What do you expect from an artificial pancreas?

[tim2000s]

As a user of a DIY artificial pancreas, I was having a chat with someone last night, and they asked me this question. After I'd responded, they then said, "Right, but you've got one, what do people who haven't want?" and I admit that I was a bit flummoxed. So I thought I'd ask those with T1D on the forum what you expect? And do you think that's been at all tempered by news about the Medtronic solution or the DIY solutions (in other words has publicity about these things changed your expectations)?

 

[Deleted Account]

I expect an artificial pancreas to "take control": to respond to highs and lows in BG but also to react as fast as a real pancreas which is more of an artificial insulin feature than the tech. I would expect to no longer need to carb count or tell it I am about to do some exercise.
I think this may be easier for the "older set:" because their lives are, generally, more sedantry and pedictable. And, if the pancreas is easy to deploy/top up/update there is no reason why the older set would be left behind.

As for 100 years time having a pancreas grown in the lab, I hope/dream there would be no need as type 1 diabetes would be a thing of the past - we may have a vaccination or cure so there would be no need to treat type 1 diabetes.

Or perhaps I am dreaming more than @Knikki.

 

[Diakat]

Well, simple to use with minimal adjustments needed. Small. Intuitive to use. Reliable. Available to all.

 

[DunePlodder]

I've been thinking about this lately. I now have the Tandem X2 which will first be upgraded with the Basal-IQ option to fight lows, then in a year or so Control-IQ the full hybrid closed loop. Basal-IQ should help a lot with those overnight lows.
So what am I hoping for from the closed loop?
The main hope is that it will reduce the pressure on me to be constantly assessing whether I need to make any changes: eat something/make a correction/change to a temp basal....
I hope I can be out with friends without needing at least 10% of my brain thinking about diabetes.
If I under/over estimate carbs, I want it to stop things escalating out of control even though I'm distracted by "life"
I know it won't be able to deal with serious over bolusing.
I know I'll still have to bolus for food. That's fine for now, but I'd like to think Tandem would be flexible enough to learn from the DIY world & the advanced meal announcements & similar.
I had the option of the 670G but the fact that I know & love the Dexcom G6 led me to the Tandem. I also heard stories of alarm fatigue with the 670G which put me off.

 

[Fairygodmother]

Like @Knikki and @helensaramay, I’d want something that does all that the relevant parts of a real pancreas does. If it were crispr edited and grown from my own cells so that there are no rejection problems then that would be ideal, especially if it could be inserted without the need for major surgery. I’d like it to be rigorously trialed and, if successful, available to all. However, maybe by the time the development and trials are completed other advances will make T1 a thing of the past.
And what’s all this about oldies finding T1 easier? Pffft, enough already!

 

[Jaylee]

Hmmm. good question.

In short, an answer to a reliable "part replacement" that removes the ongoing need to source consumables from the pharmacy industry.

These boys pretty much sum it up...

 

[kitedoc]

I think it is unwise to expect loop systems/artificial pancreas to handle 'eat what you like' type diets and expectations.
Controlled insulin inputs in relation to BSLS also requires control of diet and ideally, matching food intake and resultant bsls to the action of the insulin used.

 

[LooperCat]

What I'd like is to not even have to think about diabetes other than when changing pump sites and sensors...

However, and I'm speaking as someone who is going to build an artificial pancreas this summer, what I actually expect is really quite different. I expect it to be all consuming until I've perfected the settings, and I'll need to watch my levels on my watch like a hawk, taking evasive action and tweaking if I need to. I imagine it will be quite well suited to my low carb way of eating, as changes in my BG tend to be slow drifts rather than sudden spikes and crashes. I don't know if I'll need to do separate bolus doses for my LC meals, or if the system will react and just increase basal rates to cover it. I know loopers who do eat a lot of carbs need to enter it into the system and take a dose for their food. It'll be an interesting science project! I'm waiting for my RileyLink now, due mid July - I've got everything else I need to start looping. Hoping I'll have some good results to show my team at the end of August when I see them

 

[tim2000s]

What I'd like is to not even have to think about diabetes other than when changing pump sites and sensors...

However, and I'm speaking as someone who is going to build an artificial pancreas this summer, what I actually expect is really quite different. I expect it to be all consuming until I've perfected the settings, and I'll need to watch my levels on my watch like a hawk, taking evasive action and tweaking if I need to. I imagine it will be quite well suited to my low carb way of eating, as changes in my BG tend to be slow drifts rather than sudden spikes and crashes. I don't know if I'll need to do separate bolus doses for my LC meals, or if the system will react and just increase basal rates to cover it. I know loopers who do eat a lot of carbs need to enter it into the system and take a dose for their food. It'll be an interesting science project! I'm waiting for my RileyLink now, due mid July - I've got everything else I need to start looping. Hoping I'll have some good results to show my team at the end of August when I see them

Right, but this isn't really about what you expect from a DIY system. It's what would you want from something being provided on the NHS....

 

[NicoleC1971]

I'd agree with Helen that a biological solution would be the true cure rather than a mechanistic one involving exogenous insulin (does not behave as endogenous insulin does in terms of timing, duration etc.) and exogenous insulin does not suppress my gluconeogenesis (glucagon from pancreatic alpha cells).
Back to reality. If my fsl could 'talk' to my pump as my bolus calculator on my handset already does that would help and as I understand it those close looped systems exist though I am not sure if they auto bolus or simply anticipate hypos and turn off the pump. If it learns what correction or bolus/basal doses are effective across 24 hours or across a 28 day cycle.
My current system is programmed across 24 hours (offers different correction doses, carb to bg ratios and bolus rates) but isn't learning from how my body is reacting and is prone to human error (miscalculation of carbs). Can 1 pump learn from it's individual human?

