Dan Maloney
hey @Kyle J. Rose! that's a good question. I think there are a couple of advocacy pushes that would be useful: to insurance companies to cover CGM (not to mention insulin) and eventually APS; for us individual advocates to the companies to make the APS coming out more transparent and understandable, etc.
@c4481080 I'd like to build it as a wristband, but maybe in the future hahaha it has to work first!
I recall seeing every now and then that apple tried to do that with the Apple Watch
I also think encouraging individuals to continue to share their experiences (and data) with DIY and commercial APS is helpful, for educating our community and also showing what the companies need to do better to roll out commercial tech.
hi yall, I figured I'd drop in. I'm a currently a college student in the process of getting a pump. @Dana Lewis I think the work you do is amazing.
speaking of data donation - if you're using a DIYAPS of any kind, please consider donating data to the OpenAPS Data Commons (https://openaps.org/data-commons/) so it can be used for various research & development projects :)
@Dana Lewis - Do you know of any commercial APS systems in the works? Wondering if anyone is really trying to close the loop on the low side with emergency glucagon infusion.
@Hochkbry welcome! thanks for dropping in.
I don't know much about the status of DIY loop mechanisms out there. Would you recommend people who are not very tech savvy to go down this road? My daughter has T1 (8 years old) and even as a developer for 10+ years I'm hesitant to do something like that with her right now. If it were me, I'd already be doing it.
DiaTribe has a pretty comprehensive list of the commercial systems: https://diatribe.org/automated-insulin-delivery
@Scott Leibrand Thinking more on the Policy advocacy and and community support sides. @Dana Lewis Okay, that's helpful. I often receive questions and direct people to existing online groups and documentation. But always wonder if there is more I could do or if there are specific community needs could help address.
@Bill Staffeldt knowledge of your own diabetes is the most important. Many people with zero technical background successfully DIY loop with each of the systems.
there are kids as young as 1yo who have had their parents build their DIY systems. obviously, depending on the age of the child and their current role in diabetes care, they may play a bigger or smaller role in the decision making process in deciding whether or not a DIYAPS makes sense for them
@Bill Staffeldt Interesting. I would be the opposite. I waited to use a DIY system until I had access to a pump easily. If it was my kid, I would have bought an out of warranty Medtronic a couple of years ago.
@Bill Staffeldt - Same here, my daughter's onset was when she was 8 five years ago. I haven't done much more than keep my head above water in that time, despite being a pretty fair hacker. It really boils down to not having the time because I need to stay employed so I can afford to keep her in insulin.
There are a lot of resources to read more if you want to evaluate and figure out if it's right for you/your family. One resource: I wrote a book to be a general intro to DIY & commercial APS, it's available free online or as a PDF download (or you can buy a print/kindle copy) if you're interested in more: https://www.artificialpancreasbook.com/ (and links to each of the DIY systems in various places)
@Kyle J. Rose one issue I've run into as a patient is fear that my endo would "fire" me for using Loop. I was really hesitant to share with her what I was doing and she was ultimately somewhat supportive (with the caveat that she can't recommend this or support me in using it). But I know it's a barrier for a lot of patients. In fact, it was probably my biggest concern going down this path - would I run into issues accessing prescriptions and general health care if I took this on.
That's the thing. I'm worried I'll miss something. Also, she's on an omnipod dash, which doesn't seem to be understood too well yet.
It's amazing to see how different the story of diabetes treatment is in different places in the world...
@Andrea R. - And it's easy to say "well find another endocrinologist", but we know how hard that is, right?
Thank you for that link Dana
You're welcome!
@Andrea R. @Kyle J. Rose there are some good efforts and collaborations starting among HCPs to change the dialogue there, thankfully.
Yes ^ lots of us are talking to endos and educating/collaborating with them
so it's not just us as the patients working in this space, which is great.
@Dan Maloney yep! Even in a large metropolitan area (where I live) there's only a handful of endos who are experienced at handling T1D in adults. And it's not uncommon to encounter new patient waiting lists. I am lucky to have a wonderful endo but I know others have run into some serious issues. In all fairness, I do understand the liability perspective of doctors (or at least their perception of such).
Here in Spain we have the same problem with endos…
@Andrea R. I told my endo last week. I wasn't sure how to do it and as it spilled out of my mouth, her eyes got so big i could see the white all the way around. :)
Then she said "well I'm not going to yell at you". And i said good - because this would be the last you'd see of me then.
