Tuesday, March 5, 2013


The headlines are hurling out of what seem to be a Dr. Seuss like machine. 
Words like "5-10 years" are being used systematically as if popping tic tacs into ones mouth.

Hope is being inflated like California gas prices.

And still, I sit here at my computer disappointed.

After 15 years of this I am a realist.  But you can't take away that part of me that instinctively hopes.

Hopers gotta hope, right?

Last week I attended a JDRF event and was given the news about Viasyte.  The woman I spoke to was beyond excited about the technology and explained that JDRF doesn't give millions of dollars to just anyone...they believe in this!  Very simply put, it is a packet put under the skin that would secrete insulin and that insulin would be protected from the immune system attack. 

So I say, "OK...I'll take 3.  And can I get a discount if I do the under the skin surgery myself?  I'm mean...I'm practically a doctor...I could totally do that."

Then she says, "And it will be available to the public in 5 to 10 years!"

And then my brain says, "DONG!  Did she really just say that to me?  She works for JDRF, please don't tell me she used the phrase '5 to 10 years.'  Please tell me she knows better than that."

But she kept insisting on the time line, and I kept covering my ears, "Lalalalalalala!"  I'm glad JDRF is sold on it...but don't tell me you've got something amazing until it's available to me...like "today" available to me. 

Seriously.  Don't.

And then yesterday, (oh, poor yesterday!) there was much hype about an announcement that would announce an advancement that would, more than anything, be a game changer.  (Which I get is a very poorly written sentence, but really...there was an announcement pre-announcing an announcement.)

The announcement stated that DRI (The Diabetes Research Institute,) had a breakthrough that "would change our life as we know it."  Real advances towards the cure we've been waiting for.

Last night when the site went live at midnight with the breaking news, I eagerly clicked over and watched this video:

And then I scanned down and saw this:

Really?  If you haven't figured out how to get this stuff working without anti rejection drugs...then you have no business touting this as THE advancement we've all been waiting for.

Now listen, lest you think I'm completely negative about all of this: Don't.

I am excited.  I'm excited to think that one day we won't have to count carbs, and bolus for meals.  I'll get in line for this BioHub thing.  That would be a dream come true for sure.  I'm all in.

But It's not changing our life as we know it today.  Or even next year.  Or even in 5 or 10 years.  So call me back when it is tomorrow. 

Or next week.  I'm flexible like that.
Look at the Omnipod debacle. They have been promising smaller pods for ages now, and people are seriously sweating bullets waiting for those suckers to come out. (And we are talking just months here, not years.) I hear it will be April now.  I pray for the podders sanity, it is so.

I don't care who we are...whether we say we believe there will never be a cure, or we are wide eyed looking at every advancement as THE answer to all our problems...either way, deep down...we have that small seed of hope. 

Watering that seed prematurely is just cruel.  It will grow and blossom before it's time...and then when it bears no fruit it will die, a slow painful death again and again until one day we won't believe anymore.

I truly believe that DRI is onto something big.  But don't puff it up and get families, and heaven help us, CHILDREN!? excited.  They need money to fund all of this, I get it.  I understand why it needed to be made into a big deal...I just think it could have been done more gently.  Like maybe, "We think we are on to something awesome, help us raise money for it!"  Not, "This is what we've been waiting for all our lives.  IT IS HERE!  IT IS HERE!  IT IS HERE!"

We are a fragile bunch, the DOC.  Sure we have strong cores, but our hearts bruise easily.

I hope that those with big things on the horizon handle us with a little more care in the future.  I've been in this game long enough not to get "too" excited about things.  But my heart aches for the newbies.  They are just beginning to strengthen their core.

Let's not break them before they have time to muscle up.


  1. I agree with you 100% on all levels and in all dimensions.
    I am a jaded optimist because living with diabetes has made me one.
    And "5 to 10 years" is something I've heard for 35 years - And scientists, researchers & Co need to stop using it. #fact

  2. Meri, I truly heart you. So need a big, and honestly just a good cry, because you're so awesomely spo-on. The hope wasn't all this and that for me in past days, but the hype and way it went down just makes me cringe. And want to sit in a corner and cry for all the emotions is brings up. I just feel so used

  3. Geez, I can't stop reading these posts! I totally agree with everything you're saying. In my world, we talk a lot about "under-promising" and "over-delivering". I wonder if anyone at DRI thought to mention that in their pre-release marketing meetings.

