Showing posts with label Medicine. Show all posts
Showing posts with label Medicine. Show all posts

Tuesday, July 28, 2026

Tip of the Iceberg

First of major coverage losses expected as a result of the ‘One Big Beautiful’ bill signed into law one year ago.

Nearly 500,000 moderate-income New Yorkers will be dumped from their health insurance plans on 1 July – the first of major coverage losses expected as a result of HR 1, the Republican-led law signed almost exactly one year ago.

The law, sometimes called the “One Big Beautiful Bill Act,” slashed government health spending by $911bn nationally in favor of permanent tax breaks for higher-income families and border security. [...]

The July coverage losses are related to the loss of New York’s “essential plan”, a provision of “Obamacare”. In 2023, the federal government approved a pilot program in New York to cover residents earning 200-250% of the federal poverty level, or up to $39,900 for a single person and $66,625 for a family of three. [...]

Nationally, the law could cause an additional 10 million people to become uninsured over the next decade. Those losses are largely a result of new work requirements for some Medicaid beneficiaries, which analysts predict will be very challenging to navigate and expensive to administer. [...]

In spite of the disinvestment in health, HR 1 is expected to add $3.4tn to the federal budget deficit by 2034, according to the Congressional Budget Office (CBO), largely due to reduced revenue from tax cuts.

“It’s very unlikely that these individuals will be able to afford a marketplace plan. So many of them are going to be caught with no insurance, at least for a period of time – who knows how long,” said Aponte, who expects most newly uninsured people will seek care in the emergency department. [...]

In addition to the cuts imposed by HR 1, the Republican-led Congress allowed special government subsidies to health insurers to lapse at the end of 2025, leading to record-high average deductibles of $3,786 per person according to KFF.

Those rate increases are expected to continue in 2027, with private health insurers already requesting double-digit increases, according to analysts at Georgetown University’s Center on Health Insurance Reforms found. In New York, insurers are asking regulators for an average 20.7% rate increase. UnitedHealthcare of New York proposed a 52.1% rate increase.

Analysts say most rate increases are the result of sicker people seeking insurance, and otherwise healthy people foregoing coverage they feel they can’t afford. Those dynamics tend to make insurance more expensive for everyone.

by Jessica Glenza, The Guardian | Read more:
Image: Albany Times Union/Hearst Newspapers/Getty Images
[ed. Remember this the next time you vote. Republican priorities. I'm not a single-issue voter, but this time I will be. I'm still pissed. If you're not part of Big Rich and can't contribute large sums of money to political campaigns your concerns Just. Don't. Matter.]

Tuesday, July 21, 2026

How Leprosy Was Used as a Weapon Against Hawaii’s Indigenous Population

Father Damien was a dirty man. Everyone agreed on that. Dirt would accumulate under his fingernails; he rarely washed his hands. His clothes—his habitual cassock and wide-brimmed hat—were worn for days on end; he saw no reason to clean his hut in Kalawao, the leprosy colony on the Hawaiian island of Molokai. His detractors claimed he lacked elegance too: burly with a “piggish” head, they complained, he squinted from behind a pair of wonky wire-framed circular spectacles. He was eager to learn Hawaiian, it was noted sniffily, but otherwise he had little enthusiasm for languages. His Latin came only by official requirement, his English was sparse; a native Flemish speaker, even his French was stilted. The prose of his letters lacked refinement whatever their language: “coarse…headstrong and bigoted” was one particularly vitriolic posthumous assessment.


None of this worried Damien. Hawaiian did him fine. From that messy home, built in sight of Kalawao’s cemetery, Damien wrote to his brother Auguste, also a priest, to say that Molokai was exactly where he wanted to be.
"We eat what Providence sends us. The calabash of poi is always full; there is also meat; water in quantity, coffee and bread sometimes, wine or beer never. As I have had to work all week and cook on Sunday, you will excuse me if my hands are not as clean as yours, which do nothing, I suppose, but turn the pages of books. Sometimes the plates are not well washed either. But what matter. Hunger and habit make us eat just the same. For dessert, we smoke a pipe. That finished, quickly back on the horse."
In the saddle, Damien would cross Molokai’s mountains; his parish over two thousand square kilometers, he rode down the island’s valleys beyond Kalawao itself, across water and through fields to find the most remote of his parishioners. Today it is a national park, wild garlic growing in fragrant profusion, its white flowers poking up between ferns, yellow hibiscus and amid the ki-tree, the roots of which were used to brew a potent beer. Across this paradise the finch-like honeycreeper flits, feeding off the red spindly flowers of the evergreen ‘ōhi‘a lehua tree. Damien would haul building material and basic medical supplies with him, eager to provide practical as much as spiritual comfort (though he never left without an ad hoc altar of four sticks and a plank). Sometimes he had to abandon the horse and mules to scale by hand and foot the sheer cliff faces which routinely stood between him and his flock. For Damien dirtiness brought him closer to godliness, the grime evidence of his graft.

For his colonial masters, those disdainful of his personal habits, the priest’s life was alien at best and an affront to Western order at worst; religion was supposed to be a cleansing antidote to indigenous habits, a washing-away of the idolatry and idleness they projected onto the population, be they sick or healthy. Yet here was Damien, adopting their ways, it would seem, along with their language. His body and the leprous bodies of his parishioners were dangerously entangled even before he himself succumbed to the disease. This was 1872, and the pious (and patronizing) commentators of the time muttered that Damien’s unvarnished personality was due to his simple farm upbringing in rural Belgium. “It is absolutely beyond doubt that he contracted the disease through his careless ministrations and uncleanly personal habits,” a representative of the Hawaiian Board of Health tutted, though not without something approaching admiration, noting the priest “would have leper boys at work in his kitchen so that he could give more time to his ministrations for others, being busy from peep of day until long after dark.” Dirty of body, dirty of mind, would be the eventual assumption: sexual proclivity was whispered. Damien’s brother, reading Latin scripture in a clean cassock 12,000 kilometers away, faced no such danger and no such accusations of moral lapse.

Damien was never supposed to achieve the fame he did, a symbol of global imperial paranoia and catalyst of religious fetish: a bronze statue, in which he wears his wide-brimmed hat, stick in hand, now represents the state of Hawaii in the US Capitol building’s Hall of Columns. He was never supposed to be the subject of culture wars in his lifetime and long after: in 2020, Congresswoman Alexandria Ocasio-Cortez decried the choice of a white man as Washington’s symbol of the Polynesian fiftieth state. Damien was supposed to stay working in his parents’ fields in Tremelo, a dull village in a duller part of Belgium. The fact that celebrity landed upon him, plucking him from the obscurity of his mission to represent the burgeoning discourse on the disease, says more about the world that orbited him than his actions on the island or his own political nous. There were plenty of other missionaries, in plenty of other colonies, with plenty of other health issues, spreading religion and the soft arm of imperialism. Leprosy, however, had become totemic of a moral depravity or sexual freedom that Europeans had long imagined pervaded the South Seas. The leprous, lascivious body was a perversion that Western proselytizing could fix.
***
For indigenous Hawaiians, leprosy arrived as Damien did, an unwanted visitor from across the sea. The disease may have stowed away as early as Captain Cook’s colonial voyage, but it only became regarded as a public health issue eighty years later. “The commander manifested a laudable humanity, in endeavouring to shield the population from the evil effects which so inevitably result from connection between foreign seamen and the native females,” wrote one sympathetic European account of Cook’s trip. The evil effects weren’t just moral turpitude, but disease too. “But his efforts were in vain. If the discipline of his own crew could have been strictly enforced, the eagerness of the women was not to be repressed.” Historically, this genesis, regardless of whether the women were actually consenting, inextricably linked sickness with sex in the minds of Hawaiian and colonialist alike, with the former’s lack of conformity to Western and Christian mores taking the brunt of the responsibility in the minds of the latter.