What would be the best recommended action to try for someone with 640G + CGM currently ?
@c4481080 there are several people who use 640 as the CGM uploader, and then also wear a loopable pump. not sure if you'd want to go down that route, but it's an option.
otherwise, you could use AndroidAPS as an open loop
@Andrea R. - One of my daughter's early endos pushed back hard on me getting more than a 90 day supply of insulin. "Why would you need that? Just order more when you're almost out." Really? We fired her and found a better doc.
@Andrea Limbourg ha! I had a very similar conversation wtih my endo a couple of months ago. It was tough because she's probably my favorite doctor that I've ever seen and I did not want to have to choose between her and Loop. But I had to tell her. She ultimately pointed out that she has no control over HOW what she prescribes will be used by patients and assured me that she was not going to stop seeing me. I felt very fortunate, but it was probably the scariest moment for me.
ugh
Do you think an open loop is a major step up from manual ?
@c4481080 I found it to be so, yes
manual as in nothing :)
can I get loop to read the data from NS as for open loop ?
I had an A1c drop of 1 just from open looping (and that was with a clunky web page interface before we realized it was really an open loop). Proactive alerts for treating/preventing lows and major highs is really helpful.
if you mean loop as in iOS Loop? I'm not sure. Other types of DIYAPS (OpenAPS, AndroidAPS), yes.
Open looping is easiest with AndroidAPS, which does read from Nightscout.
One thing that it's very important (and many doctors don't know or maybe just ignore) is food. I found a very good endo where I live and with her help I reduced the amount of insuline a half!
you could also take a look at Spike and see what it has in iOS for predictions (they've pulled in some of the OpenAPS predictions) and see if that helps, too
@Dan Maloney I feel like a lot of doctors in general don't recognize the every-day frustrations that come with managing a chronic condition. They fail to see how writing a prescription that lasts longer or using a technology that removes the mental burden of management can be helpful.
@Dana Lewis Thank you for going through all those clunky steps for the rest of us!!
@Andrea Limbourg :) :) :) worth every clunk along the way!
@Dana Lewis And they are better than the 640G internal alerts ?
yes
@Irene C. S. I think food is very person specific, there are companies today that can do you specific measures with CGM to tell you how your body handles different type of goods
like Day 2
@Andrea R. So true!! "They fail to see how writing a prescription that lasts longer or using a technology that removes the mental burden of management can be helpful."
I'm looking forward to where we (as in the diabetes world in general) more regularly quantify different things (such as diet type, or different behaviors like choosing to bolus or announce meals or not) and the specific predicted impact on each individual, so an individual has the data & guidance to decide for themselves among their other priorities in life for what's the best thing for them to do right then.
Is there any recommended Android version + maybe Mobile phone version to try NS with OpenAPS with Medatronic OTG ?
@Andrea Limbourg Great response to your Endo! :) @Andrea R. , where do you live? In France, it's been a struggle with endos as well but we do see some signs of things changing as per Dana's comment. In fact someone just posted on the French FB group about "coming out about Loop" to their endo and the positive response they received. That being said, given that we as PWDs are often dependent on them for prescriptions/reimbursement, I completely understand your hesitation. I believe there is a shared responsibility to educate HCPs about what we are doing but is a very tricky one, particularly in geographies where there is a typically a one-directional conversation coming from the Dr.
IMHO openaps (and derivative) is still far far away from industry proposal...
Thank God we live only two hours from Canada. I can go get insulin up there anytime I want, no prescription and just $35 a vial. As opposed to $350 in the US before my insurance deductible kicks in.
@F5OEO which direction are you describing? can you elaborate?
In France there’s also the option of Diabeloop.
So this is a sorta general question. i was diagnosed t1 less than a year ago and hopefully finished jumping through all the hoops for a while. This Friday I am talking with my endo/dietiation about pump options. I've done a bit of reading but what things do I need to know walking in and what should I expect in general?
@Hochkbry what part of the world do you live in? and are you wanting a pump that you could potentially use with a DIYAPS, or are you still exploring all of your options (e.g. a commercial system)?
@Kyle J. Rose I am in the U.S. in a large metropolitan area. No shortage of doctors, but definitely a shortage of good ones accepting patients. Thankfully, I think with Loop and DIYAPS the tide has been turning. I was shocked that when I told my endo about using Loop, she actually knew something about it from a recent conference she attended. That was impressive (and unexpected)
Does anybody have here expreience with Day 2 or such companies in lowering gloucuse levels ? https://www.daytwo.com/en/
Our Endo has never brought up loop, but the nurses in our hospital system have hinted at it.
