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An evening with Ed Damiano

Discussion in 'Parents of Children with Type 1' started by DavidN, Nov 19, 2015.

  1. DavidN

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    There have been a few threads on teens and nighttime checks so I’d thought I’d share a recent experience. A lot of this is known and I may even have one or two things wrong (feel free to correct if you spot an error), but just wanted to share my experience and thoughts.

    So I recently heard Ed Damiano speak and spent a lot of time chatting with him afterwards. I’ve read about the Bionic Pancreas on line but it was really cool to see and hear in person. My random thoughts in no particular order …
    - I really liked him. He’s got a lot invested so his outlook may be overly rosy, but he struck me as a smart, high-energy, sincere, caring person.
    - He discussed two versions of the BP. Dual hormone (insulin and glucagon) and single hormone (insulin only). The dual has been more rigorously trialed but he seems equally excited about the single.
    - He has a 16 year-old T1D son. He kept referencing his personal deadline of FDA approval in 22 months, which is when his son goes off to college.
    - When pushed on handicapping the odds of meeting the 22 month deadline (single hormone version), his best guess was he will miss by two semesters. Like most of us, he worries a lot about those two semesters.
    - When asked about the biggest threat to not having the dual hormone BP out in 2018 or 2019, he said the biggest threat is the single hormone BP.
    - The single hormone BP works extremely well at reducing BG volatility, achieving an A1C of 7.0 and reducing time in hypo (under 60) to 1% of the time. He questions whether private pay will be willing to step up to reimburse for a dual hormone BP that “only” achieves A1C of 6.5 and reduces time in hypo to 0.5% of the time.
    - I expressed concern about nighttime BG’s when sending my son off to college with a single hormone BP. His response was “not me”. He went on to describe how this is a completely different animal in so many ways than Medtronic’s cut-the-basal off technology. I would do it a disservice to try to explain, but it had something to do with patented complex algorithms and 288 readings and potential basal/bolus adjustments a day.
    - I found it interesting that his son has never worn the BP and never participated in any of the trials. He doesn’t want any hint of conflict of interest.
    - A member of his team with T1D also spoke about his experience with the 5-day trial. It was fascinating. After the trial he turned in his pump and cried on the drive home.
    - As for stable glucagon, he was very confident that waiting on that would not be an issue. He discussed two biotech firms with glucagon’s deep in development that are more stable than insulin (1 year shelf life with no refrigeration necessary). Again, his confidence gave me confidence.
    - The dual hormone BP that will eventually make its way to market is about the size of an iphone but a bit wider. There were some very cool features such as the pre-filled insulin vial won’t fit into the slot for pre-filled glucagon viles for obvious safety reasons.
    - The dual hormone BP will have a single infusion site with two tubes.
    - He seemed to have a very active dialogue with the FDA which should improve the odds of success down the road. An interesting for instance, is that he originally planned for the BP to be for ages 6 and older. The FDA (maybe comforted by Dexcom’s successes) asked “why? There shouldn’t be a pediatric cut-off”.

    Anyway, it was an interesting evening to say the least. Maybe the pixie dust will wear off soon but I feel a tad like I did during the 12 months or so post dx … somewhat optimistic about technology. Naive? Maybe. But I'll enjoy while it lasts.
     
  2. rgcainmd

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    Thank you so much for letting us know about your discussion with Ed Damiano. The iLet is one of two things "on the horizon" that I have allowed myself to get excited about. (The other, which is waaaaaaay down the road [if we even get to it], is Viacyte's encapsulated beta cell device.)
     
  3. Theo's dad Joe

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    Thank you very much. This gave me a little joy in a rough day.

    I have a question. I was told by some BP researchers that the basic plan was to have a BP that would shut off insulin at a goal of not going under 70. I was wondering if the BP is likely to be customizable so that if someone wanted to set a low end target at 80 or 90 the would be able to do that, basically sacrificing some control for hypo safety.

