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.

{ 10 comments… read them below or add one }

1 Katy March 6, 2013 at 7:08 am

I’m sorry I said something snotty about people who have cartoons of themselves. I now realize some of the best people in the world have these!

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2 Tom March 6, 2013 at 8:09 am

Worth noting is that “Diabetes Dad” received $202,463 from the DRI Foundation in reportable compensation as reported on their IRS Form 990 (page 8) at http://www.diabetesresearch.org/document.doc?id=1051 . He received an additional $9,122 in additional compensation. While I do not doubt his sincerity in seeking a cure as soon as possible, he does have a financial interest in their activities. Further, 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 it was just $9,000,000. Clearly a closer examination is a worthwhile endeavor.

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3 Sarah March 6, 2013 at 8:10 am

The “It was up to us” was what hit me hard as well. What a big disappointment.

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4 Tim Brand March 6, 2013 at 8:25 am

Great Post! I thinking many of the same things. Many at the DRI may have assumed we would be as excited as them, Tom included. I’ll will wait a few more days before I post about it. Many questions I have and ill put the same hat on when I wrote for EverydayHealth. Trust me, I intend on bringing the heat. There are questions that need to be raised. Thanks for sharing you thoughts.

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5 Aimee Croatti March 6, 2013 at 10:05 am

I agree with you – I was watching the video thinking, “Why announce this now? They’re only talking about concepts, nothing actually developed at this time…” and then it hit me at the end – “Ah yes, they want our money.” I believe the DRI is one of the most cutting-edge research facilities and perhaps they have some of the most viable concepts for a true biological cure, and I don’t mind giving money to them. But I, like you, believe we should also advance treatment technologies while we are waiting for a cure.

Which is why I also support JDRF. Many people believe the JDRF should be solely focused on a cure as the DRI is, and that they are wasting money on funding for the AP, but I applaud them for funding AP research and trials. Until there is a true cure, I want better treatments and technology for controlling my daughter’s blood sugars. Who knows? Maybe the DRI WILL find the cure even before the AP is fully developed, tested and FDA approved, but in the meantime, I am fully supportive of research that advances better treatments as well as a potential cure.

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6 Tamara (Mom of 10 year-old dd with T1D) March 6, 2013 at 2:25 pm

I agree with you Aimee and I support both the JDRF and DRI.

However, I don’t see the “biohub” as a cure. As Leighann pointed out, the biohub would require taking anti-injection drugs. I’m disappointed that it was touted as a cure, and on so many other aspects of the DRI’s announcement. However, I never had high hopes that a cure would materialize overnight. In a climate where the DOC gets advance notice of most diabetes news (e.g., new Dex, smaller Omnipod, etc.) and where the FDA is slow to act, I believe we would know well ahead of time of any possible impending (less than 5 years) cure.

However, if I were to wake up one morning and there was a cure, I’d be more than happy to eat my words!

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7 Allison Nimlos March 8, 2013 at 4:46 pm

The BioHub would not require antirejection medication. That’s the whole point of the BioHub, versus regular islet cell transplantation. The BioHub would, according to Dr. Ricordi, have localized antirejection elements to keep the immune system from attacking it. However, they still don’t address the complete and utter lack of available islet cells, so while this would be a cure for those who receive it, it would likely still be limited to the same population that is currently served by traditional islet cell transplants.

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8 Becky Wardle March 6, 2013 at 10:14 am

Thank you for your take. Very similar to mine. I did not stay up for their middle of the night unveiling (which to me is further cruel hype to a d mom that already gets up once a night). But a little part of me did mourn and a little part of me was pissed (no more reading d dad). I also will not go to the DRI online parent support group anymore after d dad said things like “your life will change tomorrow” and then the next day said to moms of newly dx , did you really think it was a cure ? Yes. Yes some did because of your hype. Also on the national news yesterday a child with aids was announced to be cured so why would they not? I will continue to hope and support a cure. But don’t mess with this already sleep deprived momma that would give her own pancreas if it could cure her little girl

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9 fraidy cat anonymous March 6, 2013 at 10:30 am

I can not believe someone pays that man to do this! Least appealing spokesmodel ever.

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10 Sarah March 6, 2013 at 1:27 pm

I was upset after both posts of his.
I get the feeling that he may not be in touch with reality for many families of children with type 1…and in my family it is not only my son, but my husband has type 1, too. Would I like to give to every idea out there for better treatment, a cure…sure. But I also need to make sure we have test strips, insulin, working meters, and food in our house. So, excited for future endeavors – yes, but do I believe it is solely my responsibility to fund it all, never, right now our family is focused on living the good life. One where each day happens, we are grateful for insulin and meters that read in 5 seconds with a tiny drop of blood. These things keep us happy. So when I saw the video and read the blog I felt lied to and used, as if our current situation is so awful that we need to do something NOW to make it better. I don’t fall for those tactics often, but this time I did. I was just thankful that my husband already knew it was a ploy so he didn’t feel excited, too…but we haven’t given up hope, we just keep living in reality. Thanks for your perspective, too.

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