, but each bout of depression become longer with each subsequent episode, while the time between episodes becomes shorter.
CBT (cognitive behavioral therapy) can help and improvements in A1C results were reported 6 months after CBT.
More PWDs need to be screened for depression by HCPs, including Diabetes HCPs.
PWDs suffer Diabetes Anxiety re: taking too much and too little insulin, long term complications and being a burden to loved ones.
Diabetes Distress & Burnout occur from the emotional stress of caring with everything related to diabetes - self-care, limited social support, feeling like a diabetes failure, feeling powerless.
IMO: Any one or all of the above, has the potential to create a diabetes storm that PWDs may not be aware is occurring and or don’t have time to prep for.
Breaking the Cycle
Focusing more on behavior and reinforcing to the PWD that “it’s just a number, not a judgement.”
Creating concrete steps that lead to positive blood sugar outcomes, while simultaneously increasing confidence and decreasing anxiety in the process.
It’s Not Just About A1Cs
The final session I attended reviewed the T1D Outcomes Program - a study evolving 8 different Diabetes Orgs.
And there was a lot to take in. So, I decided to focus on the talking points that resonated most with me.
What Stuck With Me
For the longest time (as in my whole life with diabetes,) the Hemoglobin A1C Test has been the main metric used as both a diabetes report card and predictor of complications.
The T1D Outcomes Program hopes to act as a guide for FDA and wants to expand the set of diabetes outcome measures beyond A1C to better reflect glucose control, including patient reported outcomes — how PWDs feel, function, and survive.
It’s not just about one blood draw every three months — because that one lab result doesn’t tell the whole story.
A “good” A1C doesn’t report the glu-coaster ride that is diabetes — it doesn’t reflect the extreme highs or lows that often accompany a “good A1C.”
Beyond A1C focuses on quality of life indicators like time in range and fewer debilitating lows.
Beyond A1C ’s end goal - to allow people with T1D access to better medications and diabetes tech, allowing us to keep blood glucose levels in a healthy target range without continual disruptions, adjustments, and stress.
More info re: the study can be found here.
I spent hours attending AADE sessions focused on peer support, the emotions of diabetes, getting inside the heads of PWDs, and diabetes tech — and that was by design.
Diabetes is a job that PWDs never asked for or wanted — it’s hard work that never ends.
Diabetes acts as our constant companion and accompanies us on the best and worst days of our lives.
And there are times when diabetes becomes emotionally draining and threatens to keep us down.
But it doesn’t have to.
PWDs need to realize that they are not alone; recognize the signs of diabetes depression and burnout, and seek treatment and support.
All PWDs need to be made aware that Diabetes Educators not only exist, but are there to champion, teach, and help us with the emotional and physical parts of living with diabetes, and encourage diabetes peer support and empowerment.
PWDs rely on Diabetes Tech - it literally helps us to live with less highs and lows.
Advancements in “smart” insulin pumps, CGMs, and more accurate glucose meters - all of which have the ability to communicate with one another - has created a diabetes tech eco-system helping us to lead the charge when it comes to living with diabetes, Instead of diabetes taking the lead.
That is amazing and so very much appreciated,
From the bottom of my busted pancreas - many thanks to Ascensia for sending me to #AADE18~