    Also, "normal" fasting blood sugar may depend on dietary makeup (percentage of carbs, fat and protein). So my question is basically whether someone who eats a lower carb diet might be able to choose a higher fasting target that would match the definition of euglycemia given that particular diet? Also of course wondering if people could select a higher fasting target based on history, age etc? Would they have that kind of freedom?

    Another question I have is would the BP be customizable to potentially work even better with help such as inputs by the user about some of the makeup of their meals, say grams of carbs and total calories, or about their activity plans?

    Lastly, is there a possibility for me to pass on information to the developer about a way to improve the predictive ability of the algorithm?

    Oh, I guess one more. Would amylin ever be integrated into the system as well?
     
    Last edited: Nov 19, 2015
  4. jenm999

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    I heard 2017 for Viacyte. Everything I can find online says 2020 but two people I know who are on different JDRF boards tell me sooner. I am terrified of a BP/AP given of how many mechanical failures we have on a consistent basis.
     
  5. DavidN

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    I do not think it is customize-able. It's got two inputs and one is optional. Enter your weight (required) and enter the size of your meal (Four very simple choices - something like small, medium, large, very large). The meal size is optional and if utilized will improve A1C by half a point. Other than that, it takes a certain number of hours to get to know your body and eating habits and it takes it from there.

    As for you improving upon his predictive algorithms, his email is public so give it whirl. I just read his resume and will be stunned if you can improve on his models, but then again I don't know what you do for a living.

    As for amylin, I doubt it. I think the technology parameters are pretty tight for trials and ultimate FDA approval. But I may be wrong.
     
  6. Theo's dad Joe

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    I will send him an E-mail.

    I was going to ask also if it works during periods of illness where ketones are making you insulin resistant. It might need a separate setting so you don't contaminate the "normal" algorithm. I will ask him. Thanks.
     
  7. mamattorney

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    If people are reaching out, could you ask him my question? I've always wondered if the "getting to know you" period is repeated every time you change your dexcom sensor or if it's a one time thing.
     
  8. Mish

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    I've been able to speak with him a few times and I'm always impressed with how he's just a regular guy, trying to do what's best for his son, and how approachable he is, and how wiling he is to talk about what he's doing in a way that we all can understand. And I'm always also somehow surprised that his son is the typical teenager with diabetes and isn't all that impressed with the whole process. (or at least was holding that opinion the last time I met him).

    I wasn't ever a big fan of the whole notion of an artificial pancreas, as my old posts will show. I was 100% for autoimmune related cure. But once I learned that my son not only didn't have antibodies, but also didn't have a traditional form of type 1 diabetes, I realized that a BP was really our best chance until a cure for the underlying syndrome could be found. And once I spoke with adults and parents of kids who have tested it, I realized that it's just an amazing thing.
     
  9. Brenda

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  10. Theo's dad Joe

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    Sure. I was also going to ask about things like what happens during a no data period and a lot of other stuff. I was wondering about a double transmitter design possibility if we get CGM downsized in the future where you could have two smaller transmitters with one always being active. It might also prevent no-data periods. The "newer" half could even calibrate faster by seeing the values of the older half, although I think that a lot of the irregularities during the first couple of days are due to insertions site inflammation response.
     
  11. DavidN

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    The 2 hour sensor warm-up is separate from the iLet acclimation period, so no it does not have to repeat.

    Separately, the iLet will ask for a meter reading if it goes without data for too long a period of time.
     
  12. rgcainmd

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    Yep,unfortunately even 2020 is a bit optimistic, I fear. :frown:

    But we'll be happy with (even if very cautious for the reasons mentioned by jenm999) the iLet in the meantime.
     
  13. funnygrl

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    I think the biggest difference between the iLet and the 530g is Dexcom vs Medtronic CGMS technology, having used both.
     
  14. jenm999

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    Don't want to derail the thread, sorry. But I heard this from two independent sources. Will find out more and start a new thread.

