Have you heard about the JDRF’s aggressive campaign to fast track development of a viable artificial pancreas? Yup, the organization’s recently announced that it will pour $6.5 million of its research-support funds into development of continuous glucose sensors and other advancements that will expedite the realization of a fully functional closed-looped system.
This is EXCITING, for a number of reasons:
* Illustrates the power of one individual’s passionate advocacy. This whole thing got started because Jeffrey Brewer, one of the JDRF’s board members whose son has diabetes, got a prescription for Medtronic’s Guardian RT, the only continuous monitor currently approved by the FDA. But he discovered that the RT was unavailable. So the JDRF board approached Medtronic to ask what could
be done to make this technology more widely available. And JDRF’s new campaign ensued. Shows you what a group of empassioned parents can do if they put their heads — and their lobbying strength — together.
* On the other hand, this ain’t no bunch of irrational stage moms (and dads), either. The JDRF definitely requires due dilligence on research they’ll fund. They don’t want to waste precious dollars — and hopes — on anything not sanctioned by the scientific community. Case-in-point is the controversial work of Dr. Denise Faustman, whose promising results toward a potential cure were not repeatable by other researchers, and therefore passed up for funding by the JDRF. The point being that if the JDRF is backing work toward an artificial pancreas, chances are it’s an undisputable step forward that will actually make a difference in Type 1 patients’ lives soon.
* Tempering that last point, a fully functional closed loop system (i.e. artificial pancreas) may still take decades to perfect, due to the obvious risks associated with automating insulin doses. But what this push by the JDRF will do for us now is to help jumpstart development and approval of continuous glucose monitoring products, which will provide a whole new diabetes reality vs. our current life with “episodic” monitoring. Besides the Guardian RT, two other real-time sensors are being evaluated by the FDA now: Abbott’s Navigator and DexCom’s STS, both of which look highly promising, as in, I’d use one right now if I could!
If you want to read more about what it’s like to use a continuous monitor, visit Wil at his blog, LifeAfterDx. After years of suffering from severe hypoglycemic unawareness, Wil flew out to Austin on his own dime get himself a Guardian RT, which he also pays for out of his own pocket. He’s had some trouble with the insertion site, but still he would “triple absolutely” recommend the product to others, he says.
Also for further reading, you can download the JDRF’s paper on “How Close Are We to Closing the Loop?” in PDF format by clicking HERE.
Oooh, and finally, did you know: there’s even an Artificial Pancreas Center at Jefferson Medical College of Thomas Jefferson University in Philadelphia? Its director, Dr. Jeffrey Joseph, gets quoted in a lot of articles on “revolutionizing diabetes care,” like this one from WebMD.
Actually, JDRF had another doctor repeat the findings of Dr. Faustman, and she was successful. I’ll track down the name of the docter.
Found it! It was from the NYT article first written about Dr. Faustman a couple of years ago.
“In the meantime, the Juvenile Diabetes Research Foundation is financing an independent effort to replicate Dr. Faustman’s work. The researcher, Dr. Anita Chong of the University of Chicago, said her studies were still under way. But, she added, ‘so far, what we have done replicates what she has done.’”
And I hope you’re not saying that parents or even PWD who believe in Dr. Faustman’s research are irrational.
Hi Shannon,
First off, the JDRF has stated that the reason they don’t fund Dr.Faustman’s work is because her results were not replicable(?)
Secondly, I’m not saying anyone is irrational. I’m just pointing out that the parents who so passionately support research toward a cure are not jumping on every research bandwagon; rather, the group is doing its homework to check the legitimacy and universally recognized potential of any projects they fund.
well…
Though you don’t say that anyone is irrational, you do use JDRF’s decision not to fund Faustman as an example of their alleged diligence and as a foil to the image of irrational stage moms and dads.
And, the article you link to when you say JDRF took a pass on Faustman because her work was not replicable actually says, “Though the JDRF repeatedly chose not to fund Faustman’s research and subsequently criticized its merit, they have swiftly moved to replicate it. ”
Me, I’m a little disappointed in JDRF. I don’t see the artificial pancreas as a cure and they are supposed to be about the cure. It irks me that my JDRF cure dollars are tied up in an effort to move for-profit technology efforts because a board member’s kid has to wait… like much of the rest of the country… for a Guardian.
Just my two cents, important enough to me to delurk for the first time ever.
I agree with your 2 cents! I think it’s a better to spend 6.5 MILLION DOLLARS on finding a cure instead of on another expensive maintenance program that the majority of diabetics won’t be able to afford even if insurance eventually covers it. Their motto is dedicated to finding a cure, and an artificial pancreas is not even close to a cure. It’s another work-around. My 2 cents is I’m disappointed in JDRF also for decisions like this.
I just found this blog and think it is amazing. Thanks for all the time that you have put in to it! I have just entered the blogging world and feel that it is so helpful. We are trying to document my 10 year old son’s experiences with the Guardian RT. It is harder to blog than I thought. Jenny
untilacure@blogspot.com
I’ve come to rely on you, Amy, to keep me apprised of the latest developments in IDDM. Thanks.
Amy T and Emily, I echo what you said. I thought I was the only one who felt this way. I’m glad to know I’m not alone.
I’ve wondered about JDRF and Faustman for a while. Thanks for connecting the dots. All this talk about artificial pancreas is cool, but remember: insulin is not a cure!
I was promised a cure in five years when I was diagnosed twenty years ago. Right now I’d be REAL happy with an artifical pancreas.
Hey Art-Sweet: Amen to that!
I think a closed loop system would be awesome too but I think it should be funded by the companies who are going to profit from it. I have a feeling (from the price of current diabetes supplies) that this technology will not be cheap enough to benefit the majority of people with type 1 diabetes. I believe that some day the cure will really be “5 years away” and I would like all our donations to be spent searching every nook and cranny for a solution that will benefit everyone. That’s what I’m disappointed in. If we get sidetracked by investing in other insulin delivery systems, I’m afraid it will make that “5 years” stretch out even longer than it already has. Sometimes I just feel like they are losing focus of the goal.
What is the difference between the “artificial pancreas” and the Medtronic Paradigm Real-Time Pump already available in Canada? And why do I hear it will be years before the Real-Time will be FDA approved?
Hi Carol,
The difference is that the connection is missing. A true artificial pancreas would include pump and real-time monitor that “talk to each other” and work together automatically.
One real-time monitor is already FDA approved: the Guardian RT.
Actually I will be having Aaron Kowalski from the JDRF as a guest speaker date to be announced soon