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Cory Doctorow

Jun 10 • 41 tweets • 14 min read

Even if you don't have diabetes, you know there's something really terrible in US diabetes treatments. Insulin - a century-old drug whose inventors refused any patents - has experienced double-digit, year-on-year price hikes (1123% between 2009-17!):

nbcnews.com/business/consu… 1/

If you'd like an essay-formatted version of this thread to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:

pluralistic.net/2022/06/10/loo… 2/

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:

cbc.ca/news/canada/no… 3/

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

openinsulin.org

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

khn.org/news/article/c… 4/

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. 5/

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:

prospect.org/health/insulin… 6/

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. 7/

That's why one private equity ghoul celebrated the "golden age of older rectums" before embarking on a spree of colonoscopy monopolization:

armandalegshow.com/episode/golden… 8/

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. 9/

No wonder that the entire diabetes supply-chain has been targeted by medical profiteers.

diabetes.org/about-us/stati… 10/

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. 11/

Meanwhile, prices have skyrocketed, and those profits have been mobilized to fight any attempt at regulation:

prospect.org/health/dialysi… 12/

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. 13/

@danamlewis

In 2013, @danamlewis worked with @jcostik to refine his code for accessing his son's continuous glucose monitor (CGM); they teamed up with Ben West, who'd reverse-engineering insulin pumps, and created a "closed loop" to automate insulin delivery.

ncbi.nlm.nih.gov/pmc/articles/P… 14/

@OpenAPS

They called this @OpenAPS, and called themselves #loopers. 15/

Using the hashtag #WeAreNotWaiting, loopers collaborated to make 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.

openaps.org 16/

@sulka

They included a lot of techie people who 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. 17/

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). 18/

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. 19/

@AbbottNews

They claimed that loopers' exploitation of the defects in their pumps and monitors was, itself, a security risk. Med-tech monopolists like @AbbottNews abused copyright law to force @github to nuke the code that made looping possible:

diabettech.com/wearenotwaitin… 20/

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:

pluralistic.net/2020/08/03/tur… 21/

@JNJNews

But med-tech companies don't just have a security problem - they have a security problem problem. Medtronic ignored bug reports until the "universal remote" was presented. @JNJNews downplayed a potentially lethal software bug in their devices:

reuters.com/article/us-joh… 22/

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. 23/

Older tech is now prized for its usefulness to loopers:

theatlantic.com/science/archiv…

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? 24/

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. 25/

@HP

In other words, the plan is for 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

26/

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. 27/

@FDA_Drug_Info

In an open letter to @FDA_Drug_Info officials, @SavvyDiabetic raises an alarm about one such merger: CGM giant @dexcom's bid to buy out pump manufacturer @Insulet_UK.

thesavvydiabetic.com/open-letter-to… 28/

As Milo writes, Dexcom CGMs are currently interoperable with a variety of pumps, including Tandem's. 29/

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. 30/

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. 31/

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. 32/

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. 33/

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. 34/

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? 35/

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. 36/

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.

hsph.harvard.edu/news/hsph-in-t… 37/

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 cites peer-reviewed studies on the safety and efficacy of community-maintainted multi-vendor systems:

thelancet.com/journals/landi…) 38/

@linakhanFTC

Though Milo addresses her remarks to the FDA, this is also an issue that Jonathan Kanter at the DoJ, @linakhanFTC at the @FTC, and @superwuster at the @WhiteHouse should have on their radars. 39/