[Plura-list] Uncle Sam paid to develop a cancer drug and now one guy will get to charge whatever he wants for it

[Cory Doctorow]

Read today's issue online at: https://pluralistic.net/2023/10/19/solid-tumors/

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This is the final week to back the Kickstarter campaign for the audiobook of my next novel, *The Lost Cause*. These kickstarters are how I pay my bills, which lets me publish this free newsletter nearly every day. If you enjoy my work, please consider backing!

http://lost-cause.org

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Today (Oct 19), I'm in Charleston, WV to give the 41st annual McCreight Lecture in the Humanities:

https://festivallcharleston.com/venue/university-of-charleston/

Tomorrow (Oct 20), I'm at Charleston's Taylor Books from 12h-14h:

http://www.taylorbooks.com/

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Today's links

* Uncle Sam paid to develop a cancer drug and now one guy will get to charge whatever he wants for it: Making billionaires, one patent at a time.

* Hey look at this: Delights to delectate.

* This day in history: 2008, 2013, 2018

* Colophon: Recent publications, upcoming/recent appearances, current writing projects, current reading

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🩳 Uncle Sam paid to develop a cancer drug and now one guy will get to charge whatever he wants for it

The argument for pharma patents: making new medicines is expensive, and medicines are how we save ourselves from cancer and other diseases. Therefore, we will award government-backed monopolies - patents - to pharma companies so they will have an incentive to invest their shareholders' capital in research.

There's plenty wrong with this argument. For one thing, pharma companies use their monopoly winnings to sell drugs, not invent drugs. For every dollar pharma spends on research, it spends three dollars on marketing:

https://www.bu.edu/sph/files/2015/05/Pharmaceutical-Marketing-and-Research-Spending-APHA-21-Oct-01.pdf

And that "R&D" isn't what you're thinking of, either. Most R&D spending goes to "evergreening" - coming up with minor variations on existing drugs in a bid to extend those patents for years or decades:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3680578/

Evergreening got a lot of attention recently when John Green rained down righteous fire upon Johnson & Johnson for their sneaky tricks to prevent poor people from accessing affordable TB meds, prompting this *excellent* explainer from the Arm and A Leg Podcast:

https://armandalegshow.com/episode/john-green-part-1/

Another thing those monopoly profits are useful for: "pay for delay," where pharma companies bribe generic manufacturers *not* to make cheap versions of drugs whose patents have expired. Sure, it's illegal, but that doesn't stop 'em:

https://www.ftc.gov/news-events/topics/competition-enforcement/pay-delay

But it's their money, right? If they want to spend it on bribes or evergreening or marketing, at least *some* of that money is going into drugs that'll keep you and the people you love from enduring unimaginable pain or dying slowly and hard. Surely *that* warrants a patent.

Let's say it does. But what about when a pharma company gets a patent on a life-saving drug that the *public* paid to develop, test and refine? Publicly funded work is presumptively in the public domain, from NASA R&D to the photos that park rangers shoot of our national parks. The public pays to produce this work, so it should belong to the public, right?

That was the deal - until Congress passed the Bayh-Dole Act in 1980. Under Bayh-Dole, government-funded inventions *are* given away - to for-profit corporations, who get to charge us whatever they want to access the things we paid to make. The basis for this is a racist hoax called "The Tragedy Of the Commons," written by the eugenicist white supremacist Garrett Hardin and published by *Science* in 1968:

https://memex.craphound.com/2019/10/01/the-tragedy-of-the-commons-how-ecofascism-was-smuggled-into-mainstream-thought/

Hardin invented an imaginary history in which "commons" - things owned and shared by a community - are inevitably overrun by selfish assholes, a fact that prompts nice people to *also* overrun these commons, so as to get some value out of them before they are gobbled up by people who read Garrett Hardin essays.

Hardin asserted this as a historical fact, but he cited no instances in which it happened. But when the Nobel-winning Elinor Ostrom actually went and looked at how commons are managed, she found that they are robust and stable over long time periods, and are a supremely efficient way of managing resources:

https://pluralistic.net/2023/05/04/analytical-democratic-theory/#epistocratic-delusions

The reason Hardin invented an imaginary history of tragic commons was to justify enclosure: moving things that the public owned and used freely into private ownership. Or, to put it more bluntly, Hardin invented a pseudoscientific justification for giving away parks, roads and schools to rich people and letting them charge us to use them.

