* “Market-rate housing will make your city cheaper.” Obvious, but one sees many, even generally smart people, blaming everything under the sun apart from supply restrictions. Overall, “Americans Are Mad About All the Wrong Costs”—we should be wrong about housing costs, because housing costs are the biggest part of most people’s budgets. Yet we’re getting what we’ve voted for, for decades: we oppose new housing anywhere near us, and then costs rise. I’ve read claims that voters are like children, unhappy when the things we collectively vote for come to pass and harm us in predictable ways.
* “Deep Reading Will Save Your Soul: Real learning has become impossible in universities. DIY programs offer a better way.” To me the hardest part is finding books worth reading deeply. Most classics I find unsatisfying.
* “People Unlike Me: Political ideologies tend to suit the people who promote and believe them, and not suit others. This makes governance difficult.” A useful admission that policies good for one group (like drug liberalization) may be bad for others (like people with poor conscientiousness or impulsiveness issues).
* Claim that “China Is Losing the Chip War: Xi Jinping picked a fight over semiconductor technology—one he can’t win.” I don’t know enough to evaluate this for truth.
Bess and I went to Manifest, which bills itself as “A festival for forecasting and prediction markets,” a description that may technically be true but fails to capture the spirit; to my eye and experience, it’s maybe more accurately stated as “Substack and Twitter live” or “a mixture of festival-conference-party-Burning-Man for nerds with many interests to show up and enjoy each other’s company.” Which is just to the temperament of Bess and me (though I’m still on a legacy WordPress platform; a year ago I thought about switching to Substack but didn’t because I thought I’d not be alive long enough for the switch to matter). Bess excitedly exclaimed it to be “Nerd Camp!” with a sort of takes-one-to-know-one gleam in her eye.
There’s something about seeing people in real life that makes me bearish on efforts to build the metaverse, which may be an improvement on text / audio / video but still don’t seem likely to replace live in-person interactions. Meeting in real life creates a kind of vividness and immediacy that online doesn’t (yet) create, and Manifest does just that. I recognized a huge number of people whose Substacks I’ve commented on and whose tweets I’ve replied to. A lot of people in turn recognized Bess and me, for our writing about the FDA killing people via inaction. Manifest attendees manifested a kind of earnestness that a better world is possible, that data should guide actions, that one should change one’s mind in the face of new evidence, and that what initially seems to be true may not be true. Those are all useful traits in getting past the FDA’s PR (something like: “we keep you safe from predatory drug companies”) and into the FDA’s substance (something like: “we don’t care if people are dying while our process runs; our process needs to run”). Nerd Camp was filled with people who believe that a good future is based on better predictions, and better predictions take both knowledge and calculated risk. No risk, no future: at least not a future that circumvents stagnation, and certainly not a future I am in.
The vast majority of the world’s information and ideas aren’t written down or otherwise recorded. It or they exist in people’s head and are expressed verbally. Gatherings of smart people don’t seem like they’re likely to be obsolete soon, which might qualify as bearish on AI. A humorous conspiracy theory called “Dead internet theory” claims that “the internet now consists mainly of bot activity and automatically generated content manipulated by algorithmic curation, minimizing organic human activity.” Manifest is an existence proof of the opposite, a real-life CAPTCHA: the people writing Substacks and making podcasts are gathered in one place. Would the people be the same as their online personas? Could they be better? One guy recognized my nametag and was like: “Hey, you’re the guy who lived!” Bess and I laughed.
Every single person Bess and I talked to was substantive, curious, and interesting, with the middle term being especially important. Given my lack of tongue, a common non-verbal reaction I get in everyday life is the other person thinking: “Why is the retard trying to get my attention?” I could use a more politically correct term, but I get the impression that that’s the one running in their mind. Anyway, I sensed none or almost none of that, despite being in fact very hard to understand. It’s a little like having a heavy foreign accent that no one else has; I’ve noticed that people who work in the tech industry, where people commonly show up from all over, are on average better at understanding me. I now do poorly at conferences yet I’m glad to have made Manifest. Bess observes that there is an assumption of competency at Manifest. Yes, many people had read us, but certainly not all. Everyone there, regardless of age or gender, was approaching interactions from a place of assumed reciprocal intelligence. Maybe this is what it’s like when everyone in a room acknowledges theory of mind. Or maybe it was from the sort of temporary tribalism conferences can create: “I think may people in this room are smart, therefore I am smart, therefore I, and everyone here, is part of this smart group of people.” Whatever it is, it’s a great way to approach a weekend.
