Today's links
- Monopolists want to create human inkjet printers: The war on your pancreas continues.
- Hey look at this: Delights to delectate.
- This day in history: 2012, 2017, 2021
- Colophon: Recent publications, upcoming/recent appearances, current writing projects, current reading
Monopolists want to create human inkjet printers (permalink)
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:
And it's why California is getting into the insulin-manufacturing business:
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 produce 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.
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:
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 HP's 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.
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 work 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 is primarily economic, a crisis of corporate profit-seeking over human lives.
(Image: Cryteria, CC BY 3.0; Björn Heller, CC BY 2.0 (German); modified)
Hey look at this (permalink)
- Elizabeth Warren hosts a zoom fundraiser for trustbuster (and Aaron Swartz ally) David Segal, who is running for Congress https://secure.actblue.com/donate/dscantimonoply
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Banana-powered random-number generator https://www.valerionappi.it/brng-en/ (h/t Dan Howland)
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Kathryn Judge's debut book, 'Direct: The Rise of the Middleman Economy and the Power of Going to the Source' https://bookshop.org/books/direct-the-rise-of-the-middleman-economy-and-the-power-of-going-to-the-source/9780063041974
This day in history (permalink)
#10yrsago Women beat 18-34 men for tech adoption and purchasing power https://www.theatlantic.com/technology/archive/2012/06/sorry-young-man-youre-not-the-most-important-demographic-in-tech/258087/
#10yrsago Internet freedom activists arrested/detained after Internet freedom conferences https://slate.com/technology/2012/06/cryptocat-creator-nadim-kobeissi-alaa-abd-el-fattah-chiranuch-premchaiporn-and-other-bloggers-arrested.html
#10yrsago Farcical wishlist from Canada’s copyright/pharma lobby: warrantless search, Canadian SOPA, jail time for downloaders, public subsidy of copyright enforcement https://web.archive.org/web/20120610162337/http://www.michaelgeist.ca/content/view/6528/125/
#5yrsago Chinese Apple employees and contractors sold users’ private data for as little as $1.50 https://hongkongfp.com/2017/06/08/china-uncovers-massive-underground-network-apple-employees-selling-customers-personal-data/
#5yrsago “Do you want Catalonia to be an independent country in the form of a republic?” https://www.theguardian.com/world/2017/jun/09/catalonia-calls-independence-referendum-for-october-spain
#5yrsago How EFF cracked printers’ “hidden dots” code in 2005 https://www.youtube.com/watch?v=izMGMsIZK4U
#1yrago Urban broadband deserts: Digital redlining is a policy, not an accident https://pluralistic.net/2021/06/10/flicc/#digital-divide
#1yrago A denialism taxonomy: FLICC (fake experts, logical fallacies, impossible expectations, cherry picking, conspiracy theories) https://pluralistic.net/2021/06/10/flicc/#denialism
#1yrago Prisoners' Inventions: The unmissable new edition of a maker classic for a carceral nation https://pluralistic.net/2021/06/09/king-rat/#mother-of-invention
Colophon (permalink)
Today's top sources: Lane Desborough, Naked Capitalism (https://www.nakedcapitalism.com).
Currently writing:
- Some Men Rob You With a Fountain Pen, a Martin Hench noir thriller novel about the prison-tech industry. Yesterday's progress: 512 words (14034 words total)
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The Internet Con: How to Seize the Means of Computation, a nonfiction book about interoperability for Verso. Yesterday's progress: 555 words (10475 words total)
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Picks and Shovels, a Martin Hench noir thriller about the heroic era of the PC. (92849 words total) – ON PAUSE
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A Little Brother short story about DIY insulin PLANNING
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Vigilant, Little Brother short story about remote invigilation. FIRST DRAFT COMPLETE, WAITING FOR EXPERT REVIEW
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Moral Hazard, a short story for MIT Tech Review's 12 Tomorrows. FIRST DRAFT COMPLETE, ACCEPTED FOR PUBLICATION
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Spill, a Little Brother short story about pipeline protests. FINAL DRAFT COMPLETE
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A post-GND utopian novel, "The Lost Cause." FINISHED
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A cyberpunk noir thriller novel, "Red Team Blues." FINISHED
Currently reading: Analogia by George Dyson.
Latest podcast: Against Cozy Catastrophies https://craphound.com/news/2022/06/05/against-cozy-catastrophies/
Upcoming appearances:
- UK Competition and Markets Authority Data Technology and Analytics conference (London), Jun 15-16
https://www.eventbrite.co.uk/e/cma-data-technology-and-analytics-conference-2022-registration-308678625077 -
A New HOPE (NYC), Jul 24
https://www.hope.net/
Recent appearances:
- Supp-Lie Demand (Bad Faith podcast with Briahna Joy Gray):
https://www.patreon.com/posts/67550669 -
The Sci-Fi Feedback Loop: Mapping Fiction’s Influence on Real-World Tech
https://csi.asu.edu/calendar/events/the-sci-fi-feedback-loop-mapping-fictions-influence-on-real-world-tech/ -
Privacy is the New Celebrity
https://www.buzzsprout.com/1806101/10643084
Latest book:
- "Attack Surface": The third Little Brother novel, a standalone technothriller for adults. The Washington Post called it "a political cyberthriller, vigorous, bold and savvy about the limits of revolution and resistance." Order signed, personalized copies from Dark Delicacies https://www.darkdel.com/store/p1840/Available_Now%3A_Attack_Surface.html
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"How to Destroy Surveillance Capitalism": an anti-monopoly pamphlet analyzing the true harms of surveillance capitalism and proposing a solution. https://onezero.medium.com/how-to-destroy-surveillance-capitalism-8135e6744d59 (print edition: https://bookshop.org/books/how-to-destroy-surveillance-capitalism/9781736205907) (signed copies: https://www.darkdel.com/store/p2024/Available_Now%3A__How_to_Destroy_Surveillance_Capitalism.html)
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"Little Brother/Homeland": A reissue omnibus edition with a new introduction by Edward Snowden: https://us.macmillan.com/books/9781250774583; personalized/signed copies here: https://www.darkdel.com/store/p1750/July%3A__Little_Brother_%26_Homeland.html
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"Poesy the Monster Slayer" a picture book about monsters, bedtime, gender, and kicking ass. Order here: https://us.macmillan.com/books/9781626723627. Get a personalized, signed copy here: https://www.darkdel.com/store/p1562/_Poesy_the_Monster_Slayer.html.
Upcoming books:
- Chokepoint Capitalism: How to Beat Big Tech, Tame Big Content, and Get Artists Paid, with Rebecca Giblin, nonfiction/business/politics, Beacon Press, September 2022
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