There were multiple sessions at #AADE19 discussing cultural under representation in diabetes support communities online and off, the importance of  language and why accuracy is critical when it comes to living with diabetes.

I made it a point to attend as many sessions as I could.

These sessions were overwhelming.

These sessions were amazing.

Currently, the landscape of the Diabetes Online Community is predominantly made up of people living with t1 and primarily caucasian - many stories are missing and many are not represented. Diabetes is multi-faceted and multi-cultural, so the online community needs to reflect that.

People of color (POC) need to be able to use their voices to share their experiences of living with diabetes.

People who live with Diabetes LADA and myogenic diabetes need representation.

The Diabetes Blame Game within Diabetes Peer Support Communities must go the way of the Dodo.People with T2, PWDs living with complications, those with language barriers, ALL need to feel that they can participate in Diabetes Peer Support Communities - both online and off - and without fear of blame, feeling marginalized, or feeling unwelcomed.

EVERYONE COUNTS.  EVERY VOICE MATTERS.

Not every person living with diabetes speaks English and there are others who aren’t verbal. There’s a Diabetes Deaf Community using American Sign Language (ASL) who are active, need to be acknowledged and want to be included.

Some people living with diabetes don’t have diabetes, they love and care for someone who does. Spouses need support too - and many get together for support and to exchange tips and tricks. Sidebar: Siblings and parents need support.

Starting locally is a great way of creating safe spaces for POC, people living with diabetes and other chronic illnesses, and others who feel they don’t fit the diabetes mold.

Diabetes peer support doesn’t always have to be about diabetes. It can be a group of people who happen to have diabetes who want to connect with others share common interests or hobbies - who won’t make a face when it’s time to check blood sugars, treat a low/high blood sugar, etc.

Be An Ally
If you see the Diabetes blame happening - shut it down.

If you see someone in need of support - help them get it.

If you’re not a POC or someone living in a marginalized diabetes group - learn from those who are and make sure they have a seat at every table. 

Diabetes Education Considerations for African Americans

Takeaways

“In order to make a change, you gotta be sick and tired of being sick and tired. And you must be willing to feel that change in your core.” Sharon Hawks

Re: HCPs engaging and helping diabetes clients: Take the time to develop a rapport first. People need to know how much you care first, not how much you know.

“Identifying what motivates an African American to make a change in their diabetes care is critical in developing a plan and establishing goals.”

Some of the questions Hawks recommends asking to help identify those goals are:

• What is the vision of where you want to go?
• What does living healthy with diabetes look like?
• What are your food and lifestyle assassins?
• Which ones are most important for you to work on?”

And continue asking questions so you can get to know the person.

Hawkes continually reminded the room that the cultural impact re: healthcare always needs to be at the back of their minds - especially nutrition. The primary reason PWDs of color don't follow dietary recommendations? They aren’t familiar with the foods mentioned.

It’s important to be satisfied with the small changes patients with diabetes make - and remember that understanding and encouragement leads to big changes.

Not The Word Police: What The Language Movement Is Really About

Jane K. Dickinson reviewed the evidence for changing the language of diabetes and used stigma, expectancy, labels, and scare tactics by healthcare professionals as prime examples.

Yep, PWDs have experienced all of the above and more.

Dickinson told those in attendance that the language movement isn’t only about telling people how to talk or what words to use.

Word choice is paramount and language does indeed matter - but it’s  more than that. 

#LanguageMatters is about changing the message, recognizing and halting bias behaviors in healthcare, and removing the stigma in order to help people with diabetes become empowered.

It’s also about healthcare professionals (and students pursuing careers in medicine) changing their mindsets about people with diabetes.

It’s about saying NO to scare tactics because they don’t work and discovering the "WHY" in why people are struggling with their diabetes. And saying YES to positive and empowering language and actions.

When healthcare professionals make that transition, positive change occurs.

