Tatiana Schlossberg Dies at 35

Tatiana Schlossberg, an environmental journalist and a daughter of Caroline Kennedy — and granddaughter of President John F. Kennedy — whose harrowing essay about her rare and aggressive blood cancer, published in The New Yorker magazine in November, drew worldwide sympathy and praise for Ms. Schlossberg’s courage and raw honesty, died on Tuesday. She was 35.

Her death was announced in an Instagram post by the John F. Kennedy Library Foundation, signed by her family. It did not say where she died.

Titled “A Battle With My Blood,” the essay appeared online on Nov. 22, the 62nd anniversary of her grandfather’s assassination. (It appeared in print in the Dec. 8 issue of the magazine with a different headline, “A Further Shore.”) In it, Ms. Schlossberg wrote of how she learned of her cancer after the birth of her daughter in May 2024. There was something off about her blood count, her doctor noticed, telling her, “It could just be something related to pregnancy and delivery, or it could be leukemia.”

It was leukemia, with a rare mutation. Ms. Schlossberg had a new baby, and a 2-year-old son.

“I did not — could not — believe that they were talking about me,” she wrote. “I had swum a mile in the pool the day before, nine months pregnant. I wasn’t sick. I didn’t feel sick. I was actually one of the healthiest people I knew. I regularly ran five to ten miles in Central Park. I once swam three miles across the Hudson River — eerily, to raise money for the Leukemia and Lymphoma Society.”

She added, “This could not possibly be my life.”

She wrote of months of chemotherapy and a postpartum hemorrhage, from which she almost bled to death, followed by more chemo and then a stem cell transplant — a Hail Mary pass that might cure her. Her older sister, Rose Schlossberg, was a match and would donate her cells. Her brother, Jack Schlossberg, now running for Congress in New York’s 12th district, was a half-match; nonetheless he pressed the doctors, asking if a half-match might be good enough. Could he donate, too? (He could not.)

After the transplant, when Ms. Schlossberg’s hair fell out, Jack shaved his head in solidarity. She wore scarves to cover her bare scalp; when her son came to visit her in the hospital, he did, too.

She was never able to fully care for her daughter — to feed, diaper or bathe her — because of the risk of infection, and her treatments had kept her away from home for nearly half of her daughter’s first year of life.

“I don’t know who, really, she thinks I am,” Ms. Schlossberg wrote, “and whether she will feel or remember, when I am gone, that I am her mother.”

She went into remission, had more chemo, relapsed and joined a clinical trial. There were blood transfusions, another stem cell transplant, from an unrelated donor, more chemo, more setbacks. She went into remission again, relapsed, joined another clinical trial and contracted a form of the Epstein-Barr virus. The donated cells attacked her own, a condition called graft-versus-host disease. When she came home after a stint in the hospital in October, she was too weak to pick up her children.

Her oncologist told her that he thought he could, maybe, keep her alive for another year.

“For my whole life, I have tried to be good,” she wrote, “to be a good student and a good sister and a good daughter, and to protect my mother and never make her upset or angry. Now I have added a new tragedy to her life, to our family’s life, and there’s nothing I can do to stop it.”

Tragedy, of course, has trailed the Kennedy family for decades. Caroline Kennedy, a former ambassador to Australia and Japan, was just 5 when her father was assassinated on Nov. 22, 1963; she was 10 when her uncle Robert F. Kennedy, a presidential candidate in the Democratic primary of 1968, was murdered. Her brother, John F. Kennedy Jr., died in 1999, when the plane he was piloting crashed off Martha’s Vineyard, killing him, his wife, Carolyn Bessette Kennedy, and her sister, Lauren Bessette. He was 38 years old, and Tatiana had been a flower girl at his wedding three years earlier.

Having grown up in the glare of her parents’ glamour, and her family’s tragedies, Ms. Kennedy largely succeeded in giving her own children a life out of the spotlight — a relatively normal, if privileged, upbringing, along with a call to public service that was the Kennedy legacy.

by Penelope Green, NY Times |  Read more:

Image: Sonia Moskowitz/Globe Photos/ZUMA
[ed. A strong, intelligent woman. And another Kennedy tragedy. See also: A Battle With My Blood (New Yorker).]

The Depressed Person

The depressed person was interrible and unceasing emotional pain, and the impossibility of sharing or articulating this pain was itself a component of the pain and a contributing factor in its essential horror. 

Despairing, then, of describing the emotional pain itself, the depressed person hoped at least to be able to express something of its contextits shape and texture, as it were-by recounting circumstances related to its etiology. The depressed person's parents, for example, who had divorced when she was a child, had used her as a pawn in the sick games they played, as in when the depressed person had required orthodonture and each parent had claimed-not without some cause, the depressed person always inserted, given the Medicean legal ambiguities of the divorce settlement-that the other should pay for it. Both parents were well-off, and each had privately expressed to the depressed person a willingness, if push came to shove, to bite the bullet and pay, explaining that it was a matter not of money or dentition but of "principle." And the depressed person always took care, when as an adult she attempted to describe to a supportive friend the venomous struggle over the cost of her orthodonture and that struggle's legacy of emotional pain for her, to concede that it may well truly have appeared to each parent to have been, in fact, a matter of "principle," though unfortunately not a "principle" that took into account their daughter's feelings at receiving the emotional message that scoring petty points off each other was more important to her parents than her own maxillofacial health and thus constituted, if considered from a certain perspective, a form of neglect or abandonment or even outright abuse, an abuse clearly connected-here she nearly always inserted that her therapist concurred with this assessment-to the bottomless, chronic adult despair she suffered every day and felt hopelessly trapped in.