One person said that she feels like everyone is somewhat autistic, and all conversation is in the form of parallel, consensual info-dump, or nothing. To me, greater informational content is great. A friend of ours met us on Sunday night, and she described it as a “carnival of the neurodivergent.” To which I say: great!
AI was a big issue there, and there seemed to be more people working on advancing AI than there were people working to advancing what’s sometimes called AI safety. The accelerationists and safetyists would be in the same room, sometimes debating each other, sometimes not. It’s interesting how discontinuous the AI contingent, whether safety or accelerationist, think the near future is going to be.
I’m undoubtedly not the first to contrast, on the one hand, claims of unique historical discontinuity from AI changing the world with, on the other hand, the stasis evident in the physical plant of Berkeley and other Bay Area cities. Bay Area cities have built hardly anything since the ‘70s, if not earlier. Infrastructure is ancient and rundown (including housing, roads, transit). We’re going to build the future in every respect, except for the physical world in which all the AI programmers live. Not even the many billionaires of the Bay Area have managed to build modern subways. Yet there is some upside to not having built “modern” infrastructure when that “infrastructure” consists of stroads and parking lots. Berkeley is still a walking or biking town, and Bess and I walked more than I have since the surgery in May 2023.
On a personal level, Manifest was amazing because it’s the first time since losing my tongue that Bess and I have gone anywhere or done much primarily for fun. Cancer treatment and cancer-related disability have dominated my life in the last year. Manifest first got on my radar when Austin Chen (co-founder of Manifold, the prediction market) emailed me in March. I looked at the Manifest website and thought: “This sounds awesome.” Bess is less keyed into Internet nerds than I am, and I had to try to explain to her who many of these people are; it’s a bit like a European trying to explain soccer to an American, or, worse, an American trying to explain American football to a European.[1] But she was happy at the prospect of going somewhere that isn’t a hospital and doing something that isn’t treatment.[2] We’ve lived in Arizona for four years and found few of our people here.[3] We’d probably have been better served moving to Austin, but the market for ER doctors is worse there, and we didn’t realize that headlines like “Apartment rents plummet in Austin” due to new housing construction would become common, while Arizona governor Katie Hobbs would veto housing bills designed to increase supply. Crazy! Anyway, most Manifest attendees appeared to be from California, but a significant number were from Austin.
If me going to Manifest had been a Manifold prediction market, the probability would’ve gone up and, mostly down, between me learning about the conference months before and getting there. Much had to go well, in a year and a half where almost nothing has gone well, that, despite booking plane tickets and a place to stay, I wouldn’t have placed a large-value bet on myself. In April I was terribly sick: tumors popped from the left side of my neck, making both Bess and me wonder if I’d live until May. On April 15 I began treatment with Seagen’s PDL1V, and the second dose of PDL1V on April 22 generated numerous adverse side effects. That week I also got some radiation therapy to try and counter the neck tumors. The good news is that the neck tumors necrosed and exited through a hole in the skin. The bad news is that I felt like garbage between April 22 to May 6, with side effects that challenged my ability to remain on treatment. But a new, extensive drug regimen helped me stay the course.
Then, last week, on Sunday, June 2, I noticed pain from the right side of my neck. Looking at it showed an unhappy red splotch—an infection. I started Keflex, an antibiotic, and hoped it would resolve the infection in time. Bess, doing what doctors do, poked at it (despite my protestations) and got some pus out. Unfortunately, I packed the Keflex in a suitcase with my Vitamix, checked the suitcase on the way to treatment to Utah, and then Southwest left the suitcase in Phoenix, which touched off predictable problems and resolutions. By Thursday I hoped I was well enough to fly, and that I wouldn’t need to upgrade from Keflex to Augmentin; the latter is like napalming one’s GI tract. Every morning during the conference, I wound up having to fight some gnarly GI problems, but I managed to get to Manifest by about noon. I managed to defy the implicit odds.
Lighthaven, the venue, was great, and the fridges well-stocked with Soylent, and I also saw pouches of Maya Kaimal Indian food. I didn’t know the specific brand name of Maya Kaimal, but I have some of them in my apartment and so could check. I saw a couple of Framework laptops, too, despite having seen just a few of them in the wild.
Robin Hanson calls it “probably my most pleasant event of the last year, since last year’s Manifest. :)”. With Robin, I feel like “pleasant” might be a slightly suspect word!
