Roche Social Media Summit Part 1: "We've Only Just Begun"

I am woefully delinquent in sharing my perspective on the 2010 Roche-sponsored Social Media Summit which took place on the last few days of June and into early July. I'm a few months late, although I must admit, it took me a while to get my brain around what happened. Of course, it was a holiday weekend right after the event, and then my office relocated to Manhattan from the suburbs on July 3, so upon my return from the event, I had some serious unpacking to deal with at work (the good news is the view from my new office is pretty awesome, overlooking the Hudson River (see HERE for a pic I snapped with my phone). Since then, one of my colleagues at work left the firm, so I've assumed many of her duties (as well as my own), so free time for blogging and other social media has been pretty limited. That's likely to be the case for at least the next month or two. Anyway, with all of my excuses out of the way, I can finally share some perspective on the Roche-sponsored summit with you, my readers!

Disclosure: Roche paid for my travel, lodging, and most of my food on this trip. Roche did not ask anyone to blog about the summit, nor did they pitch any products to us, but I have some perspective to share, and want to give acknowledgement where it's due, thus my reason for posting about it today.

Summit About More Than Social Media

First, let me begin by noting that Roche selected just a handful of diabetes bloggers and a few notable others (such as Kitty Castellini and Charlie Cherry), both of whom are much more active in traditional media (specifically radio) than they are internet-based media.

There were also a few individuals who don't fit into such a well-defined category, such as Brandy Barnes (Diabetes Sisters), who reaches out to women with diabetes. If I had to define her work, I'd probably say that her biggest achievement was really not in "new" media specifically, or even in media at all -- but an actual conference (the Diabetes Sisters Conference) that was actually years in development -- an old-fashion get-together (probably an under-statement, but as a guy, I wasn't privy to the event) where people with a common interest descended upon a venue and actually met face-to-face for a few days -- awesome! There's really nothing "2.0" about that, but was still quite a notable accomplishment and contribution to say the least! To be sure, all of these people have some presence online, but their contributions to the diabetes community is probably best associated with their offline presence. Depending on whose definition one chooses to follow, there are certainly hundreds, if not thousands of people in this collective space. In fact, Diabetes Living Today, which is a syndicated radio program, reaches into the millions nationwide.

Perspective: Last Year, This Year

Keep in mind that this all kind of began over a year ago, when the Swiss pharmaceutical, biotechnology and medical device giant Roche reached out to a handful of individuals in the U.S. who were seen as thought leaders in this new, patient-controlled world of social media. Many Pharma companies have gone ahead and plunged into the social media space and bombed big-time! Novo Nordisk, for example, is a company whose 2009 Twitter campaign for Levemir with NASCAR racecar driver Charlie Kimball was rightly criticized for being "sleazy spam" (and those were kind descriptions!). (see HERE for more background on that). Roche was eager to avoid that debacle by asking questions before plowing into the social media space, thus the company had a social media summit at their U.S. headquarters in Indianapolis last summer (see HERE for my post on that event).

The company did demonstrate that they've tried to actually listen to us, and I believe their efforts have been genuine. For example, in the company's Accu-Chek ads, the company is now showing meter readings that look more typical of a person with diabetes. Let me share the presentation they prepared for us:


Roche 2010 Social Media Summit Presentation

I have also embedded a sample advertisement Roche is now running so you can see the TV ad for yourselves, and you see the ad and visit the Accu-Chek website to see the spots. I had to watch it carefully, but there really are examples when people in the commercial have readings of 140 mg/dL and 147 mg/dL respectively, and we've been told the actors actually have diabetes themselves ... while the readings were not exactly too far from "normal" for a real person with diabetes (indeed, many PWD's would be delighted with those readings), but it's certainly a lot more genuine than the reading of 106 mg/dL pictured on the package of the meter:



Most of those who attended last year's Roche-sponsored social media summit in Indianapolis last year have been in the so-called "social media" space for a while (my blog's 5-year anniversary is this month [September], believe it or not, although I was hosting online chats on DiabetesStation.com and writing for Insulin-Free Times even before that). If I had to guess, I'd say that unlike some diabetes blogs that appear, draw an audience, then disappear as suddenly as they emerged -- for whatever reason, longevity may be one reason the company chose those who were invited (not to mention WHAT these individuals were doing and/or writing about). Indeed, many of us were some of the early-birds in the diabetes social media space. Whatever the reason, those of us who attended were generally happy to attend the event, mostly to meet and socialize with our diabetes counterparts, but also somewhat suspicious of our host's intentions. But as Will Dubois eloquently wrote:

"I decided to judge Roche on how they would deal with the loud, angry voices. I told myself that if the bloggers who were most vocal, most angry, most hostile to our hosts weren’t invited back, I’d know that Roche wasn’t serious."