The approximately half-dozen friends whom her therapist-who had earned both a terminal graduate degree and a medical degree-referred to as the depressed person's Support System tended to be either female acquaintances from childhood or else girls she had roomed with at various stages of her school career, nurturing and comparatively undamaged women who now lived in all manner of different cities and whom the depressed person often had not laid eyes on in years and years, and whom she called late in the evening, long-distance, for badly needed sharing and support and just a few well-chosen words to help her get some realistic perspective on the day's despair and get centered and gather together the strength to fight through the emotional agony of the next day, and to whom, when she telephoned, the depressed person always apologized for dragging them down or coming off as boring or self-pitying or repellent or taking them away from their active, vibrant, largely pain-free long-distance lives. She was, in addition, also always extremely careful to share with the friends in her Support System her belief that it would be whiny and pathetic to play what she derisively called the "Blame Game" and blame her constant and indescribable adult pain on her parents' traumatic divorce or their cynical use of her. Her parents had, after all-as her therapist had helped the depressed person to see---done the very best they could do with the emotional resources they'd had at the time. And she had, the depressed person always inserted, laughing weakly, eventually gotten the orthoprecedence and required her (i.e., the friend) to get off the telephone. 

The feelings of shame and inadequacy the depressed person experienced about calling members of her Support System long-distance late at night and burdening them with her clumsy attempts to describe at least the contextual texture of her emotional agony were an issue on which she and her therapist were currently doing a great deal of work in their time together. The depressed person confessed that when whatever supportive friend she was sharing with finally confessed that she (i.e., the friend) was dreadfully sorry but there was no helping it she absolutely had to get off the telephone, and had verbally detached the depressed person's needy fingers from her pantcuff and returned to the demands of her full, vibrant long-distance life, the depressed person always sat there listening to the empty apian drone of the dial tone feeling even more isolated and inadequate and unempathized-with than she had before she'd called. The depressed person confessed to her therapist that when she reached out long-distance to a member of her Support System she almost always imagined that she could detect, in the friend's increasingly long silences and/or repetitions of encouraging cliches, the boredom and abstract guilt people always feel when someone is clinging to them and being a joyless burden. The depressed person confessed that she could well imagine each "friend" wincing now when the telephone rang late at night, or during the conversation looking impatiently at the clock or directing silent gestures and facial expressions communicating her boredom and frustration and helpless entrapment to all the other people in the room with her, the expressive gestures becoming more desperate and extreme as the depressed person went on and on and on. The depressed person's therapist's most noticeable unconscious personal habit or tic consisted of placing the tips of all her fingers together in her lap and manipulating them idly as she listened supportively, so that her mated hands formed various enclosing shapes-e.g., cube, sphere, cone, right cylinder-and then seeming to study or contemplate them. The depressed person disliked the habit, though she was quick to admit that this was chiefly because it drew her attention to the therapist's fingers and fingernails and caused her to compare them with her own. donture she'd needed. The former acquaintances and classmates who composed her Support System often told the depressed person that they just wished she could be a little less hard on herself, to which the depressed person responded by bursting involuntarily into tears and telling them that she knew all too well that she was one of those dreaded types of everyone's grim acquaintance who call at inconvenient times and just go on and on about themselves. The depressed person said that she was all too excruciatingly aware of what a joyless burden she was, and during the calls she always made it a point to express the enormous gratitude she felt at having a friend she could call and get nurturing and support from, however briefly, before the demands of that friend's full, joyful, active life took understandable.

The depressed person shared that she could remember, all too clearly, how at her third boarding school she had once watched her roommate talk to some boy on their room's telephone as she (i.e., the roommate) made faces and gestures of entrapped repulsion and boredom with the call, this popular, attractive, and self-assured roommate finally directing at the depressed person an exaggerated pantomime of someone knocking on a door until the depressed person understood that she was to open their room's door and step outside and knock loudly on it so as to give the roommate an excuse to end the call. The depressed person had shared this traumatic memory with members of her Support System and had tried to articulate how bottomlessly horrible she had felt it would have been to have been that nameless pathetic boy on the phone and how now, as a legacy of that experience, she dreaded, more than almost anything, the thought of ever being someone you had to appeal silently to someone nearby to help you contrive an excuse to get off the phone with. The depressed person would implore each supportive friend to tell her the very moment she (i.e., the friend) was getting bored or frustrated or repelled or felt she (i.e., the friend) had other more urgent or interesting things to attend to, to please for God's sake be utterly candid and frank and not spend one moment longer on the phone than she was absolutely glad to spend. The depressed person knew perfectly well, of course, she assured the therapist;' how such a request could all too possibly be heard not as an invitation to get off the telephone at will but actually as a needy, manipulative plea not to get off the telephone - never get off - the telephone.

by David Foster Wallace, Harper's |  Read more (pdf):

Image: uncredited

[ed. Hadn't seen this essay before, but it got me wondering how it might relate to Good Old Neon:]

