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From Abby: Closed Loop Trial (Part II).

Hey, this picture again?  Yes.Hi again!  Thanks for checking in with Abby's experience with the diabetes closed-loop study.  Here's part two of Abby's feedback on the closed-loop study, including her questions and concerns about what happens next:

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The great thing about this study, and the people running it, is that they are fully aware of the human component. The engineer I spoke with has a 12-year-old son with type 1, so he “gets” how this system needs to function, and under what circumstances. The nurse practitioner who runs the study also has type 1, and so did the night nurse) who watched me puke for two hours). These people know what its like, and why we need this system to function and help us.

While I'm not sure how much I can share publicly about what the engineer of this computer program told me, he did fill me in on where he sees this whole shindig ending up.  His plan is to develop an iPhone application that would be controlling everything.  The OmniPods would be replaced by a tubed pump (one that can hold glucagon and insulin in a very small pump; they have a contract with a company) and we, as patients, would wear two infusion sites about two inches apart, but connected to the same pump.

While this might seem like an excessive amount of stuff to wear, i don't actually think it would be, considering how tiny infusion sets have become. Also, he's really pushing to use the Navigator CGM system because of it's accuracy. Unfortunately that technology is no longer being made so he's trying to figure out a way for another company to make the same system - aka "reverse engineer" it. So patients would be wearing a Navigator (he's pushing for a smaller transmitter, since the current Navigator one is huge) a pump, and two infusion sets. The other problem is the lack of stability glucagon shows after 24 hours. So again, they're working with a company to develop a glucagon that is stable for three days at room temperature.

Assuming they get this pump generated, glucagon stabilized, and Navigators back on the market, the plan is to have an iPhone app that controls all three aspects. The algorithm would figure your body and habits out over the first few days, and then use a 10-day model to dose your insulin and glucagon. What this means is that your basals for the last ten days might not be the same as the next ten days, but the computer learns from what it's seen. The really coolest part to me, though, is how you bolus for meals.  You would literally push a button that says either small meal, medium, or large meal. If you're eating less than 15g, for example, you don't bolus at all and let your computer react to your blood sugar. 

At first I thought this was totally insane, but he said that during the trials they're finding this is actually an okay way to do it, and that your blood sugars won't skyrocket because you're being controlled so tightly. Also, the system learns what you consider a "medium" meal. So I may eat meal that is actually 60 grams of carb and guess it at 45 grams, so I call that medium - while you would see the same meal, guess it at 90g, and call it large. It won't matter after a few days, because the computer will just know what you consider small medium or large - as long as you're consistent with your guessing. How awesome is that!!

This team will build into this program things like sick days - the computer will adjust your basal rates if it is seeing consistent lows or highs for three hours. Also, it would shut off insulin for a while if you're dropping from something like exercise, but since it wouldn't be for over three hours it wouldn't totally change your basal pattern.

Abby, all hooked up to the system.

I have questions and concerns about this, as I'm sure you do. First of all this whole system, when available to us, will be SO expensive. Heck, I don't even have an iPhone now.  [Editor's note:  Neither do I.]  Also, this is so complicated, you'd need to be in very close contact with your medical team. A large part of the population can't handle insulin pump therapy because of it's complexity - so how will people be able to grasp this concept? I suppose with time it'll become more readily covered by insurance, and easier to understand. I'm excited about the future of technology, especially after seeing it at this stage.

It may not seem like it, but I had such a positive experience during this trial, even though it was cut short by vomit. There are people working very hard to help those of us with diabetes. They know what we're living with, and they see a future with an easier-to-control system.  My hope for “something better” has increased after this experience.  If we aren't able to be biologically cured, we will at least have a more efficient way to control this disease. 

I think that future is coming soon.
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I want to thank Abby again for sharing her experience at MGH with us, and the photos and feedback have been amazing.  I'd love to hear from anyone else who has participated in a closed-loop trial - if you want to share your experiences, please email Abby directly at abby (at) sixuntilme (dot) com. 

Comments

It is really awesome to know that the people working on this have such a connection to Type 1 and really get it. Thank you, Abby, for participating and sharing!

Thanks for sharing all that info. Very exciting stuff!

Thank you so much for sharing Abby's experience. I find it fascinating that someone I "know" actually took part in all this jazz! I'm sorry that it didn't end the way you had wanted (or expected) Abby, but you still did good! And I cannot wait to see what the future holds with this stuff.

This is awesome technology....if they can get it to work (which I think they can). I'm just way too impatient. :/

I've been doing this (the D) a very long time, and it feels so good to have a flicker of hope. Thanks Abby! And thanks Kerri for posting.

Yeah Abby!

Thanks for the update and creating a far more compelling view of AP - the patient's.

Thanks

Thanks for doing this, Abby, and for sharing your experience with us. This gives me so much hope- you have no idea. Thank you.

Thanks for the detailed reports on your experiences with this gizmo. Looking at all the stuff you're plugged into, the thing looks like cost may be a "deal breaker" for a lot of people?

I think the engineer w/ the 12 year old is married to my daughter's former pediatrician. She was a great doc but when they had their baby, they got him on a pump very early and then moved to Massachusets. I've sort of followed them on the internet b/c their story always amazed me.