Bryne Hobart’s generalization of conference-going is behind a paywall, but he says that “The conference solves for specialization by inviting people around whom useful micro-subcultures nucleate, and it synthesizes high real estate prices by charging an entry fee (and plane tickets plus hotels are also going to have the same economic effect; they make time more expensive, so they raise the relative value of the highest-utility interactions)” and “Five minutes of in-person conversation create a more tangible sense of who someone is than years of occasional emailing, even if the emails are a better representation of their mental models. So future discussions are higher-bandwidth.” I’d not read until after writing a draft of the rest of this essay, I will add.
Bess says: “I will 100% return to nerd camp with you next year.” She is also looking forward to maintaining real-world connections via the internet.
[1] Which I’ve attempted, although not very successfully: I find American football tedious.
[2] Bess loudly and adamantly denies this characterization. “I think I know who Scott Alexander and Nate Silver are,” she squawks, like a penguin who wants a fish. “And I have a Substack!” Now she’s glaring at me. Now she’s explaining that she has never been able to understand the rules of football but is at least starting to understand the principles of writing for the internet as I’ve explained them. And she reads. Now she’s harrumphing, but is returning to continue editing this essay, so I must not be entirely off base.
[3] “Why stay, then?” you may justifiably ask. Jobs, family, and then me getting cancer all make moving impractical, and the gains from moving lower than they’d be if I were well.
* “Cancer Is Capsizing Americans’ Finances. ‘I Was Losing Everything.’ Higher drug prices, rising out-of-pocket costs and reduced incomes create economic strain for many patients” (wsj, $). Don’t I know it: the time taken by treatment combined with fatigue and exhaustion are murderous to real work, and even to thinking. The side effects of many cancer treatments are themselves so deleterious.
* Turns out that Darling 58, the newly modified chestnut tree that was supposed to be resistant to chestnut blight, is actually Darling 54, which is not so resistant. And so now progress in restoring the American chestnut has been set back years, if not decades.
* “Why a California Plan to Build More Homes Is Failing: Only a few dozen people have built housing under a law allowing them to construct duplexes alongside single-family houses” (wsj, $). It’s notable how few people say things like: “I want my city or state to be governed like California.”
* New Framework laptops are out, with new Intel processors. Framework laptops are famous because they’re designed to be modular, and with easily replaced parts. My big complaint so far is that they don’t offer an OLED screen option, but for a “big complaint,” it’s minor.
* Cold War 2 update. It still seems like hardly anyone is taking this seriously, and building new stuff in the U.S. remains maddeningly difficult.
* “Is Congress having its YIMBY moment?” Let’s hope so. YIMBYism should transcend left and right, too; shouldn’t we all want affordable housing? Maybe “A New Centrism Is Rising in Washington: Call it neopopulism: a bipartisan attitude that mistrusts the free-market ethos instead of embracing it.” I wouldn’t quite agree with the framing, but it is obvious that China is gearing up to attack Taiwan, and that requires thinking differently about a lot—China might not actually pull the trigger (Xi shouldn’t), but it’s putting itself in position to do so.
* “‘He couldn’t wait to join’: thousands of young Russians die in Ukraine war.” Putin is destroying Russia and Ukraine, which one say see more explicitly in “Not Enough Russians: Russia’s population has been in decline for years, and the war in Ukraine has made matters worse.” For decades if not centuries, the smartest thing Russians could do was get out of Russia. That’s still true today.
Most of the “alternative” cancer care groups are quacks and charlatans pitching dubious diets, but “most” is not “all” and an outfit in Mexico called “The Williams Cancer Institute” caught my attention because they’re offering legitimate treatment—for example, they’ll inject legitimate immunotherapy agents like Opdivo straight into tumors.[1] They’ll also perform Pulsed Electric Field (PEF) ablation, which has some research showing potential efficacy; PEF may stimulate tumor antigen release in a way that allows immunotherapies to identify the tumor antigens and thus attack the tumors themselves. The possibility of tumor response from PEF and immunotherapy is real, as opposed to the “eat our special diet” people, or the “energy” healing people, or the homeopathy people.[2]
In “The financial costs of healthcare costs, or, is keeping me alive worth it?”, I wrote about whether from a society-wide perspective the care I’ve been consuming passes a reasonable cost-benefit analysis. But that essay primarily assumes a system in which health insurance or a public healthcare system is paying—I’ve also faced the question more concretely, because the Williams Institute is in Mexico and all payments are cash. Is $200,000 for treatment that would probably not cure me worthwhile?
