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mostlysignssomeportents · 2 years ago

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Monopolists want to create human inkjet printers

Even if you don’t have diabetes, you can’t have missed that there’s something really terrible going on with how Americans with diabetes control their illness. Insulin — a century-old drug whose inventors refused any patents — has experienced double-digit, year-on-year price hikes (1123% between 2009–2017 alone!):

https://www.nbcnews.com/business/consumer/desperate-families-driven-black-market-insulin-n730026

Moreover, this is a uniquely American circumstance. In Canada, insulin remains affordable, which is why Americans — especially parents of kids with diabetes — form caravans and cross the northern border to buy insulin from Canadian pharmacies:

https://www.cbc.ca/news/canada/nova-scotia/americans-diabetes-cross-canada-border-insulin-1.5125988

It’s why Americans are starting to brew their own insulin:

https://openinsulin.org/

And it’s why California is getting into the insulin-manufacturing business:

https://khn.org/news/article/california-wants-to-slash-insulin-prices-by-becoming-a-drugmaker-can-it-succeed/

Why do Americans with diabetes go into debt to buy insulin? Why do they ration their insulin, risking comas or even death? In part, it’s the US government’s unwillingness to limit pharma price-gouging. But that can’t be disentangled from the monopolization of the insulin market, an orgy of mergers that allowed a small number of companies to corner the insulin market:

https://prospect.org/health/insulin-racket/

Medical technology is a favorite target of private equity rackets, who understand that when you can threaten your customers’ very lives, they’ll pay — and pay — and pay. That’s why one private equity ghoul celebrated the “golden age of older rectums” before embarking on a spree of colonoscopy monopolization:

https://armandalegshow.com/episode/golden-age-of-older-rectums/

More than one in ten Americans have diabetes. 96 million American adults are pre-diabetic. Diabetes disproportionately strikes racialized Americans, who have less political capital and can be abused with impunity. No wonder that the entire diabetes supply-chain has been targeted by medical profiteers.

https://www.diabetes.org/about-us/statistics/about-diabetes

Take dialysis: private equity firms have bought and merged nearly all the standalone dialysis clinics and transformed them into charnel houses, where production quotas and cost-cutting produces rampant infections among the undersupervised patients who rely on them. Meanwhile, prices have skyrocketed, and those profits have been mobilized to fight any attempt at regulation:

https://prospect.org/health/dialysis-duopoly-spends-big-protect-profits-california/

The monopolization of diabetes goes beyond dialysis and insulin — it also extends into blood sugar monitoring and insulin delivery — the self-monitored, self-administered part of the disease that diabetes patients have taken into their own hands.

In 2013, Dana Lewis worked with John Costik to refine the code he’d written to access the data from his son’s continuous glucose monitor (CGM); they teamed up with Ben West, who was reverse-engineering insulin pumps, and created a “closed loop” system that could automate insulin delivery.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6610599/

They called this OpenAPS, and called themselves loopers. Organizing under the hashtag #WeAreNotWaiting, loopers collaborated to refine these systems into a kind of artificial pancreas, one that took CGM readings, analyzed them with statistical tools to create individual insulin response profiles, and release appropriate insulin doses.

https://openaps.org/

The movement included a lot of techie people who either had diabetes or parented a young child with diabetes — my friend Sulka Haro, an accomplished technologist, was the first looper I knew, who was using OpenAPS to help his young child maintain safe insulin levels while at day-care.

But looping went beyond the tech world; diabetes is extremely common, and lots of people struggle to get their doses right (not least because it can be hard to think clearly when your insulin levels are out of whack). The looper community grew and grew — over the objections of the med-tech industry, who went to war against them.

These companies had a very weird anti-looping message. They claimed that loopers’ exploitation of the defects in their pumps and monitors was, itself, a security risk. Med-tech monopolists like Abbott abused copyright law to force Github to nuke the code that made looping possible:

https://www.diabettech.com/wearenotwaiting/patching-librelink-for-libre2-clearing-the-fud/

Now, it’s clear that med-tech companies have a security problem. Medtronic’s insulin pumps were insecure enough that security researchers demonstrated a proof-of-concept “universal remote for killing people” that exploited its defects:

https://pluralistic.net/2020/08/03/turnkey-authoritarianism/#minimed

But med-tech companies don’t just have a security problem — they have a problem with their security problem. Medtronic ignored bug reports until the “universal remote” was presented. Johnson and Johnson downplayed a potentially lethal software bug in their devices:

https://www.reuters.com/article/us-johnson-johnson-cyber-insulin-pumps-e-idUSKCN12411L