@Hochkbry see the link above for Dana’s APS book. Read that before your appointment, and maybe take it in for your endo. :-)
there's a specific chapter for HCPs :) if they aren't interested/have time for the whole thing
Well right now, in France , the "ultimate on the edge" commercial proposal is a "stop basal" depends on CGM.. Diabeloop is still in development and completely close source.
@Scott Leibrand There WILL BE, one day the option of Diabeloop. They have asked for reimbursement and that could easily take 6 months to a year to go through - not to mention that not everyone will have access at first
https://www.artificialpancreasbook.com/10.-hcps-and-aps
10. HCPs and APS
"Dear optimist, pessimist, and realist: While you were arguing about artificial pancreas technologies... we've been using it. For years. Sincerely, The do-it-yourself diabetes community" There are some great resources created in the diabetes community.
Read this on Artificialpancreasbook
@Scott Leibrand - There'll be a transcript when the chat is over if you need to scan for links, resources, etc.
@Hochkbry I would start here and read it thoroughly, as it will help you figure out which pumping option makes the most sense - https://www.diabettech.com/looping-a-guide/
@Dana Lewis I'm pretty open to all options, i'm located in TX
And thank you everyone I will for sure take some time to read up before my appointment
If you join the Looped group on facebook, there's a pretty good list of loop-friendly endos that one of the admins compiled :D
The general choices are: is there an existing commercial closed loop system that you want, or a basal-suspend system that prevents lows that you want, or do you want a pump that's just a pump, or a pump that you can DIYAPS. More reading on DIYAPS may help you decide if that's a direction you want to take. And the diatribe link may help for evaluating the timeline of different commercial options coming down the pike.
Following as a 'basic user' AndroidAPS in open loop allow to reduce B1C from 11 to 6.5 in one week ...
it's kind of a tough time - great stuff coming, but no timelines, so hard to make a decision now when you might get locked into a company for 4 years. :/
Diabeloop, while closed source, does use some of our “equations” in their code, and have worked with us extensively. I’m optimistic they’ll be the best commercial system when they get reimbursement figured out. They are CE marked, but not sure if you can buy one out of pocket or not.
@Scott Leibrand , give me the source , I don't want to trust in third party for my diabete
Ok, then DIY is definitely the way to go for you. :-)
@Scott Leibrand As far as i know, you cannot buy Diabeloop out of pocket. They aren't on any market yet even though they have had the CE mark for a year. But they got the CE mark with G5 and had to update it to G6 this year.
What are peoples thoughts on accuracy of a libre+miaomiao+xdrip vs dexcomG6+xdrip? I currently use a libre for free but would need to pay for dexcom G6.
I wish there was a site with links to all the APS things, it seems to scatered
@Dana Lewis this is why Omnipod is so appealing for me. It's in warranty, but with for many people moving from another pump, the PDM is free so you're not locked into any warranty. Plus you can Loop with an in-warranty pump which is nice. I prefer to use an in-warranty system just to avoid the hassle of getting supplies and having an operational pump. I like having my PDM to fall back on if Loop blows up on me.
@c4481080 https://www.artificialpancreasbook.com/resources has lots of links in one place
Thank you for your time everyone, I gotta dip for class. I'm gonna try to be more involved so hopefully I'll be speaking to some of you again.
@Dana Lewis , you use PDM parallel to openomni ?
@Hochkbry good luck this week at your appt!
@F5OEO I'm not using Omnipod
@irene.carrasco.shwartz : Did you tried a ketogenic diet? Since i do this (its expensive an needs time to spend on), I have almost no hypoglycemia anymore and my HbA1c has dropped by one point to 6.7 ... in 3 months and as a T1D
@Colin McCrory the Libre is not a CGM. Using it as one presents some serious safety issues and has resulted in hospitalizations. The Dexcom is safer if you can afford it.
hi all just joining the conversation
@Andrea R. yea, I happened to be on the same manufacturer that I currently use now for DIYAPS, so thankfully it didn't require any change to pump supplies and I have a backup pump (not in warranty, but I have one). I'm definitely team emergency backups for all the things :)
@Scott Leibrand, lot of frustration with Libre as a CGM
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