***

My whole life I’ve been a fraud. I’m not exaggerating. Pretty much all I’ve ever done all the time is try to create a certain impression of me in other people. Mostly to be liked or admired. It’s a little more complicated than that, maybe. But when you come right down to it it’s to be liked, loved. Admired, approved of, applauded, whatever. You get the idea. I did well in school, but deep down the whole thing’s motive wasn’t to learn or improve myself but just to do well, to get good grades and make sports teams and perform well. To have a good transcript or varsity letters to show people. I didn’t enjoy it much because I was always scared I wouldn’t do well enough. The fear made me work really hard, so I’d always do well and end up getting what I wanted. But then, once I got the best grade or made All City or got Angela Mead to let me put my hand on her breast, I wouldn’t feel much of anything except maybe fear that I wouldn’t be able to get it again.The next time or next thing I wanted. I remember being down in the rec room in Angela Mead’s basement on the couch and having her let me get my hand up under her blouse and not even really feeling the soft aliveness or whatever of her breast because all I was doing was thinking, ‘Now I’m the guy that Mead let get to second with her.’ Later that seemed so sad. This was in middle school. She was a very big-hearted, quiet, selfcontained, thoughtful girl — she’s a veterinarian now, with her own Good Old Neon practice — and I never even really saw her, I couldn’t see anything except who I might be in her eyes, this cheerleader and probably number two or three among the most desirable girls in middle school that year. She was much more than that, she was beyond all that adolescent ranking and popularity crap, but I never really let her be or saw her as more, although I put up a very good front as somebody who could have deep conversations and really wanted to know and understand who she was inside. 

Later I was in analysis, I tried analysis like almost everybody else then in their late twenties who’d made some money or had a family or whatever they thought they wanted and still didn’t feel that they were happy. A lot of people I knew tried it. It didn’t really work, although it did make everyone sound more aware of their own problems and added some useful vocabulary and concepts to the way we all had to talk to each other to fit in and sound a certain way. You know what I mean. I was in regional advertising at the time in Chicago, having made the jump from media buyer for a large consulting firm, and at only twenty-nine I’d made creative associate, and verily as they say I was a fair-haired boy and on the fast track but wasn’t happy at all, whatever happy means, but of course I didn’t say this to anybody because it was such a cliché — ‘Tears of a Clown,’ ‘Richard Cory,’ etc. — and the circle of people who seemed important to me seemed much more dry, oblique and contemptuous of clichés than that, and so of course I spent all my time trying to get them to think I was dry and jaded as well, doing things like yawning and looking at my nails and saying things like, ‘Am I happy? is one of those questions that, if it has got to be asked, more or less dictates its own answer,’ etc. Putting in all this time and energy to create a certain impression and get approval or acceptance that then I felt nothing about because it didn’t have anything to do with who I really was inside, and I was disgusted with myself for always being such a fraud, but I couldn’t seem to help it. Here are some of the various things I tried: EST, riding a ten-speed to Nova Scotia and back, hypnosis, cocaine, sacro-cervical chiropractic, joining a charismatic church, jogging, pro bono work for the Ad Council, meditation classes, the Masons, analysis, the Landmark Forum, the 142 David Foster Wallace Course in Miracles, a right-brain drawing workshop, celibacy, collecting and restoring vintage Corvettes, and trying to sleep with a different girl every night for two straight months (I racked up a total of thirty-six for sixty-one and also got chlamydia, which I told friends about, acting like I was embarrassed but secretly expecting most of them to be impressed — which, under the cover of making a lot of jokes at my expense, I think they were — but for the most part the two months just made me feel shallow and predatory, plus I missed a great deal of sleep and was a wreck at work — that was also the period I tried cocaine). I know this part is boring and probably boring you, by the way, but it gets a lot more interesting when I get to the part where I kill myself and discover what happens immediately after a person dies. In terms of the list, psychoanalysis was pretty much the last thing I tried.

The analyst I saw was OK, a big soft older guy with a big ginger mustache and a pleasant, sort of informal manner. I’m not sure I remember him alive too well. He was a fairly good listener, and seemed interested and sympathetic in a slightly distant way. At first I suspected he didn’t like me or was uneasy around me. I don’t think he was used to patients who were already aware of what their real problem was. He was also a bit of a pill-pusher. I balked at trying antidepressants, I just couldn’t see myself taking pills to try to be less of a fraud. I said that even if they worked, how would I know if it was me or the pills? By that time I already knew I was a fraud. I knew what my problem was. I just couldn’t seem to stop. I remember I spent maybe the first twenty times or so in analysis acting all open and candid but in reality sort of fencing with him or leading him around by the nose, basically showing him that I wasn’t just another one of those patients who stumbled in with no clue what their real problem was or who were totally out of touch with the truth about themselves. When you come right down to it, I was trying to show him that I was at least as smart as he was and that there wasn’t much of anything he was going to see about me that I hadn’t already seen and figured out. And yet I wanted help and really was there to try to get help. I didn’t even tell him how unhappy I was until five or six months into the analysis, mostly because Oblivion 143 I didn’t want to seem like just another whining, self-absorbed yuppie, even though I think even then I was on some level conscious that that’s all I really was, deep down.  (more...)  ~ Good Old Neon

Bye, Mom

I get a text that my mom’s in the ICU.

I don’t know how bad it is. I already have a flight to see her in four days and I’m not sure it’s worth moving. This isn’t the first time she’s been in the ICU; for years she’s been in and out of hospitals and stuff that used to make us panic now makes us go ‘oh darn, again?’