The haole—the white incomers—dodged blame from among Hawaiians for leprosy too. As cases multiplied, the disease became known as ma‘i pake, the “Chinese sickness,” named after the thousands of Chinese laborers who arrived on the islands at the invitation of American traders endeavoring to create an export market in sandalwood (a precursor to the sugar industry that would dominate the economy in years to come). “There seems but one way to prevent the whole of Oceania from becoming leprous, and that is the exclusion or the rigid control of all Chinese coolies,” a Scottish physician warned. Wherever it came from, contact was devastating for the indigenous Hawaiian population, which plummeted from the healthy 683,000 people Cook first encountered to just under 40,000 Polynesian islanders left after a century of colonial enterprise and disease.

by Oliver Basciano, Literary Hub |  Read more:
Image: Kalaupapa, Molokai

Monday, July 20, 2026

The ACA Death Spiral Is No Longer Just a Theory

Insurers are now quantifying what experts long warned would happen: healthier consumers are leaving the marketplace, premiums are rising, and affordability is deteriorating.

I’ve long warned that letting the enhanced ACA subsidies expire could set off a classic insurance death spiral: healthier people priced out first, a sicker risk pool left behind, higher premiums as a result, more healthy people priced out — rinse and repeat. Reports this week from KFF News and other media outlets about 2027 rate filings is the first time I’ve seen that mechanism actually measured rather than predicted.

Insurers filing preliminary 2027 rates in 16 states and D.C. are asking for a median 14% increase, according to a Peterson-KFF analysis. If the rates are approved by state regulators, that would be the second-highest jump since 2018. What makes this year’s filings different from a routine “medical costs went up” story is that insurers are saying that about four percentage points of that increase is the direct result of the enhanced subsidies expiring because of Congressional inaction – and healthier people leaving the pool as a consequence. Another chunk — UnitedHealthcare put it at 12.7% in its New York filing — is attributed to new Trump administration enrollment rules that make it harder to sign up and stay signed up.

In other words, what we’re now seeing is insurance companies telling regulators that the failure of Congress to extend the subsidies, along with the Trump administration’s new enrollment rules — not just rising medical costs — are a measurable share of what ACA marketplace premiums will be next year.

I want to be careful here because its too early to suggest that a death spiral is definitely underway. A full death spiral means an insurance market becomes non-viable — premiums rise, enrollment collapses, insurers exit the market, and coverage disappears entirely for a region or population. That is not what’s happening in the ACA marketplace right now. Enrollment is down about 3 million from last year, which is not a collapse. Federal risk-adjustment programs are still functioning. Most subsidized, low-income enrollees — the bulk of the marketplace — are still price-protected because their subsidies rise automatically as premiums rise. Some insurers are leaving this market – including big ones like Aetna and Cigna, where I used to work – but most insurers are still filing to participate in 2027 in most states, not fleeing the market (not yet, anyway).

What we’re seeing so far seems to be a self-reinforcing cost spiral concentrated among the roughly 5% of enrollees earning above 400% of the federal poverty line who lost all subsidy protection when the enhanced tax credits expired at the end of 2025. For them, the mechanism KFF describes is real and is compounding. And this is the second consecutive year of double-digit marketplace rate increases, on top of last year’s subsidy cliff. While that’’s a genuine affordability crisis for a specific population, it’s not evidence the whole system is on the verge of collapse. But, going forward, as more people continue to drop coverage because of premium increases, the affordability crisis will encompass more enrollees, and more of them will join the ranks of the uninsured.

by Wendell Potter, Healthcare Un-Covered |  Read more:
Image: uncredited
[ed. Thanks to the Big, Beautiful, Backstabbing Bill passed by Republicans, which means more emergency room visits by uninsured people, and higher insurance premiums for the rest of us (exacerbated by cuts to Medicaid). Also, more people pushed into bankruptcy. See also: The Other Health Care Cliff Americans Are About to Fall Off  (high deductibles); and, In Preliminary Rate Filings, ACA Marketplace Insurers Largely Propose Double-Digit Premium Increase For 2027, Following a Steep Climb This Year (KFF); and, despite all this, Republican voters continue to internalize waste, fraud and abuse messaging as being the most important issue (KFF).]

Saturday, July 18, 2026

Anyone Can Be a Millionaire; Not Everyone Has Enough Testosterone

[ed. Beavis and Butt-Head have opinions.]

In America, Almost Anyone Can Be a Millionaire

This week, I ignited a small controversy on social media by claiming that “the rich are rich because they work, while the poor are poor because they don’t.” My critics were offended that I would, in their eyes, demean the poor this way. But it’s just simple reality: the top 10 percent of Americans income earners work more than 7 hours per week more than earners in the bottom 10 percent. Less-educated Americans are less likely to work at all than those with more education.

Not looking for work or working too little is indeed the main cause of poverty in America. This may seem unkind, but my critics are missing the wonderful upside: in America, anyone can become wealthy if they work full time and save reasonably over their careers.

This is one of the first things that wowed me about America. I still vividly remember the time I visited Florida from Venezuela in the early 2010s and met a Cuban-American cashier at a local Publix. While she was scanning our items, she told us she was taking a vacation with her husband the following week, a cruise to the Caribbean.

I was amazed. How could a cashier afford to go on a cruise vacation? Cashiers live in deep poverty in Venezuela; in America they get to live like the Venezuelan upper class.

That story is not unusual. The Wall Street Journal recently profiled a Costco worker named Tony Barzar from Arizona. Barzar never went to college, only taking some community college classes without finishing. Nonetheless, working his entire life in grocery stores and Costco, he has amassed over $1 million in his 401(k) account. He also owns a home with a pool and has traveled to Europe twice in the last decade—all while making just shy of $33 per hour.

He got there not by some great feat, but by slow and steady saving.

by Daniel Di Martino, City Journal |  Read more:
Image: Getty
[ed. Hope his job is one that gets taken out by AI sooner rather than later.]

******

Hegseth wants a “High-T” military; doctors call it a clinical minefield

On Wednesday, Defense Secretary Pete Hegseth made the startling announcement that the US military would begin requiring all active duty and reserve personnel aged 30 and older to undergo mandatory screening for testosterone deficiency. The screenings will take place during yearly health assessments. Those under age 30 can also get screened on request.

In a short video posted on social media, Hegseth explained to the military community that the screenings and possible subsequent treatments are intended to “optimize your performance, your resilience, and your long-term health.” While saying that the initiative wasn’t about “artificial enhancement” and that members could decline treatment, Hegseth claimed that the testing and potential treatment was for “restoring and optimizing” capabilities, protecting “longevity,” and “ensuring you have the biological foundation required to sustain the fight.”

But will testosterone screening and treatment actually “optimize” our “warfighters”? Will it help most of them live longer? Should everyone else get screened and treated, too?

“A big fat ‘Oh, no'”

Screening people widely for medical conditions and then treating those who need it may sound like a huge social positive. But issues around male hypogonadism—the condition in which the body doesn’t produce enough testosterone—can be complex.

That’s why the Endocrine Society—made up of experts in the complex systems that release hormones in the body—posted a statement on the topic in the wake of Hegseth’s announcement. The document notes that “there is insufficient evidence to support a general recommendation to perform population-level screening for hypogonadism in asymptomatic men with measurement of blood testosterone level.”

To find out why, Ars Technica spoke with Professor Bradley Anawalt, chief of medicine at the University of Washington Medical Center. He specializes in endocrinology and men’s health.

“This is a great big fat ‘Oh, no,’” Anawalt said in reaction to Hegseth’s announcement. “We’re turning the clock back on rational healthcare. … I’m worried about the ethics. I’m worried about the health consequences. I’m worried about unnecessary evaluations, incorrect assessments, and incorrect diagnoses that lead to inappropriate prescriptions of testosterone.”

To understand why, let’s start with the basic question: Why might someone have low testosterone?

by Beth Mole, Ars Technica |  Read more:
Image: Getty|Stefani Reynolds
[ed. Definitely read the Comments Section on this one. It's like a salve for dementia. As one person noted, why does everything from this administration sound like it just came out of The Onion? See also: Bony Soldier Diving On Top Of Grenade Only Makes It Deadlier.]

Friday, July 17, 2026

Today’s Cystoscopy

It knocked the sh*t out of me. Literally.

