Discussing the Big Picture

It's been a little over a week since the JDRF interview from DiaTribe caused a stir in the Type1 diabetes community.  Lots of people got upset.  Some supported the changes & updates.  Some remained quiet...

Human nature says people don't like change unless they see it in a positive light and impact for their own life.  Yet we all know that change occurs all the time.  It's a normal part of life.  The type 1 community is well-versed in being flexible and the constant need for adjustment, change, and adaptation.  We also understand both the physical and emotional energy that is tied to this constant effort.  The T1 community understands that on a daily, monthly, and yearly basis it's essentially an endurance event w/ the true finishline being that one day when type 1 is "cured". 

There have been a number of really good discussions, summaries, thoughts, and posts that have come out this week since the interview.  Facebook, Twitter, the CWD forums, and many others were alive for days!  Some of these conversations deteriorated into caustic unproductive tones... We ALL know how personal and emotional this subject (T1 & a cure) is for everyone.  There are millions affected -- that means there are millions of management regimes, millions of physiological details, lifestyles, financial situations, burdens,  millions of opinions, emotions, thoughts, and desires. But I will make a request...  remember we are all bound by the same tie, type 1...  You don't have to agree with everyone, but BE COURTEOUS... plain and simple.

One of the best responses I read this week was from AllisonB on DiabetesMine.  I'm not saying her thoughts are the only ones folks should listen to...  But, take a deep breathe, relax, and just read it all the way through for some thoughts and perspective that may (or may not) differ from your own. 

Personally, I don't see a major upheaval in JDRF's stated "new direction" (and yes, that's my personal perspective).  That may shock or anger some folks.  But before people get mad, keep reading...

I've always made the comparison of living with T1 as an endurance event.  The facets of life w/ T1 are too similar not to see some correllation... and I'm not talking about endurance events WITH type 1, but as separate subjects correlated in challenges, aspects, emotions, hurdles, etc.

JDRF has always had the long-term objective of finding a cure.  That hasn't changed, even with the stated "50-50" focus.  The objective is there... the smaller steps or goals along the way are just to be stated more openly upfront.  That will include helping work on improved LIFE treatements such as reducing or alleviating complications, technological advancement, "meds", and lifestyle facets such as exercise. 

 "Glucose control" as an example, has been a research funding category that JDRF has supported for a long time, not just with this new president.  How many T1's now utilize a cgm that didn't 4-5 years ago?  How many of them use it now with some coverage benefit by their insurance company?  How many know that one of the greatest reasons most insurance companies changed their opinions of cgms from "experimental" to "normal" treament equipment was due to a JDRF funded CGMS project?  And how many people are sitting with anticipation of a closed-loop system (the Artificial Pancreas)?  That's a big project for JDRF funding as well (here's a link: Artificial Pancreas).  By definition these measures aren't "cures", but life treatment improvements.

"WE NEED A CURE!"  I'm right there with you... trust me!  I know we all want that more than any of the rest of these advances.  But here's some food for thought...

What good will a cure do if we don't get to that day completely healthy, fit, and with no major physiological damage?  What good will a cure be if we don't live long enough to see that day at all b/c of a nighttime hypo or other "freak" d-related issue?  How many of us were moved, frightened, grieved, and were distraught by the young kids that have passed in the last year... that we know of... b/c of T1?  The "life treatement" tools available to living with T1 have to be improved even more as we go forward.  And the benefit of those improvements are the contributing knowledge base that keep us moving toward that finish line.  We have to live UNTIL the day and be healthy ON the day for it to make a difference for each of us individually.  I was really struck by Scott Johnson's post on Feb 4 (I'll let you read it.), and from Dr. Sheri Colberg's article on outlooks and hypotheses (another I'll suggest for thought).

The CURE is simple to talk about and hope for... but the physiology is an animal of almost unfathomable complexity.  You're talking about the complexity of a human being, from sub-cellular to the environment & lifestyle of every person in the world. 

We are learning more & faster today than we've ever been able to in the past.  And still we "want more"...   Welcome to the world of an endurance event... where at various points along the way everyone wants it to be over, but we push past those "low points" and continue on knowing that if we don't quit, we'll get to the end at somewhere down the road. We just have to keep exercising patience and recognize that any step that works towards that end is a good thing.  So, continue to work with and support those organizations that make those steps toward the end.  I don't care which, that's your own call... I've always been a big supporter for DESA, CWD, JDRF, AFC, DRI, MAD-IDEA, InsulinDependence, TT1, HypoActive, T1R, , and many more (see my last sentence below!).

Just remember to keep you head up... be patient... keep at it... do your best... and be courteous! 
WE ARE ALL ON THE SAME TEAM! 

Take care --J