I ask, How serious is it? The answers are fuzzy, and I am frustrated. I ask my dad to ask the doctor if she thinks family should come. I get the message: “Doc says yes come immediately.”

Five hours later, my sister and I are landing in Boise. We stop by my parents’ house to grab my mom’s car; I collect photos, a blanket I made her, a little stuffed otter. My mom loves otters. I haven’t thought too hard about her dying, I don’t know if she’s going to die, but everything we’re doing feels important in a way I haven’t felt before. We’re shaky.

We park in the freezing Idaho hospital parking lot at 1 am; my sister says it feels like we’re walking through a fiery gate into doom. She’s right, we’re bracing. The edges of reality begin to pulse.

The front desk gives us wristbands, and we begin the long winding walk to the ICU. At the end of the big hall stands my dad and an old family friend I haven’t seen in years. She hugs us and says “I’m gonna warn you, it’s shocking.” She says, “I’m so sorry, girls.”

We get into the ICU, they make us wash our hands. A nurse preps us, says our mom can hear us but will be unresponsive. Our mom might move, but this is instinctual and not conscious.

We go in. My mom is barely recognizeable, shriveled down like her soul is half gone and her flesh is deflating around the space it’s leaving behind. She’s got a tube in her throat and out her arms and neck, wires all over her head. She’s handcuffed to the bed so she doesn’t tear out the ventilator.

My sister and I hold her hands and cry. We speak to her, but there’s no movement, not even twitching. We sob ‘i love you’ over and over. (...)

I remember hearing other people say the phrase “Nobody knew what to do” during crises, but I’d always assumed it was a paralysis around what to do with important decisions like ‘do we keep them alive’ or ‘what do we do with the body’. But here, in the middle of it, I realize it applies to everything. I can’t think at all. The part of our brain that does evaluation, desire, and choice has been completely overrun; when someone asks “I’m gonna grab sushi, do you want any” we stare at them in confusion. I keep saying ‘sure, I guess’ at food offers, and the little room accumulates way too much food that slowly goes bad over days. It’s hard to know when to sleep, or when to trade shifts - we should probably take shifts, right? Nobody has a sleep schedule, we’re running on a few hours each night. All I can remember is that when I got there, I thought at least one of us should be well rested at any given time. It’s hard to track that now. We’re disorganized, our half-unpacked suitcases spill everywhere. The air is different. We keep the blinds to the window closed because my dad has autism, and so we can’t see the sun passing; the only sense of time passing is the pulses of nurse activity outside the door and their shift changes.

We’ve fallen into a crack in reality, a place where the veil is thin and the water is still, while the world continues to eddy around us through the hallways outside.

The doctors come in and give us updates, frustratingly vague. She has acute liver shock, with an AST over 2200. Her brain isn’t working but it doesn’t seem like the liver shock was the cause (low amonia). They don’t know exactly what’s going on, could be a seizure but no observed seizure activity. They don’t say anything about survival odds, even when I ask. I say “Okay, if you had a hundred people similar to her, in her condition, what percentage of them would you expect to survive” and they say “we don’t know, it’s so dependent on the person.” I say okay - “but probably not 99 of them, and not only 1 of them. So if you know it’s not those numbers, what number sounds more right” and they say “Good point,” but still won’t give me any actual number. I want to scream. I say “do you think taking her off life support is the next step”, and one of them, I think the head doctor, says “If this were my family member, yes, I would prepare to let her pass.” I accept it. I sort of already knew. (...)

We all leave the room to allow each one of us to say our goodbyes in privacy. When it’s my turn I go in and it’s her and I, alone. I’d already talked to her in the past blurry days, in the middle of the night when everyone was gone or sleeping in corners I sat by her bedside, holding her precious hand and whispering to her. But this is the last time. I tell her she was a wonderful mom. The walls are twisting in, squeezing the words out of me. I tell her I’m sad we ended up such different people, in a tragic, inevitable way that put distance between us. I tell her I’ll miss her. I tell her many other tender things that were for her ears alone. Each second is so loud; there’s so few of them left, and they are screaming.

Finally we’ve all said our words, and crowd back in. We hold her, we tell the doctors we’re ready. We are shaking. I don’t know what to do. We can’t do anything. They tell us they’re going to remove the ventilator, that we can step out if we want. We all say no. Leaving would be profane. I need to be with her through every second of this. I watch them gently unstrap things around her face, press buttons. They say after they take it out, she will probably die quickly. The ground is rumbling beneath us, the air is bearing down; I think my sister is going to pass out and I manage to pull her into a chair. They lay out a napkin below my mom’s chin. “One, two, three,” says a nurse, and they pull it out, the long tube that comes out with a wet noise. An immense, familiar agony is tearing through my body, starting in my lower gut and pulsing out through my arms and pouring out from my hands and the top of my head and the water from my eyes. The final descent shudders with holiness. The air itself is crying out with a chorus of our primal cries, we have no control over our bodies. She’s on her own now, and she is dying. My sister is sobbing “Momma, I love you”. We feel for her pulse, can’t tell if the beat we feel is our own hearts in our hands or if it’s hers. I put my fingers under her nose, feel the faintest air for a moment, and then I can’t feel any more. A moment later the doctors come in - they’d been watching her heart from the outside - and tell us she’s gone.