He also added:

"As you might imagine, when I saw Chris 'Rock Star' Thomas in Orlando I gave him a huge bear hug. Both because I was happy to see him, and because his presence was proof that Roche was on the level.

Roche is genuine. Roche really does want to engage with us. Complete with all of our baggage.

It's the real deal folks.

So to me, that was the big news from the summit, not anything that actually took place there."


Now, for those of you who are reading this for the first time, at last year's event, there were some heated conversations about the price of test strips and some pointed criticism about how advertising for testing supplies features non-diabetic actors/actresses (even though there are millions of PWD's out there, undoubtedly some of whom are actors/actresses) and we also found it peculiar (or even offensive) that EVERY meter reading depicted in testing supply ads are in non-diabetic range. For those reasons, no one was really certain what would come of the event, nor were we sure we'd even be invited back! But as some of my peers have noted, Roche apparently did find the first meeting valuable, so the company decided to do it again, this year in Orlando.

Orlando June-July 2010: a.k.a. "Diabetes Central"

This year, Orlando, Florida -- best known as theme-parks central, as home to Walt Disney World, Sea World, the Universal Orlando/Islands of Adventure theme parks, the Wet & Wild waterpark, the Holy Land Experience Christian theme-park, and countless others -- also played host to the American Diabetes Association's Annual Scientific Sessions, as well as the J&J/Children With Diabetes (CWD) "Friends for Life" (FFL) Conference (which is held in Orlando annually). The venue for this year's event was at the same hotel as the CWD FFL event was taking place.

This year, Roche took a slightly different tact. Last year, they were getting to know us as a community, but now that they do to some extent, they decided to invite some guests from the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE) to join those of us in the diabetes social media space. Both of these interactions really deserve their own coverage, so I will focus on the ADA first.

American Diabetes Association Meets Diabetes Social Media

I was asked by Roche to moderate the discussions with the ADA (and the AADE). The ADA actually had a panel of guests. I introduced the patient perspective of the ADA, which was primarily one of a professional association of doctors, for doctors that claims to represent the interest of people with diabetes. I also discussed the issue of transparency (financial and otherwise) and conflicts-of-interest policies, and finally also noted that there is an elephant in the room that certainly needs to be acknowledged: the Juvenile Diabetes Research Foundation (JDRF), which many in the type 1 community feel better represents our needs than the ADA has.

Before I get too far off track, let me say that because I'm so late on writing this, I am also lucky enough to be able to list some of my peers' postings on the summit here, in no particular order:

Scott K. Johnson's "Scott's Diabetes Journal"
Post 1

Post 2

Karmel Allison "A Sweet Life"
Post 1

Sara Knicks (Nicastro)
Post 1

Post 2

Mike Hoskins' "Diabetic's Corner Booth"
Post 1

Bernard Farrell's "Diabetes Technology Blog" (not exclusively on the Roche event)
Post 1

Manny Hernandez, founder of TuDiabetes.org/Diabetes Hands Foundation
Post 1

Beatriz "Betizuka"
Post 1

Kerri Sparling's "Six Until Me"
Post 1

Allison Blass' "Lemonade Life"
Post 1

Kelly Kunik's "Diabetesaliciousness"
Post 1

Post 2

Riva Greenberg's "Diabetes Stories"
Post 1

Riva Greenberg's "Huffington Post" Submission
Post 1

Ginger Viera's "Living In Progress"
Post 1

Lee Ann Thill's "The Butter Compartment"
Post 1

Brandy Barnes' "Diabetes Sisters"
Post 1

Bennet Dunlap's "YDMV (Your Diabetes May Vary)"
Post 1

Post 2

Cherise Shockley's "Diabetic-Iz_Me"
Post 1

Sarah Jane's "Sarahndipity"
Post 1

Will, "Lee" or "Liam" Dubois (a.k.a. "Printcrafter") "LifeAfterDx--CGM Chronicles"
Post 1

George Simmons' "Ninjabetic"
Post 1

Post 2

Amy Tenderich's "Diabetes Mine"
Post 1

Post 2

Special Guest Participants: the ADA and AADE

The biggest news from this year was that Roche invited some guests from outside the social media community, specifically the American Diabetes Association and also from the American Association of Diabetes Educators (each organization met with us separately, so I think it best to address the AADE in a different post). Today, I'll address the interaction with the ADA.

