I haven’t had occasion to talk much about it yet, but in November 2014 Dr. Danny Sands said routine blood work showed my hemoglobin A1C was slightly elevated. That’s what they call “pre-diabetic,” so woohoo, I get the privilege(?!) of pivoting from the cancer world to learn about diabetes in its many forms.
Man, it’s complicated – I did everything right, lost 40 pounds, became a runner, and my A1C went up! That’s how it goes sometimes, according to my friends in “the DOC” – the “diabetes online community.” Managing diabetes is complex – lots of work to do every single day. That’s one reason I’ve always said a healthy PWD (person with diabetes) is the archetypical e-patient (engaged patient).
I’m at a diabetes conference (more on that below), and last night I saw what may be the most perceptive, smart, patient-centered presentation I’ve ever seen. Ever seen. Anywhere.
I’m new to this field, so maybe this kind of thinking is commonplace here, but not from what I’ve seen. Lots to say about it, but for today here’s a starter post.
Seeing through blind spots: diagnosing and debunking stigma
In transforming any aspect of health and care, one obstacle occurs more than any other I’ve seen: it’s when people are out of touch with reality. And it turns out that’s a big problem with diabetes: a lot of the public has important misconceptions about what diabetes is, who’s “responsible” for having it, what’s true about people with diabetes, and so on. And one consequence of that is that the people who have the condition are often faced with stigma, sometimes discrimination, so sometimes they just don’t want to talk about it. And as with any medical condition, that helps nobody.
What to do?
One of the biggest diabetes drug companies is Novo Nordisk, and my hat is off to them for their direct, head-on, superb approach to debunking these myths. Example: many people think PWDs are basically impaired, so Novo Nordisk sponsors a team of world-class professional athletes (cyclists and runners) who all have diabetes. The cycling team is good enough that they’re working their way up the world rankings, with the goal of competing in the Tour de France in 2021 … the 100th anniversary of the invention of insulin.
Last night I attended a Team Novo Nordisk (TNN) food-wine-and-info gathering that was so good I demanded :-) they send me their slides and the embedded video. Here they are. You’ll see:
- Interviews with TNN athletes about the goofy things people have said to them about diabetes
- Evidence that stigma is real for the patients, and most professionals don’t know it exists
- Terrific sociological research by Dr. Jane Speight in Australia about stigma
- Announcement of two new, validated Stigma Assessment Scales being introduced at this conference.
Please move through these slides – if you’re not interested in the academic work you can skip it, but please start educating yourself about diabetes by reviewing the other slides!
Email subscribers, if you can’t see the slides or embedded YouTube, click the headline to come online.
My highest kudos to TNN and Dr. Jane Speight for this work. Smart, perceptive, relevant, patient-centered, well done. More to come.
A note on this event –
I’m at the American Diabetes Association’s annual “Scientific Sessions” conference. I’m not here to speak – I’m here with two hats: on a press pass to blog about what I see from the patient’s perspective, and to collaborate with the amazing people from the diaTribe Foundation. I attended their “d16” workshop in January while I was in Palo Alto. It’s been a long time since I’ve seen such an intense, highly organized team of people attack any event or any topic. And I do mean attack – they are focused and coordinated. It’s kind of thrilling to think they want to hear anything from me.
The other day my first post from this event was about the #OpenAPS artificial pancreas. More in my next post on the scientific poster they presented.