Don’t Believe the Hype

by Leighann on March 6, 2013

Gratuitous Public Enemy song that started going through my mind immediately after reading the first post that set this all into motion:

(E-mail and feed subscribers click over for embedded video.)

I don’t even know where to begin or how to formulate my thoughts on this one.

I have donated time and money to organizations that research the artificial pancreas and those who are looking for a cure. I encourage and look forward to advances in treatment including faster working insulins, more accurate meters and cheaper test strips, and improved technology such as continuous glucose monitors and insulin pumps. I’m not an “eggs all in one basket” kind of person. I firmly believe that if and when there is a true biological cure, that I want my daughter to be as healthy as she can be. I also firmly believe that my child with diabetes will probably outlive her peers who are not as educated about living healthy.

Some parents are only focused on a cure. They were told at diagnosis that a cure is 5 or 10 years away. They grasp at that straw, perhaps as a way to reconcile what has happened to their child.

Should parents be hopeful? Of course.

My hope for my own child is for a happy, healthy life. Maybe that life includes the artificial pancreas, maybe it includes a true biological cure*, and maybe it doesn’t.

Each parent can choose what “hope” looks like to them.

Knowing that some parents get their hopes up only to be dashed, I was skeptical when I read Tom Karlya’s blog post on Monday. He announced that there was going to be an announcement.

I doubted that there was anything that would be announced the next day that would make me jump up and down for joy and rejoice that, wow, they have found the cure.

Being skeptical in no way makes me negative.

Being skeptical makes me a realist.

Seeing parents getting their hopes up began to weigh on me. I mean, come on, do you really think that the cure for diabetes is going to be announced on someone’s blog?

I do not think that Tom had bad intentions with his post This Could Be It…….What We Have Been Waiting For Since Diagnosis!!!!

But the following statements he made hint that a cure is closer than it really is:

“I have given the majority of my time to the Diabetes Research Institute (DRI), not because the Foundation hired me; not because they have a huge amount of nice people.  What they have had, and always had, is the same vision that we as a family have strived to achieve; to turn out the lights because the cure was found.”

“It is not pie-in-sky; it is not broken promises; it is real……very, very real.”

“After 2 kids diagnosed, 7457 days, 53,502 finger pricks and a million tears; we are now grasping to the end we have sought for all of this time: to turn out the lights forever.”

“I am a diabetes dad……….but it very well may be, for not too much longer.”

That last statement was taken by many parents and people with diabetes to imply that the DRI would be announcing the next day that they have found the cure.

At 11pm before I went to bed, the video on the DRI website went live. I watched. I nodded my head as I understood the concepts they were talking about and the issues that they have to over come.  I was hoping it wouldn’t end the way it did, but…it did. Watch this video if you haven’t already…

DRI BioHub — The Next Quantum Leap Toward A Biological Cure video:

(E-mail and feed subscribers click over for embedded video.)

…They want our money. This cure that they speak of? It’s up to us. If we really want our children cured, then we need to give our money to DRI to make it a reality.

This big announcement? It’s a PR fail in my opinion. There is nothing new in the video that DRI hasn’t already told people visiting their website or touring their facility.

There was no BIG NEWS on Tuesday of THE CURE as implied, intentionally or not, by all the hype on Monday. The video and DRI’s announcement was a fundraising ploy.

Many parents were disappointed. Some parents were outraged. Personally, I was hoping to be proven wrong.

But I wasn’t.

Did it hurt so much because it was “one of our own” that set us up for disappointment? Did it hurt because even with all their research and advancement the DRI is still 5 or 10 years away from the cure…something many have been hearing since the day their child was diagnosed, whether a year ago or 20 years ago?

I think it’s difficult for some parents who believed the hype and went to bed Monday night with HOPE only to wake up Tuesday to a plea for donations.

Further Reading

I tried not to read what anyone else had written until I could wrap my head around my feelings, but after I wrote this draft I turned back to my feed reader and tried to flag posts I saw written on the topic this week so you can read a variety of perspectives. Please let me know if you have written a post and I haven’t included it.

Diabetes Mine New DRI Mini ‘BioHub’ Organ Would Mimic a Healthy Pancreas (a great explanation of the concept)

With Faith and Grace Just Call Me “Negative Nancy”

Bigfoot Child Have Diabetes The Cure

Moments of Wonderful Promises and Definitions

Texting My Pancreas The Carrot

Diabetes Advocacy My Take on the Hub-bub About the Bio Hub

Our Diabetes Life Cure-O-Matic

Six Until Me News From the DRI.

Diabetically Speaking Low Interrupted

Diabetes breakthrough: Univ. of Miami researchers to unveil bioengineered organ (news story from Feb 22!)

And here is a similar line of research:

The We CARA Lot Blog: The Sernova Cell Pouch, next best thing to the pancreas actually doing its job! IMHO

And this, written a while ago, but worth reading:

T Minus Two The Meaning of “Cure”: An Open Letter to Health Marketers

And of course, read up on it yourself:

DRI’s BioHub Mini-Organ

And here are some more since I originally published:

Typical Type 1 The BioHub Brouhaha of 2013: An Animated Retrospective (complete with funny animation!)

The Perfect D In Retrospect, I Should Thank Him…

Ninjabetic Sort of Weighing In

Canadian D-Gal …and diabetics everywhere go ape shit… (profanity)

Naturally Sweet Sisters Keep the Hope Alive!

Bridget Writes The Impact YOU Have on Others

Your Diabetes May Vary Empathy. Honoring struggle without trite solutions.

Living Verical The possibility of a cure.

Adventures in Diabetes Parenting DRI BioHub — Bub

Flying Furballs The Cure Thus Far

*When I say “true biological cure” I mean a cure that’s not in itself worse than the diabetes. It would not include taking anti-rejection drugs. It would mean not having to count carbs or take insulin or give diabetes a second thought. It would mean true freedom.

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