To the extent that med-tech companies are interested in addressing these amateurish (but incredibly dangerous) security defects in their products, their efforts are aimed almost entirely at shutting down loopers’ homebrew technology. Older tech is now prized for its usefulness to loopers:

https://www.theatlantic.com/science/archive/2019/04/looping-created-insulin-pump-underground-market/588091/

Why would med-tech companies be more worried about loopers than they are about people who hijack insulin pumps to harm or even kill people with diabetes? Because open looping systems are a threat to their monopoly plans — plans to create “vertically integrated ecosystems” that lock people with diabetes into buying proprietary insulin for proprietary pumps that connect to proprietary CGMs.

In other words, the market plan is to create an artificial pancreas that works like one of HPs awful inkjet printers — a device that is more concerned with extracting money from your bank account than it is with depositing ink on a page (or insulin in a vein):

https://twitter.com/dustin_driver/status/1534333475062329344

As with other parts of the diabetes supply chain, pumps, CGMs and the algorithms that turn them into a loop are all being sucked into a vortex of corporate mergers, as private equity companies seek to corner the market on your pancreas.

In an open letter to FDA officials, Joanne Milo, raises an alarm about one such merger: CGM giant Dexcom’s bid to buy out pump manufacturer Insulet.

https://thesavvydiabetic.com/open-letter-to-the-us-fda-from-the-savvy-diabetic-re-fda-interoperability-mandate-and-end-user-on-device-continuous-access-to-our-own-data/

As Milo writes, Dexcom CGMs are currently interoperable with a variety of pumps, including Tandem’s. Dexcom has a history of fighting attempts by people with diabetes to access their own data, and the company’s acquisition of a leading insulin pump company will only strengthen their efforts to lock CGM users out of their own devices.

That would be history repeating itself. The 2020 acquisition of Companion by Medtronic triggered an immediate lockdown of Companion’s InPen insulin delivery systems so they’d no longer with with Dexcom’s CGMs. If Dexcom’s acquisition is waved through, the US market will be controlled by three pump/CGM conglomerates. That will be a death-knell for all the pump companies that don’t have a CGM division.

More importantly than these firms’ commercial fortunes is the effect on people with diabetes. The ability of diabetes patients to mix-and-match a pump, a CGM, and an algorithm to moderate their interactions will go up in smoke. If your personal biology isn’t suited to the choices of three giant companies, you’re out of luck.

Milo points out that the baby formula shortage was caused by the monopolization of another key health market. What happens if the market for diabetes tech is gathered into three companies’ hands and they seek “efficiencies” by concentrating production into a few factories and consolidating their supply chains so they depend on just a few offshore suppliers?

That would also be history repeating. Private equity rollups concentrated nearly all production of medical saline drips into one company’s hands. That company closed all its factories save one, in Puerto Rico, where local authorities gifted them with favorable tax treatment. It was great for profits and shareholders, but terrible for America — Hurricane Maria created a months-long, deadly shortage in saline — that is, salty water in a plastic bag.

https://www.hsph.harvard.edu/news/hsph-in-the-news/hurricane-maria-u-s-iv-bag-shortage/

Milo calls on the FDA to “stop treating people with diabetes as ‘black hat’ hackers, forced to reverse-engineer access to their own CGM data.” She points to peer-reviewed studies on the safety and efficacy of community-based development of multi-vendor looping systems:

https://www.thelancet.com/journals/landia/article/PIIS2213-8587(21)00267-9/fulltext)

Though Milo addresses her remarks to the FDA, this is also an issue that Jonathan Kanter at the DoJ, Lina Khan at the FTC, and Tim Wu at the White House should have on their radars. The diabetes crisis is only partially medical — at this point, it primarily economic, a crisis of corporate profit-seeking over human lives.

Image: Cryteria (modified) https://commons.wikimedia.org/wiki/File:HAL9000.svg

CC BY 3.0: https://creativecommons.org/licenses/by/3.0/deed.en

Björn Heller (modfied) https://de.wikipedia.org/wiki/Datei:Wearing_pump.JPG

CC BY 2.0 (German) https://creativecommons.org/licenses/by-sa/2.0/de

[Image ID: A package of HP inkjet ink; it has been modified to incorporate the word- and logo-marks of Insulet and Dexcom. The image on the front of the box has been replaced with a man's bare stomach; the man is wearing an insulin pump. The sides of the box have been overlaid with a Matrix 'code waterfall' effect. The menacing red eye of HAL9000 from 2001: A Space Odyssey glares out of the box.]

