** or The One Where I Defend the JDRF – #whodathunkit

I’ve been known to criticize the JRDF on occasion … well a couple times … ok quite a few, but after reading a press release from the Juvenile Diabetes Cure Alliance (JDCA): JDCA Report:  New JDRF Logo Has Negative Implications For A Cure, I was actually more than a little offended and also quite dismayed that

1. They are so late to pick up on this,
2. The don’t seem to have actually talked to anyone from the JDRF,
3. They seem to have done almost no research on this such as the January 31, 2011 DiaTribe interview with Jeffrey Brewer. I mean you should know who the folks at DiaTribe are since they were covering research way before you kids hit the block, and
4. They should know by now that the term “Juvenile Diabetes” is just a tad outdated.

Before we get started, the JDCA seems to be a watchdog organization for Type 1 Diabetes research (more on them from DiabetesMine) and the stated mission of the JDCA is:

The JDCA’s mission is to direct donor contributions to the charitable organizations that are most effective at allocating funds to research opportunities that maximize chances of curing type 1 diabetes by 2025.

If you read the PDF that accompanies the JDCA analysis, you will note that the document is subtitled “Voice of the Donor for the Cure”.  While I realize that donations are important, no where in that detailed analysis can I find anything that places the patient as being anywhere near as important as a donor.  For example:

A higher quality of life is a worthy objective. However, the JDCA believes that most donors contribute for the reason of a cure. We also reiterate that the treatments/complications marketplace is already well served by commercial enterprises and an increased emphasis on managing type 1 comes at the expense of cure development. Curing the disease still remains a part of JDRF’s mission, but it is listed second, behind improving lives.

and

Another element in the rebranding involves a name change from Juvenile Diabetes Research Foundation to simply JDRF.  The word “juvenile” is eliminated in recognition that a large percentage of the people living with the disease are adults. The JDCA does not believe that JDRF’s greater commitment to help adults that are living with type 1 better manage their health reflects most donors’ desire to develop a cure.

In the DiaTribe interview, Kelly Close asks

Kelly: How is JDRF prioritizing the cure going forward?

Jeffrey: As I said, we’re moving towards a 50-50 split of activities and funding between cure and glucose control/complications.

Seriously guys, this was 10 months ago and if you had spoken to some folks at the JDRF as I have, you would have known that this has been in progress for a long time, changing the mission like that was not a choice taken lightly and they have taken both heat and gotten support for it.  As a matter of fact, internally, they are still experiencing resistance from some local chapters.

Now here is where I’m am going to get into the shortsightedness of your analysis.  I’ve been a Type 1 diabetic for over 40 years, and the cure has always been “just around the corner”.  Do you know why I spent the majority of those years totally disconnected from the JDRF?  Because after hearing the same thing over and over, I stopped listening, I stopped believing just as my friend Allison did, and I know that she is not alone.

You appear to have applied simplistic mentality to a subject that is so deeply personal in so many different ways to different people.  In effect, you left the patients and caregivers totally out of the equation.  Foolish.   Foolish because these children grow up and their caregivers will still love them as adults.  And guess what, those diagnosed as adults have people who love them too.  I certainly hope your “analysis” doesn’t do more harm than good.

Here is the brunt of it. 

If we don’t work to help diabetics live longer, better, complication free lives how many will actually SURVIVE long enough to see this cure we are all so eager for?

Are you honestly naive enough to believe that the cure is anywhere in sight?  I notice you did not give an estimate of the chances for a cure by your desired date of 2025 or mention that the “cure” may mean different things to different people and may not match your stated definition of a cure (which took me a bit of digging to find from your blog, btw…)

Let me put this into a “donor” frame of reference so maybe you’ll not be so confused:  85% of the approximately 3,000,000 diabetics are adults.  So instead of ignoring 2.55 MILLION potential donors, advocates, mentors, and volunteers why not embrace them and help them as they grow from being children to teens to young adults to parents to grand parents to whatever dreams they might have?

Just this week, the world had yet another Blue Candle lit, hopefully you guys recognize what that signifies, due to the fact that a young life was silenced by diabetes.  A young life that could have been saved by one of those “treatments” you seem to place so little value in.

