Earlier this week, the JDRF – the Juvenile Diabetes Research
Foundation – took out a huge nearly full page ad in the Washington Post and the
New York Times. A gorgeous little girl stared out, and the caption read “1 in
20 people, like Piper, will die from low blood sugar.”
1 in 20. That’s a startling statistic. More than startling,
heart-wrenching. I have nearly 300 Facebook friends all of whom have a child
with type 1 – does that mean I will cry for 15 children whose lives will be cut
short by diabetes? Or will I… no, I can’t even think of that right now.
The advertisements were not to raise awareness of type 1
diabetes, per se, or even fund raise, which JDRF is incredible at, but rathre it was to – in some crazy, somewhat roundabout way – encourage/coerce the Food
and Drug Administration to move quicker on approval for the JDRF’s pet project,
the Artificial Pancreas, a computerized, closed loop system which integrates an
insulin pump system and a continuous glucose monitor. Essentially (and very basically, I know I'm missing the finer points), the AP would
dispense insulin in response to blood glucose needs, no human interaction
needed. Well, almost, you know what I mean.
Now, quite a few parents are not as happy with JDRF’s new
direction as JDRF would like them to be, and I can certainly see why.
Incredible as it might be for an individual with type 1
diabetes to not have to worry about the mechanics of blood sugar control, which
would be taken over by the AP, those individuals would still have type 1
diabetes.
I watched an incredible video the other day, which followed
a group of children in Israel
who were all given the opportunity to test drive the artificial pancreas. It
really is heart-warming to watch it, though I must admit that the little girl
who said that diabetes took up half of her life saddened me. A lot.
At the end of the video, all I could think of was cool. If I
had an AP for Alex I would love it. Even if it meant she had electrodes coming
out of her little body and was hooked to a laptop computer strung off her back
in a laptop for the rest of her life.
And then I thought to myself, is that you really want for
your daughter? To be physically tethered to a machine for the rest of her days?
That’s not a real life. She’d still have type 1 diabetes.
Low blood sugar. It is an anathema to we type 1 parents. It’s
scary enough during the day. We scurry for juice, glucose, anything to bring
our child’s bg up. Today we hit a nauseatingly ugly 35, with 1.75 IOB. It wasn’t
pretty. Alex dropped down onto the coffee table and wailed “I’m low.” No need. I
could see that, shaky and pale, with tears welling up and spilling over. Good
grief.
An artificial pancreas? Forget it, she’s got one already and
it sucks. I mean, I just nearly killed her.
I’ll just wait. I’ll take one cure, please, thank you.
3 comments:
Some days are so hard. I'm so sorry about her severe low, and I'm so glad she was awake and in your caring hands. You are saving her life every single day. You did it again today. You are an amazing artificial pancreas!
I too have mixed feelings about the new direction the JDRF is going. I don't think they should fund research for tech gadgets when the gadget companies have more than enough budget to fund themselves. (Especially the largest pharma company in the WORLD who is getting money from the JRDF?? Seriously? Wrong!)
But, I also see the need for better tools and better support for adults. No one cares about T1 adults. And if "they" really aren't going to cure diabetes until our girls are grown I'm buying whatever gadgets I can get my hands on in the meantime... even if I hate them for it.
It's so hard. In a recent conversation with my daughter's endo, who is a highly respected researcher and professor, I was told to be grateful for the new JDRF goals because they would make more difference in Em's lifetime than them throwing funds away on research for a cure that is nowhere near. Ouch. It took me some time to recover from that conversation. But IF he's right and the JDRF researchers are too, then I guess sign me up for that AP, cuz this one is getting mighty worn out.
I hate diabetes!
Hugs <3
Amy
I am loving your diabetes awareness posts I look forward to them
The JDRF ad shocked me too. But in a way, I kind of know where they are coming from.
JDRF along with all the other diabetes organizations spent decades trying to tell the world that “we” can and do live a “normal” life with minor inconveniences (kind of like brushing your teeth) I hate it when people make that comparison.
Unfortunately it backfired – If living with type 1 diabetes is like brushing your teeth then it is not that bad right?
So why do we need to spend so much for a cure? “I brush my teeth every day twice a day and it is no big deal so what are you people complaining about.”
Now that the non-diabetes world thinks it is no big deal and we should just deal with it and take care of ourselves (like your teeth rot when you do not brush and whose fault is it?) Your, just like you get complications when you do not take care of diabetes right?
You and I know that is not true but we only know because we are touched by diabetes.
They are taking a step back and shocking us the only problem is even we the people living with diabetes have in a way bought into the whole “we live a normal life” that now we ourselves are confused and upset with the JDRF in their game changing
The teeth references are all true comments that have been made to me.
I respectfully submit that Amy and Barbara are both missing the point, which is that you, we, are lousy AP's. We overcorrect. We undercorrect. We sleep. We're not good at math.
As for the backpack and electrodes, it wouldn't be like that at all: they needed the laptops because the devices don't exist yet (and the laptops communicate with the pumps, the sensor, and the docs, as well as control the pump). Electrodes--there are two insertion points right now: one for the pump, and one for the sensor. Device manufacturers know that they have to be small and manageable to be viable.
As for JDRF's direction, I'm a fan-boy. And not just because I'm a technologist, and a Type-I. The JDRF is attempting to address the logjam of regulations, which seems to be what's hindering progress. That is, it's not the technology. Companies have technologies and distribution, but can't move forward because the FDA is not being clear about how they should move forward. And having a clear focus is the best, perhaps only, way to make progress.
I'm with you about diabetes sucking. And I wish you the best.
-Steve
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