Crossing those bridges leads to flipping a person struggling with diabetes to a person with diabetes who is empowered and whose quality of life has improved in all aspects.

Accuracy Matters - Why Accurate Meters Will Always Be Key

Gary Scheiner listed the following reasons as to why meter accuracy will always be a key part of diabetes management to a packed Product Theater full of people - he also added a few CONTOUR NEXT nuggets I hadn’t been aware of before today.

An accurate meter establishes trust in the CGM system and allows people with diabetes to see subtle cause and effect relationships.

Inaccurate meters miss low blood sugars - little differences mean a lot. There’s a big difference in a glucose of 70 and a glucose of 40 - especially in the amount of food needed to treat.

Hormones block insulin during low blood sugars, which is why people with diabetes have to deal with blood sugar rebounds hours after the fact.
Sidebar:  WHAAAT???

CGM Lag Time: Recovering from a hypo means very little blood flow is getting to the skin surface thanks to the hormones - those very same hormones that block insulin during low blood sugars. Using a meter to check blood glucose levels during this period is the most accurate option and should be encouraged.

During a CGM’s warm up period, fingersticks are needed for numerous reasons. CGM accuracy is less than stellar on the first day (and sometimes the second), because during the warm up period, the blood glucose algorithm needs time to sync with the PWD’s own algorithm.

Sidebar: I’ve been wearing a CGM since March and in my personal experience, I’ve noticed large inconsistencies with accuracy during the first 24 to 35 hours of a new sensor - requiring multiple (as in 7 or more) fingerstick calibrations to get into sync.

When symptoms don’t match the numbers on the screen, fingersticks are paramount. “When in doubt, get your meter out.”

Acetaminophen causes artificial rises on the sensor.

Closed loop systems, in particular, require an accurate meter.

Sensor vacations are important: People with diabetes have a lot of wearable devices - sometimes we need a break from all or at least one our bionic parts - both physically and mentally.

CONTOUR NEXT Nuggets

The CONTOUR NEXT Portfolio of meters all use the same test-strips - As in they are interchangeable. OK, why am I just finding this out now?

The Contour Diabetes App is super easy. As in effortless transmission of data to HCP, optional logging, remote report transmission to HCP, and 180-day app use with pattern recognition. According to Gary: “The greatest thing about this app is that the PWD doesn’t need to do sh*t!”  

OK, that works for me.

As always, AADE was a packed conference, loaded with great sessions filled with the latest re: scientific findings, tech advances and new products on show. I learned a lot and was delighted to have the opportunity to share these details with you.

#AADE19 was intense and quite frankly, my head is still spinning.

The First day of #AADE19 started off with an official name change.

AADE (the American Association of Diabetes Educators) announced that they formally changed the title of Certified Diabetes Educator (CDE) to Diabetes Care & Education Specialists - a term they feel is more representative of who they are and what they do.

The definition of a Diabetes Care & Education Specialist is: A trusted expert of the integrated care team that provides collaborative, comprehensive, and person-centered care and education to persons with diabetes.

The official launch of the title will take place in January, 2020. Until then, AADE will continue to work closely with stakeholders to formalize the transition re: branding and everything else associated with a title change.

Question: Will Diabetes Care & Education Specialists also be referred to as DCES or DC&ES? 

For a more details behind change and rebranding, read the official Press Release, HERE.

Next on the agenda was a Peer Support Collaboration Update Meeting with Diabetes Care & Education Specialists, bringing together AADE staff, board members and representatives from Peer Support Communities - a.k.a., the Diabetes Online Community.

Takeaways

This is the third year this meeting has taken place and AADE has come a long way since dipping its toe into the Diabetes and Social Media pool in 2011. 

This year they have created a workgroup with 25 members made up of people from the community and AADE to prioritize projects, based on suggestions form the AADE board and DOC.

Hopefully the workgroup will keep it simple and utilizes the language of friends, aka peers, because #LanguageMatters and bringing more PWDs from more culturally diverse backgrounds into the peer support mix is key.

