Monday, February 12, 2007

The Role of the Media with Diabetes

Have you ever heard of these guys?


They are Captain Glucose and Meter Boy, two live action comedic superheroes with no real superpowers. Think of them as a cross between Batman & Robin and The Incredibles. Their mission statement is to "Educate, Enlighten, and Entertain people with diabetes of all ages" and that's pretty much what they do. According to their website, what "Smokey The Bear" did for fire awareness, Captain Glucose and Meter Boy will do for Diabetes awareness. They have a website at www.captainglucoseandmeterboy.com (in addition to a MySpace page).

The idea behind this public service announcement (PSA) is genuine and I think is a good idea. It was recently filmed in Hollywood and is now in the final stages of editing and will be ready for public viewing soon. A full-length DVD/video is apparently now in pre-production and the script is already written. They are are seeking sponsorship from diabetes related companies to pay for the full-length feature. Yet in some ways, I cannot help but feel a sense of unease about the whole thing. Its almost as if its placing the burden on patients to be aware and manage their condition without explaining why its even necessary, not suggesting that many cases of diabetes can be prevented, or explaining exactly what happens in those cases (type 1) that cannot be prevented.

Imagine (or think back, if it applies) you are a small child (perhaps 3-10 years of age) who has just been diagnosed with type 1 diabetes. You are old enough to know that something is wrong, but not yet capable of understanding all of the many details being thrown at you (after all, many adults are overwhelmed by it). Not only are you thirsty and sick, perhaps even dealing with DKA because the cells in your body have been without any insulin for so long, but think about how all of this information is presented to you as a sick, terrified child. Your parents may understand most of what they are being told (although chances are they are clueless as to what this all means in reality), but there's a very good chance the child is really left in the dark with the complicated words used in every sentence.

Although things have improved somewhat since I was diagnosed as a 7-year old child back in July 1976 (for example, parents are usually allowed to stay overnight at the hospital with their children, which was not the case when I was diagnosed), some things have changed very little during the past 30 years. For example, children are still visited by a parade of strange doctors, nurses, and lab technicians who are in and out constantly, and it seems like all they want to do is treat them like human pin cushions with various syringes, venipuncture tools, and lancets puncturing their body constantly in order "to help you feel better". I'm not sure I was convinced by this explanation in 1976, and frankly, I don't think kids today get explanations that are all that much better.

Furthermore, I have discovered that most people are taught the basics of managing diabetes, but few if any are taught much about the underlying disease itself or what causes it. Don't believe me? Consider this recent post from fellow blogger "Fat Doctor," which may convince you otherwise. We have to do better than that, and there's really no good excuse for it considering the world we live in today.

When I was growing up, we went to a retail store to buy music, but today, most kids download to their iPod whatever songs they want -- instantly. Even the CD is becoming an anachronism. They may have access to 250 channels on television (not limited to ABC, NBC, CBS, PBS and maybe a few independent stations for good measure) including 24-hours of cartoons on channels like Boomerang by Cartoon Network. Kids today can order movies via pay-per-view without visiting the local Blockbuster. So why is it that medicine does such a lousy job of explaining what's going on to kids with diabetes? Its not easy to imagine what might be going on inside the body -- and the location behind the lower portion of the stomach make the pancreas extremely difficult for doctors to image even with sophisticated equipment like MRIs.

Technology aside, from my experience living in various locations across the country, I've discovered that "diabetes education" consists exclusively of managing and treating the symptoms of the disease, but provides little (if any) education about the underlying disease itself. Why? Is it a big secret or something?

But think for a moment how things could be. For example, in the midst of the traumatic experience that children (or adults) go through immediately following their diagnosis, why couldn't the doctor or hospital just show the child (or adult) a short (maybe 20 minutes) DVD showing patients exactly how autoimmune destruction of the beta cells found in Islets of Langerhans occurred, leaving them with a disease that can be managed, but so far, not cured? At least this way, they could better comprehend the burden of managing a chronic disease that is about to be dumped on them. Not only could it be informative, but also entertaining.

Its not like we don't have any precedence doing this. There's even a simulation ride at Disney's Epcot Center called Body Wars on this very subject (the script for that ride can be found here).

Take a look at the following movie clips (which by the way, I searched all over to find online so I could present them all together here). These movies demonstrate exactly how my vision could potentially be accomplished:





Of course, in order to bring things down to a child's level (which adults could certainly follow as well), it might be better present it as a cartoon or use life-like computer animated graphics. The idea of shrinking people down for the purpose of traveling inside another human's body has been frequently used in animated cartoons. Many of these shows, including The Simpsons, Futurama, Sealab 2021, The Fairly OddParents, Rugrats, Jimmy Neutron, ReBoot and even Spongebob have directly spoofed Fantastic Voyage. For example, in The Simpsons episode from Season 16, (entitled Treehouse of Horrors XV: "Marge and Homer in the Belly of the Boss") which aired on Nov. 7, 2004, the Simpsons are miniaturized and injected into the body of Mr. Burns.