Bess and I learned about the Williams Institute through an oncologist who had a patient fly down to receive treatment. I don’t know how that person turned out, and the lack of prices on the William Institute’s website is ominous (perhaps they research each prospect and adjust prices based on perceived ability to pay), but Bess and I figured that immunotherapy injections would be useful in a specific situation: when I’m between clinical trials. In that scenario, the previous treatment has stopped working, and I’m not yet eligible to receive the next one. This last happened to me in March. Clinical trials are a lot cheaper than the Williams Institute—the drugmaker pays for the drug itself, and insurance should cover the ancillary care. But clinical trials are only good if I can make it from one to the next.
Most clinical trials have a “washout” period, which means two to six weeks between the cessation of a previous treatment and the start of a new one. That washout period, however, can be enough time for tumors to grow and compromise essential structures, or metastasize into new organs. In addition to the washout period itself, some trials may not be ready to go in the right timeframe—trials are constantly opening and closing. Sometimes they’re full and sometimes they have spaces. Matching patient to trial is an ongoing challenge. In March and April I got caught between trials, with a month elapsing between me learning on Mar. 13 that MCLA-158 / petosemtamab had stopped working and me being able to start Seagen’s PDL1V on Apr. 15. The PDL1V trial only had a two-week washout period for patients who’d failed their previous therapy, but Seagen was switching trial “arms,” and so despite me needing a new trial, I couldn’t be dosed before Apr. 15; I think I was the first person dosed for the new trial arm. An immunotherapy injection from the William Institute might have helped me stay alive, and it’s possible that the next period between trials will allow brain or bone metastases to develop—which truly herald the end.
Immunotherapy injections are actually good ideas, and, like the guy who runs the Williams Institute (“Dr. Williams,” I’m guessing), some interventional radiologists in the U.S. will now do pulsed electrical field (PEF) ablation. Bess found one of the companies that sells PEF machines—the “Aliya” by Galvanize Therapeutics—and contacted Galvanize in order to figure out which docs might do PEF in the U.S.; watch this space for more (Bess is clever and resourceful).[3] PEF is best given in conjunction with an immunomodulator, but I’ve not seen any data indicating PEF and immunotherapies are curative in patients who, like me, don’t respond to systemic immunotherapy. In summer 2023, I got five rounds of systemic pembrolizumab (Keytruda) and it did nothing. Immunotherapy might succeed if it’s potentiated by something like PEF, since PEF sends tumor antigen into the blood stream as an immune trigger. A lot this, however, is theoretical, and not highly supported by research.
Intratumoral injections are no panacea. Moderna’s mRNA-2752, for example, is an intratumoral injection therapy that we’ve heard has not been especially efficacious. There are other efforts underway. It’s not clear that the intratumoral injections are more efficacious than the systemic injections. The overall Williams Institute treatment approach falls into the category of “probably won’t hurt; could help.” So Bess and I filled out their forms and gave them a bunch of my records for evaluation. Given that four tumors live near the surface of my neck, I’m a great candidate for intratumoral injection. Bess and I imagined that each injection session might be something like $10,000, and that’s an amount that seems reasonable trying in order to swing from trial to trial.
Instead, the Williams Institute’s email to us said that they recommend “three to six” treatments of $25,000 – $30,000 each: in short, $200,000 for treatments that are unlikely to do more than buy a few months of extra time, if they do that. Extra time with Bess is nice, but $100,000+ is a lot of money, and I don’t want to leave a black hole of debt behind me for no reason. Two hundred thousand dollars for a therapy that is potentially curative I can see being worth it. The same price for something that is mostly being sold to the super rich and/or to suckers? A lot less attractive. I don’t want to squander scarce resources and the Williams Institute seems like squandering. Others will have different analyses. I think $200,000 is better invested the future. I’m unlikely to be part of that future, but I want it to happen anyway, and to be great.
[1] There are also a bunch of testimonials that conveniently don’t list other treatments the testifiers might’ve received.
[2] I keep getting comments from people regarding other forms of medical-related conspiracy; most of them don’t realize that Andrew Wakefield, the guy who stirred up a lot of conspiracy, simply made up data. He was and is a fraud, and yet millions of people repeat his incorrect claims without realizing as much. Epistemology is hard.
[3] In this sentence, I found it hard not to write that “Bess galvanized Galvanize to tell us who provides PEF.”
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