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
“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.
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.