 

[LooperCat]

Right, but this isn't really about what you expect from a DIY system. It's what would you want from something being provided on the NHS....

Ok, I'll clarify - What I'd want from a proprietary system provided by the NHS is to not even have to think about diabetes other than when changing pump sites and sensors... And if they can implant all that, so much the better

 

[Deleted Account]

I think it is unwise to expect loop systems/artificial pancreas to handle 'eat what you like' type diets and expectations.

Why?
If it is replacing my pancreas, I would expect it to do everything my pancreas sholud do so I can live exactly the same life as I would without diabetes.
I accept there are other (health and ethical) reasons I may have for my diet but if I have to restrict my diet because of diabetes, the artificial pancreas is not fully replacing my broken pancreas.

I am thinking beyond the current closed loop systems - to me they are not an artificial pancreas although they are a useful tool.

 

[Robinredbreast]

As a user of a DIY artificial pancreas, I was having a chat with someone last night, and they asked me this question. After I'd responded, they then said, "Right, but you've got one, what do people who haven't want?" and I admit that I was a bit flummoxed. So I thought I'd ask those with T1D on the forum what you expect? And do you think that's been at all tempered by news about the Medtronic solution or the DIY solutions (in other words has publicity about these things changed your expectations)?

I am still om MDI and find all the techincal bits and pieces a bit beyond me, But having said that, I would like the DIY artificial pancreas to work the same as my pancreas did, in early 1989, pre type 1 diabetes diagnosis.
But what we want and what we get, are entirely different.
Nice to dream though

 

[evilclive]

What I want is to not have to deal with things to do with insulin any more.

However there's plenty of helpful stages along that way - pump with feedback to take care of levels between meals would be a useful step for example. So manual for big lumps of food, otherwise automatic.

 

[MauroM]

First thing would be accessibility. It doesn't matter how well the system works if only a handful of people has acces to it. Second, at least for me, it would be important to not worry about the device while I'm exercising (lifting, running, cycling, swimming). I'm not on a pump at the moment, but every time I wore a CGM (libre), I couldn't forget about it and would remain worried about it falling off (it happened in the pool once). The bolus injections and calculations do not worry me (I actually like this aspect, I think it helps me with diet discipline) but I understand it is a hassle to many people.
Tldr: I would like a cheap, accessible, sturdy system that can take the daily exertions as well as the rest of my body.

 

[evilclive]

Second, at least for me, it would be important to not worry about the device while I'm exercising (lifting, running, cycling, swimming). I'm not on a pump at the moment, but every time I wore a CGM (libre), I couldn't forget about it and would remain worried about it falling off (it happened in the pool once).

I can report that a libre survived a 6 hour caving trip on me It was very useful - the reader sat in a waterproof pouch (I think an ortlieb map case), and could test without having to worry about gloves or mud.

 

[kitedoc]

Why?
If it is replacing my pancreas, I would expect it to do everything my pancreas sholud do so I can live exactly the same life as I would without diabetes.
I accept there are other (health and ethical) reasons I may have for my diet but if I have to restrict my diet because of diabetes, the artificial pancreas is not fully replacing my broken pancreas.

I am thinking beyond the current closed loop systems - to me they are not an artificial pancreas although they are a useful tool.

Why?
If it is replacing my pancreas, I would expect it to do everything my pancreas sholud do so I can live exactly the same life as I would without diabetes.
I accept there are other (health and ethical) reasons I may have for my diet but if I have to restrict my diet because of diabetes, the artificial pancreas is not fully replacing my broken pancreas.

I am thinking beyond the current closed loop systems - to me they are not an artificial pancreas although they are a useful tool.

Because it was when people were told to lower saturated fat content in their diet which led to the obesity and T2D epidemics we face now" Increased carb intake to which people's pancreases responded to somewhat similarly to someone with an atificial pancreas could do - up goes weight, heart disease risk etc. let alone dental problems. If you look at the tables for GI, GL and the newer insulin index, there are values quoted for many processed foods. The implication is that theses foods are OK to eat if you are diabetic. But we know that they are not healthy even for the general public. An artificial pancreas may give diabetics the idea that they can eat whatever they like and rely on the technology to fix whatever bsls abd damage resukts. That is nuts in my opinion.

 

[Bluey1]

Why?
If it is replacing my pancreas, I would expect it to do everything my pancreas sholud do so I can live exactly the same life as I would without diabetes.
I accept there are other (health and ethical) reasons I may have for my diet but if I have to restrict my diet because of diabetes, the artificial pancreas is not fully replacing my broken pancreas.

I am thinking beyond the current closed loop systems - to me they are not an artificial pancreas although they are a useful tool.

I AGREE
I would add no external attachments are required, like a battery backpack and not temporary like the artificial hearts.

 

[Notorious]

I would like something that takes away some of the mental load. Having type 1 is like carrying a baby around with you and informs almost all the decisions I make.

I would also like it to be a bit more "all in one" than any of the current solutions, official or open source. I hate having so many points of failure - sensor, cannula, phone, watch, insulin... The list goes on. So maybe ideally it would be a long-term implanted sensor with high reliability like a pacemaker and then a small patch pump.

I haven't thought too much about a biological AP because I wouldn't be a good candidate for that due to other health problems. Would be wonderful if a generic cure to autoimmune diseases could be found without immune suppression therapy, which is what I'm currently on.

 

[DunePlodder]

Hi @tim2000s, out of curiosity, what was your reply?