Almost immediately, a calmness washes over the Crack in Reality, and we sit back, and reality releases its contraction. I’m surprised by how fast the change is; I thought maybe now is when it would be the worst, but these seconds are so soft. We cry softly, and hold her body softly, and watch the blood start to pool on the underside of her arms and the bottom of her tongue. She looks like the renassaince paintings of dead bodies, and I wonder how many loved ones those old painters had watched die. My sister crawls into bed with her and wraps her arms around our mom’s body. I am hyper aware of the blood moving in my body, the pink under my own skin. (...)

My mom was the opposite of me in almost every way two humans can be opposite. She was traditional and uncomplicated; she once complained to me she didn’t like these new shows that portrayed the bad guy as sympathetic, that was a level of moral nuance she did not appreciate. She was so devoutly religious, most of you probably cannot actually imagine how much; she loved worshipping Jesus and putting crosses on everything she could. Years ago I asked “when you were little, what did you want to be when you grew up?” and she said “a mom.” She, as far as I know, had one sexual partner her entire life...

She was far from perfect, but for all her flaws she managed to channel an unconditional love made all the more beautiful by how hard it would be for most people like her to love most daughters like me. In my years I’ve met many a sex worker who talked about being disowned by her Christian mom, but my mom wasn’t that kind of Christian. She was a good one.

A mother’s love is crazy. She poured it all out into my earliest years, when I was still forming in the world. I will forever be shaped by it. It’s hard to look at the intensity of that love directly. It’s blinding. It sort of doesn’t matter who I grew into being, or ways we missed seeing each other each other - she and I are linked at the souls. It’s a heavy thing to be loved so fiercely.

by Aella, Knowingless |  Read more:

Image: uncredited
[ed. It's sometimes a relief when someone dies and are finally free of pain and suffering. Personally I don't believe in the concept of a good death, just various levels of less bad.]

Growing Pains: Taking the Magic Out of Mushrooms

‘The attrition is setting in’: how Oregon’s magic mushroom experiment lost its way.

Jenna Kluwe remembers all the beautiful moments she saw in a converted dental clinic in east Portland.

For six months, she managed the Journey Service Center, a “psilocybin service center” where adults 21 and older take supervised mushroom trips. She watched elderly clients with terminal illnesses able to enjoy life again. She saw one individual with obsessive compulsive disorder so severe they spent hours washing their hands who could casually eat food that fell on the floor.

“It’s like five years of therapy in five hours,” Kluwe, a former therapist from Michigan, said.

In 2020, Oregon made history by becoming the first US state to legalize the use of psilocybin in a supervised setting, paving the way for magic mushrooms to treat depression, PTSD and other mental health challenges. A flurry of facilities like the Journey Service Center, as well as training centers for facilitators to guide the sessions, sprung up across the state.

But five years later, the pioneering industry is grappling with growing pains. Kluwe recalled how early last year, her business partner abruptly told her the center was out of money and would close in March – the first in a wave of closures that set off alarms about the viability of Oregon’s program.

The Journey Service Center isn’t alone. The state’s total number of licensed service centers has dropped by nearly a third, to 24, since Oregon’s psilocybin program launched in 2023. The state’s 374 licensed facilitators, people who support clients during sessions, similarly fell. And just this week, Portland’s largest “shroom room” – an 11,000 sq ft venue with views of Mt Hood offering guided trips in addition to corporate retreats – reportedly closed down.

“The attrition is setting in, and a lot of people are not renewing their license because it is hard to make money,” said Gary Bracelin, the owner of Drop Thesis Psilocybin Service Center.

Many worry about how the program’s rules and fees have pushed the cost of a psilocybin session as high as $3,000, putting it out of reach for many just as psychedelics are gaining mainstream acceptance as a mental health treatment. Insurance typically doesn’t cover sessions, meaning people have to pay out of pocket.

Furthermore, the industry is struggling to reach a diverse group of clients: state data show that most people who’ve taken legal psilocybin in Oregon are white, over 44 and earn more than roughly $95,000 or more a year.

Depending on who you ask, these are either signs of an experiment buckling under hefty rules and fees – or a landmark program finding its footing.

“It’s not totally shocking for a brand new program to have a higher price tag,” said Heidi Pendergast, Oregon director of advocacy group Healing Advocacy Fund. She added: “I think that any new industry would see this sort of opening and closing.”

Pendergast pointed to data showing the program is safe with severe reactions vanishingly rare among the estimated 14,000 people who have taken legal psilocybin in the state since mid-2023.

Some practitioners, however, say the state has a long way to go to realize the program’s promises, while other centers are experimenting with new ways to keep costs down, broaden their clientele, and integrate with the mainstream medical system.

‘Some of them are total overkill’

Legal psilocybin seemed like a natural fit for Bracelin. The self-described serial entrepreneur previously founded a cannabis dispensary chain and did sales and marketing for outdoor products during snowboarding’s early days. When the program launched, he started jumping through the many hoops for Drop Thesis to start taking clients in January 2024.

The first obstacle, he said, was finding a property that met the state’s requirements to be more than 1,000 feet from a school and not located in a residential area – with a landlord willing to rent for the center. Bracelin said more than a dozen landlords turned him down before he found a spot. Then there was the challenge of getting insurance for a business centered on a federally illegal drug. The center used private funders instead of banks, he said.

