Discussion in 'Parents of Children with Type 1' started by Brenda, Jun 16, 2014.
I think Ed is doing great work, but I am starting to get annoyed at these articles talking about how his goal is to get this product out there before his son goes to college. They're not even doing trials with a marketable device yet, and his son is 15 years old. It's not going to happen, and it makes me nuts that they're getting people's hopes up who don't understand the process well enough to know that it's a completely unreasonable timeline. My son is 10, and if Ed's AP is on the market by the time HE goes to college, I'd be somewhat surprised and thrilled.
I tend to agree; many great medical devices are tied up for many years in red tape. Unfortunately. i wish beaurocracy and politics would stay out of medicine. It sounds really neat though, and I'm glad they are able to use it.
My biggest issue is the portrayed level of panic of an overnight low alarm after 14 years of dealing with T1D. I don't wish to underplay the situation but really? What does he have his alarm set at ... 50? I hate that newly diagnosed parents might see this and think that's how it will be forever.
The one thing I am jealous about is that Ed Damiano has a job/career where he can make a direct impact. Right place/right time, and the necessary stuff between the ears to make something happen. As a parent that must be very motivating.
Unfortunately, almost 2 years in, his description is close to my reality. I set alarm at 80 and am relieved when his arm is warm to the touch. Maybe the CGM is way off? I wish I were not this way but i am.
Couple of things: I think there is some kind of Fast Track for these devices at FDA, but I am not 100% sure. Ed's device uses a smart phone, t:-slims, DexCom. The Sansum Diabetes Research Institute has had trials for a device using inhaled insulin, which has not gotten FDA approval yet. I know the UVA/JDRF artificial pancreas also uses a smartphone, but I am not sure what it's about, cannot find good info online.
Ed's CV is here: http://www.bu.edu/bme/files/pdf/DamianoWebCV_Sep09_0007.pdf He was not involved in medical research at all until after his son was diagnosed. He was an engineer, not a doctor.
Wanted to do this separately: While looking up the UVA project, I found this story: http://www.utahpeoplespost.com/2014...creas-offers-hope-to-diabetes-patients-video/
I did not watch the video, but am really confused by the text. It starts out talking about Ed's project, shows a photo of a MiniMed pump, talks about "Kovatchev," meaning Boris K. of the UVA project, shows another photo with a MiniMed pump.
Am I mistaken or is this story so messed up it should be taken down?
Ditto. I appreciate that the story captures our nightly reality. It was kind of affirming to hear the reporter ask "You do this every night?!"
Dude - time to do your best to relax. Your son is strong and resilient, and you're providing him with excellent quality D management.
Dude - I'm the guy who would tip toe into my son's room when he was a baby, lean over his crib and put my ear to his face to make sure he was breathing. You think I choose to be neurotic? It's one of my burdens. :smile:
If there was a 100% guaranteed rule we all could follow, we wouldnt be so antsy! There is a randomness to T1D that makes the nervousness impossible to escape (for this dad).
EDIT - (moved post to another thread that was more on topic)
I have mixed feelings about the bionic pancreas projects at this point. While I love the G4 and wouldn't want to give it up, I also have occasionally seen whacky enough numbers on rare occasions that I wouldn't want it dosing my daughter's insulin until there are improvements in sensor technology. I understand the desire to turn over management(!!!!), but unless the target number is quite a bit higher than many of us here use, I have questions about safety at this point and don't feel the FDA should rush this through.
As far as the comment about how much control is improved, have others read the requirements for the AP studies at clinicaltrials.gov? My daughter wouldn't qualify. They aren't looking for kids within target range for their studies. It really wouldn't look good if their study A1Cs went up. My daughter's reaction to one blog's graphs was that it looked like her worst days and would prevent her from her dreams. Unfortunately, she was dead-on correct.
Yeah, I think they will have to have some sort of sensor redundancy (two sensors??) in order to get the thing through the FDA. Not to mention shelf-stable liquid glucagon, and a dual-chamber pump. They really are not close at all on this thing, and I get unreasonably mad reading articles that sound like they are close.
I think I can probably do a better job than the first AP will be able to, but it sure would be nice to let it take over at night.
I have had the same thought countless times! But until the system had proven itself, I think I would sleep worse, wondering what the AP were doing and whether it was accurate.
Too many points of potential failure for my comfort. How many times have I read here about kinked lines or bad sites affecting delivery? Let's say the decision making algorithm is perfect (a big IF) - the mechanical components would also need to be fail proof. As anyone who has had to clear a copier jam can attest, that is no small feat.
My son and I had a chance to listen to Ed Damiano speak about this once. As I sat there, I thought, "This is it. This is the guy that is going to change my kids' lives." I do think something along this path will be available when my son leaves for college. I'm not expecting perfection but I can completely see myself signing up for whatever waiting list there is and jumping through any hoops there might be to get this for the kids. I have no expectation of a 'cure' but I have complete faith in a mostly automatic system that will be leaps and bounds beyond the management we are doing now.
And I love seeing the T:Slim and Dexcom combo! Two items I love!
This man is awesome. I hope his family spoiled him rotten on Father's Day!
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