As you might remember, after taking the steroid dosepak, I was supposed to return to UCLA hospital for a follow-up cystoscopy three months later.

Today was the day.

I haven’t pissed blood since. So I was optimistic there would be no problem, but you never know. The body is made to deteriorate, no one here gets out alive, something’s gonna get you.

Now no matter how calm you feel, you never get a good night’s sleep before procedures like this. Actually, I had a wild dream where this waiter in Vail sold me a jacket. It was $495. Really pretty cool. I was supposed to be having dinner with friends and family downstairs at Russell’s, which doesn’t even have a downstairs, but after sitting at the table silently I excused myself to go to the bathroom and when I was done, I took a seat at a two-top and this waiter came along and after sizing me up he left and returned with this jacket. Kinda hard to describe, it was fabric, not leather, something you’d wear at night, it had a lining, which was removable and…thinking about it afterward it reminded me of this Guess jacket I had back in the eighties.

Anyway… I find it nearly impossible to shop for clothes. I question my taste and the ultimate fit but this guy sized me up perfectly! So I was excited when he said we should go downstairs for jeans, but they didn’t have my size, and this guy wasn’t going to sell me anything that wasn’t exactly right. Turns out his name is Fred and really he runs a bookstore and he’s not going to be back at the restaurant until Tuesday, when new threads are delivered, so I’m making a mental note to dream about him a week from now.

The dream was a good diversion, you never know where this stuff comes from, what it means, and it kept me distracted while I showered and ate and then… I had to skedaddle for the hospital.

I’ve learned to check the map app first, you never know where the traffic might be, and I was routed on Sepulveda instead of the 405, and it was crowded at first but I got there in time and after checking in, I had to provide a urine sample.

I wondered if I had enough in me. This had occurred to me just before I left the house, and I tried to imbibe, but I just wasn’t thirsty. Really, I was standing in the bathroom with the plastic cup and I felt that I would be unable to deliver, wondering if I eked out a few drops whether it would be enough, but eventually I got a flow going and returned to the waiting room.

Where I didn’t have to wait long until I was called inside by the football expert.

I guess I always feel obligated to service people. I’m trying to work on this with my shrink. But I was stunned that this woman didn’t remember our prior conversation, unlike the guy I ran into the hall after I peed, who had sent his Tudor watch in for repair, I wanted to ask him how it was doing.

And after taking off my clothes, donning the robe but leaving it open in the back, the NFL expert came back in with another woman, and she told me how great this replacement was, and I casually said that I guess we’d talk about football another time.

This stopped her in her tracks. She lamented handing me off. Rather than leaving, she wanted to get into it. Who was my team and..? I read enough news to fake it, but I was just trying to make her feel comfortable, so I let her go for her replacement who told me she had four jobs.

You see I asked her what she did when she didn’t work. She told me she loved to work! I asked if this was for the money, but no…it was the work itself. As for the four jobs… The two in the middle had to do with working at a charitable organization and the fourth was being a mother, she said she had four kids. I immediately wondered about supervision and behavior. But when I asked her about this she said there was no problem, you could tell she ran her household with an iron fist.

And then she raised my gown, scrubbed my dick, placed it in a hole of fabric so it was akin to SNLs Dick in a Box, and I’m thinking how this is de rigueur, an unknown woman manhandling my penis. Well, she was gentle, and it wasn’t sexy and it wasn’t weird emotionally, but intellectually… You’d think they’d have a guy do this, but no…

And then another woman came in! To inject me with the lidocaine!

Yup, they fill up this big syringe and shoot it right up your dick. And if you think that’s painful… Well, let’s just say it’s somewhere between uncomfortable and painful.

Meanwhile, we’re b.s.’ing…

And I’m thinking how this is my socialization. I don’t go to an office, I’m hearing from people all day long in e-mail and iMessage, but face to face?

That has fallen off since Covid, for everybody.

by Bob Lefsetsz, Lefsetz Letter |  Read more:
Image: uncredited
[ed. I had a cystoscopy back in my 30s to check for bladder cancer (negative). Uncomfortable to painful is a good description. That last little turn is a kicker.]

Monday, June 29, 2026

Pharmaceutical Freedom: Why Patients Have a Right to Self-Medicate

If Patients Can Refuse Care, Why Can't They Access It?
A Psychiatrist’s Read of Jessica Flanigan's "Pharmaceutical Freedom"

V. The Third Person in the Room

The clinical encounter is not a two-party relationship. There is a third presence in the room, composed of malpractice precedent, DEA scrutiny, prior-authorization architecture, board-of-medicine expectations, and institutional risk management. It does not speak. It shapes what can be offered, what can be discussed openly, and what stays outside the bounds of the conversation. The patient senses it. The prescriber feels it more acutely.

Flanigan directs her critique at the state, as if the state were a discrete actor whose policies could be evaluated on their merits and replaced with better ones. The state is not in the room. Individual prescribers are in the room, and the policies of the state arrive there refracted through professional liability, employer policy, payer requirements, and the residue of every malpractice case any of us has read about. What looks like medical paternalism is, in many cases, professional survival adapting to a system in which the visible costs of one kind of error are concentrated and the visible costs of the other are dispersed.

The cost of error is asymmetrically distributed. A patient who refuses care and deteriorates is generally respected as having exercised autonomy; the death is sad, but it is hers. A prescriber who provides risky access and watches harm follow is scrutinized, second-guessed, sometimes sued, occasionally disciplined by their state medical board. These outcomes are not philosophically symmetric, and prescribers have absorbed that asymmetry into their reflexes. Daniel Carpenter, in his analysis of the FDA in Reputation and Power, names the same pattern at the regulatory scale: visible harms are minimized, dispersed harms are tolerated, and the institution's incentive structure runs in one direction. The clinic operates on the same logic as the agency, scaled to a single examination room.

There is something genuinely appealing to me about Flanigan's proposal from inside this structure. If physicians are not the gatekeepers, they are not the bearers of the consequences. The consultant role, in which I inform rather than authorize, is the more honest description of what I am actually competent to do. It removes a distortion in the encounter that the current regulatory structure quietly imposes. I would, in some moods, sign on tomorrow.

The cost of removing it is that gatekeeping organizes responsibility in ways that are not always coercive. The patient who can be conditionally offered a risky medication, contingent on a safety plan and a follow-up visit, is in a different conversation than the patient who can simply buy it at retail. Whether that difference is therapeutic or merely bureaucratic depends on the case, the patient, and the medication; the honest answer is that it is both, in proportions that vary.

Quong's distinction returns here in a form Flanigan does not fully address. Removing physician gatekeeping does not eliminate the coercive structure around pharmaceutical decisions. It relocates it. Insurers, employers, licensing bodies, fitness-for-duty examiners, family courts, child-welfare agencies: these are the secondary gatekeepers waiting to absorb the function. A pilot whose airline learns he has been self-medicating does not become more autonomous because his prescriber is no longer the bottleneck. Flanigan's payment proposals, which include collective insurance bargaining, conditional reimbursement, and vouchers, are sensible on their own terms, but they describe a system in which insurers retain decisive control over which drugs are practically affordable, and that control is itself a form of gatekeeping.

Her reform of the prescription system would not abolish gatekeeping. It would migrate it from a clinical relationship, where there is at least some individual accountability and some possibility of negotiation, into administrative structures with less of either.

VI. What the Book Gets Uncomfortably Right

This is where Flanigan's abstraction becomes clinically useful. There is a version of her argument that sounds exaggerated until you follow it through the structure described above. Delay accumulates in individual patients. In aggregate it looks like a policy. In the clinic it looks like a pattern.

Four things in the book survive clinical scrutiny better than I would like them to.