#pluralistic

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ultraevonne · 5 years ago

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#saturday We are in time. Don’t tell us 2 wait any longer. Use another excuse, use the truth, but don’t tell us 2 wait any longer. Big #saturdaymood #saturdayvibes #jamesbaldwin #change #stopwhitesupremacy #ancestralhealing #wearenotwaiting #repost @agirlhasnopresident I’ve been sent this video no less than 20 times in the last 48 hours. I watched it once and then I had to sit with it for a bit. I think it’s absolutely fair to be tired of waiting. James Baldwin died in 1987 so he didn’t even live to see us vote in a black president. It makes me ask the question, how long do you wait for things to change before you decide to take a by any means necessary approach? I think it’s a fair question. 🤷🏻‍♀️ #JamesBaldwin #HowMuchTime “How much time do you want, for your ‘progress’?” James Baldwin (at Los Angeles, California) https://www.instagram.com/p/B_-SthqA_Ys/?igshid=1h9ie90pbzm6k

#saturday #saturdaymood #saturdayvibes #jamesbaldwin #change #stopwhitesupremacy #ancestralhealing #wearenotwaiting #repost #howmuchtime

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med20 · 7 years ago

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Dana Lewis has been a vocal proponent of the empowered patient movement and has assiduously chronicled her efforts in managing her Type 1 diabetes including building a better alarm for her continuous glucose monitor when traditional medtech manufacturers gave her unsatisfying answers.

On Friday, at the annual Stanford Medicine X conference at Stanford University in California that kicked off Friday and continues through the weekend, Lewis announced a new role for herself: the patient as principal investigator.

The study/project funded by Robert Wood Johnson Foundation is called”Learning to not wait: Opening pathways for discovery, research, and innovation in health and healthcare.” For the next 18 months, the project aims at studying data and innovation coming out of the diabetes community with a goal to eventually identify its needs and then create a resource framework that can help to scale such a community patient effort.

“This is significant because as patient I am the principal investigator of the project … and that project starts today,” Lewis declared to loud cheers and applause from the audience. ”

The genesis of the project occurred when Lewis was approached by Eric Hekler from Arizona State University at another conference who posed the tantalizing question to her: As a community, the diabetes patient group has achieved a lot — even a do-it-yourself-artificial-pancreas — but what more could be achieved if the community collaborated with researchers?

To that end, the project will have an on-call data science team that can answer thorny questions that may bubble up from the diabetes patient community who are DIY researchers in their own right. In a blog post, announcing the project Lewis points to some of these questions:

How does sensitivity change during growth spurts, during periods of inactivity, or when changing insulin types?

What are some of the most successful mealtime insulin dosing strategies? Etc.

The project will also allow patients to submit a research question and have that research be done.

#stanford university #WeAreNotWaiting #DIY Medicine #Health Innovation #Digital Health #Diabetes #Artificial Pancreas #SXSH #hcsm #medtech #Dana Lewis

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thediabeticsurvivor · 5 years ago

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👋😊Say hi to Aaron ( @glucosenough ) with his #pancreascopilot building his @myomnipod DIY loop - #wearenotwaiting 🤘~ Thanks for rocking the PANCREAS Co-Pilot T-shirt ~ #dexcom #insulin #insulinpump #diabetestype1 #diabetestyp1 #rileylink #loop #bolus #beyondtype1 #dexcom #diabeetus #jdrf #diabetes https://www.instagram.com/p/B4Pd_WTBB-F/?igshid=16zbvxe17srb0

#pancreascopilot #wearenotwaiting #dexcom #insulin #insulinpump #diabetestype1 #diabetestyp1 #rileylink #loop #bolus #beyondtype1 #diabeetus #jdrf #diabetes

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wee5macs · 6 years ago

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Happy 6th diaversary to my total diabadass! We love you, Owen Patrick! #hechosedinner #5guys #heatethewholething #t1dlookslikeme #t1dlife #hungryboy #myheart #diabadass #beyondtype1 #diaversary #sixyears #weneedacure #wearenotwaiting (at Five Guys) https://www.instagram.com/p/Bwnedw7lqbK/?utm_source=ig_tumblr_share&igshid=1uiafli46nj3n