Note that many were already in Orlando for the ADA's Scientific Sessions, which were held in Orlando a few days prior, and others were sticking around for the Children With Diabetes Friends for Life Conference. In any event, I was asked by Roche to introduce the "Social Media" perspective for each organization. The ADA sent a whole team of people. I introduced what I hope was good patient perspective of the American Diabetes Association, and that organization seemed to listen to the concerns expressed by the attendees and they responded to many (although not all) of the issues that were presented. If anything, the organization put on a good show, but whether that translates into progress remains to be seen.

I think my d-blogging peers covered that pretty well in their blog posts (see above), and Amy Tenderich had some excellent follow-up from both the ADA and AADE, so I won't reiterate that stuff, as you have the links to most coverage already.

But to cite an example of one issue that was raised by the social media community for the ADA: the looming shortage of endocrinologists. One of the diabetes social media participants (I believe it was Kelly Close) asked what, if anything, the ADA was doing (whether it is scholarships, or outreach programs, or something else) to try and make the field more attractive to medical students who are often drawn to specialties that pay much more, especially those assuming a mountain of educational loan debts to pursue medicine. While the organization was not really prepared for that question, they did explain some of the things the ADA does that hopefully help foster a welcoming environment for would-be endocrinologists in medical schools, including research grants. My take on that is that research grants are nice if you're already working in this profession, but do little to encourage medical students to pursue endocrinology as a profession. Clearly, they weren't prepared to answer this question.

Besides, when I introduced the ADA, I mentioned transparency and how only 25% of the ADA's budget goes to research. The ADA told us themselves that they are not exclusively a research organization, making them quite unlike the JDRF in tha regard, but that also means the ADA doesn't award nearly as many research grants as the JDRF does, so that response did little to address the community's concerns about the lack of people pursuing endocrinology. Clearly, the ADA has more work ahead of it if they wish to really address this looming shortage. Bernard Farrell did touch upon the use of telemedicine if I'm not mistaken, but the organization did not address that specifically. I would like to hear about what the organization might be doing to bring access to endocrinologists in remote areas of the country. Most endos are in urban/suburban locations, but shouldn't they be looking at technology -- even something like Skype or TokBox and simple webcams to actually facilitate face-to-face interaction with a patient who might be hundreds of miles away? This is well beyond just being theoretically possible -- many are already doing it, but the ADA could certainly play a role in helping to bridge this type of accessibility gap to patients in more remote areas. Although the topic of remote medicine did not really surface at the summit, I still believe it is one idea that deserves some conversation in the future.

Diabetes O.C. Tasked to Clean Up The ADA's Messes?

Sara Nicastro (also known as Sara Knicks) commented on the "I hate the type 1/type 2 'fight'" (I'm not certain there is one, but many people responded to that). She stated that "no other disease fights with itself", and I just bit my tongue -- experience has taught me that there are some issues when it's just better to shut up. But in 2006, The New York Times actually ran a story about this very topic that addresses this very issue, and the article's title said it all: "Beyond "I'm a Diabetic," Little Common Ground" (see HERE or HERE, note that the latter is a downloadable copy available from the JDRF).

But with plenty of time to think about it, I'd put it this way: breast cancer and prostate cancer are both cancers, but that doesn't mean they are even close to being the same disease. The same is true with lymphoma and all the other cancers. Yet no one ever confuses breast cancer with prostate cancer, yet they do so all the time with type 1 and type 2 diabetes, telling adults with type 1 diabetes that if they just exercised more or changed their diets, they could get off insulin (just like Halle Berry!) (see HERE or HERE), and one wonders why we don't always see eye-to-eye?

If I didn't have to tell every well-meaning but ignorant idiot that I can't eliminate my need for insulin simply by hopping on a bicycle more often, I would be so incredibly happy! This confusion tends to fuel the opposite of unity. While there are similarities between the two diseases, it's a bit naïve to think we all have the same perspective or challenges.

