DIY-abetes glucose monitors
October 4, 2018 7:37 AM   Subscribe

"By some estimates, as many as 2,000 people around the world have used a home-built pancreas, cobbled together mostly via social media and the free-code clearinghouse GitHub. Tech support consists of parents and patients who use Facebook Messenger or email to help newcomers fix bugs or revive busted equipment. There are plenty of potential converts: In the U.S. alone, about 1.3 million people have Type 1 diabetes, and there are indications the technology could also help some sufferers of Type 2, the group that accounts for most of the world’s 422 million diabetes cases….

"The DIY pancreas movement would never have happened if not for a [Medtronic] blunder. In 2011 a pair of security researchers alerted the public that the wireless radio frequency links in some of the company’s best-selling insulin pumps had been left open to hackers."

The parents’ Facebook group is called Looped.
Some people use Dexcom devices; you can learn more about that at the Nightscout site.
Meanwhile, seeing the demand, big industry players have made forays into this product space -- with mixed results.
posted by GrammarMoses (11 comments total) 31 users marked this as a favorite

Dang it, I missed that one. Thanks, zamboni.
posted by GrammarMoses at 8:26 AM on October 4, 2018

Scott Hanselman is a technology person working at Microsoft, is a Type I diabetic and has spoken about this with frequency. Just last month, he posted a long update about the state of diabetes technology in 2018.

As a Type I diabetic of 25 some years, I find this stuff promising! Even in recent years, we've gotten cheaper access to light versions of continuous blood monitors. I'm incredibly fortunate to live in the UK, so the NHS has my back on this stuff. probably don't want to mod an insulin pump that you don't own. Since the NHS owns my pump, this stuff is offlimits to me without forking out for an insulin pump all of my own.

The NHS is obviously cost sensitive in the long run and it will be genuinely exciting to see the push for more, cheaper, closed looped systems to the NHS (via NICE), as their positive effects are (hopefully) shown.
posted by sarcas at 9:26 AM on October 4, 2018 [4 favorites]

Also a thread about the diy pancreas from last year.
posted by lumpenprole at 9:38 AM on October 4, 2018 [2 favorites]

I can't even get my insurance company to pay for my CGM sensors. Well, they will pay for them, but only from one particular specialty pharmacy. And the pharmacy isn't carrying them right now because they're involved in some kind of dispute with the manufacturer.
posted by The Underpants Monster at 9:46 AM on October 4, 2018

Favourited for the post title.
posted by clawsoon at 12:17 PM on October 4, 2018 [2 favorites]

I have very mixed feelings about these. It's easy to get things working with dedicated DIYers who all read the manual, but commercialization of such tech can be fiendishly difficult.

On the other hand, most Type I diabetics are free to kill themselves using injected insulin with no regulatory supervision from day 1 after they leave the hospital, so is tweaking an algorithm any more or less dangerous?

I would like to see the code that is "calling" what activity is happening (based on, I assume, the phone's accelerometer) -- the roller coaster / snowboarding example from the linked article is especially egregious.
posted by benzenedream at 12:37 PM on October 4, 2018

The author doesn't know what they are talking about.

The controller costs $250 to make but a manufactured, hypothetical system could cost $7,000. That is a poor comparison because the Farnsworth system's price doesn't include everything you need for it to work. You need a CGM which costs about $4,500 a year without insurance. Then there is the insulin pump which costs $4,000.

"He despised needing to retreat to the corner of a party to prick his finger and test his blood sugar, and he couldn’t stand how his pump itched and came unstuck during yoga."
That pump is still getting unstuck. You need one in both systems.

"Kate could then watch Sydney’s blood sugar move on her watch in real time during the day, texting her daughter if she saw any irregularities. And Sydney could watch her blood sugar move without drawing attention to herself in class."
That is what a CGM does. The app on my phone has done this for years. My husband could get that data right on his phone too.

"In June 2014, West met Seattle couple Dana Lewis and Scott Leibrand, who had written an algorithm that could suggest insulin doses."
Cool. Bet that doesn't take into account carbs, which is all part of the "welcome to diabetes, here is how you dose." education medical professionals do. Please write an algorithm to improve access to health care instead.

This article may as well be a picture of a jellyfish with the caption "local mom found this diabetes hack doctors hate".
posted by munchingzombie at 1:07 PM on October 4, 2018 [14 favorites]

Oh wow I am with munchingzombie on this one -- my wife is type 1 and literally everything covered in this article is exactly the technology currently available to those with good enough insurance to afford it. The closed-loop system (which is really what they're talking about here) hasn't been approved by the FDA for a couple of reasons: artificial insulin doesn't work as fast as real insulin, so most diabetics pre-bolus insulin before they eat (which a closed-loop system can't do), and most CGM technology isn't full-proof enough to rely on exclusively, so most CGM users use CGMs to watch trends, and then fingerstick when they're about to do their own delivery of insulin.

Anyway, I'm happy to see Bloomberg Business is publishing articles they've found on Outbrain.
posted by incessant at 1:43 PM on October 4, 2018 [5 favorites]

Meanwhile Medtronic is current recalling a large number of their flagship 670g insulin pumps because a software problem can cause the alarm system to not alarm.

Apparently nobody at Medtronic thought online software patches were a viable idea, so they have to recall everything.

The pump is amazing when it's working, but my wife had already returned one under warranty and now we are dealing with the alarm recall.

Medical tech shouldn't be this .flakey
posted by COD at 9:50 PM on October 5, 2018

I'm just starting back on a Medtronic pump after using an Omnipod for years. Thanks for the recall tipoff; I'll check and see if mine's affected.
posted by The Underpants Monster at 12:15 AM on October 6, 2018

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