The DOC is an excellent example of how heartfelt, honest, everyday language works when it comes to diabetes peer support. 

#AADEDSMS

The first U.S. Diabetes Social Media Summit supported by Ascensia Diabetes Care (#AADEDSMS) happened - and it was pretty damn special!

It was an amazing gathering of Diabetes Advocates and Clinicians coming together, learning from one another, and collaborating to make life better for people with diabetes in all dimensions. For more details, read all about it in my post below!

Peer Support Communities Corner

For the first time ever, AADE devoted on area in the Exhibition Hall to Peer Support Communities.

The space was brought together by Roche and was created to give the newly named Diabetes Care & Education Specialists one-on-one opportunities to interact with a sampling of the many peer support communities that already exist - increasing both awareness of what is out there and understanding of what peer support communities can offer.

If they understand more and feel comfortable about these groups, hopefully they will encourage the people with diabetes they treat to explore and use their services.

Peer Support Communities included, Tidepool, DiabetesMine, Diabulimia Helpline, Beta Change, Children With Diabetes, The Diatribe Foundation, Diabetes Sisters, Just A Little Sugar, JDRF, College Diabetes Network, and We Are Diabetes

The AADE HOOPLA

The day ended with the second annual AADE HOOPLA, a 3-on-3 Basket Ball Tournament consisting of 8 teams made up of both exhibitors and attendees.

Sponsored by mySugr and Diatribe, with Celebrity EmCees @diabetessocmed and @iamspartacus, and celebrity Referee @robhowe21.

The event was a different type of networking event.

One that allowed for fun, exercise, and a little (OK, a lot) of friendly competition on the court that allowed participants to let off steam and show off their mad basketball skillz… or not.

The music was loud, the EmCees working the mics never took a break, and all the teams played fast and hard.

At times, emotions ran high, there may or may not have been some carnage - both on the court and on the sidelines, and there was definitely laughter.

After three hours of intense elimination games, bragging rights went to last year’s second place finishers, Team Ascensia, aka Purple Rain, who won the final match against Diatribe 12 to 10, to take home the trophy and the title!!

On August 9th - from 1pm to 4:30 pm, a Diabetes Social Media Summit, supported by Ascensia Diabetes Care  (#AADEDSMS on Twitter) took place at #AADE19, in a conference room at the Marquis Marriott in Houston, TX.

Those in attendance (Diabetes Advocates, orgs, and clinicians) were all passionate about improving the lives of people with diabetes - including their own.

The Summit in Houston was part of a continuing series of Events hosted by Ascensia for Diabetes Bloggers and Online Advocates around the world - with previous events taking place at the 2018 Australian Diabetes Congress and ATTD 2019.

I had the honor of Co-Chairing /#AADEDSMS with @grumpy_pumper (Chris Aldred).

I was proud to Co-Chair, help organize and facilitate this session, and was damn proud of the representatives from my community at the table.

@Hangry Pancreas, @Heather_RoseW, @DiabetesSocMed,  @grumpy_pumper, (Grumps)  @czaquaredmama, @hopewarshaw, @erinmakers, @janeKDickinson, @diabetessisters, @collegediabetes,  @diabetesHF, @cwdiabetes and @diabetesalish (Me) … and those who were there in spirit and attending via Twitter.

Special shout out to @grumpy_pumper (Chris Aldred) and @Hangry Pancreas, (Ashley Ng) our international attendees from the UK and Australia.

I love that the Summit had global representation. Diabetes is global and no matter what spot on the planet we’re from or what language we speak, diabetes is our shared language and cadence. Learning from one another and combining our efforts in advocating for people with diabetes, no matter the type, is paramount. 

Why Is Ascensia Organizing These Events?

Ascensia Diabetes Care (@AscensiaGlobal) wants to engage with and learn from the Diabetes Online Community. Bottom Line: They want to better understand the perspectives of PWDs around the globe and provide a forum for the community to discuss some of the issues and topics that they find important.

