This weekend I drove up to Sacramento to attend the Taking Control of Your Diabetes conference. Going into the day, I had a number of assumptions and preconceptions about what TCOYD is and isn’t – most notably that this conference is geared towards people with type 2 diabetes.
This year TCOYD was being hosted in Sacramento’s Convention Center, at the same time as Comic-Con on the other side of the building (I wish I took pictures of the cosplay, I was very impressed). After opening remarks from Dr. Steven Edelman (Founder) and Dr. William Polonsky, there were two primary session “tracks” geared toward type 1 and type 2 audiences.
I did what I could to document observations and remarks throughout the day, so the rest of this post will be fueled by those tweets.
Prior to TCOYD, my diabetes conference experiences included Friends for Life and the American Diabetes Association’s Scientific Sessions. I think this skewed my expectations of both the conference’s material offered, and the knowledgebase of the attendees. Scientific Sessions is a professional conference, and people come from all over the world to discuss the latest and greatest in diabetes research. Friends for Life has a strong caregiver and type 1 diabetes focus, and those two groups are often quite in tune with diabetes advancements and commentary. The fact that there were so many people that had never heard about CGMs was surprising to me.
But by the end of the conference I came to the realization that I really am in a bubble of diabetes conversation. I’m not sure if that makes me the 1%, but TCOYD certainly opened my eyes to the fact that a number of diabetes “givens” are only given in the social circles I frequent. I need to do a better job of spreading the word about these things to the newly diagnosed with presented with an opportunity to do so.
Dr. Edelman covered a number of topics during his presentation, offering tweetable moments throughout. There wasn’t anything particularly revolutionary for me, but for the newly diagnosed, or newly empowered, these were the types of words that could help put someone on the right path.
Dr. Polonsky offered his insight into life with diabetes from an emotional perspective, again, offering insight that newcomers would find value in. I’m not a diabetes expert, but I recognize the emotional struggles that come with managing my diabetes. Sometimes simply being able to identify diabetes burnout is enough.
During both talks, the tone used when discussing the “diabetes police” bothered me. I understand that communicating with loved ones can be challenging, and I’m all for encouraging a constructive back and forth when people suggest what I can and cannot eat. The way Drs. Edelman and Polonsky covered these topics however, didn’t seem very respectful of the person with diabetes, or the concerned loved one. I wish I could better articulate what it was that they said, and how, especially because this feeling lingered for most of the morning. I’ll simply say that having diabetes doesn’t give me the right to be an ass to people who care but don’t know how to be respectful about their concerns.
After the opening remarks I found Manny, Kerri, and DiaTribe’s Adam Brown. They would be sharing a panel later in the day about Diabetes Apps. More on that in a bit.
The first of the type 1 sessions discussed current progress towards a cure, however you want to describe it. Between the moderator’s prompts and questions from the audience, it felt like every topic, avenue, and potential cure that was mentioned in a news outlet over the past 10 years was discussed. At the end of the session I came away respecting the scientific complexity that is diabetes, and a little bummed out that “5 years away” is still just as much of a farce as it was the first time I heard it.
Lunch was your standard low-carb extravaganza, but I was pleased to see carb counts included in the program. There was a dedicated section reserved for people with type 1 diabetes, as noted above. I’m not sure why segregation was necessary since everyone was offered the same food for lunch, but the vanilla mousse was quite tasty. So there’s that.
During the “There’s an App for that” panel, Manny, Kerri, and Adam described the various mobile apps they use to help manage their diabetes. Some of the applications mentioned were designed for diabetes-specific purposes, like MySugr. Others have a diabetes benefit, even if they don’t say so in the product description, like RunKeeper. Wearables also got their time in the spotlight, specifically FitBit and Misfit Wearable’s Shine. And there was even some time at the end to talk about Twitter, why it’s great, and how hashtags can help you find the diabetes community.
The next major session I attended focused solely on Continuous Glucose Monitors. At the outset of the discussion, the moderator asked for a show of hands for people who have never worn a CGM, have tried a CGM but stopped for one reason or another, people who wear a CGM infrequently, and people who wear CGMs regularly. I was surprised and encouraged by the variety of CGM perspectives in attendance, and noticed that a lot of the people who had worn a CGM but stopped because of frustration were either overwhelmed by the data or disappointed in the inconsistency and lack of accuracy from their devices. Anecdotally, it seemed like Medtronic’s sensors were the largest cause of frustration among attendees, but I know people who have had problems with Dexcom too, so this could have just been a skewed sample size.
My biggest frustration, and disappointment, throughout the conference was the behavior of Dr. Edelman during the afternoon sessions. The only way to get audience feedback and questions during the larger sessions was to have someone walking around with one of the microphones. Dr. Edelman happened to be the person walking around with that audience microphone. However, he seemed to spend more time trying to interject himself into the conversation and trading inside jokes with the moderator rather than let the panel, which I imagine he had a hand in selecting, and the attendees interact. On multiple occasions, especially during the CGM session, I could have been seen shaking my head in disappointment at this behavior.
If you’re the founder of the conference, and you had just spent an hour talking to everyone first thing in the morning, why continue to seek the spotlight? If you are the one responsible for planning and organizing this conference, why interrupt panelists and moderators just so you can make another point? Why, as the founder and figurehead of TCOYD, would you act like this?
It’s possible that I’m overreacting to all of this, but being my first TCOYD experience, I expected more from the guy who started all of this.
I think these conferences have tremendous potential. The fact that they’ve been around for 20 years speaks to the impact they are having with the diabetes population across the country. I was pleased to see that this was more than a “type 2” conference as I had previously assumed. However, I think that despite the value, this isn’t a conference for me. I have an idea of what it takes to control my diabetes. For the most part, I stay up to date on the advancements in diabetes technology. Particularly for the type 1 track that was set up, I didn’t learn anything new.
But for anyone new to diabetes…actually, especially for anyone new to diabetes TCOYD is a great opportunity to wrap your head around basic concepts and figure out what you should be asking yourself and your medical team moving forward.
3 thoughts on “A Few Thoughts About TCOYD”
Thinking a lot about your 1% comment. I am consistently surprised when I explain something about diabetes (or technology or medication) that I feel like I’ve known “forever” that the other person had no idea about.
1%? Not sure I’m comfortable with degrees of separation, but I totally understand your point. There will always be people who know, and people who don’t. Especially when technology is moving at the pace it’s on now. All we can do is inform when we get the opportunity. Thanks for the recap. Glad you got to reconnect with friends. Wish the conference was better.
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