They are NOT the same disease, and we all face different and unique challenges in trying to manage it successfully.

Much of the bickering from within is due to widespread ignorance perpetrated by a stupid media that is largely perpetuated by organizations such as the ADA, which uses every opportunity to talk about how much progress towards a cure has been made, even though the ADA is so often taking credit for work that was funded thanks largely to the JDRF, but hasn't actually contributed a dime (financially or otherwise) to the work that was done. The ADA has also further blurred the distinctions between the two for reasons that are unclear, many fail to understand how putting us all in the same group might actually benefit either group. Call it a learning process. For me, I get so f'ing sick of explaining the difference between the two types, and I don't think I should have to do so; it's not my job and I think organizations like the ADA have actually made the distinctions less clear, not more clear.

But this widespread ignorance is not limited to the media. In fact, far too many patients with diabetes are completely ignorant that there even is another form of diabetes, or how the other form of the disease differs from their own. As The New York Times article eloquently wrote:

"To understand why Type 1 parents feel so strongly, it helps to understand that in the world of diabetes, their children are the minority. Type 2 dominates the public view of diabetes. Often, part of that image is that Type 2 diabetics are at fault for their disease."

Volunteers for the JDRF collect far more money per patient for type 1 diabetes than older and larger organizations that fight diseases with many, many more cases, including type 2 diabetes. Not surprisingly, many people with type 1 diabetes raise money for the JDRF, but not for the American Diabetes Association, with which the JDRF was formerly affiliated. More than half of the JDRF's annual budget, now over $100 million, is devoted to research to find a cure. Only the American Cancer Society and the American Heart Association, whose work affects vastly more people, spend more on research." By comparison, the ADA spends money on many issues, including advocacy.

My own endocrinologist was working on behalf of the ADA to address a lawsuit involving someone who was denied a job promotion because of diabetes. This patient maintained excellent glycemic control, yet was denied the position not because of her qualifications, but because she had diabetes. But again, transparency would have addressed these issues, and if the ADA was more transparent about where it's money is going, there would be no questions about how the money is being spent.

I have often felt that there should be a research organization dedicated specifically for type 2 diabetes, just as type 1 has the JDRF because there is evidence that the JDRF has indeed shifted the conversation, and treatment, of type 1 diabetes. Unfortunately, that is not the case with type 2, and patients end up paying for that in more ways than one.

I don't mean to dwell on Sara's comment, but these are just facts. I actually DO believe that the social media community has made tremendously great strides in bridging the gaps in understanding between the two types of diabetes, but the bigger question remains whether this is (or even should be) our responsibility?

Perhaps the American Diabetes Association should be doing more on this, after all, this organization has actually helped to create many of the misconceptions that exist among the general public. For example, they talk about progress made towards a cure, even though much of that progress was actually funded by the JDRF, and in the next statement, say something about how many people have diabetes and don't even know it. Trust me, there's no one with type 1 who doesn't know it. For the ADA to say both things is a very confusing, mixed message. I am involved in social media by choice, but I never volunteered to clean up someone else's mess (which I consider the confusion between type 1 and type 2 to be), and I'm not going to do so now. I make no apology for this, either.

I'll close with some photos in the group's collection on Flickr.



Closing Thoughts for the ADA: We've Only Just Begun!

Anyway, in closing on the discussion with the American Diabetes Association, I'd like to do so with song (anyone wonder why I consider myself a "Gleek", an addict to the show Glee whose Season 2 begins tonight!) so let me just close with some music I see as a fitting summary to my overview of the Roche-ADA Meeting. The first is the original Carpenter's song that probably got a lot of play in weddings. It's a classic, to be sure, but beyond having to endure kids today wearing bushy hairstyles reminiscent of the 1970's, I prefer the version from the 1990's tribute/remake album "If I Were A Carpenter" which is a bit more modern. Although Sonic Youth got most of the press for that album, Richard Carpenter wasn't a huge fan of their version of "Superstar", and frankly, I liked some of the other tribute/remakes a bit better. One of those is Grant Lee Buffalo's version of "We've Only Just Begun" below!

The Carpenters



Grant Lee Buffalo



My hope is that the ADA will hold true to their words, but I guess only time will answer that question definitively.