    Even though a BP/AP would not be my first choice it would be a HUUUUUUUGE improvement over the current status quo! Sorry to poop on the thread. :)
     
  15. DavidN

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    The iLet folks would strongly disagree. The 530g suspends insulin when a low threshold is reached. that's it. The iLet "learns" your daily routine and physiology to help in actively bolusing for meals, treating highs, compensating for activity, predicting lows in a much more sophisticated manner etc ... The iLet (dual and single hormone versions) lets you forget about most of your daily and nighttime care. The difference in the iLet (when and if approved) and 530g is game changing huge. The difference in the 4G and Enlite is marginal.
     
  16. funnygrl

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    I guess I phrased that unclearly. I totally understand the difference in the functionality difference between the iLet and the 530g. But when I had the 530g I wouldn't even let it use the low glucose suspend, because the sensor was so inaccurate. The Dexcom accuracy I would trust in an artificial pancreases scenario. So that is a game changing component.
     
  17. Beach bum

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    The camp my kids go to did a trial of the AP under the direction of Ed two summers ago. Here's a look:

    http://www.bartoncenter.org/node/6

    http://www.bartoncenter.org/News-Events

    Kid 1 (2nd diagnosis came this past winter) was bummed she couldn't participate (it was done at a later session).

    I like Ed and what he is doing. I know that while a physical cure will still be some time down the pike, the AP will definitely be another great step.
     
  18. quiltinmom

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    I agree that the dexcom sensor vs the Medtronic enlite is a game changer. However, my opinion is that having glucagon is an even bigger advantage,. It being able to quickly treat a low with glucagon, instead of turn off basal and wait for the body to come up on its own, is huge for me. Maybe 2 hours without basal is too long. Or for someone else, maybe it will take over an hour to come out of a low, which is too long to stay low. That was something I didn't like about the 530g. Plus the possibility of false lows/basal suspending when you aren't low, causing highs.

    Anyway, I saw a presentation on the lite once and I was blown away. It was amazing. I can't wait until it is FDA approved! It's Not a cure, but it is a huge step above what we have now.
     
  19. Theo's dad Joe

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    I realize that a sub 7.0 A1C and 1% hypo would be fanstastic for T1D at large, and I'd gladly lock that in for my son through the developmental years (and it will probably improve as he gets older too) but I am curious. All of the adults I personally know with T1D have A1Cs under 7.0. Most with CGMs who are only moderately careful about their habits are 6.4-6.7. Some who are wanting to get pregnant have been told to try to get under 6.5 and have been able to do it again without doing anything radical with their diet.

    I know two T1D athletes who tell me they have been around 5.1-5.4 for every check up for a decade. They both tell me that they only get a few mild night time low alarms a year. So are there going to be some people who can beat the AP by using their own intuition and experience about their bodies and D or will their positive habits like healthy diet and exercise just make their results with the AP even better?

    I have been told that the rate of kids 12-16 under 7.0 is only about 10% nationwide and that seems to be the really hard period to manage, and my son's endo says that overall the rate under 7.0 is only about 33% so maybe the people I know of are a little more observant and careful. They all pump and they all use CGM, while in my son's school district the nurse has told me that to her knowledge he is the ONLY student with a CGM. That was a big surprise. I am not trying to trivialize, but are there going to be some people who can beat the AP with pumps and cgm and a lot of self knowledge or can that knowledge still help them in conjunction with the AP?
     
    Last edited: Nov 21, 2015
  20. DavidN

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    Ed showed a chart during his presentation which compared each participants A1C before-Bionic Pancreas (dual hormone) to their A1C while on the BP. It looked like there were several dozen participants on the chart. Everybody's went down except one. Those starting at 11, 10, 9 etc ... all trended down to around 6.5. It appeared that those starting below 6.5 either stayed constant or went down also. There was one exception. A participants with an A1C in the low 5's had his/her A1C trend up to the high 5's. That subject had frequent hypo's off the BP and while the A1C was up modestly, his/her time-in-hypo was down significantly. So it appears that whatever the low A1C folks were doing to reduce their A1C before the BP carried over to being on the BP.
     

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