The first is that delay is a body count, and the count is not zero. Flanigan's most provocative line, the one about prescription requirements killing people, lands harder here than in the section that introduced it, because by now the reader has the structure to see what she means. The sequence is familiar to anyone who has watched a patient cycle through the standard-of-care options for a treatment-resistant condition. An early-phase signal is not strong enough to meet the chosen endpoint. The endpoint was chosen to withstand regulatory scrutiny rather than to register clinical benefit. The trial extends. Approval waits. The patient cycles through partial responses, accumulates side effects, loses jobs and relationships, and eventually either stabilizes on something inadequate or does not stabilize at all. The drug arrives later, with narrower labeling and higher evidentiary confidence. Some patients benefit. Others have already moved on, in one direction or another. No one counts the ones who did not wait.

This is the asymmetry Carpenter describes at institutional scale. The cost of being wrong in one direction is concentrated, identifiable, traceable to a decision; the cost of being wrong in the other direction is dispersed across a population that never appears in the same frame as the decision that produced it. That asymmetry constrains what I can offer the person sitting in front of me. The menu of available treatments at any given visit is a function of what is approved, what is labeled, what is defensible, and what is reimbursable. I am choosing among the survivors of a filtration process that selected for evidentiary confidence at the cost of timeliness, and for legal defensibility at the cost of clinical range. Flanigan is right that delay carries a cost. Carpenter explains why that cost is tolerated. The clinic is where the two positions meet and refuse to resolve.

The second is regulatory inconsistency. Alcohol is sold at gas stations. Tobacco is regulated at point of sale rather than at access. The supplement industry sells substances with measurable pharmacological effects under almost no oversight, some of which overlap meaningfully with prescription pharmacology. Meanwhile, drugs with established mechanisms, known dosing, decades of safety data, and clear therapeutic niches remain tightly controlled. The boundary does not track risk. It tracks regulatory history, which is to say it tracks the order in which different industries developed, captured their respective agencies, and stabilized their privileges.

The third is that restriction redistributes harm rather than eliminating it, and the redistribution is stratified by resources. The patients who already operate in a world of pharmaceutical freedom are overwhelmingly wealthy, educated, well-connected, and white. They have the time, language, money, and confidence to use international pharmacies, online vendors, supplement markets, ketamine-clinic networks, and direct-to-consumer telehealth. They self-experiment with peptides, pay cash for novel neuromodulation protocols, and design off-label regimens with help from physicians willing to advise them and from AI tools that explain pharmacokinetics on demand. One patient with bipolar disorder, able to afford a nonstandard neuromodulation course out of pocket, designed a variant protocol after reading the literature; it seems to have helped him, and the clinical work was free to proceed because he could bypass the insurance pathway entirely. Another patient, after years of severe fibromyalgia, researched a newly approved neurosteroid obsessively and had two weeks of striking relief on samples left at an office; her right-to-try appeal failed and she could not afford the cash price. What separated those two patients was resources rather than biology. Patients without those resources remain inside the formal system, where access is slower, narrower, and subject to authorization workflows designed by people who do not have to use them. Psychedelic therapy is the cleanest contemporary example: psilocybin retreats in legal jurisdictions, ketamine clinics, and underground guides are available to people who can afford them, while the same compounds remain federally inaccessible to the patients most likely to benefit and least likely to find a way around the prohibition.

The fourth is that restriction shapes honesty. This is essentially Anomaly's learned-helplessness point, and it deserves the most attention. When access depends on prescriber approval, the patient has a strong incentive to present in whatever way maximizes the likelihood of getting what they want. Symptoms are emphasized or hidden. Histories are edited. Substance use gets reframed as something else, or omitted. This is not lying in the sense that anyone would prosecute. It is adaptation to a system where the prescriber's authority over access creates a corresponding pressure on the information that prescribers receive. Anomaly's framing draws on Mill: state restrictions, by promising to manage risks on the citizen's behalf, can permanently stunt the development of the very faculties that would have allowed the citizen to manage them. The clinical version is more local. The frame that promises to protect the patient from bad decisions also produces the patient who cannot tell his doctor what he is actually doing.

A system that restricts access does not eliminate risk. It redistributes it: toward patients who cannot find their way around the workarounds, into clinical encounters where honesty has been priced out, and onto the timelines of patients waiting for permission that may never arrive. The conversation in which the options run out happens more often than the policy debate suggests.

VII. Toward a Capacity-Based Hybrid

The book's great virtue is that it forces clinicians to defend the gatekeeping role rather than assume it. Most pharmaceutical regulation is implicitly risk-based. The higher the perceived risk of a drug, the tighter the controls on access. Flanigan's most useful contribution, after the symmetry argument, is to demonstrate that risk on its own is a poor foundation for coercion; many activities of comparable or greater risk go entirely unrestricted, and the threshold at which paternalism becomes legitimate is not derived from any consistent principle.

A capacity-based framework offers a different organizing principle. The threshold for restricting access is not the level of risk involved, but the integrity of the decision-making process about that risk. [...]

The right analogy is not the prescriber as gatekeeper but the prescriber as fiduciary advisor. Financial advisors do not authorize their clients' trades; they cannot prevent a client from making a foolish investment. What they offer is a relationship across time, a track record of trust long enough to make persuasion possible, and the authority that comes from being someone the client has chosen to listen to. The advisor's job is to deepen the conditions under which the client can exercise autonomy well, not to override it. Having no coercive authority is what makes the advisor freer to be honest about what the client is doing wrong. That structural freedom is precisely what the prescriber's role currently lacks.

by Anonymous, Astral Codex Ten |  Read more:
[ed. From the 2026 ACT annual book review contest (here). This is a recurring frustration - patient requests for various drug prescriptions versus what doctors will actually prescribe (for a variety of reasons articulated in this review, none of them transparent). Since a patient generally has more intimate insight into how their body functions and feels than a physician does you'd think they'd have more influence in the decision-making process, but no. And it's hard to discern what's driving those decisions - see the list at the top of this post. (As an aside, I've never understood why there are so many drug commercials on nightly news, and who they're directed at. Do you know of anyone going to a doctor and saying "hey, I saw a new drug for my condition on tv last night, and how about we give it a try". Try it, see what kind of response you get.]

Sunday, June 28, 2026

Seniors in Medicare to Get Obesity Drug Coverage

Millions of older Americans in Medicare are about to gain access to obesity drugs for the first time — but that landmark shift may be flying under the radar for many of them.

Starting Wednesday, eligible beneficiaries can get obesity drugs through Medicare’s new Bridge demonstration program for a monthly copay of just $50. The coverage marks a long-sought victory for patients, physicians and obesity advocates who have pushed for broader access to the blockbuster treatments from Novo Nordisk and Eli Lilly, which have remained out of reach for many Americans.

But a staggering 82% of all older Americans — including 79% of Republicans and 84% of Democrats — say they are unaware that Medicare is about to begin covering obesity drugs, according to a survey released in early June by the Obesity Care Advocacy Network. The survey, conducted in late March among more than 2,100 adults ages 65 and older, was completed weeks before the government announced it would extend the Bridge program through 2027.

That data may not come as a surprise: While the government has done robust outreach to healthcare providers and pharmacists, some physicians and other experts told CNBC that they have noticed limited advertising of the new coverage to the general public from the Centers for Medicare & Medicaid Services or Novo and Lilly.

There may be good reasons for it. CMS has done limited public outreach on the program ahead of July 1 because beneficiaries are “most moved to take action” when a benefit is actually available to them, an agency official told reporters on Thursday. They added that CMS will put out more promotions after the launch, “in the interest of being good stewards of our taxpayer dollars.”

Other experts also told CNBC that it may come down to making sure providers and pharmacies are prepared and resources are in place before pursuing broad public outreach. [...]

Unlike traditional Medicare drug coverage, enrollment in the Bridge program is not automatic. Patients must meet eligibility requirements, obtain a prescription and receive prior authorization approval through CMS before coverage begins.

by Annika Kim Constantino, CNBC | Read more:
Image: Dhiraj Singh|Bloomberg|Getty Images
[ed. Feels like there's more to this story. Why is no one clamoring to get credit (or market share)?]

Friday, June 5, 2026

In Support of Mandatory Nucleic Acid Synthesis Screening and Recordkeeping

As life sciences researchers, builders of AI and biotechnology, and experts with a wide range of views on how to approach AI policy, we call on legislators to make screening of orders for synthetic nucleic acids — and the equipment needed to make them — mandatory.