To arrive at this fantasy, Hardin deployed one of the most important analytical tools of modern economics: introspection. As Ely Devons put it: "If economists wished to study the horse, they wouldn’t go and look at horses. They’d sit in their studies and say to themselves, ‘What would I do if I were a horse?’"

https://pluralistic.net/2022/10/27/economism/#what-would-i-do-if-i-were-a-horse

Hardin's hoax swept from the fringes to the center and became received wisdom - so much so that by 1980, Senators Evan Bayh and Bob Dole were able to pass a law that gave away publicly funded medicine to private firms, because otherwise these inventions would be "overgrazed" by greedy people, denying the public access to livesaving drugs.

On September 21, the NIH quietly published an announcement of one of these pharmaceutical transfers, buried in a list of 31 patent assignments in the Federal Register:

https://public-inspection.federalregister.gov/2023-20487.pdf

The transfer in question is a patent for using T-cell receptors (TCRs) to treat solid tumors from HPV, one of the only patents for treating solid tumors with TCRs. The beneficiary of this transfer is Scarlet TCR, a Delaware company with no website or SEC filings and ownership shrouded in mystery:

https://www.bizapedia.com/de/scarlet-tcr-inc.html

One person who pays attention to this sort of thing is James Love, co-founder of Knowledge Ecology International, a nonprofit that has worked for decades for access to medicines. Love sleuthed out at least one person behind Scarlet TCR: Christian Hinrichs, a researcher at Rutgers who used to work at the NIH's National Cancer Institute:

https://www.nih.gov/research-training/lasker-clinical-research-scholars/tenured-former-scholars

Love presumes Hinrichs is the owner of Scarlet TCR, but neither the NIH nor Scarlet TCR nor Hinrichs will confirm it. Hinrichs was one of the publicly-funded researchers who worked on the new TCR therapy, for which he received a salary.

This new drug was paid for out of the public purse. The basic R&D - salaries for Hinrichs and his collaborators, as well as funding for their facilities - came out of NIH grants. So did the funding for the initial Phase I trial, and the ongoing large Phase II trial.

As David Dayen writes in *The American Prospect*, the proposed patent transfer will make Hinrichs a very wealthy man (Love calls it "generational wealth"):

https://prospect.org/health/2023-10-18-nih-how-to-become-billionaire-program/

This wealth will come by charging us - the public - to access a drug that we paid to produce. The public took all the risks to develop this drug, and Hinrichs stands to become a billionaire by reaping the rewards - rewards that will come by extracting fortunes from terrified people who don't want to die from tumors that are eating them alive.

The transfer of this patent is indefensible. The government isn't even waiting until the Phase II trials are complete to hand over our commonly owned science.

But there's still time. The NIH is about to get a new director, Monica Bertagnolli - Hinrichs's former boss - who will need to go before the Senate Health, Education, Labor and Pensions Committee for confirmation. Love is hoping that the confirmation hearing will present an opportunity to question Bertagnolli about the transfer - specifically, why the drug isn't being nonexclusively licensed to *lots* of drug companies who will have to compete to sell the cheapest possible version.

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🩳 Hey look at this

* Mazda’s DMCA takedown kills a hobbyist’s smart car API tool https://arstechnica.com/cars/2023/10/mazdas-dmca-takedown-kills-a-hobbyists-smart-car-api-tool/ (h/t Slashdot)

* Every member of Bandcamp union bargaining team was laid off in huge cuts at Oakland firm https://www.sfgate.com/tech/article/bandcamp-bargaining-union-layoffs-songtradr-18432047.php (h/t Super Punch)

* The Techno-Optimist Manifesto, redacted by Ben Grosser https://bengrosser.com/files/Techno-Optimist-Manifesto-Andreessen-redacted-by-Grosser.pdf (h/t Today in Tabs)

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🩳 This day in history

#15yrsago You’ll need a passport to buy a mobile phone in the UK https://web.archive.org/web/20081121071114/http://www.timesonline.co.uk/tol/news/politics/article4969312.ece

#15yrsago Photos of facepalming financiers https://web.archive.org/web/20081011031721/http://brokershandsontheirfacesblog.tumblr.com/

#10yrsago Venn diagram of anticonventional objects https://brucesterling.tumblr.com/post/64469207921/prettier-versions-of-an-earlier-sketch-of-mine

#10yrsago Snowden’s CIA career taught him that going through channels achieved nothing https://www.nytimes.com/2013/10/18/world/snowden-says-he-took-no-secret-files-to-russia.html

#5yrsago RIP, Little Free Library founder Todd H. Bol https://www.startribune.com/after-cancer-diagnosis-little-free-library-founder-todd-bol-feels-like-most-successful-person-i-know/497826391/