  4. Agree 100% Meri. Makes me wonder if DRI's fundraising campaign for this would be (have been?) more successful if they hadn't done the pre-release. I think that is the part that really has turned me off.

  5. Just FYI - I ordered the OmniPod last week and will get the new system this week, so the new, smaller Pods are shipping for brand new customers right now. Current podders are in the process of switching over.

  6. I have an amazingly insightful comment about this whole thing but it will not be available for 5 to 10 years...

  7. I cried twice in the last 24 hrs...once thinking it may be true (darn naivety!) then again when I realized I just sat through a commercial asking for money.
    I am usually much more wise about getting my hopes up, but lately I feel I need more to be hopeful for, and maybe this was a wake up call for me to realize that I haven't stopped wanting that cure. And I am excited for when it comes. But not 5-10 years excited, next time I'll wait for the moment when it is ready to get so excited.

  8. Realistically optimistic - and will there ever be a cure in our childrens' lifetime? Some professional doctors not in the Endo field say "YES, there will be a cure in your child's lifetime" and then their are others that are not as optimistic. Money, time, testing and lest not forgot the "Huge Moneymaker" Type 1 and Type 2 medical supplies and insulins the pharmacies are reaping.....it is a bit hopeful, but at the same time, discouraging.

  9. I completely agree with all that you stated...and I am only 1.5 years into this. I'm over the "5-10 years also".

  10. So well put Meri! Agree with you completely!

  11. ugh.

    and: right on, meri!

    i can't imagine the pre-announcement about the announcement had any good effect on the fundraising. everyone (and by everyone i mean i) thinks they are just big cheeseballs now. my NO. WAY. surprise at how BS-y the whole thing has been has completely interfered with my ability to understand how this is new, better, or different than the other cures.

    maybe when the dust settles it will make more sense/seem more exciting.

  12. Worth looking at is the DRI Foundation's IRS Form 990 at http://www.diabetesresearch.org/document.doc?id=1051 . While I do not doubt their sincerity in seeking a cure as soon as possible, there is a financial side to their activities. If you drill down a bit in the document cited above to Schedule A, page 2 (the 16th page of the PDF) you will see that in 2007 the DRI Foundation received total support of over $36,000,000 but four years later in 2011 it was just $9,000,000. Clearly a closer examination is a worthwhile endeavor and might provide a glimpse into their motivation for this "earth shaking" announcement. Personally, I think we are being played.

  13. Amen and amen!! Sometimes it all seems like such a racket, but then I remember that it is keeping my baby alive and making diabetes easier (ssslllooowwwlllyyy) to manage. Darn (and bless) that eternal hope and optimism! :)

  14. Okay you even made me smile and laugh about this icky situation. Could not agree with you more.

  15. I needed your humorous take on this. We have family and friends who get so excited every time they hear about "the latest cure just on the horizon." I feel bad being cynical but I'll believe it when I see it. Your humor helps make a serious subject lighter. Thank you! I hope the industry will take your comments to heart.

  16. Meri, you hit the nail on the head! I'm way past the point of being so easily excitable about a "cure". I try to focus on what new electronic technology is available that will make things easier to manage. Can't wrap my brain around the thought of a cure because we want it so badly now, but it still seems like forever away.

    Agreeing with Heather B., I did get "that" call from a family member who wanted to inform me (just in case I hadn't heard about it yet...the cure....) that all I need to do is "take Vitamin D". Seems I must have been Vitamin D deficient all along, and that's what gave me diabetes, so she heard on TV.

    Hopers gotta hope!

  17. And then yesterday, (oh, poor yesterday!)


  18. Fantastically written and I whole heartedly agree with every single word xx

  19. loving your take on all this as usual! I always feel like what goes on inside my head always is what actually comes out of your mouth (or computer). Thanks for putting it all to words for a mamma whose core is strong, but who's heart bruises easily.:)

  20. You nailed it for me here. I am four and a half years in and have enough cynicism to have taken this with a large pinch of salt. But, oh and it's a big but, the newbies of which you wrote, my heart did ache for them. They deserved better. xx


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