A Diabetes Meme

There are Twitter #Memes and there are various other recurrent "themes" that exist around the social media environment. I cannot even begin to address them all here. I won't even try, but let's just say they are similar to what used to what used to be known in the more innocent times as "Chain Letters" (see here for some background on that). They happen to serve a purpose (which can be good or bad) but let's just say that work is keeping largely out of the social media space these days. That could be an entire subject unto itself, but let's just say that since a colleague at work left the company, my time for blogging and anything else is pretty much consumed by other activities these days, and I'm spending quite a bit more time at the office. I'm now picking up the slack for two people (myself and someone else) these days, but I'm still around, its just that my time is consumed by other things. People with diabetes have a noticable footprint in the social media space and it seems only logical that there will occasionally be diabetes-themed memes. This one began with Kerri Sparling, but a fair number of others have been going with it (including Hannah, T1DisneyGurl, Jonah and George "Ninjabetic" Simmons just to name a few). I will share my diabetes meme with everyone and hope to be back to a more normal schedule in the not-too-distant future (if anyone with a marketing research/statistics background in NYC is looking for work, let me know!).

A Diabetes Meme

What type of diabetes do you have: Type 1

When were you diagnosed: July 24, 1976 (check out my CWD Quilt Square, and my sister's quilt square which is right next to it) at age 7 so that makes 34 years of hearing how a cure is "right around the corner" ... that, and how "lucky" I should feel to have a disease that can actually be managed (conveniently overlooking the not-so-small fact that it's a 24/7/365 job with no vacation and no real reward).

What's your current blood sugar: 106 mg/dL, not a bad reading as I head off to lunch!

What kind of meter do you use: I'm actually exhausting my remaining supply of One Touch Ultra test strips (which I use with the One Touch Ultra 2 meter), but I am migrating to the Bayer Contour USB meter/strips when those supplies are gone. I have a bunch of Bayer Contour strips just waiting for me!

How many times a day do you test your blood sugar: Anywhere from 10-15 times per day. Having no hypo signs for the past 25 years is a big reason for it. It might be easier with a CGM device, but the manufacturers (such as Dexcom) have done a really bad job getting insurance coverage for their devices, leaving it to nonprofits like JDRF to pay for it -- shame on them. Not only that, but the company never even followed up with me to ask if I got coverage, or volunteered to help with that, doesn't give me warm & fuzzy feelings about Dexcom, Inc.

What's a "high" number for you: Anything over 160 mg/dl at 3 hours post-dosage of insulin. Otherwise, it's a moving target because there's still insulin on board.

What's do you consider "low": Well, anything under 60 mg/dl is by definition low, but I have had instances where I've "felt" low at 63 mg/dL and other instances where I felt fine at 40 mg/dL but tested because it had been a few hours since dosing and had a nasty surprise that I couldn't quite believe. Given the +/- 25% accuracy 90% of the time with of our current meters, this explains why its possible to have such different responses to these readings.

What's your favorite low blood sugar reaction treater: I am partial to glucose tablets or Smarties, but there are times when I just cannot stand to turn my crowned molars into detrose grinders with their nasty, chalky consistency. That's one reason I have become somewhat enamored with the Dex4 Liquid Blast (also sold under the brand names of many pharmacy chains). Each tiny bottle contains exactly 16 grams of rapid-acting carbohydrate, yet does not require the brutality to one's teeth, and they work really fast! I'm partial to the Berry Blast flavor, but Lemon Lime isn't bad, either. These are not gooey like honey or pancake syrup, and they go down in one shot, just like a shot of tequila one might have at a bar, but without any gross after-taste or a need for salt! These things rock!

Describe your dream endo: I think I have one now. He actually listens much better and more frequently than he actually talks, which IMHO, is VERY important.

What's your biggest diabetes achievement: Let's see, I am still kicking without any notable complications after 34 years, so that's pretty good, wouldn't you say?!

What's your biggest diabetes-related fear: I have already had some not-so-fun hypo experiences and truthfully, for me, those were far scarier than any type of long-term complication. But I would say I think that kidney failure is probably the most grueling complication of diabetes. Sure, blindness or limb amputation sounds horrific, but you can adjust and move on with both. With renal failure, you need to have your blood filtered by a machine for several hours 4 times a week while you wait for a replacement organ for what could be years, if it ever comes. You may literally die waiting for a new organ. In the Netherlands, the system works differently: you are automatically an organ donor unless you explicitly opt-out. As a result, far fewer people in Holland die waiting for new organs.