#hechosedinner #5guys #heatethewholething #t1dlookslikeme #t1dlife #hungryboy #myheart #diabadass #beyondtype1 #diaversary #sixyears #weneedacure #wearenotwaiting

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suzanneshannon · 5 years ago

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This changes everything for the DIY Diabetes Community - TidePool partners with Medtronic and Dexcom

I don’t speak in hyperbole very often, and I want to make sure that you all understand what a big deal this is for the diabetes DIY community. Everything that we’ve worked for for the last 20 years, it all changes now. #WeAreNotWaiting

"You probably didn’t see this coming, [Tidepool] announced an agreement to partner with our friends at Medtronic Diabetes to support a future Bluetooth-enabled MiniMed pump with Tidepool Loop. Read more here: https://www.tidepool.org/blog/tidepool-loop-medtronic-collaboration"

Translation? This means that diabetics will be able to choose their own supported equipment and build their own supported FDA Approved Closed Loop Artificial Pancreases.

Open Source Artificial Pancreases will become the new standard of care for Diabetes in 2019

Every diabetic engineer every, the day after they were diagnosed, tries to solve their (or their loved one's) diabetes with open software and open hardware. Every one. I did it in the early 90s. Someone diagnosed today will do this tomorrow. Every time.

I tried to send my blood sugar to the cloud from a PalmPilot. Every person diagnosed with diabetes ever, does this. Has done this. We try to make our own systems. Then @NightscoutProj happened and #WeAreNotWaiting happened and we shared code and now we sit on the shoulders of people who GAVE THEIR IDEAS TO USE FOR FREE.

Here's the first insulin pump. Imagine a disease this miserable that you'd choose this. Type 1 Diabetes IS NOT FUN. Now we have Bluetooth and Wifi and the Cloud but I still have an insulin pump I bought off of Craigslist.

Imagine a watch that gives you an electrical shock so you can check your blood sugar. We are all just giant bags of meat and water under pressure and poking the meatbag 10 times a day with needles and #diabetes testing strips SUUUUCKS.

The work of early #diabetes pioneers is being now leveraged by @Tidepool_org to encourage large diabetes hardware and sensor manufacturers to - wait for it - INTEROPERATE on standards we can talk to.

Just hours after I got off stage speaking on this very topic at @RefactrTech, it turns out that @howardlook and the wonderful friends at @Tidepool_org like @kdisimone and @ps2 and pioneer @bewestisdoing and others announced there are now partnerships with MULTIPLE insulin pump manufacturers AND multiple sensors!

We the DIY #diabetes community declared #WeAreNotWaiting and, dammit, we'd do this ourselves. And now TidePool expressing the intent to put an Artificial Pancreas in the damn App Store - along with Angry Birds - WITH SUPPORT FOR WARRANTIED NEW BLE PUMPS. I could cry.

You see this #diabetes insulin pump? It’s mine. See those cracks? THOSE ARE CRACKS IN MY INSULIN PUMP. This pump does not have a warranty, but it’s the only one that I have if I want an open source artificial pancreas. Now I’m going to have real choices, multiple manufacturers.

It absolutely cannot be overstated how many people keep this community alive, from early python libraries that talked to insulin pumps, to man in the middle attacks to gain access to our own data, to custom hardware boards created to bridge the new and the old.

To the known in the unknown, the song in the unsung, we in the Diabetes Community appreciate you all. We are standing on the shoulders of giants - I want to continue to encourage open software and open hardware whenever possible. Get involved.

Also, if you're diabetic, consider buying a Nightscout Xbox Avatar accessory so you can see yourself represented while you game!

Oh, and one other thing, journalists who cover the Diabetes DIY community, please let us read your articles before you write them. They all have mistakes and over-generalizations and inaccuracies and it's awkward to read them. That is all.

Sponsor: Manage GitHub Pull Requests right from the IDE with the latest JetBrains Rider. An integrated performance profiler on Windows comes to the rescue as well.

This changes everything for the DIY Diabetes Community - TidePool partners with Medtronic and Dexcom published first on https://deskbysnafu.tumblr.com/

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philipholt · 5 years ago

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This changes everything for the DIY Diabetes Community - TidePool partners with Medtronic and Dexcom

Translation? This means that diabetics will be able to choose their own supported equipment and build their own supported FDA Approved Closed Loop Artificial Pancreases.

Open Source Artificial Pancreases will become the new standard of care for Diabetes in 2019

The work of early #diabetes pioneers is being now leveraged by @Tidepool_org to encourage large diabetes hardware and sensor manufacturers to - wait for it - INTEROPERATE on standards we can talk to.