The ability to order synthetic DNA online has accelerated vaccine development, powered basic research, and made it possible for small teams to access capabilities that used to be confined to major institutions. Since the publication of protocols to reconstruct viruses from strands of DNA more than two decades ago, it has also been recognized as a point in the biotechnology supply chain where a bad actor could cause outsized harm. Recognizing the vulnerability, synthesis companies formed the International Gene Synthesis Consortium in 2009 to develop and implement voluntary safeguards against misuse.

While the issue is not new, the pace of progress in artificial intelligence is. AI systems now outperform PhD-level virologists on questions about highly technical laboratory procedures in their own domains of expertise. The evidence about what this means for present-day biosecurity threats is genuinely mixed, but the trend is hard to dispute. AI systems are improving rapidly, and alongside incredible benefits to science and medicine, there is a real possibility that the knowledge barriers which have historically prevented bad actors from obtaining biological weapons will meaningfully erode.

Support for screening does not depend on any particular view of AI; the biosecurity case has been recognized by scientists and governments for decades. Screening is also one of the best understood and least disruptive biosecurity measures available. It asks providers of synthesized DNA and manufacturers of synthesis machines to check synthesis requests for sequences of concern and to verify customer legitimacy before shipping orders. Providers should also record synthesis orders and sequence data to support legitimate biosecurity investigations, so that any threat that might evade initial screening can be traced back to its source — including when individual sequences would not raise concern in isolation. Awareness of traceability itself deters misuse.

Many of the largest and most responsible providers in the industry already screen and record orders voluntarily because it is well understood that they have an important role to play in maintaining public trust in and mitigating potential misuse of this important technology.

For these reasons, the undersigned support mandatory nucleic acid synthesis screening, including recordkeeping, in the United States.

Given the pace at which the underlying technology is changing, we believe the need is urgent. Congress should act this session, and we applaud the legislative efforts currently underway. To ensure a consistent national standard rather than a patchwork of conflicting laws, states should also consider implementing requirements based on existing federal and industry guidelines.

This is a rare moment of agreement across stakeholders that are often at odds. We hope policymakers will meet it with decisive action.

Sincerely,
Signatories: — *Everybody*
[ed. No brainer, right? You don't just leave potential life-threatening bio-warfare components laying around with no oversight. Right?]
***
Amrith Ramkumar (WSJ): Top artificial-intelligence executives are joining security experts in calling for Congress to protect against biological threats posed by AI, adding to growing pressure on lawmakers to address the technology’s risks.

Three major chief executive officers—OpenAI’s Sam Altman, Anthropic’s Dario Amodei and Demis Hassabis of Google’s DeepMind AI lab—are among the signatories of a letter urging Congress to require safeguards when companies order synthetic DNA and RNA, a key step in developing certain vaccines and biotech breakthroughs.

… It was organized by two tech-focused think tanks that said the topic is a rare source of agreement among libertarians, progressives, researchers and rival executives.

Dean W. Ball: I am honored to have signed on to this letter. This is an urgent priority for near-term action by Congress. Biotech is advancing rapidly on its own, and I—and many others—believe the “Mythos moment” in AI/bio is coming soon. It is time for action.

revisions to existing nucleic acid screening requirements were mandated by an EO POTUS signed a year ago; I worked on them while in govt. I genuinely don’t know what happened to that work after I left but it is nine months behind schedule. Congress acting is better anyway.

Joshua Teperowski Monrad: People are so astounded when I tell them this isn't already law

Alec Stapp: it really is insane [...]
Other signatories include Patrick Collison, Paul Graham, Mustafa Suleyman, Alexandr Wang and a lot more where that came from.

We need such letters, despite this having ~100% support among those who understand any side of this, this is such a slam dunk that we should be doing this even before considerations of AI making malicious action vastly easier.

Why? Because political awareness is basically still near zero:
Will Poff-Webster: When I was a Senate staffer and occasionally got the chance to bring up biosecurity risks from AI, the response was often, “What? AI might be able to do that?”

This letter shows how easy it’d be for Congress to act on this

Wednesday, May 27, 2026

Dognosis

At a former pomegranate farm on the outskirts of Bengaluru, a team of specially trained dogs is doing something that some of the world's most sophisticated medical machines cannot — detecting multiple types of cancer from a single breath, at early stages, for two dollars a test.

Dognosis, the Indian startup behind this system, published the results last week of its Phase 2 clinical trial in the Journal of Clinical Oncology — the world's most influential cancer journal — making it the largest study of its kind ever conducted and placing canine-based diagnostics firmly into the mainstream of medical science.

What Dognosis Does

The company was co-founded by Akash Kulgod, who built on his Honours thesis at Berkeley, and Itamar Bitan, who brings a decade of Special Ops K9 training experience from Israel. What the two founders realised was that the solution to early cancer detection had been living in our homes the whole time — the dog's nose, a product of fifteen millennia of co-evolution with humans, can detect the faint chemical trace of cancer in breath at a resolution that machines, algorithms, and laboratory tests have never come close to matching.

Therefore, Dognosis is building an ultra-affordable, non-invasive breath-based multi-cancer early detection test that combines trained dogs' exceptional olfactory abilities with brain-computer interfaces and machine learning to create quantitative signatures of disease.

How the Test Works

The test is straightforward: a person breathes normally into a cotton face mask for 10 minutes. The mask is sealed, stored, and later evaluated by trained detection dogs at a central laboratory. Each sample is assessed independently by at least three dogs and their assessments are combined using an advanced Bayesian statistical model that weighs each dog's track record and the participant's background information. No blood is drawn, no scan is needed, and no fasting is required.
 
The Science: What the Dogs Are Smelling

The dogs are detecting changes in volatile organic compounds — substances produced by the body when diseases like cancer are present. These VOCs create a unique odour signature or volatilome that trained dogs can identify, just as they are trained to detect explosives and drugs.

According to Dognosis, over 40 double-blind trials published in peer-reviewed journals have demonstrated that dogs can detect various diseases, including different types of cancer, with high accuracy, and this ability is now well-established in scientific literature spanning journals including Nature and The Lancet.

The Phase 2 Trial: What It Found

According to the paper published in the Journal of Clinical Oncology, the study was conducted across six hospitals in Karnataka — three each in Hubballi and Bengaluru — in an assessor-masked, multi-centre case-control format. A total of 3,275 participants were enrolled, with 1,773 used for training and 1,502 for testing. The test cohort included 283 treatment-naïve, biopsy-confirmed cancer cases spanning seven major cancer groups and 1,219 controls including healthy volunteers.

The Phase 2 data showed 91% accuracy in detecting cancer-associated VOC breath signals across seven cancer groups, with accuracy stable across cancer types as well as in early stages — when detecting cancer early matters the most. The study was conducted in collaboration with Medical Detection Dogs, a UK-based charity and world leader in canine bio-detection research. 

"We've known for over two decades that dogs are capable of detecting multiple types of cancers with high accuracy," said Akash Kulgod, chief executive officer of Dognosis. "The challenge has always been building a system around canine olfaction that is reproducible, scalable, and aimed at a clinical problem worth solving."

"Multi-cancer risk stratification from a single breath sample in countries like India is that problem, and this study shows that it can be done," Kulgod said.
 
Why It Matters

The rise of multi-cancer early detection tests and AI-powered imaging has created an acute need for effective first-tier screening, which breath-based testing is uniquely positioned to fulfil — particularly in low- and middle-income countries where expensive imaging infrastructure remains out of reach for the majority of patients.

At $2 per test, Dognosis's system costs a fraction of existing screening tools, many of which also fail to detect cancer at its earliest and most treatable stages.

by NDTV Profit News |  Read more:
Image: uncredited via

Monday, May 25, 2026

Doctors, This Is Why Our Patients Are Using ChatGPT

Several months ago, I got the results back from some routine blood tests, and let’s just say several numbers were a tad too high. My doctor advised “continued diet and exercise” and signed off on the results.

