Day 3: No PWD Is An Island
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~
Day 2: Family, Friends and D Tech – Let’s All Work Together
Before talking specifics re: day two of #AADE, let’s talk about vibes — because they were fantastical.
Validating, collaborative, overwhelming, inspirational, peer support, empathy and diabetes tech were key buzz words.
I found inspiration all around me as I was surrounded by Diabetes Educators whose mission in life is to help PWDs live our best lives with diabetes.
Emotions dialed up to 11
Each time a speaker gave examples of Diabetes Burnout from patients (and patients’ families), stories of PWDs struggling and or succeeding, or accounts of diabetes tech magic, I saw hundreds of heads nodding in agreement in unison and heard words of support rising up from the audience.
There were times my eyes leaked because it was emotional hearing diabetes healthcare professionals acknowledging all of the above — it was beautiful.
Day 2 Highlights and Takeaways
The first session focused on the transition to independence for teens and young adults.
As a former teen/young adult with T1 and current adult with T1 - I RELATE.
I have a vivid memory of transitioning from my Peds Endo to my first adult Endo - who said horrible things to me, and about me and my family — and offered the opposite of support. I never went back and carried his words with me for decades.
The speaker discussed the importance of recognizing common barriers like; teens having priorities other than diabetes, thinking that diabetes won’t fit into their daily lives, fear of stigma, being afraid of low and high blood sugars, family conflicts, and not wanting to accept diabetes as a part of life.
Successfully Addressing These Barriers
HCPs need to discuss diabetes without putting the Diabetes Police gear on, avoid trigger phrases, and attempt new ways to extract information when looking at d tech downloads. For example, instead of saying: Why didn’t you check your blood sugars that day? Try: What was going on that day that made it difficult to check?
Being cognizant that scrutinizing and scare tactics don’t work.
I repeat: SCRUTINIZING AND SCARE TACTICS DON’T WORK.
Instead, HCP need to help teens set up SMART GOALS:
I love the SMART GOALS acronym and I love what it stands for - little changes that develop into monumental ones!
Engaging Family and Friends More - Barriers and Opportunities
The next session carried the torch of engaging friends and family for emotional and peer support, and expended the conversation.
Here’s the thing: Family and friends have the potential to both facilitate and undermine our diabetes self-care and on a daily basis — this session discussed the barriers and opportunities and honestly, this was one of my favorite sessions of AADE18!
The first speaker pointed out that the demands of managing diabetes (no matter the type) can alter the PWD’s social world. It can either undermine or enhance PWD coping and emotional resources, and Diabetes Educators need to provide ongoing support.
The Diabetes Online Community (blogs, communities, etc.), were mentioned as providing diabetes peer support via social media, and mentioned a few by name.
Children With Diabetes - a great resource and support for children and adults living with diabetes.
The College Diabetes Network - an excellent resource, both emotionally and socially for young adults entering/currently attending college.
The second speaker spoke about diabetes blame and shame, diabetes stigma, and diabetes distress — as in the emotional burden associated with diabetes in the long term — and how they can affect self-care, quality of life, anxiety and depression in PWDs.
Sidebar: If you don’t think depression and diabetes go hand-in-hand — guess again! Depression has a negative impact on blood sugars. #FACT.
The speaker reinforced that negative language by both the PWD and diabetes HCP are major barriers. #LanguageMatters.
The final speaker (a pharmacy student and T1), focused on how family members (parents and siblings), of PWDs are affected by a diabetes Dx. She then expanded the definition of family to include aunts, uncles, grandparents, cousins, and friends who are family! I AGREE!
Sidebar: This part made me tear up because diabetes impacted my own family on so many levels — it caused stress fractures that are still being felt decades later. EVERY PERSON IN THE FAMILY FEELS AND DEALS WITH THE STRESS OF LIVING WITH DIABETES.
The final session of the day for me was about accurate glucose monitoring and why it will always matter — even if the PWD wears a CGM.
If You Wear A CGM - Meters Are Still Crucial
Glucose meters alleviate data overload re: CGM data, alarm fatigue, and lag time.
IMO: Diabetes technology is both wonderful and can be incredibly overwhelming — accurate options are key — as is being able to take an “insulin pump and or sensor vacation.”
If you wear a CGM and take acetaminophen or your BG symptoms don’t match the number on the CGM, you will need to check via a blood glucose meter.
If you’re waiting on your CGM supplies, switching coverage, or are having issues with your insurance re: sensor coverage, finger-sticks are crucial.
The more accurate the meter, the better it can make the CGM - which of course makes sense.
During CGM warm up phases, finger-stick readings are key.
The speaker pointed out that when there’s no value on the screen, or when trend arrows or glucose are rapidly rising or falling — the PWD must do a finger stick.
If the PWD is recovering from hypoglycemia and numbers start to climb — yep, finger-stick
Glucose meters are required for calibration for Medtronic, Dexcom G4 and G5, and Senseonics CGM.
Hybrid closed loop sometimes asks PWD to do more finger-sticks.
Meters are important in all of these situations and accuracy is critical.
The Diabetes Technology Society, did an independent Blood Glucose Meter Surveillance Study of 18 meters, only 6 of the 18 passed all three times at 100% and received the Diabetes Technology Society’s Seal of Approval. Ascensia’s CONTOUR NEXT was the only one that met the ±10% accuracy standard.
Some Things I Didn’t Know About The CONTOUR NEXT
Tiny blood sample size and with the ability to reapply blood sample within 60 seconds if the first sample isn’t enough to do the job. WHOA - That’s going to save us a lot of $$!
Wide range of temperature and humidity range. Did I mention that I love the beach?
CONTOUR NEXT ONE connects with the CONTOUR DIABETES app — this dynamic duo has the ability to I.D. patterns/trends in blood glucose results, and divides those results into 4 Pattern Groups and 14 Patterns. WHAT?!