Who's on your support team: My partner, my cat (yes, Phyllis is part of the team -- she's woken me from a sound sleep with hypos before, so that qualifies!), family, close friends, and of course, the diabetes social media/blogosphere!

Do you think there will be a cure in your lifetime: Do I think there will be a cure? Let me put it this way: a lot of progress in the right direction has been made, but the medical profession has consistently under-estimated this disease. While we could see some autoimmunity treatments for type 1 diabetes, my thoughts are that even these may not work in every patient -- if they are ever approved. The issue is that a treatment may work like a dream in one patient, and work like a placebo in another. The real concern in my mind is that drug companies may not look at whether a treatment works in certain segments because they're mainly interested in blockbusters, so they might just give up. Once that's solved, we still need to fix the other not-so-little problem: the immune system has destroyed what few beta cells exist. I don't believe there's a conspiracy of diabetes industry because this industry just isn't that well coordinated. But the fact remains that so many researchers and doctors are fixated on the idea of glycemic control that they're completely blind/oblivious to anything else. That's no way to cure a disease! My friend Deb Butterfield once eloquently wrote "In order for this disease to be cured, there needs to be a fundamental shift in the way diabetes is viewed. We need to close the gap between the perception of diabetes as a controllable condition and the reality that it is one of the world’s oldest, deadliest, and most pervasive diseases."

What is a "cure" to you: One thing I AM certain about: a cure must pass a few tests which are as follows: 1) It must deliver absolutely perfect blood sugar control at all times without testing, costly ongoing supplies and/or regular doctor's visits 4 (or more) times a year. Also, it must result in an average lifespan that is reasonably close to normal assuming no other ailments exist, although the damage done by years of diabetes may make this different for each patient. 2) It does not require a lifetime of immunsuppressive drugs or any other chronic drug and/or medical device requirements (although an occasional, semi-regular treatment "update" or "booster" would be acceptable). Also, it seems very likely that any cure will require separate components, such as one treatment for autoimmunity, and another for islet restoration either via transplantation or regeneration -- and even if both components require periodic re-treatments, that's still a cure in my book). The American Diabetes Association says that is not a cure, but I beg to differ, yet they are singing the praises for an artificial pancreas that doesn't even exist outside of a laboratory today. WTF? An artificial pancreas is not even close to a cure definition. For one thing, it requires costly ongoing supplies, insulin, infusion sets, blood glucose sensors, testing supplies for calibration, etc. These things must be adjusted, refilled and/or replaced constantly. Second, it is very costly and will be largely inaccessible to large segments of the population, who deal with runaway healthcare costs today: high deductible amounts, caps on durable medical equipment coverage, plus, who the hell wants to wear all that s#!t 24/7/365?

The most annoying thing people say to you about your diabetes is: that diabetes is somehow "mine" (which this memo just insinuated, BTW). I have diabetes because the medical profession has consistently failed to restore my health, not because of something I did or did not do. Almost by definition, that makes diabetes "theirs" and not "mine", so don't try to blame me for anything that doesn't go right.

What is the most common misconception about diabetes: There are a few, much of which is due to the public's widespread ignorance about this disease. First, that type 1 diabetes can be controlled or even reversed with diet and exercise. Second is that it is possible to live a "live a normal life" with diabetes -- this comes from diabetes educators all the time, and they are clueless. (Catch this thread on Diabetes Daily if you need evidence). The reality is there's very little that is normal about it. People need not allow diabetes to stop them from any of their personal goals or objectives, but do not lie and call it "normal". Sponteneity ... kiss it goodbye. Ongoing hassles, often when you need it least (like when you're sick with the flu or something), will become your new "normal".

If you could say one thing to your pancreas, what would it be: My pancreas actually works producing digestive enzymes which are the organ's primary function. It is the Islets of Langerhans that constitute less than 1% of the organ's total mass, specifically the pancreatic beta cells which produce insulin and amylin, that no longer work because they were killed by the body's immune system. To those guys, I would say "Take it like a man! Don't just roll over and play dead when these islet antibodies attack. Why were you such a wimp on this? You suck!"

