Remember those fun educational toys from the past like Legos, Lincoln Logs and Speak & Spell, that not only were cool to play with but also taught us something?
Well soon enough, we PWDs may have one of our own: the new Hemoglobin A1C action figure!
Wait... a toy HbA1C?! Yep, you read that right. There could soon be a toy based on the three-month average test that those of us in the Diabetes Community know so well. Specifically: a plastic softball-sized physical model that looks like a whole bunch of glue gun globs melted together, representing the Hemoglobin protein molecule that snags sugar in our bodies and leads to our A1C result.
No, this action figure won't have a cape or costume, but fellow type 1 Casey Steffen, who runs a "boutique medical and scientific education studio" in Brooklyn, NY, hopes this toy can be commercialized and turned into an educational tool for endocrinologists, educators, and PWDs (people with diabetes) of all ages across the country.
Inventor Casey is a 37-year-old New Yorker who was diagnosed about 16 years ago, who says he's always viewed the HbA1C as "just a number" defining his blood sugar averages... But of course that number takes on all kinds of significance when you're living with diabetes.
Like many of us, Casey never understood what the number really meant, how it reflected what was going on in our bodies, or what it actually might look like if we could hold our A1C in our hand. I've personally had upwards of 60 of these tests throughout my life, and I know I've never been able to visualize the number's physical significance or use that to guide my daily diabetes management.
Casey's idea could help change that, using these "protein action figure" scientific models for education in clinical settings or classrooms, at conferences, or even in homes.
Visually, his model represents the protein molecule within red blood cells that transport oxygen from your lungs to basically every part of the body. In someone with diabetes, glucose attaches to that protein and can build up as a PWD's blood sugars run higher, and over time that sugar is transported throughout the body.
Every few months, this is what PWDs are getting measured in the lab or doctor's office — the amount of glycated hemoglobin in their system. Giving PWDs a way to visualize that number and better grasp what that means is what this is all about for Casey.
"We have an educational deficit right now as far as A1C understanding," he said. "In the context of the broader health care system, this test is such a major diagnostic tool, but it's a very confusing test and topic that people probably don't talk about more because they can't visualize what it means for them."
He started by creating a digital 3-D model and enlarging it 18 million times the actual size (!), to make it something that could be held in your hand. Making this model was just a creative experiment to see what was possible in using this data and applying a toy design to it, Casey said.
The Making of Scientific Toys
Diagnosed back in 1997 when he was 21 and finishing his undergraduate college years, Casey says his diagnosis meant that he had "just another life change to get used to." So, he adapted. But ultimately, his diagnosis shaped his professional career and influenced the path of this life. He'd planned to become a video game designer and had worked in San Diego for four years after school, but about that time he started coming to terms with how little he actually understood about his health.
"I didn't know anyone else, and no one in my family had diabetes, and so that steered me to grad school to become a medical illustrator," he says. "After that, I wanted to use my skill to help people better understand the science behind their health."
Casey formed a company about five years ago in Brooklyn called Steffen Visual Effects, which produces 3-D animations on scientific topics like how proteins function. There's now also a sister company, Biologic Models, that makes a handful of physical models of molecules and proteins. But Casey says diabetes and the HbA1C model wasn't on his mind until a chance introduction in late 2010 to the man who develops prototypes of action figures for McFarlane Toys, the world-famous company that's made best action figures for the likes of the Beatles, the Simpsons and the NHL. They talked action figure and sci-fi animations, but also chatted about Casey's work in the medical animation world and that led to the Hemoglobin protein model with a toy-component being weaved in: pop-on bits in different colors that represent sugar.
Actually, the idea for the A1C model hit him like lightening one day at his endo's office. They were talking about his A1C result, and Casey's endo mentioned that a physical model would be a great tool for doctors to use in explaining A1C numbers to patients, allowing them to "show and tell" how sugar attaches to the protein and what that process means inside the body of a PWD.
"This was always just a score and never really explained to me, more than just being a number that monitors my long-term blood sugar control. But here was a way to create a physical representation of that A-Ha moment, one that you can personalize and put more (sugar) on based on the number," Casey said.
"Basically, what I do is find data sets of proteins and molecules to tell 3-D animated stories. Working with molecular data is certainly one of the most interesting aspects of modern medical animations. Reconstructions from this data provides us with an observable example of an unseeable universe recreating proteins accurate at the atomic level."
Endo-Tested and Contest-Worthy
Making some initial models, they started exploring the reaction to this figurine in the community. Casey's endo Dr. Mary Vouyiouklis, now working at the Cleveland Clinic, started using it in her office with patients, and he took the idea to his local American Diabetes Association (ADA) chapter. He also took it to a fifth-grade classroom in Brooklyn to let the kids play with it. Casey says the kids loved seeing this Hemoglobin oxygen-carrying protein, and became more enthusiastic about the periodic table they had been studying in class.
Dr. Vouyiouklis has been using it with patients in recent months, and just one example of success was with an 81-year-old woman newly diagnosed with type 2. The model helped her to better understand the differences between her A1C and daily blood sugar data.
"People just want to hold it and get their hands on it," Casey says. "We knew we had something, and we had to find out how to get it out to people, into clinics where this can really make a difference."
One great opportunity for recognition came up late last year, when Casey came across the New York Top Makers Contest, a competition designed to "support design-driven production, promote a culture of innovation and commercialization, and foster the development of new businesses within New York City's industrial business, design and engineering communities."
The HbA1C Educational Kit is entered, along with about 55 other innovations that include a designer body splint; glove-worn bicycle mirror; traffic-tracking mobile device and web-based software; and vision-stabilizing device to help you read while running. If Casey's idea comes out on top, he could win $11,000 and also get connected with design-firm IDEO. Voting on the first round of the contest runs through March 27, and the Diabetes Community can help Casey out by casting a vote for his idea! Next rounds continue through mid-September when the final winner will be announced.
"Health literacy in this country is lower than it should be, and people — even those of us who've been at this for a while — just don't get what glucose is actually doing inside the body. All of that information, and how it leads to complications, is largely lost for people who don't have a scientific mind about that."
Meanwhile, the New York ADA chapter has agreed to work on a small pilot study using this scientific model with the help of Dr. Vouyiouklis. Casey says she's adamant about the need for something like this, because educators don't have anything visual to use in talking with patients about A1C scores.
As of now, they aren't available for individuals to purchase. But Casey is exploring that as he looks at feedback, and may start selling these on a small scale starting later this year.
Casey thinks this kit could be key in actually changing what doctors refer to as "compliance" when it comes to D-management. Instead of just knowing an A1C number, a PWD can picture the Hemoglobin model they held in their hands at the doctor's office. Maybe they can have one of their own at home, as a reminder of what they're trying to achieve.
The medical professional would have two models on hand, for comparison's sake: one without any sugar attached (the non-PWD's hemoglobin), and a glycated version for the PWD that they could even personalize to illustrate the person's individual A1C result.
Let's say you just found out your A1C result is 7.5%, down from the 8.0 is was at your last visit. The educator or endo could attach 15 blue pieces to the model and then take away a few "sugar" pieces to show you to the lower number -- for the first time ever, a way of really seeing how an A1C score improves. Then, the doctor and patient could pop a few more sugar pieces off to illustrate the desired A1C goal.
"This is a call to action," Casey says. "If we're really talking about such an incomplete or pervasive understanding among people across the world, then this (educational tool) could be something dramatically important for the next 15 years."
An A1C action figure sounds pretty cool, even without a cape or costume. It's probably closer to Zool Art Blocks, made especially for PWDs -- but with very noble D-educational intentions. We can't wait to see what happens with this model, Casey!