For the past couple of years, though, my numbers had been inching up, and I was frustrated that I couldn’t seem to do much about them. I requested a phone call from my doctor — surely, she had better advice than what she wrote — but she messaged back that if I wanted to discuss my results, I had to set up another appointment.

So, I did what everyone does in this day and age: I turned to artificial intelligence. With low expectations, I typed my lab results into ChatGPT.

As both a physician and a patient, I found the experience startling. Not because ChatGPT dazzled me with its scientific knowledge, but because it behaved the way I wish modern medicine, and its practitioners, still would.

I had always assumed the “human side” of medicine was the part A.I. couldn’t touch. Sure, I know doctors are turning to A.I. to help them break bad news, since patients seem to find messages crafted by bots more empathetic than those written by doctors. But, in practice, what I thought really mattered was that a person was delivering that care.

The chatbot didn’t just spit back generic advice. It asked questions about my daily life and figured out what I could realistically change. It suggested a short walk immediately after eating, something I’d never taken seriously. When I inquired about doing a longer activity, it told me that would likely offer only marginal benefit. Its recommendations were manageable and easy to follow. [...]

As a doctor, I was a little embarrassed to be using ChatGPT. But every interaction with, say, OpenEvidence, a professional medical A.I. tool, felt cold and sterile. It referred to me as if I were a case report, not a person with preferences and habits. I realized what was winning me over about ChatGPT wasn’t its ability to sift through the latest studies, or diagnose my ailments; but its unwavering messages of empathy and encouragement, and its endless willingness to listen and its patience. It’s not human, but it can model some traits we value most in human interaction.

I followed ChatGPT’s advice, and when my blood work improved, ChatGPT affirmed my progress and urged me to keep going. I doubt I would have made those changes — much less stuck with them — without that sustained back-and-forth. I certainly hadn’t before.

It’s a grim fact of American medicine today that doctors can’t come close to a chatbot’s availability. And when the health care system can’t reliably offer time, attentiveness and compassion, patients will go searching for them somewhere else, even from a machine we assumed could never feel human. A.I. may not replace doctors, but it will change what patients expect from us. Doctors need to adapt.

Before I used a chatbot for my own health concerns, the thought of telling a patient to “ask ChatGPT” was inconceivable — or at least something I considered terrible care. Now I’m not so sure. In certain situations, A.I. offers something patients clearly need and medicine has trouble fulfilling.

The reality is, many patients are already consulting A.I. Doctors can keep fearing or condemning those interactions, or they can figure out how to support people using A.I. tools for their health care — cautiously, with clear guardrails. I would never tell patients to ask ChatGPT or Claude for a diagnosis, but perhaps I would suggest they use it to make sense of a new condition or keep up with routine screenings — or translate “diet and exercise” into steps that actually fit into their lives, as I did. At the same time, we need safeguards built into these systems to protect people from real harm from dangerous advice.

My experience with the chatbot has already shifted how I interact with patients in the E.R., with only minutes to piece together fragments of their circumstances. When a patient asks the same question repeatedly, I try to listen for what’s behind it. Maybe she’s not after more medical facts.

by Dr. Helen Ouyang, NY Times | Read more:
Image: María Medem
[ed. I had this exact experience a month or so ago. Asked for a full blood workup to see if there were any problems. Called back two weeks later for results. No answer. Waited another week and went to the clinic in person to make sure my first request hadn't somehow gotten lost in the bureaucracy (which happens, frequently). Except, this time I was smart enough to ask for a print-out of my lab results. Again, after receiving no response from my doctor, I took a picture of the results, uploaded them to Anthropic's Claude and asked it to interpret them. At first I got the standard disclaimer that it doesn't do diagnoses, but then I asked it to just interpret the results so I'd know what all the coding meant, the various ranges of acceptability etc., and it gave me a detailed response. Much better than I'd ever gotten from doctors before who'd mostly just say (if they responded at all) "oh yeah, everything looks ok, some things look a bit high, but others ok". And that's it. No explanation or guidance on anything, like follow-ups were a burden (that couldn't be billed for an office visit). I'll always use AI from now on to evaluate my results. Doctors (and hospitals) have brought this upon themselves.]

Sunday, May 17, 2026

Ben Sasse's Warning

When Ben Sasse walked onto the Senate floor in November 2015 to deliver his first speech as a member of the upper chamber, he did something unusual: He had waited a full year to speak. It’s part of a Senate tradition known as the “maiden speech.” A historian by training and a management consulting associate by early vocation, he had spent his first year in the chamber interviewing colleagues, studying how the institution functioned, and developing a diagnosis before offering it publicly. When he finally spoke, the speech landed with enough force that Sen. Mitch McConnell (R-KY) distributed the text to every Republican senator, a gesture the Senate GOP leader at the time rarely made.

“No one in this body thinks the Senate is laser-focused on the most pressing issues facing the nation,” Sasse told his colleagues. “No one.”

The indictment was bipartisan, surgical, and delivered with the calm of a man who had considered it carefully before speaking. The Senate, he argued, had surrendered its institutional identity to the rhythms of the 24-hour news cycle, to the demand for sound bites, and to the incentive to grandstand for a narrow base and raise money rather than legislate for a country. “The people despise us all,” he said. “And why is this? Because we’re not doing our job.”

It served as a warning that went unheeded, and 11 years later, we’re watching more dysfunction in government than ever before. Sasse, now dying of Stage 4 pancreatic cancer at 54, is still saying the same thing. The diagnosis has not changed the message. It has sharpened it.

Whether Sasse was a “good” or “effective” senator is debatable. Whether Washington currently has enough senators like him is not a close question.

The criticism that followed him throughout his eight-year tenure is almost entirely subjective. His critics on the Left saw a man willing to deplore Trumpism in public while voting with President Donald Trump‘s agenda in practice. His critics on the Right, particularly as the party realigned, saw a posturing institutionalist more interested in making points and serving as a pundit than in getting on board fully with the president’s policies. The most durable version of this critique runs something like: He gave great speeches and passed no significant legislation.

Yuval Levin, founding editor of National Affairs and director of Social, Cultural, and Constitutional Studies at the American Enterprise Institute, largely rejects both sets of criticisms. On the Trump question specifically, Levin is direct: “The notion that there was much more he could have done to hold Trump to account is misdirected and mistaken. He took on Trump when he disagreed with him, and when he thought Trump had exceeded his authority or violated his oath. And unlike most Senate Republican critics of Trump, he ran for reelection and won after doing that.”

The objection to the lack of signature legislation mistakes the Senate’s function for a body it was never designed to be. In the framework Sasse spent years articulating, the Senate is not primarily a factory for producing legislation. It is a deliberative institution meant to apply friction to democratic impulses in the House of Representatives, to slow things down when people want to move too fast, and to force the executive and judiciary to operate within appropriate constitutional limits. By that standard, which is closer to the Founders’ intent than the one applied by Sasse’s critics, he understood and performed his role better than most of his colleagues.

The “pundit” critique oversimplifies his actual record. Sasse served on the Senate Intelligence Committee throughout his tenure, and his work on China there was substantive and largely ahead of the political mainstream. When it was still unfashionable for a Republican to identify Beijing as a generational geopolitical threat rather than an irritating trade partner, Sasse was making that case in the committee rooms that mattered. He had genuine expertise in China’s intelligence operations and, accordingly, used his position, spending considerable time in secure facilities at times when most of his colleagues were busier developing a social media strategy.

Sen. Mark Warner (D-VA), who worked alongside him on the intelligence committee, offered perhaps the most precise characterization of what made Sasse different, telling Scott Pelley on 60 Minutes in April that Sasse “never really thought about things as conservative, liberal. He thought much more about issues, such as the future and the past.” Senate Majority Leader John Thune (R-SD) said Sasse had a “concern not just for today, but for tomorrow and the future” and that he “wasn’t distracted by all the noise that goes around us on a daily basis.” [...]