Drop Thesis charges $2,900 for a session, which can last up to six hours as well as before and after meetings with a facilitator, while offering discounts to veterans and during Pride Month as well as one monthly scholarship that covers the full price, Bracelin said.

Factored into the price of a session is the cost of a facilitator and a “licensee representative” who walks clients through paperwork and other requirements. State rules require centers to pay a $10,000 annual licensing fees, install surveillance cameras, alarm systems and securely store mushrooms in safes.

“Some [rules] are definitely justified,” Bracelin said. “And some of them are total overkill, out of fear from people who don’t understand the product.”...

Adding to regulatory hurdles is the fact that Oregon’s local governments can ask voters to ban psilocybin businesses, creating a patchwork of bans in 25 of Oregon’s 36 counties and in dozens of cities.

Angela Allbee, the manager of Oregon’s psilocybin program, said in an emailed statement that the state became the first to enact regulations for a drug that’s federally illegal, and those regulations were written with broad input that have proven safe. As more data and feedback come in, the state will consider adjusting the rules, she said...

Although psilocybin is associated with mental health concerns, the 2020 ballot initiative that created Oregon’s program was designed to keep it outside of the medical system. Now, many supporters say it needs an outside source of cash, which could come from integration with the medical system.

Oregon lawmakers earlier this year took a first step toward making that a reality.

by Jake Thomas, The Guardian |  Read more:

Images: uncredited/Jake Thomas 

Federal Funding Cuts Cancelled 383 Active Clinical Trials, Dumping Over 74K Participants

When the Trump administration brutally cut federal funding for biomedical research earlier this year, at least 383 clinical trials that were already in progress were abruptly cancelled, cutting off over 74,000 trial participants from their experimental treatments, monitoring, or follow-ups, according to a study published today in JAMA Internal Medicine.

The study, led by researchers at Harvard, fills a knowledge gap of how the Trump administration’s research funding cuts affected clinical trials specifically. It makes clear not just the wastefulness and inefficiency of the cuts but also the deep ethical violations, JAMA Internal Medicine editors wrote in an accompanying editor’s note.

In March, the National Institutes of Health, under the control of the Trump administration, announced that it would cancel $1.8 billion in grant funding that wasn’t aligned with the administration’s priorities. The Harvard researchers, led by health care policy expert Anupam Jena, used an NIH database and a federal accountability tracking tool to find grants supporting clinical trials that were active as of February 28 but had been terminated by August 15.

During that time, there were 11,008 trials funded and in various stages. Of those, 383 were terminated. Some cancelled trials were still in early phases before recruiting participants (14 percent), some were in the process of recruiting participants and hadn’t yet fully begun (34.5 percent), a sliver were enrolling participants by invitation (3.4 percent), and some were completed (36 percent). Then there were the trials that were in progress—active, no longer recruiting—about 11 percent, 43 trials. In this stage, participants were in the process of receiving interventions. In the 43 trials, there were 74,311 trial participants collectively.

Of the 383 cancelled trials, 118 (31 percent) were for cancers, 97 (25 percent) were for infectious diseases, 48 (12.5 percent) were for reproductive health, and 47 (12 percent) were for mental health.

by Beth Mole, Ars Technica |  Read more:

Image: Mayo clinic via

Emergency Room Notebook, 1977

You never hear sirens in the emergency room — the drivers turn them off on Webster Street. I see the red backup lights of ACE or United Ambulance out of the corner of my eye. Usually we are expecting them, alerted by the MED NET radio, just like on TV. “City One: This is ACE, Code Two. Forty-two-year-old male, head injury, BP 190 over 110. Conscious. ETA three minutes.” “City One … 76542 Clear.”

If it is Code Three, where life is in critical danger, the doctor and nurses wait outside, chatting in anticipation. Inside, in room 6, the trauma room, is the Code Blue team. EKG, X-ray technicians, respiratory therapists, cardiac nurses. In most Code Blues, though, the EMT drivers or firemen are too busy to call in. Piedmont Fire Department never does, and they have the worst. Rich massive coronaries, matronly phenobarbital suicides, children in swimming pools. (...)

I like my job in Emergency. Blood, bones, tendons seem like affirmations to me. I am awed by the human body, by its endurance. Thank God — because it’ll be hours before X-ray or Demerol. Maybe I’m morbid. I am fascinated by two fingers in a baggie, a glittering switchblade all the way out of a lean pimp’s back. I like the fact that, in Emergency, everything is reparable, or not.

Code Blues. Well, everybody loves Code Blues. That’s when somebody dies — their heart stops beating, they stop breathing — but the Emergency team can, and often does, bring them back to life. Even if the patient is a tired eighty-year-old you can’t help but get caught up in the drama of resuscitation, if only for a while. Many lives, young fruitful ones, are saved.

The pace and excitement of ten or fifteen people, performers … it’s like opening night at the theater. The patients, if they are conscious, take part too, if just by looking interested in all the goings-on. They never look afraid.

If the family is with the patient it is my job to get information from them, to keep them informed about what’s going on. Reassure them, mostly.

While the staff members think in terms of good or bad codes — how well everyone did what they were supposed to do, whether the patient responded or not — I think in terms of good or bad deaths.

