Monday, July 12, 2010

Helping Children With Diabetes (CWD) to Grow Up (a.k.a. Adult Type 1 Conference)

I've been kind of an absentee diabetes blogger since June 23, and I've also had a limited presence on Twitter and Facebook (as a reference, I have the same user name for virtually everything, it's "sstrumello" on Twitter, Facebook, as well as here on Blogger), and I feel bad about it. But I did attend the second Roche Social Media summit in Orlando during the last few days of June. It differed somewhat from last year's event, which I wrote on here. I cannot possibly hope to replicate all of what my d-blogging peers have already written on that subject right now, but I can refer you to some of their write-ups on the subject and will do so shortly.

The biggest differences were that this year's event was held in Orlando, Florida instead of Roche's U.S. headquarters in Indianapolis, Indiana. Orlando also had the distinction of being host to two additional diabetes events at the same time. This year's 70th Annual American Diabetes Association Scientific Sessions was held a few days prior and concurrently, the Children With Diabetes (CWD) Friends for Life (FFL) Conference (2010), which takes place each year in Orlando was also in town, giving Orlando the unusual distinction of being a diabetes magnet for a few weeks in late June through early July this year. The annual CWD FFL Conference is the subject of today's post, and I'll get to that in just a moment.

I'm not going elaborate on the Orlando events in this particular write-up, but I hope to add some perspective in a subsequent post in the not-too-distant future. Part of the reason I've been out of the social media world was because my employer was in the process of relocating from it's suburban Long Island, New York location to lower Manhattan on July 3. That meant that I had to pack up my office and pack it in moving bins in the days prior, and then when I returned, I had to do it all over -- in reverse (meaning upacking everything). For those of you who follow me on Twitter, I did share a snapshot from my new office, but for those who don't, here's the details. My new office is in the Financial District of Lower Manhattan, on 120 Broadway. It's literally around the corner from the NYSE, and the subway stop "Wall Street" has an exit in my new building which will be really nice in the midst of the cold winter (right now, the subway stations are hotter than Orlando during summer). Here's a link to my new office building, and the other was to share the aforementioned photo that I snapped with my phone -- it's from my personal office space -- a pretty awesome view of the Hudson river and what used to be the Deutsche Bank building, which was also victim of the 9/11 attacks! The latter is now being deconstructed floor-by-floor and will soon be completely gone.

Anyway, without going on endlessly about my personal whereabouts, today's headline, I hope, captures something that I believe a number of different diabetes organizations are now struggling with today. Children With Diabetes eventually grow up, and when they do, their needs evolve.

At this year's Roche meeting, we met with the ADA, and it became readily apparent that the thought of kids with type 1 growing up being reasonably healthy adults really sort of hit the organization by surprise, and the need for evolution in their care and education frankly kind of the organization by surprise, and they seemed ill-prepared for it. The JDRF, too, is adapting, albiet better than the ADA is. Earlier this year, the JDRF did launch an Adult With Type 1 Toolkit (see here for the press release, and see for more on that. But it is very much a starting point, and much more work needs to be done. A few years ago at the Diabetes Research Institute Foundation's annual research update (see here and here), that organization recognized the need before virtually any other diabetes foundation did with some content to address the needs of transition to adulthood at the organization's annual meeting, and found a VERY receptive audience to that content, and has since worked to expand it in subsequent annual research updates.

Anyway, although the Children With Diabetes organization has ALWAYS had great content applicable to adults with diabetes, the name CHILDREN with Diabetes may scare many adults who aren't as on top of things away, which is unfortunate. Since Jeff Hitchcock's daughter is now in college (correction: she has already FINISHED college, thanks to Allison Blass for updating me via Twitter!), I think the organization is seeking input to help design content applicable specifically to address the needs of ADULTS with Type 1 Diabetes (hopefully attracting them to the annual event), and they've told us they'll do their best to try to make sure next year's conference in Orlando addresses those needs. Fellow d-blogger Scott K. Johnson addresses that eloquently in a post this morning, and is asking that readers leave suggestions for content on his post today, so please visit here and leave your ideas as comments on his blog. Together, I believe we have a tremendous opportunity to address the unique needs of adults.

Some of my own ideas, which I've already sent to Scott Johnson, are as follows:

1. Exercise physiology: although exercise physiologists can and do become CDE's, an overwhelming majority are nurses, and the instructions for dealing with exercise more often than not are learned by the patient through trial and error. How about some content to address this more specifically?

2. Questions to Ask During Open Enrollment with Your Employer to ensure your employer sponsored insurance plan best meets the needs of a person with diabetes, and how to effectively evaluate the alternatives presented

3. Abbreviated BGAT (Blood Glucose Awareness Training) by developers from University of Virginia

4. Diabetes Burnout: Coping Tactics (Live)

5. When does a pancreas transplant (either a pancreas alone, with, or after a kidney transplant) realistically make sense, and all the other stuff your endo will NEVER tell you about how to do it (because chances are, he or she really does not know), where you can do it (there are like 36 centers nationwide, and numerous others abroad)

6. What does a CURE mean to patients, and why the ADA's 11-person "consensus statement" is an irrelevant exercise in semantics

So without adding too much, please visit Scott K. Johnson's blog posting today and leave comments for content you'd like to see addressed at the next annual CWD FFL Conference. Thanks!

1 comment:

Bennet said...

"ADA's 11-person "consensus statement" is an irrelevant exercise in semantics"

LOL but ow do your really feel? - I can lend you my sign.