I’m all for that. Diabetes connects us on a global level.

Ascensia’s Joe Delahunty kicked things off with an overview of Ascensia Diabetes Care, and then we went right into discussions.

Topics on the Agenda focused on decisions re: diabetes tech, the use of digital diabetes solutions, #languagematters re: diabetes, and #talkaboutcomplications, and quickly and organically the discussion branched into other areas.

The discussions generated at #AADEDSMS were passionate, engaging and non-stop. Here are my key takeaways.

Key Takeaways

Advocating for yourself and your diabetes needs to be stigma free.

Clinical stigma exists across the board. Healthcare professionals must leave judgements at the door and enter with an open mind and heart.

Speaking of diabetes stigma, diabetes isn’t an “Us Versus Them" disease when it comes to types or treatment.

The diabetes division created by diabetes stigma in all dimensions, including type, is something that’s been an ongoing issue within the DOC for over a decade and something those of us in the DOC have continually written about and discussed.

My type of diabetes isn’t better than your type - If you have diabetes, you’re my type.

Diabetes Stigma and judgement floods over into areas of diabetes treatment. If a person uses MDI or oral meds, it doesn’t mean they aren’t managing their diabetes. It means they doing what works for them. FTR: Currently, more PWD use MDI than wear insulin pumps.

And stigma is always present when we #talkaboutcomplications; the way people with diabetes (or loved ones with diabetes,)  judge PWDs with complications, and the way we (including PWDs, those who love us and our healthcare professionals)  talk about complications.

@grumpy_pumper told the room that no matter what diabetes conference he’s attending - diabetes stigma is always in attendance.

To paraphrase Jeff Hitchcock:  Some countries like India, Type 1 is stigmatized and hidden - not Type 2. A great reminder that diabetes stigma is a global issue, no matter the type.

Health insurance was touched upon, and how in the US insurance not only differs in each state - the landscapes change daily and many times without warning.

An Rx that your provider covered last month, is no longer covered this month. It frustrating, confusing, and it’s precarious to our health and well-being.

And health insurance companies need to focus more on fixing issues and illness, as well as reducing the risk of d related complications, and addressing the emotional issues of diabetes.

When the room was asked, Cherise Shockley’s definition of Diabetes Technology was: Anything that involves R&D and is designed to help me as a person with diabetes.

As in, EVERYTHING people with diabetes use to stay alive. Insulin; pumps, needles/pens, apps, meters, CGMs, off-label use of meds, etc.

Speaking of Apps, apps are great - but it doesn’t matter how great an app is, if the latest upgrade isn’t compatible with your smart phone!

Sidebar: This happens far too often.

Also: What if your HCP doesn’t know how to read the data? The fact is that they need to know what they are looking at and how to interpret it. If they can’t, the apps and digital solutions can just add to the stigma.

Judgement re: data and tech in healthcare is real!

When does the digital solution becomes the reason to choose ?

CDE and RN Chris Memmering, replied: When you want a person to record their data and they won’t use a logbook.

The importance of having a back-up plan in place re: diabetes tech. We all need to have back-up plans in case our usual technology fails.

The insurance landscape in the US is rocky, coverage changes in the blink of an eye, and device burnout and alarm fatigue are real issues of living with diabetes. 

Finger-stick checks and keeping up with pump basal rate conversions to MDI are critical and crucial must-haves.

Healthcare pros need to listen more and choose their words wisely.

Sharing the emotional side of diabetes and how difficult it can be to manage was brought up multiple times, as was the importance of celebrating little victories.

All of the above occurred in 3.5 hours and until we literally ran out of time. 

Diabetes Advocates and clinicians sitting at a table, learning from one another and collaborating to make life better for people with diabetes in all dimensions was amazing.

Many heartfelt thanks to Ascensia for hosting and I cannot wait to see what the future holds. #AADEDSMS !