Levin, who watched Sasse’s tenure closely, offers a candid accounting of his legislative limitations. “It’s true that Ben was not an active legislator, advancing proposals, sponsoring and co-sponsoring legislation, and building coalitions,” he said. “He was active in some key committees, especially the Intelligence Committee, where it seemed to him that active engagement could make a difference. But I think he concluded this was not the case in some of his other committees and that he might be more useful as a critic and observer of the institution. No individual senator gets a lot done right now, and of course, that’s part of the frustration he had.”

But the moments that defined Sasse as a senator were the ones that did not produce legislation, and those are the moments worth examining without the usual condescension.

On the first day of Justice Brett Kavanaugh‘s Supreme Court confirmation hearings in September 2018, the chamber descended almost immediately into the theater that had by then become customary. Protesters disrupted proceedings from the gallery. Democratic senators jockeyed for camera time. The atmosphere was more performance than inquiry. Into this circus, Sasse delivered a 12-minute statement that went viral because it said plainly what almost no one in that room was willing to say: The hysteria around confirmation hearings is a symptom, not the disease. Congress had spent decades delegating its legislative authority to executive agencies and now blamed the courts for filling the vacuum.

“It is predictable now that every confirmation hearing is going to be an overblown, politicized circus,” he said. “And it’s because we’ve accepted a bad new theory about how our three branches of government should work.” The corrective he offered was simple: Congress should pass laws and stand before voters. The executive should enforce those laws. Judges should apply them, not write them. Naturally, no one disagreed out loud.

He delivered a version of the same argument at Justice Amy Coney Barrett‘s hearing in 2020. Neither speech moved the institution. Both captured something true and important about why the institution was failing, and both were widely shared by people who had largely stopped expecting a sitting senator to say anything worth sharing. The Kavanaugh statement was described in this publication at the time as the civics lesson Washington desperately needed. That it needed to be given by a freshman senator to the full Senate Judiciary Committee was Sasse’s real point.

He also understood, more clearly than most of his colleagues, that the Senate’s dysfunction was not incidental but structural. The cameras, he argued, were a bad incentive. The constant travel and time spent fundraising corroded the relationships that make effective governing possible. Most tellingly, he believed that senators had come to treat their office as the purpose of their lives rather than a temporary form of service to something larger. When Pelley noted on 60 Minutes that many senators he knew “would not be able to breathe without that job,” Sasse replied that he feared that was true and that it represented “a much, much deeper problem.” The best title a person could hold, he said, was dad, mom, neighbor, friend. Senator was “a great way to serve. It should be your 11th calling or maybe sixth, but never top.”

When he resigned from the Senate in January 2023 with four years remaining in his term to become president of the University of Florida, many observers treated it as confirmation of the pundit critique: He could not stay the course. The more honest reading is that he had concluded the institution was, as he told Pelley, “very, very unproductive” and that there were better things for him to do. “We didn’t do real things,” he said. “And it felt like the opportunity cost was really high.” He moved to Florida, then stepped down from that post roughly a year and a half later when his wife, Melissa, was diagnosed with epilepsy and required full-time care. The man who had argued that being a senator should rank no higher than sixth on a person’s list of priorities was living accordingly.

Then, on Dec. 23, 2025, he posted the news to X. “Last week I was diagnosed with metastasized, stage-four pancreatic cancer, and am gonna die.” He was 53. Doctors at MD Anderson Cancer Center had cataloged the full spread: lymphoma, vascular cancer, lung cancer, liver cancer, and pancreatic cancer, the point of origin. He had been given three to four months to live. He called it what it was: “Advanced pancreatic is nasty stuff; it’s a death sentence.”

What followed was unexpected, at least to anyone who had expected Sasse to retreat from public life. He launched a podcast called Not Dead Yet. He sat down for a conversation with New York Times columnist Ross Douthat on the latter’s Interesting Times podcast in April, which was released just days after the interview aired and subsequently circulated widely. He appeared on 60 Minutes with Pelley on April 26, his face visibly marked by his medication, a drug called daraxonrasib from Revolution Medicines that had shrunk his tumors by 76% and extended his life by months that were not supposed to exist. He credited the extra time to “providence, prayer, and a miracle drug.”

The Douthat interview was the more intimate of the two conversations and the more remarkable. Douthat asked Sasse at the close whether he felt ready to die. Sasse said he did not feel ready but that he had hope, grounded in his Reformed Christian faith, that he would be with God. The response moved Douthat visibly to tears, something Sasse responded to with his characteristic dry humor. Earlier in the conversation, Sasse reflected on what the disease had given him alongside what it had taken. “I hate pancreatic cancer,” he told Douthat. “I would never wish it on anyone, but I would never want to go back to a time in my life where I didn’t know the prayer of pancreatic cancer. I can’t keep the planets in orbit. I can’t even grow skin on my face.”

The “prayer of pancreatic cancer,” as Sasse uses the phrase, is something like the acknowledgment of dependence that most people spend their healthiest years avoiding. He is not unusual among the terminally ill in arriving at that acknowledgment. He is unusual in the way he has extended it outward, into public argument, into the same institutional critique he was making in November 2015. On 60 Minutes, he was asked what Congress was missing, and he named the artificial intelligence revolution, the future of work, and the complete absence of 2030 or 2050 thinking in either party. Then, without prompting, he returned to the frame he had always used. “The Senate needs to be less like Instagram. The Senate needs to be more deliberative, and that means less smack-down nonsense,” he told Pelley, adding, “The Senate should be plodding, and steady, and boring, and trustworthy.”

by Jay Caruso, Washington Examiner |  Read more:
Image: uncredited via
[ed. I knew very little about Ben Sasse before reading an article about daraxonrasib, the new breakthrough drug given to him in his treatment for aggressive pancreatic cancer. It goes without saying that Congress would be an entirely different place if there were more people like him. See also: Pancreatic cancer just met its match (Works in Progress):]

***
"For most of the last half-century, a diagnosis of metastatic pancreatic cancer was a death sentence. In December 2025, former Nebraska Senator Ben Sasse announced he had been diagnosed with stage four pancreatic cancer that had spread to his lungs, liver and other organs, and was given three to four months to live from the time of diagnosis. With little to lose, he enrolled in a clinical trial for an experimental drug. Four months later, he reported a 76 percent reduction in tumor volume, describing the drug, daraxonrasib, as a ‘miracle’. His face, ravaged by a severe skin rash from the treatment, told a more complicated story. Yet he was alive and grateful to be able to talk to his family.

A few days after Sasse’s interview, in April 2026, Revolution Medicines announced Phase 3 trial results for daraxonrasib showing the drug had roughly doubled survival in patients with metastatic pancreatic cancer compared to standard chemotherapy. For a disease where median survival has long been measured in months and where little had changed for decades, that result represents a genuine turning point.

But the significance extends beyond pancreatic cancer. Daraxonrasib is among the first drugs in an emerging generation designed to target RAS, a protein implicated in roughly a quarter of all human cancers and long considered beyond reach, in all its mutant forms. And it belongs to a broader class of medicines, molecular glues, that are beginning to show what becomes possible when drugs no longer depend on finding a ready-made pocket in their target. Several compounds in this class are now in clinical development, each probing a different protein that previous generations of drugs could not touch."

Saturday, May 9, 2026

Why Consciousness Researchers Have Failed (So Far)

Oh god, I barely made it through.

Experienced sensations while reading: frustration, dread, restless legs, and overwhelming waves of weariness. At one point I felt physically nauseous.

I’ve been trying to figure out why, since (a) Michael Pollan is a great writer who has proven his chops over countless other topics, and (b) this is objectively quite a good book about the science of consciousness. Indeed, I should be happy! Consciousness is clearly having “a moment” right now—a science book about consciousness has been on The New York Times bestseller list for nine weeks, and meanwhile, the online world is abuzz with debates about AI consciousness.

And yet… I hated Pollan’s book.