Bad deaths are ones with the manager of a hotel as next of kin, or the cleaning woman who found the stroke victim two weeks later, dying of dehydration. Really bad deaths are when there are several children and in-laws I have called in from somewhere inconvenient and none of them seem to know each other or the dying parent at all. There is nothing to say. They keep talking about making arrangements, about having to make arrangements, about who will make arrangements.

Gypsies are good deaths. I think so … the nurses don’t and security guards don’t. There are always dozens of them, demanding to be with the dying person, to kiss them and hug them, unplugging and screwing up the TVs and monitors and assorted apparatus. The best thing about Gypsy deaths is they never make their kids keep quiet. The adults wail and cry and sob but all the children continue to run around, playing and laughing, without being told they should be sad or respectful.

Good deaths seem to be coincidentally good Codes — the patient responds miraculously to all this life-giving treatment and then just quietly passes away. (...)

I saw blind Mr. Adderly on the 51 bus the other night. His wife, Diane Adderly, came in DOA a few months ago. He had found her body at the foot of the stairs, with his cane.

Ratshit Nurse McCoy kept telling him to stop crying.

“It simply won’t help the situation, Mr. Adderly.”

“Nothing will help. It’s all I can do. Let me alone.”

When he heard McCoy had left, to make arrangements, he told me that he had never cried before. It scared him, because of his eyes.

I put her wedding band on his little finger. Over a thousand dollars in grimy cash had been in her bra, and I put it in his wallet. I told him that the denominations were fifties, twenties, and hundreds and he would need to find somebody to sort it all out.

When I saw him later on a bus he must have remembered my walk or smell. I didn’t see him at all — just climbed on the bus and slumped into the nearest seat. He even got up from the front seat near the driver to sit by me.

“Hello, Lucia,” he said.

He was very funny, describing his new, messy roommate at the Hilltop House for the Blind. I couldn’t imagine how he could know his roommate was messy, but then I could and told him my Marx Brothers idea of two blind roommates — shaving cream on the spaghetti, slipping on spilled stuffaroni, etc. We laughed and were silent, holding hands … from Pleasant Valley to Alcatraz Avenue. He cried, softly. My tears were for my own loneliness, my own blindness.

The first night I worked in Emergency, an ACE ambulance brought in a Jane Doe. Staff was short that night so the ambulance drivers and I undressed her, pulled the shredded panty hose off of varicose veins, toenails curling like parrots’. We unstuck her papers, not from her gray flesh-colored bra but from her clammy breasts. A picture of a young man in a marine uniform: George 1944. Three wet coupons for Purina cat chow and a blurred red, white, and blue Medicare card. Her name was Jane. Jane Daugherty. We tried the phone book. No Jane, no George.

If their purses haven’t already been stolen old women never seem to have anything in them but bottom dentures, a 51 bus schedule, and an address book with no last names.

The drivers and I worked together with pieces of information, calling the California Hotel for Annie, underlined, the Five-Spot cleaners. Sometimes we just have to wait until a relative calls, looking for them. Emergency phones ring all day long. “Have you seen a — ?” Old people. I get mixed up about old people. It seems a shame to do a total hip replacement or a coronary bypass on some ninety-five-year-old who whispers, “Please let me go.”

It doesn’t seem old people should fall down so much, take so many baths. But maybe it’s important for them to walk alone, stand on their own two feet. Sometimes it seems they fall on purpose, like the woman who ate all those Ex-Lax — to get away from the nursing home.

There is a great deal of flirty banter among the nurses and the ambulance crews. “So long — seizure later.” It used to shock me, all the jokes while they’re in the middle of a tracheotomy or shaving a patient for monitors. An eighty-year-old woman, fractured pelvis, sobbing, “Hold my hand! Please hold my hand!” Ambulance drivers rattling on about the Oakland Stompers.

“Hold her bloody hand, man!” He looked at me like I was crazy. I don’t hold many hands anymore and I joke a lot, too, if not around patients. There is a great deal of tension and pressure. It’s draining — being involved in life-and-death situations all the time.

Even more draining, and the real cause of tension and cynicism, is that so many of the patients we get in Emergency are not only not emergencies, there is nothing the matter with them at all. It gets so you yearn for a good cut-and-dried stabbing or a gunshot wound. All day long, all night long, people come in because they don’t have much appetite, have irregular BMs, stiff necks, red or green urine (which invariably means they had beets or spinach for lunch).

Can you hear all those sirens in the background, in the middle of the night? More than one of them is going to pick up some old guy who ran out of Gallo port.

Chart after chart. Anxiety reaction. Tension headaches. Hyperventilation. Intoxication. Depression. (These are the diagnoses — the patients’ complaints are cancer, heart attack, blood clots, suffocation.) Each of these patients costs hundreds of dollars including ambulance, X-ray, lab work, EKG. The ambulances get a Medi-Cal sticker, we get a Medi-Cal sticker, the doctor gets a Medi-Cal sticker, and the patient dozes off for a while until a taxi comes to take him home, paid for with a voucher. God, have I become as inhuman as Nurse McCoy? Fear, poverty, alcoholism, loneliness are terminal illnesses. Emergencies, in fact.

We do get critical trauma or cardiac patients, and they are treated and stabilized with awesome skill and efficiency in a matter of minutes and rushed to surgery or ICU, CCU.

