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Everything Is In The Numbers

** 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 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.

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

    Well said, sir. Well said.

  • I agree. I was diabetic at 4. I was diabetic at 14. I was diabetic at 24, and probably will be at every 10 year marker of my life. But the technology that has progressed with each decade has gotten better and better. No cure yet? Big woop. I’m still alive because of people advocating for better stuff to make LIVING with diabetes better and easier. Yes, I was once a kid with diabetes. But now I’m an adult. That doesn’t mean I need better technology, much less a cure, any less than I did back then. People (and corporations) need to stop using babies and kids to get sympathy.

    • I agree Sarah, using children (and celebrities for that matter) in this fashion, bothers me at a very fundamental level.  It’s sad that it seems to work best that way…

  • Patrick McConnell

    Hi Scott,
    While I still Disagree with that Statistic, Thanks for a very well written piece…
    P…

    • Thanks Patrick. I’m not sure about the number either, but until someone does an actual study… we don’t even have the infrastructure in place to record or test for hypoglycemia at death from the sounds of things

  • Scott E

    Call me stubborn, but I don’t believe that 1 in 20 Type 1’s will die of low blood sugar.  There’s more to the statistic, more questions to be asked.  What makes a person “like Piper?”.  Are people “like Piper” defined as T1’s?  T1’s who don’t pump?  T1’s who use long-acting insulin?  T1’s who have gastroparesis?  T1’s who can’t afford food?

    Then there’s the interpretation of the statement “will die of low blood sugar.”  Does that mean that, 5% of the time, cause of death will be hypoglycemia (as opposed to cancer, poison, or getting hit by a bus).  I mean, everybody’s gonna die sometime, it would be naive to think that 19 out of 20 T1’s will never die.

    Or you could combine the two aspects.  Maybe people “like Piper” are children with Type 1, and in analyzing the cause of death for kids with Type 1, maybe 5% of those are due to hypoglycemia.  Which, quite honestly, I think is a pretty damn good number.

    I don’t mean to insult Piper or her family, or anybody for that matter.  But statistics can be manipulated to prove anything you want to prove, and I’m not entirely convinced that didn’t happen here.

    • You’re right, Scott, these numbers are pretty wide open to interpretation. I honestly do wonder tho if that 5% isn’t a conservative estimate.

  • Michelle Page Alswager

    Love that they are finally admitting that children – like my son, Jesse – can and will die from this disease.  Hate that it is to push the artificial pancreas.  Technology is an awesome thing but not if it decreases the body’s ability to handle something horribly wrong (like an extreme high or low that happens too quick to correct the error fast enough) when the artificial pancreas fails for a moment or two.  We’ve all seen a CGM that says 125 when you are 25.  Let the drug companies pay for the technology research because as far as I’m concerned death IS the worst complication and I hope the impact of this technology on their little bodies will be studied.  Get parents to stand up and take action?  Yes, please.  For a device? No, please.

    • Thanks for commenting, Michelle. I’m afraid I have to disagree with you though about the APP. Like Sarah commented earlier, technology continues to improve over the years and the APP is the next logical step. The better tools that we have at our disposal, the better our chances of living a long life. A life that is free of complications for as long as it can be.

      I am very cynical when it comes to promises related to diabetes, I’ve heard the cure is “right around the corner” for so many decades that I honestly no longer care, for myself anyway, when it gets here. We learn more and more and the more we learn it seems the less we understand.

      The APP is a technology that WILL have a positive impact on the the lives of diabetes of all ages and it is one hell of a lot closer than a cure.

      And, by the way, I will be more than happy to be a guinea pig if they need one for it. And I’ll also bet we could find several hundred adults in a heartbeat who would be more than willing to wear such a device until it is safe for the youngest among us.

  • Penny

    That’s for your thoughts on all this Scott. I’m feeling so many different ways about it and have declined blogging about it cause I still need to gather my thoughts. I’m not a cure junkie and I don’t tell my daughter that she will be cured in her lifetime, does that make me a bad mother? Oh well. I can’t do it to her, I see what the cure thinking has down to so many. I also don’t ever tell her I hate diabetes, or that she leads a horrendous life, or that it’s scary. I tell her she will be a grandmother one day, rocking babies. I do. For many reasons, too many to probably list here.
    But I digress. The ad, to me was to elicit the fear and that doesn’t sit well with me, but that’s just my two cents. What does it get us as a community? Does it get us moving forward? Does it get us more technology? Maybe for the short term, the shock and awe value of it all, but is that how we want to move forward? At times, I just don’t know.

    • Penny,

      Thank you for your comment, I totally think you are doing the right thing telling your daughter just what you have told her.

      Have you read what Bennet over at Your Diabetes May Vary (YDMV) wrote today? I think he makes a strong case that the ad was not directed at the diabetic community. Check it out at http://www.ydmv.net/2011/11/one-in-twenty-twenty-to-one.html

      In general, I don’t like scare tactics if they are used all the time. However, sometimes things just need a kick in the butt

  • Chris Sparks

    Thank you. A pleasure to read. I love your take on it all and I definitely feel the same way. Thanks for putting words in an order that I couldn’t to express this.  Did that just make sense? I hope so.
    -Scully

    • Thanks Scully… I think I smell whatcher cookin!

  • Kim

    when i was diagnosed at 12 y/o, i don’t think my parents ever got up in the night to check on me.  my first nighttime low happened when i was 16.  now keeping in mind that at that time i was taking 1 shot a day.  it wasn’t till many years later, while using MDI’s and levimir at night, that i became afraid of dying in my sleep.  for a long time i didn’t take my levimir.  and i mean A LONG TIME.  fear does strange things.  if it motivated me to stop taking my insulin, could it not motivate others to develop better tools so “my” type of fear never has to happen?

    • Wow Kim… I sorry you experienced that, I’ve read of others accounting of similar situations and fears. I hope you’re doing better now and that these tools do come about soon for all of us

  • shannon

    ugh, that 24 of yours is scary. glad you woke up. (and took a pic!) 😉

    thanks for this very thoughtful post. as much conversations that ad has started in the DOC, i hope that even a fraction of attention is being paid to it outside our community. that is the point, after all.

    also, the fact that our community even has something like the blue candle to be used as shorthand is as powerful a statement as any i can think of.

  • Bob P

    I’ve been reluctant to comment on this issue, because it could be charged (inaccurately, in my view) that I don’t have a horse in this race. But I’ve read a lot of stuff written by folks about the public perception of diabetes. Some believe that those around them don’t see the disease as serious. Some believe that people who look like me have come to be the public perception of the disease. Some believe that these perceptions diminish both private donations and governmental funding.

    I don’t want to comment on the ad itself, because I haven’t seen it. I certainly can’t comment on the 20% figure. But how can we communicate that the disease is serious without demonstrating its dangers? And is there a more effective candidate than an otherwise-healthy child to show that not everyone with diabetes looks like me? This particular ad may or may not have been the right approach. But I appreciate JDRF’s effort to get the message out in a striking way.