I am not a parent of a diabetic child and I have the utmost respect for them and how they are able to do all they do. But, if I had lost a loved one and some organization had been promising a cure for as long as I could remember?  I’m sure as hell not going to give my “donations” to them.  Even more so if they had been tunnel-visioned on “some cure” when they could have advanced treatments to keep my loved one alive.

I’m Part Of The 85.

Are you?

© 2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

** Disclaimer: This post may upset some of you, but I’m not going to apologize for it.  If it’s not worth upsetting some readers, it’s probably not worth blogging about

On November 2, 2011, the JDRF ran a full page ad in both the NY Times and Washington Post.  This ad contained the picture a beautiful young child, Piper, right above the following:

Piper has type 1 diabetes.
One in twenty people like Piper
will die from low blood sugar.

Now, initially people will think that 1 in 20 children will die from hypoglycemia (low blood sugars or hypos).  It takes a little critical thinking and a lot of reading of what others think to realize that adults with type 1 are also included in that number and the time-span is a lifetime, not just a year.

But still, 1 in 20?  5%?  Over the weekend, many discussions have taken place about the accuracy of those numbers.   And as I was thinking about them this weekend, I was  reminded me of a conversation I had with my pump rep a year or so ago.  His estimate was that only about 10% of patients are actively managing their diabetes and making dosage adjustments, either with MDI or pumping.  He came to this figure, and there is NO scientific backing at all to it, after speaking with both patients and doctors.

Now, think of the people we know and have regular contact with?  How many of them are NOT in that 10% and do actively manage their condition?  When we apply that number to the relatively few other type 1 diabetic’s we know, does that make it so much more shocking?  Will 5% of the people in that I personally know die from a hypo event?   I pray not and I certainly would be devastated if it happened to a single one.  It’s tough enough putting up the blue candle when it is someone you don’t personally know.

Most of the people we interact with in our little DOC world are the ones doing it, as parents and patients they realize the importance of it and more importantly, realize that diabetes is a dangerous disease.

I personally believe that is the message of the ad.  “Hey world!  Diabetes is dangerous and can be deadly!”  When you look at that number it is a slap in the face!  Especially when technology is available that could help prevent these types of deaths, which is what most people don’t have a clue about.

Technology that the FDA just can’t quite seem able to wrap it’s sleepy. bureaucratic head around despite the fact that the EU seems to be quite happy with the current offering of a LGS (Low Glucose Suspend) option that would turn insulin delivery off from the pump when needed.

So let’s take that 10% “estimate” from a pump rep and adjust it so it’s just a “majority” of pumpers only make pump changes after seeing their doc/cde, this number becomes much more reasonable.   If the same numbers can be applied to the MDI patients, that number becomes even more realistic in my mind.  I know hypo’s were a huge threat to me when I was on MDI.

I’ve been doing this for a long time, and that 1:20 number scares me as well.   My dex awoke me to a 24 one nite, due to human error,  and living alone I was damn lucky to wake up at that point. Somehow, I was still cognizant enough to even take a photo of it.

But I’ve also had that dex go all ??? on me as well,  I regained consciousness and was paralyzed for lord knows how long before I was able to at least get the cartridge out of my pump.

Having read alot about it over the weekend, I think that 1:20 is indeed conservative.  We all know diabetes is a dangerous disease, if it takes something like this to spread some of that awareness then I am all for it.   Hell, I’ll be happy if even one person was to ask me “type 1?”

Where is all this going? Dunno, let you know when I get there.   The discussions and blogs that I’ve read about it have ranged from “OMG! Hell yes!  Tell it like it is!” to “Why is the JDRF using sensationalism for something our kids might see”?  and “Why are we wasting time and resources on something that is not a cure?”

Those are all valid perspectives.  As a child, I learned pretty quickly that I could die if I didn’t do what I was supposed to.  Though, back then… I digress

The Artificial Pancreas Project?  I’ve written before that I am very much a proponent of this.  With the cure and/or the ability to transform in to a mouse not even on the horizon, we need better tools.  Let me put that 1 in 20 number another way.  We need better tools so we can survive long enough to have a life, a family, and our dreams let alone a cure.