Also, if you're diabetic, consider buying a Nightscout Xbox Avatar accessory so you can see yourself represented while you game!

Sponsor: Manage GitHub Pull Requests right from the IDE with the latest JetBrains Rider. An integrated performance profiler on Windows comes to the rescue as well.

This changes everything for the DIY Diabetes Community - TidePool partners with Medtronic and Dexcom published first on http://7elementswd.tumblr.com/

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just4programmers · 6 years ago

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Lighting up my DasKeyboard with Blood Sugar changes using my body's REST API

I've long blogged about the intersection of diabetes and technology. From the sad state of diabetes tech in 2012 to its recent promising resurgence, it's clear that we are not waiting.

If you're a Type 1 Diabetic using a CGM - a continuous glucose meter - you'll want to set up Nightscout so you can have a REST API for your sugar. The CGM checks my blood sugar every 5 minutes, it hops via BLE over to my phone and then to the cloud. You'll want your sugars stored in cloud storage that YOU control. CGM vendors have their own cloud, but we can easily bridge over to a MongoDB database.

I run Nightscout in Azure and my body has a REST API. I can do an HTTP GET like this:

/api/v1/entries.json?count=3

and get this

[ { _id: "5c6066d477b2a69a0a7810e5", sgv: 143, date: 1549821626000, dateString: "2019-02-10T18:00:26.000Z", trend: 4, direction: "Flat", device: "share2", type: "sgv" }, { _id: "5c6065a877b2a69a0a7801ce", sgv: 134, date: 1549821326000, dateString: "2019-02-10T17:55:26.000Z", trend: 4, direction: "Flat", device: "share2", type: "sgv" }, { _id: "5c60647b77b2a69a0a77f381", sgv: 130, date: 1549821026000, dateString: "2019-02-10T17:50:26.000Z", trend: 4, direction: "Flat", device: "share2", type: "sgv" } ]

I can change the URL from a .json to a .txt and get this

2019-02-10T18:00:26.000Z 1549821626000 143 Flat 2019-02-10T17:55:26.000Z 1549821326000 134 Flat 2019-02-10T17:50:26.000Z 1549821026000 130 Flat

The "flat" value at the end is part of an enum that can give me a generalized trend value. Diabetics need to manage our sugars at the least hour by house and sometimes minute by minute. As such it's super important that we have "glanceable displays." That means anything at all that gives me a sense (a sixth sense, if you will) of how I'm doing.

That might be:

Alexa, what's my blood sugar?

Adding sugar numbers and trends to your Git/PATH prompt in your shell

An Arduino with an LCD

A wall-mounted dakBoard Family Calendar in a shared space that also shows my blood sugar

I got a Das Keyboard 5Q recently - I first blogged about Das Keyboard in 2006! and noted that it's got it's own local REST API. I'm working on using their Das Keyboard Q software's Applet API to light up just the top row of keys in response to my blood sugar changing. It'll use their Node packages and JavaScript and run in the context of their software.

However, since the keyboard has a localhost REST API and so does my blood sugar, I busted out this silly little shell script. Add a cron job and my keyboard can turn from orange (low), to green, yellow, red (high) as my sugar changes. That provides a nice ambient notifier of how my sugars are doing. Someone on Twitter said "who looks at their keyboard?" I mean, OK, that's just silly. If my entire keyboard turns run I will notice it. Again, ambient. I could certainly add an alert and make a klaxon go off if you'd like.

This local keyboard API is meant to send a signal to a single zone or key, so it's hacky of me (and them, really) to make 100+ REST calls to color the whole keyboard. But, it's a localhost call and it's not that spendy. This will go away when I move to their new API. Here's a video of it working.

Got my keyboard keys changing color *when my blood sugar goes up!* @daskeyboard @NightscoutProj #WeAreNotWaiting #diabetes pic.twitter.com/DSBDcrO7RE

— Scott Hanselman (@shanselman) February 8, 2019

What are some other good ideas for ambient sugar alerts? An LCD strip around the monitor (bias lighting)? A Phillips Hue smart light?

Consider also that you could use the glanceable display idea for pulse, anxiety, blood pressure - anything in your body you could hook up to in real- or near-realtime.

Sponsor: Get the latest JetBrains Rider with Code Vision, Rename Project refactoring, and the Assembly Explorer. Improved support for C#, VB.NET, F#, TypeScript, and Angular is all included.

#Scott Hanselman's Blog

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