CNBC story on DYI Open APS, Looping


#1

Saw this on TV tonight, very good summary.


#2

So great to see a story on anything about T1 where they get everything right. Especially loved the Tidepool guy, a former Amazon developer, expressing how appalled he was by the crappy software he encountered when his daughter was dx’d. Yup. Truly ridiculous.


#3

I think it will be interesting to see as time goes by, if the DYIers switch over to newer pumps. At this point, I think most have not.


#4

Amazing story. Wish I were more computer savvy and had the Medtronic system still. I remember that pump fondly. But it looks like Tidepool and Omni pod are coming together to help us out. Can’t wait.


#5

It’s a good story. What it leaves out, though, is that the Medtronic 670 system uses Guardian sensors and my sense is that most people feel that Dexcom and others have better sensor technology. (I should mention that I’ve never used Medtronic sensors, so I’m just going by hearsay.)
I, for one, would be happy to switch to the 670 if it used Dexcom. As it is, I’m going with Tandem and hoping their automated system gets FDA approval soon.
I considered DIY Looping, but I didn’t feel safe buying someone’s used out-of-warranty Medtronic pump on what felt like a kind of gray market. (Although perhaps that’s the wrong characterization. I think I’m just the kind of person who likes dealing with big well-known companies that provide guarantees and so forth.)


#6

I’ve now been using the DIY Loop for almost two years. I agree with the concerns expressed by @Tnyc that using an old out of warranty pump is a legitimate concern. Now that I have no access to company-sponsored help when something goes awry, I instead seek help from the looping community online. There’s a responsive online community at the Facebook Looped group that can help with almost every situation.

Shifting that ultimate responsibility from a device manufacturer to the user has some side benefits, however. It forces the user to learn more about how the system works and makes them better at dealing with many of the glitches that can arise.

Several months ago when traveling across a few time zones, my Loop system stopped working. It took a fair amount of effort to get it fixed. I ended up skyping with someone who knew a lot more about Loop than I did. We were successful in getting my system back up and running.

I met Howard Look last weekend at a DiabetesMine conference. As @DrBB mentioned, he’s the former Amazon developer and father of a T1D daughter who now serves as the CEO of Tidepool. His daughter uses Loop. I was so impressed with his desire to help the diabetes community through the Tidepool non-profit.

During the conference the news broke that Insulet, the manufacturer of Omnipod, will pursue making the Tidepool Loop software available in a future iteration of the Omnipod system. Even though I am not a user of the Omnipod, many people with diabetes love it. I am excited for them.

One of the best things I like about the DIY system is the ability to set things like insulin targets without the hard-wired “protections” of a system like the Medtronic 670G. The 670G’s program’s glucose target is 120 mg/dL (6.7 mmol/L) and the user can’t change that. While I’m aware that Medtronic did this out of an abundance of caution, I resent not being able to opt out of that hard-wired feature. I don’t need/want protection from myself!

With Loop, I target 83 mg/dL as a default but I set temporary targets many times per day. To help pull down a BG plateaued at 110 (6.1), I’ll set a one or two hour temporary target of 65 mg/dL (3.6). If I anticipate going out for a walk, I will often set a temporary target of 100 (5.6). I use this Loop ability to change BG targets as needed as a way to surf using Loop. While Loop is making a decision every five minutes, I can concentrate my management to higher level actions.

I love the current pace of innovation that’s occurring in the diabetes tech space and I’m certain this pace would not be as rapid if the DIY systems were not leading the way. It’s a classic case of what many business observers would call a disruptive event. The status quo players in the market must respond to this new phenomena, whether they like it or not. I love the fact that this disruption emerged from the grassroots patient community!

I will never go willingly backward with my personal diabetes tech. I am heartened by the efforts of Tandem, Beta Bionics, Insulet and Bigfoot, all of whom have projects expected to become available in the next 12-24 months or so. All these efforts should address well the needs of the diabetes community.


#7

That’s a great way to summarize its major benefit. But the downside being it’s not an off the shelf product (yet), and no 24 hour turnaround as there may be for a pump under warranty. (This year my pump died while out of town on vacation, and was happy to get replacement within 24 hours, delivered on Sunday.


#8

That’s a good point. There’s a lot to recommend the turnkey system of a pump under warranty.

When I go on vacation, I bring my backup pump, backup RileyLink, and backup MDI insulin. People with a working pancreas don’t really appreciate their good fortune!


#9

This is an amazing report. Fairly comprehensive. There are some points that are simplified, like getting a flat line the first night you turn it on. We found we had to learn new strategies with looping and that took time.

@Terry4, you raise a good point with the forced 120 target. Will the Tidepool app require that as well. I thought that was an FDA requirement. With the open source Loop, a user can do whatever he/she wants.

I don’t agree with the Medtronic rep’s comparison to modifying an automobile. Current, non AP pumps leave so much to the patient and Loop provides a layer of protection to a motivated user. Modifying a car would definitely increase risk as the level of sophistication of an automobile is far greater than current pump therapy. I do agree, of course, that a commercially available Loop is what we prefer to using an old Medtronic pump, for sure.