In 2001, a major motion picture called "Osmosis Jones" kind of approached this, except that the story was not about diabetes (but could probably be modified) except that we'd need to show the beta cells being destroyed or wiped out. In Osmosis Jones, the story is about an evil and deadly virus (named Thrax) who arrives in order to kill the patient (named Frank) within 48 hours, just to get his own chapter in the medical books. The hero, Osmosis Jones, is accompanied by "temporary relief of symptoms commonly associated with flu" cold tablet (named Drix) and they are ultimately victorious against Thrax. I think patients with diabetes all still waiting for our happy ending, but imagine using animation to demonstrate what has happened to a child just diagnosed with diabetes. Since I've included so many clips, here's the preview of Osmosis Jones to give you a sense for what could be done:

I've grown tired of waiting for someone else to do something on this, so I've decided to pursue it myself. I think this is an idea that deserves to be pursued further. Hollywood has many connections to diabetes. Just take a look at this site if you don't believe me. In order too bring this vision to reality, a number of things need to happen. Ultimately, I'll need to start a nonprofit organization so that fundraising for this effort could be done to pay for production.

Initially, however, I will begin with a more modest task of preparing a script and then seeking out contacts that may be able to help with this idea. Just imagine the long-term impact such a DVD could leave with patients, and the sponsorship opportunities for major pharmaceutical companies who manufacture insulin, blood glucose meters and test strips, or any of the countless other products sold to patients with diabetes -- with their logo emblazoned on such a DVD. I will be doing surveys in the future aimed at establishing the need for such a product. I hope my readers will lend me support (mostly moral support, followed by input, etc.) as I pursue this.

6 comments:

Jonah said...

What was captain glucose for if he wasn't going to treat the low? What a letdown!

Lili said...

This is an excellent idea. My first experience with it was being diagnosed with diabetes and asking my diabetic friend (a Type 1 for 23 years) some questions about diabetes. He's very intelligent and well-informed on practically every topic. But diabetes? He had no idea. Now I realise this is somewhat common.

Jen Carter said...

Just love the concept of Captain Glucose and the Meter Boy.

As you so rightly say, there's not enough information for kids about what's happening to them.

My daughter, now 19, feels that she was kept in the dark about it all and is only just beginning to understand more.

Brad said...

First of all, let me commend you on your excellent Web Log. Very well put together and very informational for people who have diabetes or know someone that does. I think it is important that people who really do have diabetes take the issues in hand to create a network of communication like you have.

Your kind words about what Captain Glucose and I are doing are much appreciated. I’d like to comment on a couple of things you talk about in regards to our site and to diabetes education in general.

You said: “I cannot help but feel a sense of unease about the whole thing. Its almost as if its placing the burden on patients to be aware and manage their condition without explaining why its even necessary…”

I can understand that point very well. When I was first diagnosed with Type 1 diabetes (about 22 years ago) I was shown lots of videos about the terrible complications that accompany this insidious disease and a few more on injecting, testing, types of insulin, etc. Like most of us I was told, “The cure is right around the corner.” Man, that’s some corner! Luckily I had a doctor that took the time to explain the basics of diabetes and how the pancreas works, or in my case why it no longer worked. You are right that the cause, as well as the effect, should be taught to the newly diagnosed. Granted there is a lot to learn when first diagnosed and that is probably why the bulk of the education is directed at managing diabetes since it becomes “job one” for the rest of our lives.

In our planned upcoming full length DVD we do touch on why someone who gets diabetes is forced to fight that delicate balance of control. It is a part of our script along with some other “basics” of diabetes. The DVD will be geared for the newly diagnosed and the thrust of the project is to offer something other than the “scared straight” tactics that so many are exposed to at first. In the history of diabetes educational tapes there have only been a couple that were presented in an entertaining and informative way and we hope to offer what those others have not. In no way do we intend on becoming the only source a new diabetic needs when learning about the diseases, but rather a more light hearted approach that still gets the important message across. There is plenty of room and plenty of need in the diabetes information superhighway for all kinds of information to be presented. Your idea of focusing in on mostly the underlying disease and what cause it is a good idea and I’d encourage you to pursue it. However, you may find that the big companies are resistant to supporting grass root causes. After all, it is a business.

Another thing I’d like to address, at the risk of already being too long winded here, is the comment that Jonah posted regarding the “letdown.” He either didn’t really watch the video, or we failed miserably in communicating what we thought was a pretty simple idea. The reason Captain Glucose didn’t offer to “treat her low” was because she wasn’t having one. To the bumbling Superheroes she appeared to have the symptoms of diabetes because she just got done jogging…as she says “exercise helps me stay in good control.” This is an underlying message that we want to get through – people with diabetes are not victims, but their own personal superhero when they are proactive and take control. The humor comes from us, our ineptness if you will, not the disease or the people who have it or may be at risk for having it. We all have the ability to take control of it, instead of it taking control of us.

Again, thanks for the comments about what we are doing. Since Bill and I both have diabetes this is a project that we have a vested interest in other than just actors. I can truly say (unfortunately) that “this is a role that I was born to play!”

Best of luck with your own projects and continuing your excellent web log.

Brad Slaight
(a.k.a. Meter Boy)

Scott said...

Thanks everyone for your comments and feedback, especially Brad's long but welcome comments. I have no delusions that doing something along these lines will be a walk in the park, and the "diabetes industry" is notoriously cheap when it comes to sponsorship of anything. But then again, is anything worthwhile ever easy?!

Scott K. Johnson said...

Great post Scott (and how cool to have Brad himself reply?!)!

I think you have a wonderful idea and believe you would do a marvelous job.

I would be happy to lend support in any way I can.