Cut Short by Vomit is a great band name!

Questions: Why must they resurrect the Navigator? Why can't they use Dexcom instead? Also, our DD's basals have never been steady for a ten day stretch; we tweak something almost every day and changes are usually made every three to five days max. I suspect most children are the same. I have huge concerns about the meal bolus. Our DD does not eat the same or similar number of carbs per meal anymore as she is a teen. Large, medium and small is too vague and will not cover the carbs adequately. Demand accurate carb counting, not a pump giving too little or, even worse, too much insulin. Three sites? Yes, that would be a problem around here. She refuses to wear two sites. I think this would be an issue for many people... Three sites.... Wow. Greatful for advances in technology but this progress report makes me long even more for the simpler, less invasive promise of something like SmartInsulin.

Hi Julia!
Thanks for reading about this trial! To answer some of your questions, the Dexcom is too delayed for this system to work. The Navigator was almost dead on the entire time I was hooked up to it with my actual venous glucose level. You wouldn't want your pump dosing you based on a blood sugar that was 20 minutes ago.
Good point about the basals, this system is addressing just that - the basals change on a minute to minute basis. Not a fixed rate like the current pumps.
The meal bolus feature is actually great, and since the system is constantly checking itself, it would adjust with age and carb amount changes. Using a small, medium, large system does work, since it pre-boluses you a little and then gives you extra "basal" as your blood sugar rises. It's hard to believe it would work - I was totally skeptical until I saw it on myself and it really does work!
Three sites would be uncomfortable, you're right... but frankly I'd take three sites over wacky blood sugars any day.
I hope SmartInsulin comes through also, but in the mean time I'd be willing to settle for better technology :)

Thank you for all of this useful info! At my most recent visit to my endo., she indicated that, since I do so well pumping/CGM-ing, she feels I would be a great candidate for the closed loop system trials, and promised to give them my name if they ever approached her. Reading this blurb makes me more and more wish that Abbott would re-introduce the Navigator, which I have never yet tried.

thank you Abby for being our guinea pig!

I think for kids, it's going to be a challenge. But it's going to get there, and frankly, by the time it does my child won't be a child, so I shouldn't worry. And before it can ever get there we have to perfect CGM technology. There is just no way I could possibly rely on it as it is now.

But I'm excited to see someone trying.

Thanks for the Info.! However, I am not excited as I once was after reading this. It seems the technology in not even close to being ready, or for the FDA to approve. Waaayyyy to many VARIABLES. Also, I would never wear this many Infusion sites... it would prohibit my life and movement of free activity! If this is it... I'll keep to my shots and testing. :(

abby thanks sooo much for sharing all your experiences with this. super interesting!

i think the part that concerns me most is the iphone part. #1 because i often lose things, leave them at home/friends house, etc. i may have ADD but i know i'm not the only one :-). also iphones get stolen a lot. either of those would be disastrous if it was your insulin/gluc pump. that's one of the reasons i would never get an omnipod... i literally need my pump attached to me :-). #2 because i wouldn't want my diabetes stuff tied to a commercial/proprietary non-diabetes tool like an iphone. apple is super proprietary (ie you can't just stop at walgreens and get some good ol AAA batteries, you gotta send it in & pay for apple to change your battery), i don't trust them, and they aren't covered by insurance. also most people i know that have an iphone or ipod for more than a year or 2 it breaks. and apple isn't gonna have 24/7 reps, who know how serious it is, to fedex you stuff like our pump company people.

This is the best explanation that I have read. Great Post!

Ah-mazing stuff. You're a rock star in my book for being involved on the leading edge of D-tech research.

Thanks for sharing this. It's incredible where technology is going. Despite the kinks that need to be worked out, it sounds very cool. It's also good to know the people working on this understand it and have a personal connection, and hence the extra dedication :)

Thank you for sharing this with us!! Do you know why the Navigator was stopped? It seems like it was great so why stop making it? I have Dexcom and just started it, I love it but dont love its inaccuracy or adhesives that dont last the whole 7 days. Im sorry your trial was cut short, thats a major bummer. I hope for not just another very costly treatment but an actual cure. I dont think I can afford anything more costly. I am already paying 5200 a year for insurance and after all bills Im left with less than 100 bucks a month.

Thanks for the explanation. I would be more prone to accept this if it allowed you to bolus accurately for meals manually. I do not believe the Navigator is as accurate as you claim (there were plenty of complaints regarding Navigator performance from parents of cwds published online at cwd forums. I am glad Navigator was accurate for you. Until they can devise a cgms system that is accurate and timely as well as much faster insulin, not sure how this would work out. Yes, it has worked well in controlled environments overnight. Just do not trust the sytem yet, though I'm glad they are working on it. I'm afraid three sites would be a deal-breaker for a lot of people. After pumpimg six years, she would not have the "real estate" for three sites. This is a life long disease. Three site changes every three days? There is not enough usable skin on the body for this.

That was a great write-up! It's always incredibly interesting to hear first-hand accounts of closed-loop trials - esp. one that wasn't textbook perfect. We've got a 3-year-old with T1, and forays into the AP, smart insulin, and encapsulation are things that give us hope that his near future won't be quite as hard or dangerous as it is now. Thanks for sharing!

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