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What’s $1,900,000,000 Between Friends?

Yes, that is $1.9 billion.  A sizable chunk of change.  A plethora of moola.

And that is how much the JDRF Government Relations Office has raised thru the Special Diabetes Program thanks to volunteer advocates telling their stories of how diabetes has affected their lives and thanks to the Senators and Representatives in Washington, DC that listen to those stories.

These dollars are part of the mandatory spending portion of the federal budget; that means they cannot be cut without a separate Act of Congress to explicitly remove them.

Now what really surprised me about that number is how little I have heard about it and, speaking with some of the advocates that attended the JDRF Government Relations Day, getting local chapters to publicize that is hard.  The chapter directors are not compensated based upon that number, so getting them to throw a bone to the JDRF Government Relations Office (GRO) about their efforts can be like pulling teeth.

Now here is what I think the local chapters may be underestimating:  The effect of knowing that $1.9B has gone directly to cure research only over the last 10 or 12 years.  The program sends federal funds to the National Institute of Health (NIH) (more specifically the National Institute of Diabetes and Digestive and Kidney Diseases) and all the funding is mandated by Congress to be used for cure research only.

As someone who has been very critical of the JDRF; that fact is important to me and it makes me want to be more involved at not only the federal level, but at the local level as well.   And guess what?  I spend most of my time here, not in DC.

Now you may be asking yourselves “Interesting Scott, but how does the Artificial Pancreas Project (APP) qualify as a cure?  Seems to be just more of the same with added automation.”  (I still find that level of automation a bit concerning, but I’m old and set in my ways)

I have two responses to that

  1. If you delay complications you dramatically increase the number of diabetics that will survive long enough to see a cure and will also see a dramatic increase in their quality of life.  Not to mention the potential reduction in healthcare costs for all of us.  Right now 1 in 3 Medicare dollars is spent on diabetes.
  2. When a cure is found, the APP may be a component of that.  It is much easier for the body to heal when sugars are controlled.  How ever our beta cells are replaced, be it by regenerative medicine, stems cells or whatever, those cells will need a healthy environment to flourish.

And maybe, just maybe, the APP device(s) will have a “special alarm” sound that will go off when it hasn’t pumped you any insulin for a day and two and your sugars have been normal.  Wouldn’t that be cool?  Walking down the street and suddenly hearing a roaring crowd come from the device tucked into your clothes.  (PS I think it should do a Mission Impossible countdown as well.  “This device shall self-destruct in 10 seconds.  9 Seconds …” but that’s just me)

As an Adult T1, that is a number that I would be very interested in more hearing about.   The APP is really the first “message” the JDRF has had for the adult audience; it is something all diabetics can take advantage of and, if the FDA would get off of its butt this may happen soon.

Now for once, the advocates weren’t after federal funding.  They were simply asking their legislators to sign a letter urging the FDA to speed the approval of the APP for large-scale outpatient trials.  That right, boys and girls, outpatient trials; as in let’s see how this bad boy does out on the streets where we live our lives.

The effect that the GRO and the advocates bring to Washington is simply amazing.  There were 500 meetings with congressional offices scheduled for this event.  That’s a huge accomplishment and I want to thank all the JDRF advocates that made it happen.

Hopefully, more local chapters will share this information with everyone they can.

This the first of several posts that will appear about this event

Scott

Today’s snarky quote: 

“Today I am not here to ask you for $300,000,000.” – brilliant JDRF advocate to their legislator

** Disclaimer:  The JDRF covered my travel, hotel and meal expenses for this trip to Washington, DC.  They did not ask me to blog or not to blog about my experiences and these were my own thoughts and opinions **

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

  • Alexis

    I couldnt agree more. Advancements in technology is the stepping stone to reaching that final goal.

    Im so glad YOU went, cause I have no doubt you will tell it like it is.

    FDA. Get off your ass is right.

  • http://www.candyheartsblog.com/ Wendy

    I can’t WAIT to hear more about your experience. Thank you for this post…it feels like I’m getting the inside scoop!

  • http://www.theprincessandthepump.com Hallie

    It has been so incredible to not only be part of Government Day but to be part of the Promise Campaign and ask our members of Congress to support the SDP! One of the biggest things that I took away this weekend was that the APP may/will be PART of the cure. Not just something to keep people healthy until it comes. Not just technology (which I am all about, btw). But part of an honest to goodness cure. That’s exciting! And yes, PLEASE, FDA- get off your rear ends and MOVE!

    For the record, if I ever heard a roaring crowd coming from my clothes while walking down the street, I’m pretty sure I’d crap myself. Just sayin’…!

  • Scott

    Thanks ladies! There’s more coming, but just so many things happened…

    I was especially grateful to get the feedback from so many parents! I learned so much in an area that I have been hesitant to explore.

    Scott

    PS: yea, if I ever got to that point, I bet I’d be carrying an extra set of clothes along with all my APP supplies

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