Sensationalism.  Now this one gets me a bit.  Besides the particular statement of “1 in 20″, how does this ad differ from any other JDRF marketing collateral that has a child on it?   Put an adult on that ad and all you’ll get is a “Well, he’s an adult he should know what he’s doing by now.”  But put a child there, you get an emotional response and those responses drive people to do things; be it donating, volunteering, voting for some political candidate or buying mac and cheese.  It’s all marketing and I’ll agree this does walk a thin line, but I’ve witnessed worse.

I attended a JDRF walk kick-off luncheon once here in Kansas City and one of the honorary co-chairs was the keynote speaker.  This speaker’s son had been diagnosed as a teen about 5 years previous, if memory serves.   At the luncheon, she had met some children, some as young as 3 or 4.

When she started to speak it just seemed to sink in that these kids were going to have diabetes, and everything that goes with it for the rest of their lives. She lost it.  Totally broke down in tears at the podium about how terrible it was for her teen but how much worse it was to be so little and have to endure so much from such a horrendous disease.

And that was a horrendous, inappropriate message to send to those kids, teens and young adults in attendance, not to mention their siblings, parents and loved ones.  That for the rest of their lives they would be afflicted with this horrible disease called diabetes.  Was it over-the-top sensationalistic? Absolutely, but t he worst part?  It was totally unexpected, at least I hope it was, the poor e woman just lost it when she should have been prepared.

I almost got up and walked out.

While the younger children were coloring and not having a care in the world, there were older children there who were picking up on every word she said.  Maybe your kids don’t totally “get it” yet, but I bet a bunch “got it” that day.   Oh, and by they way?  Your kids probably understand more than you give them credit for…

Is that number shocking?  Yes, yes it is and it’s about damn time.

November marks Diabetes Awareness Month and there will be all sorts of activities going on… T1 Day, The Big Blue Test, World Diabetes Day, blogs and events galore.

I haven’t been around on-line much lately, just to many things going on and honestly?  I’ve feeling exceptionally cynical about most things so I decided to just keep my mouth shut, for once anyhow.

But I wanted to participate somehow, so I finally settled on trying to leverage my cynicism to write something that someone might actually find useful.  So here goes…

For those of you not familiar with my background,  I have two kids, two cats, a career, bills, taxes… all the usual stuff.  I have also been a Type 1 Diabetic for over 40 years, with my only real complication being hypoglycemic unawareness.  Toss in a little clinical depression and viola, here I am.  Now, most people out in the wilds of our world don’t realize what type of commitment it takes to live a day with diabetes, let alone decades.

And of those who do understand or at least have an inkling have been known to ask me “You must really work hard at it.  How do you do it?” like they are looking for a magical formula on how to turn lead into working beta cells.  Normally, I just say that “I just work at it the best I can today.  Some days I do it better than I do on other days”

But the truth of the matter is that I ignored it for the most part.

For nearly 40 years, I was alone in it. Struggling with negative thinking where feeling miserable was normal.  Some sort of a cruel joke being played on me because, by golly, I was supposed to be dead 30 years ago.   At least that is what I learned when I was 7.  I learned I’d be lucky to see college.

So why am I still here?  I refuse to believe I am cursed any more so that pretty much narrows it down to God’s Grace or blind luck on the roll of the ol’ genetic dice.

I once met a doctor at a JDRF function where the conversation went pretty much like this:

Her:  What’s your connection to diabetes?

Me:   I’m a type one.

Her:  Really?  How long?

Me:   40 years

Her:   No complications?  You’ll be a medalist (referring to the Joslin 50-year medal)

“You’ll be a medalist” was just stated like it was fact.   And I was struck by how many people won’t be.  People who are working at it a lot harder than I was.

I normally don’t share all that with folks I’m just having casual diabetes related chats with.  If it gives them some hope that they can do it as well, then I’m all for faking it.  So what am I getting at here?  Do the best you can today.  Learn from yesterday and tomorrow isn’t here yet.

But most importantly?  You can do this but don’t you dare do it they way I did.

Today’s snarky comment:  If you are doing it like I did, I will hunt you down just to kick your butt… and steal your bacon.