D-Layed D-Art Day

When I heard about Diabetes Art Day, I wasn't sure I would even TRY to participate (or if I wanted to). For one thing, the community has already done several themed days and I wasn't sure I wanted to participate in yet another one. Plus, to be truthful, my days of artistic creativity seem to have gone into remission, quite unlike this s#!tty disease (which didn't even give me a honeymood period when I could temporarily stop using insulin for a brief window of time after diagnosis). It's not that I don't enjoy creating things, in fact when I was a kid, I really loved it. But these days, it's something I seldom do except maybe in the kitchen when I cook, which happens occasionally -- when time permits. I find my most creative work is writing.

That said, Lee Ann suggested the idea, I wasn't sure if I could really contribute much. But one of the comments on her blog posting suggested that kids could visit for some possibilities, which featured some creations by children and adults made from diabetes bits and pieces (or medical waste as it really deserves to be called!). The idea of children with diabetes expressing themselves in this manner was compelling (to me, at least). But what could I as a middle-aged person with juvenile diabetes who's had 34 years of living with this disease shape my perspective really add to the conversation?

Then, the idea hit me. When I was diagnosed at age 7 in 1976 (you do the math to figure out how old that makes me), my parents had been through the whole diabetes thing before with my older sister about 3 or 4 years earlier. They knew before I even had a formal diagnosis. In those days, kids were admitted to the hospital and they stayed for a week or even longer while doctors tinkered around with different insulins, ratios, scales, etc. By comparison, today, the kids might get an overnight stay of they're lucky, but managed care being what it is, tends to push them out of the hospital as soon as humanly and financially possible -- ready or not.

Prior to my diagnosis, I'd spent a month or so in the Tacoma, Washington area at my uncle (on my mother's side of the family) and aunt's house along with my maternal grandmother. It was 1976, the year of the bi-centennial, and was a very exciting for me at the time -- my first trip on an airplane and flying across the continent (I grew up in Connecticut, and Washington is on the other side of the country AND continent). Needless to say, my grandmother, aunt, uncle, cousin and I had amassed a collection of miscellaneous trinkets, memoirs, photos, etc. from my big trip. Mostly it was trashy stuff like airline baggage tags and the like, but I had a bag of that stuff. My mother, in her infinite wisdom, thought it might be a good idea to keep me busy while I was in the hospital to create a scrap book chronicling my recent adventure. At the very least, it was a good way to kill some of the many hours I might have spent watching the same syndicated "Brady Kids" (see here or here) cartoon reruns on TV that I would have endured otherwise. I watched those too, but the limited number meant that I had memorized them during my hospital stay.

Then, the idea hit me: I could try and use some of the work I had created as a 7-year old who had JUST been diagnosed with type 1 diabetes. Aside from a walk down memory lane for, my biggest challenge would be to dig up the scrapbook I created back then. My only challenge is that the book is now in a storage facility and their evening hours are only on Thursday evenings, so I don't have anything to share with you today. :(

Let me just not that this whole thing was created using the kind of stuff you might find in a typical first-grade classroom: construction paper, a shoelace to bind the book, magic markers, 7 year-old penmanship, etc. But I think it goes a long way towards expressing how I was dealing with things including the diabetes diagnosis at that time. I also remember hearing how "close" researchers were to a cure, and this came from the nurses at the hopsital -- not my parents who knew better. To anyone who has a child who's diagnosed: don't lie to kids; they aren't stupid and you are setting them up for enormous disappointment when it never happens. While I remain hopeful, I'm not naive. As my friend, author Deb Butterfield once eloquently wrote:

"Diabetes is big business with powerful economic, social and political forces opening and closing doors to our treatments and cures. Billions of dollars are made from selling products to the diabetic community. Developing a cure costs money, and until there is a cure, there is no product to market. There is nothing to sell. At the large diabetes conferences, healthcare professionals are inundated with information about more accurate and simpler blood glucose monitors and insulin delivery systems, but the advocates for curing diabetes, and scientific advances to that end are woefully underrepresented.

Unfortunately, without the attention-grabbing gimmicks of the companies selling diabetes management products, the message about curing diabetes gets lost and healthcare workers return home, telling their diabetic patients only about all the new technology that can help them manage their condition."

Anyway, while I was far less of a cynic in those days, so my "art" is probably less dark than it would be today, as my personality did not develop in a time-warp or vacuum. So I am postponing my Diabetes Art Day Post until later, when I have a chance to retrieve my good old scrap book made in the hospital. That will be my contribution. Stay tuned for my delayed D-Art post!