Remember Legos, Lincoln Logs and Speak & Spell — those toys that were not only cool to play with, but also designed to teach us something? Well now, those of us living with diabetes can get new interactive, educational “action figures” representing the hemoglobin A1C or an insulin molecule. Not just for kids!
These action figures don’t come with a cape or costume, but their creator still hopes to build a fan base among endocrinologists, health educators, and PWDs (people with diabetes) of all ages across the country.
It’s all the brainchild of Casey Steffen, a medical animator living with type 1 diabetes in Oklahoma City, OK. He’s been developing these educational figures at his Biologic Models company for years now, and is nearing the finishing point where he hopes to start making them available for bulk sale.
Yep, you read that right. This interesting toy comes in two forms.
One is based on the A1C “gold standard” test of three-month average glucose values those of us in the Diabetes Community know so well. It’s 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.
The other is the insulin model, which looks similar to the above with a number of glue gun globs melted together, but in different colors and shapes depending on what particular insulin is being represented.
The idea for these models hit Casey “like lightening” one day at his endo’s office, he says.a They were talking about his A1C result, and Casey’s doctor mentioned in an offhand way that some kind of physical representation 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.
“(The A1C) 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 ‘aha!’ moment, one that you can personalize by putting on more (sugar) based on the number,” Casey says.
And an added bonus: PWDs might want to keep the model on a desk or counter at home, to serve as a vivid reminder to take an insulin injection or do other important do other important diabetes tasks at a particular time of day.
Inventor Casey is a 44-year-old diagnosed with T1D back in 1997 when he was 21 and finishing college. He says at the time, his diagnosis seemed like “just another life change to get used to.” So, he adapted. But ultimately, the illness shaped his professional career choice and influenced the path of this life. He had planned to become a video game designer and had worked in that field 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, so that steered me to grad school to become a medical illustrator,” he says. “After that, I wanted to use my skills to help people better understand the science behind their health.”
Casey formed a company about a decade ago in Brooklyn called Steffen Visual Effects, which produced 3D animations on scientific topics like how proteins function. That evolved into a sister company, Biologic Models, making a handful of physical models of molecules and proteins. But Casey says diabetes and the A1C 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 action figures for the likes of the Beatles, the Simpsons and the NHL.
They talked action figures and sci-fi animations, but also chatted about Casey’s work in the medical animation world, which prompted him to explore the idea of Hemoglobin protein model with a toy-component weaved in: pop-on bits in different colors that represent sugar. People could add or subtract the to represent their current A1C level, in 3D living color. That’s the action in these “action figures.”
When starting out to create the first A1C action model, Casey says he mulled over how A1C is in fact “just a number” defining 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, or how it reflected what was actually going on in our bodies, or what it might look like if we could hold our A1C in our hand.
Casey’s vision was to 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 the lungs throughout 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 says. “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.”
“Basically, what I do is find data sets of proteins and molecules to tell 3D 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,” Casey explains.
He started by creating a digital 3D model and enlarging it 18 million times the actual size (!), to make it something that could be held in your hand. Making the first model was just a creative experiment to see what was possible in using this data and applying a toy design to it.
Since those early days, he’s adopted a less-expensive fabrication process and uses evolving models of 3D printing. His company has even teamed up with Shapeways in late 2018 to use their processes and newer 3D printer. Using that technology, Casey’s able to print more realistic-looking A1C and insulin protein models and tag them with different colors based on where the different acids would appear.
Wanting to provide something more than just A1C to help the Diabetes Community, Casey also added an insulin molecule to his portfolio.
He offers multiple models, representing everything from rapid-acting Humalog made by Eli Lilly and Novolog from Novo Nordisk, to other long-acting brands of insulin. Their core form is all basically the same, but varies a bit depending on the particular nuances of how the insulin’s made and where the amino acids might attach themselves to the protein inside the body.
“Just imagine if a doctor or educator’s office could offer these, as a way to explain how insulin works in the system?… And then you might be able to have one at home, where it could remind you to take your insulin,” Casey says.
Interestingly, he says he’s also envisioning a phone app that could be used to show interactive virtual models and even offer some additional education and feedback about the particular A1C or insulin model.
“Half of what I do is animation models, and the other half is animation itself. Augmented reality is bringing these two together,” he says.
All of these items could be included in some type of diabetes kit, sold to educators or even science teachers or diabetes camps for use in education. Casey is also creating educational postcards and materials to go with the models. Of course he’s also working on an online shopping tool for his site, though price-point for the models is not yet set at this time.
Casey and team have done their homework on the educational value of these toys, by taking some initial models into the community for a test-run. Casey’s former endo Dr. Mary Vouyiouklis who’d worked at the Cleveland Clinic, started using one in her office with patients. Casey himself took the idea to his local American Diabetes Association (ADA) chapter. He also took a figue into a fifth-grade classroom in Brooklyn to let the kids play with it. The kids loved seeing this Hemoglobin oxygen-carrying protein, and became more enthusiastic about the periodic table they had been studying in class, he reports.
Dr. Vouyiouklis’ patients were enthusiastic too. Just one example of success was an 81-year-old woman newly diagnosed with type 2, who said the model helped her to better understand the differences between her A1C and daily blood sugar data.
“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,” he says. “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.”
Casey thinks these models could be key in actually changing what doctors refer to as “compliance” when it comes to D-management. Instead of just getting an A1C number, a PWD can picture the Hemoglobin model, literally holding the results in their hands.
The idea is that a medical professional would have two models on hand, for comparison’s sake: one without any sugar attached (the non-diabetes 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, there would be a way to really see and experience 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.”
While an A1C or insulin “action figure” sounds pretty cool, the truth is Casey’s creations are more like a custom, diabetes version of EMIDO educational building blocks. They’re also worthy of high marks for very noble educational intentions. We can’t wait to see where you go with these latest models, Casey!