I felt that every next chapter or section could have been predicted by some statistical machine for producing books about consciousness (“Okay, here’s the part about David Chalmers coming up”). And yes, I have the advantage of being a researcher in the same subject and have even worked with some of the figures Pollan writes about, which is why in my own The World Behind the World (we all seem to gravitate to the same titles, huh) I broadly told much the same story. But you can even go back to science journalist John Horgan’s The Undiscovered Mind, published in 1999, to get similar progress beats and quite familiar names. It’s been 27 years, during which the discussion has (as many fields of science do) centered around major figures like neuroscientists Christof Koch or Giulio Tononi or Antonio Damasio or philosophers like David Chalmers. There’s always the part where Alison Gopnik makes an appearance. Karl Friston pops his head in. And all these people are intellectual titans. Truly. But honestly, this stage of consciousness research feels played out.

Like you have Christof Koch, one of the highest-profile figures, who broke open the field in the 1990s with Francis Crick (co-discoverer of DNA’s structure) and gave one of the first proposals for a neural correlate of consciousness: gamma oscillations in the ~40Hz range in the cortex.

Koch, who is soon to turn seventy, was for a while after the death of Francis Crick a staunch supporter of Integrated Information Theory (I was part of the team that worked on developing that theory after Giulio Tononi proposed it, and even once did a conference submission with Koch himself). But now Koch has apparently moved on to other approaches to consciousness, mentioning his attendance of an ayahuasca ceremony and his accessing of a “universal mind.”

Here’s Pollan talking to Koch at the end of the book:
When I confessed to Koch my fear—that after my five-year journey into the nature and workings of consciousness, I somehow knew less than I did when I started—he simply smiled.

“But that’s good,” he said. “That’s progress.”
No, it isn’t!

Consciousness is not here for our personal therapy. It’s not tied to our life journeys. And I’m guilty of all that artsy and personal stuff too! But it’s no longer about how the grand mystery makes us feel, or the friends we made along the way.

It’s all changed.

HOW WE FAILED

Right now, there’s some college student falling in love with a chatbot instead of the young woman who sits next to him in class, all because science literally cannot tell him that the chatbot is lying about experiencing love. On the other hand, if somehow AIs are conscious, either right now (to some degree), or near-future ones will become so, then they deserve rights and protections, and the entire legal and social apparatus of our civilization must expand rapidly to include radically different types of minds (or we must choose to restrict what kinds of minds we create). There are immediate practical matters here. Long term, we also need to protect against extremely bad futures where only non-conscious intelligences remain—the worst of all possible worlds is that our civilization acts like a reverse metamorphosis, where something weaker but more beautiful, organic consciousness, gets shed in the birth of some horrible star-devouring insect made of matrix multiplication. And then it turns out there is nothing it is like to be two matrices multiplying.

While it’s my opinion that modern LLMs operate more like tools right now, or at best like a lesser statistical approximation of what a good human output would be (with their main advantage being search, not insight), this is all just the beginning of the technology. The door is open and will never be closed again.

Of course, consciousness matters far beyond just AI. Table stakes for actual scientific progress on consciousness include shifting neuroscience and psychiatry from pre-paradigmatic to post-paradigmatic sciences (and all the pile-on effects from that). This was always true. But my point here is that LLMs act like a forcing function. Before everything changed, consciousness research was an unhurried subfield of neuroscience that was always a little weird and niche; therefore academics are guilty of treating consciousness like an academic exercise. [...]

Due to the rise of behaviorism and logical positivism, “consciousness” became a dirty word in science for half a century or more—precisely when the rest of the sciences rocketed ahead! The consciousness winter only really ended in the 1990s because of the collective weight of several Nobel Prize winners (like Francis Crick and Gerald Edelman) determined to make it acceptable again.

The two major scientific conferences (which are how scientists organize) devoted to consciousness also only started in the mid-90s. That’s just 30 years ago! Modern science is incredibly powerful, maybe the most powerful force in existence, but in the grand scheme of things, 30 years is not long at all. That’s just one generation of scientists and thinkers. Kudos to them. Pretty much all of the big names (including definitely Koch) deserve their laurels, and contra Pollan, I do think consciousness actually has made progress over the last 30 years, in that our conceptions are a lot cleaner, the definitional problem is pretty much solved, a lot of the space of initial possible theories is mapped, the problems and difficulties are much better known and clearly outlined, and there is organizational and behind-the-scenes structure that exists in the form of established conferences and labs and minor amounts of funding, etc.

And that’s another thing: no one has tried throwing money at the consciousness problem, at all—and for many problems, from AI to cancer cures, a necessary component often ends up being finance and scale and concentrating talent.

Humanity spends something like a billion dollars a year on CERN. To compare, let’s look at the biggest scientific funder in the United States, the NIH. Out of 103,280 grants awarded to scientists during the 2007-2017 decade, want to guess how many were about directly studying the contents of consciousness?

Five.

That’s probably, at most, a couple million dollars in funding over a decade. Total. So if you’re a consciousness researcher, what can you do, cheaply? What can you do, for free? You can pontificate. You can propose your own theory of consciousness! That requires no funding whatsoever. And so for 30 years the meta in consciousness research has been to create your own theory of consciousness. We’ve let a thousand flowers bloom. The problem is that, if any flower is at all true or promising, you can’t identify it, as its sweet subjectivity-solving scent is completely masked by the bunches of corpse flowers around it. We have too many flowers, and one more just isn’t meaningful anymore. As is sometimes said at the end of fairy tales: “Snip, snap, snout. This tale’s told out.”

What we need are efforts at field-clearing, and methods that can actually make progress on consciousness in ways not tied to just promoting or trying to find evidence for some pre-chosen pet theory—which means finding ways to select over theories, to test theories en masse, so you don’t reinvent the wheel each time, and, perhaps most importantly, you have to do all this while scaling institutions with funding to specifically get a bunch of smart people in a room working together on this.

ME GETTING OFF MY ASS

If the 2020s were all about intelligence, then necessarily the 2030s will be all about consciousness. Intelligence is about function, while consciousness is about being, and forays and progress into understanding (and shaping) function will in turn force our attention toward a better understanding of being. And if the answer to “Why has consciousness not been solved?” is secretly “Material and historical conditions made it hard for anyone to actually try!” then the answer is to actually try.

I refuse to live in a civilization where we consciousness researchers have so obviously failed. I refuse to live in a civilization where we cannot tell consciousness from non-consciousness. Where we can offer no guidance for the future. Where we cannot explain the difference between actually experiencing things vs just processing them. In the short term, this is destabilizing and harmful. In the long term, it may be literally existentially dangerous.

by Erik Hoel, Intrinsic Perspective |  Read more:
Image: Michael Pollan/Penguin Random House
[ed. I thought consciousness research was going great guns since it's central to determining AGI (artificial general intelligence). Huh. See also: His ‘Machine’ Could Uncover the Origin of Human Consciousness—And if It Truly Connects to the Whole Universe (Popular Mechanics)]

Thursday, May 7, 2026

Hantavirus Update

A working timeline: 
  • Mid-March: Dutch couple possibly contract virus on bird watching landfill excursion.
  • April 1: MV Hondius departs southern Argentina.
  • April 6: Dutch man falls ill.
  • April 11: He dies.
  • April 24: St. Helena. Man’s body is taken off ship and wife flies with it to South Africa. The Dutch woman is already sick before boarding flight to South Africa.
  • April 26: The Dutch woman dies in SA at a hospital.
  • April 27: A British man who is sick is flown from Ascension Island to South Africa.
  • May 2: A German woman dies on the MV Hondius.
Meanwhile, we have people leaving the ship and flying all over the world:

Some Hantavirus Cruise Passengers Are Back in the U.S. MedPage Today

Two British people self isolating at home after leaving cruise ship in St Helena BBC. “The UKHSA also said British people currently on the ship would be flown home on a charter flight, probably from the Canary Islands, as long as they didn’t have symptoms.”

Patient with a hantavirus infection being treated in hospital Switzerland Federal Office of Public Health (press release)

Passenger with hantavirus was briefly on board a KLM aircraft in Johannesburg KLM (press release)

Spanish passenger on the ‘Hondius’: ‘There are 23 people who got off on Saint Helena and have been wandering around El Pais

by Conor Gallagher, Naked Capitalism | Read more:
[ed. Time to pull that old "definition of insanity" cliche' out again. Even if this does eventually burn out, it appears we've learned very little in the last few years.]