#5yrsago Apple’s new parental control: Daily Stormer is in, sex-ed is out https://www.vice.com/en/article/8xj3bx/new-iphone-parental-controls-block-searches-for-sex-education

#5yrsago An interactive map of China’s wildcat strikes https://maps.clb.org.hk/

#5yrsago California tenants receive rent-hike threats that will only be rescinded if rent-control initiative fails https://newrepublic.com/article/151783/deceptive-shameful-lucratively-funded-war-rent-control

#5yrsago Wanna get into Harvard? Just ask your parents to donate a building https://www.thecrimson.com/article/2018/10/18/day-three-harvard-admissions-trial/

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🩳 Colophon

Today's top sources:

Currently writing:

* A Little Brother short story about DIY insulin PLANNING

* Picks and Shovels, a Martin Hench noir thriller about the heroic era of the PC. FORTHCOMING TOR BOOKS JAN 2025

* The Bezzle, a Martin Hench noir thriller novel about the prison-tech industry. FORTHCOMING TOR BOOKS FEB 2024

* Vigilant, Little Brother short story about remote invigilation. FORTHCOMING ON TOR.COM

* Moral Hazard, a short story for MIT Tech Review's 12 Tomorrows. FIRST DRAFT COMPLETE, ACCEPTED FOR PUBLICATION

* Spill, a Little Brother short story about pipeline protests. FORTHCOMING ON TOR.COM

Latest podcast: The Lost Cause (excerpt) https://craphound.com/news/2023/10/12/the-lost-cause-excerpt/

Upcoming appearances:

* 41st annual McCreight Lecture in the Humanities (Charleston, WV), Oct 19
https://festivallcharleston.com/venue/university-of-charleston/

* Taylor Books (Charleston, WV), Oct 20, 12h-14h
http://www.taylorbooks.com/

* Seizing the Means of Computation (Edinburgh Futures Institute), Oct 25
https://efi.ed.ac.uk/event/seizing-the-means-of-computation-with-cory-doctorow/

* The Internet Con at the Internet Archive (virtual), Oct 31
https://www.eventbrite.com/e/book-talk-the-internet-con-tickets-730939137637

Recent appearances:

* Economics and Other Science Fictions (Everyday Anarchism)
https://www.everydayanarchism.com/103-debt-discussion-2-economics-and-other-science-fictions-with-cory-doctorow/

* Grim Grinning Ghosts (That Hallowe'en Podcast)
https://thathalloweenpodcast.libsyn.com/grim-grinning-ghosts-with-author-cory-doctorow

* 1000 w/Ron Placone
https://podcasters.spotify.com/pod/show/1000wronplacone/episodes/Cory-Doctorow---004-e2a420a


Latest books:

* "The Internet Con": A nonfiction book about interoperability and Big Tech (Verso) September 2023 (http://seizethemeansofcomputation.org). Signed copies at Book Soup (https://www.booksoup.com/book/9781804291245).

* "Red Team Blues": "A grabby, compulsive thriller that will leave you knowing more about how the world works than you did before." Tor Books http://redteamblues.com. Signed copies at Dark Delicacies (US): and Forbidden Planet (UK): https://forbiddenplanet.com/385004-red-team-blues-signed-edition-hardcover/.

* "Chokepoint Capitalism: How to Beat Big Tech, Tame Big Content, and Get Artists Paid, with Rebecca Giblin", on how to unrig the markets for creative labor, Beacon Press/Scribe 2022 https://chokepointcapitalism.com

* "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

* "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?sk=f6cd10e54e20a07d4c6d0f3ac011af6b) (signed copies: https://www.darkdel.com/store/p2024/Available_Now%3A__How_to_Destroy_Surveillance_Capitalism.html)

* "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

* "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/p2682/Corey_Doctorow%3A_Poesy_the_Monster_Slayer_HB.html#/.

Upcoming books:

* The Lost Cause: a post-Green New Deal eco-topian novel about truth and reconciliation with white nationalist militias, Tor Books, November 2023

* The Bezzle: a sequel to "Red Team Blues," about prison-tech and other grifts, Tor Books, February 2024

* Picks and Shovels: a sequel to "Red Team Blues," about the heroic era of the PC, Tor Books, February 2025

* Unauthorized Bread: a graphic novel adapted from my novella about refugees, toasters and DRM, FirstSecond, 2025

This work - excluding any serialized fiction - is licensed under a Creative Commons Attribution 4.0 license. That means you can use it any way you like, including commercially, provided that you attribute it to me, Cory Doctorow, and include a link to pluralistic.net.

https://creativecommons.org/licenses/by/4.0/

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