FTR: I’m considering a CGM - but I’m a strong believer that accurate glucose meters will always be a part of PWDs’ diabetes care — and this session proved it.
Day 1 of AADE: Mixing with the Diabetes Master Mechanics
I’m happy to have another Ascensia opportunity to share my experiences as a person living with diabetes, attending The American Association of Diabetes Educators National Conference, held on August 17th through August 20th, in Baltimore, MD.
SHOUT OUT TO THE DIABETES EDUCATORS
IMO: Diabetes Educators are the “Diabetes Master Mechanics” of people living with diabetes — providing tactical; scientific, behavioral, and emotional diabetes support.
Not to mention the occasional (and very much needed), diabetes tune-up.
Much like diabetes, the job of a Diabetes Educator is extensive, all encompassing, always changing, and has the ability to be overwhelming.
Being able to attend the sessions at AADE was eye-opening and educational - I came home with new information, perspectives, POVs, and boatloads of hope.
Activity Trackers and Apps for Managing Pre-Diabetes
The first presentation I attended focused on a study re: activity trackers, phone apps, and daily email reminders in diabetes management, with the goal of promoting behavioral changes and empowering people living with pre-diabetes.
Sidebar: While participants in the study had pre-diabetes, self-management and technology are important to every single person living with diabetes, no matter the type.
While some study participants felt data input was cumbersome and others felt overwhelmed with the tech, many found the daily emails/reminders helpful and believed the real time data provided by Fitbits/apps encouraged them to change daily behaviors because the tech made them more aware and accountable.
Points Repeatedly Brought Up by the Presenters
1. HCPs (Healthcare Professionals) need to spend more time with PWDs (People with Diabetes).
2. Each person living with diabetes or pre-diabetes is an individual and needs personalized care.
3. Customizing tech promotes real time changes in the context of the participants’ daily life.
Personal Observation: Blown away how far AADE has come and in an incredibly short time, re: recognizing and promoting the importance of peer support for people living with diabetes - online and off; treating the person first, the diabetes second, and encouraging collaborative partnerships between the person with diabetes and the Diabetes Educator.
Also: The session was sponsored by AADE’s DANA website.
DANA stands for, Diabetes Advanced Network Access and was developed by the AADE Education and Research Foundation to support the tech access/assessment needs of diabetes HCPs.
Motivational Interviewing and Diabetes Family Dynamics
Devoted to motivational interviewing and successfully facilitating constructive self-management conversations between parents and adolescents.
Sidebar: As a former T1 tween/teen, I can confidently say that navigating the tween/teen waters with diabetes IS TOUGH.
Family dynamics; conflicts, length of DX and diabetes type, poor communication skills, the fact that teens KNOW EVERYTHING, helicopter parents hovering, and stress levels at Threat Level Orange — diabetes waters become stormy seas.
Diabetes is a family disease and HCPs need to recognize and address the needs of the PWD and the entire family.
In order to survive/thrive, #LanguageMatters, productive/empathetic dialogue/activities need to be encouraged and practiced.
Patients should be doing most of the talking in motivational interviews - HCPs should be listening.
Motivational interviews should encourage and help the person with D discover and explore their internal motivations for better diabetes self-management.
Finger-wagging and fear tactics ARE NOT motivators — especially when it comes to teens with diabetes.
I REPEAT: Finger-wagging and fear tactics ARE NOT motivators — especially when it comes to teens with diabetes.
Empathy should be practiced early and practiced often.
Insulet’s Omnipod DASH Product Theater
Yes, I covered the Omnipod DASH on day 4 of my ADA experience, but was curious to see the presentation at AADE. And I’m glad I did - I learned more about a product I most likely will be wearing in the future.
Full Disclosure: I’ve been wearing the Omnipod since July 31st, 2017.
150,000 people are currently wearing the Omnipod.
Insulet is expanding their clinical support.
More good news - Omnipod is approved for Medicare Part D.
The DASH’s Android as PDM allows for Bluetooth compatibility with other devices, including Ascensia’s CONTOUR®NEXT ONE and Dexcom.
The Omnipod DASH’s interface is easier to read than the current Omnipod and the “First Time Set Up” feature IS SUPER FAST.
The DASH has the ability to record pod site locations, and encourages and tracks site rotation.
As someone who switched to the Omnipod because of scar tissue on my abdomen, I like that.
POD UNIVERSITY is a thing and I like it. myomnipod.com/PodU
The DASH full market release is expected in early 2019 and I’m excited.
Diabetes and Digital Health
The last session on Friday was “a fireside” chat with Educators about digital health and diabetes.
This chat resonated with me on many levels.
Diabetes and digital health is a BIG DEAL because I remember when there was no such thing as diabetes tech. It. Was. Horrible.
People with diabetes are the ones who make the majority of diabetes decisions on a daily basis - it’s a no-brainer that having cutting edge diabetes technology tools makes managing diabetes easier.
One-on-one, d tech allows for shared decision making between the Educator and the person living with diabetes, encourages honest/non-judgmental communication between both parties, and provides real time/real life data.
D tech also promotes custom diabetes tailoring to fit the individual’s d needs because my diabetes has its own diabetes idiosyncrasies - yours does too.
D tech and Social Media helps with behavior changes and provides emotional support and encouragement. OF COURSE THEY DO.
The Educators presenting strongly believe that digital solutions promote positive health outcomes, and pointed out that according to the diabetes math, people with diabetes spend 0.007% with their diabetes HCP per year.
According to my iPhone’s calculator, that means that 99.993% of the time, we are handling D on our own.
Finally, it was mentioned that people with diabetes were given over 1000 diabetes tasks per year — but between you and me, it sure feels like a lot more.