Drunks and suicides take hours of time holding up needed rooms and nurses. Four or five people waiting at my desk to sign in. Ankle fractures, strep throat, whiplash, etc.

Maude, beery, bleary, is sprawled on a gurney, kneading my arm like a neurotic cat.

“You’re so kind … so charming … it’s this vertigo, dear.”

“What is your last name and your address? What happened to your Medi-Cal card?”

“Gone, everything is gone … I’m so miserable and so alone. Will they keep me here? There must be something the matter with my inner ear. My son Willie never calls. Of course, it’s Daly City and a toll call. Do you have children?”

“Sign here.”

I have found a minimum of information among the rest of the mess in her purse. She uses Zig-Zag papers to blot her lipstick. Big smeary kisses, billowing like popcorn all over her purse.

“What’s Willie’s last name and phone number?”

She begins to cry, reaching both arms for my neck.

“Don’t call him. He says I’m disgusting. You think I’m disgusting. Hold me!”

“I’ll see you later, Maude. Let go of my neck and sign this paper. Let go.”

Drunks are invariably alone. Suicides come in with at least one other person, usually many more. Which is probably the general idea. At least two Oakland police officers. I have finally understood why suicide is considered a crime.

Overdoses are the worst. Time again. Nurses usually too busy. They give them some medication but then the patient has to drink ten glasses of water. (These are not the stomach-pump critical overdoses.) I’m tempted to stick my finger down their throat. Hiccups and tears. “Here, one more cup.”

There are “good” suicides. “Good reasons” many times like terminal illness, pain. But I’m more impressed with good technique. Bullets through the brain, properly slashed wrists, decent barbiturates. Such people, even if they don’t succeed, seem to emanate a peace, a strength, which may have come from having made a thoughtful decision.

It’s the repeats that get to me — the forty penicillin capsules, the twenty Valium and a bottle of Dristan. Yes, I am aware that, statistically, people who threaten or attempt suicide eventually succeed. I am convinced that this is always an accident. John, usually home by five, had a flat tire and could not rescue his wife in time. I suspect a form of manslaughter sometimes, the husband or some other regular rescuer having at last finally tired of showing up just in the guilty nick of time.

“Where’s Marvin? Must be worried sick.”

“He’s phoning.”

I hate to tell her he’s in the cafeteria, has gotten to like their Reuben sandwiches.

Exam week at Cal. Many suicides, some succeeding, mostly Oriental. Dumbest suicide of the week was Otis.

Otis’s wife, Lou-Bertha, had left him for another man. Otis took two bottles of Sominex, but was wide awake. Peppy, even.

“Get Lou-Bertha before it’s too late!”

He kept hollering instructions to me from the trauma room. “My mother … Mary Brochard 849-0917 … Try the Adam and Eve Bar for Lou-Bertha.”

Lou-Bertha has just left the Adam and Eve for the Shalimar. It was busy for a long time, then an answer, and Stevie Wonder for a whole record of “Don’t You Worry ’Bout a Thing.”

“Run that by me one more time, honey … He OD’d on what?”

I told her.

“Shit. You go tell that toothless worthless nigger he better be taking a lot more of something a lot stronger if’n he expects to get me outta here.”

I went in to tell him … what? She was glad he was okay, maybe. But he was on the telephone in room 6. Had his pants on, still wore a polka-dot gown on top. He had located the half-pint of Royal Gate in his jacket pocket. Was just sort of lounging around, like an executive.

“Johnnie? Yeah. Otis here. I’m up here at City Emergency Room. You know, off Broadway. What’s happening? Fine, fine. That bitch Lou-Bertha messing ’round with Darryl … [Silence.] No shit.”

The charge nurse came in. “He still here? Get him out! We have four Codes coming in. Auto accident, all Code Three, ETA ten minutes.”

I try to sign as many patients as possible before the ambulances arrive. The people will just have to wait later, about half of them will leave, but meanwhile all are restless and angry.

Oh, hell … there were three here before this one but better just sign her in. It’s Marlene the Migraine, an Emergency habituée. She is so beautiful, young. She stops talking with two Laney College basketball players, one with an injured right knee, and stumbles to my desk to go into her act.

Her howls are like Ornette Coleman in early “Lonely Woman” days. Mostly what she does is first, bang her head against the wall near my desk, dump everything off my desk with a swoop.

Then she starts her cries. Whooping, anguished yelps, reminiscent of Mexican corridas, Texan love songs, “Aiee, Vi, Yi!”

“Ah-hah, San Antone!”

She has slumped to the floor and all I can see is an elegantly manicured hand, extending her Medi-Cal card above the desk.

“Can’t you see I’m dying? I’m going blind, for crissakes!”

“Come on, Marlene — how’d you get those false eyelashes on?”

“Nasty whore.”

“Marlene, sit up and sign in. Ambulances are coming, so you’ll have to wait. Sit up!”

She sits up, starts to light a Kool. “Don’t light that, sign here,” I say. She signs and Zeff comes to put her into a room.

“Well, well, if it isn’t our old angry pal, Marlene.”

“Don’t you humor me, you dumb nurse.”

The ambulances arrive, and for sure they are emergencies. Two die. For an hour all the nurses, doctors, on-call doctors, surgeons, everybody is tied up in room 6 with the two surviving young patients.

One of Marlene’s hands is struggling into a velvet coat sleeve, the other is applying magenta lipstick.

“Holy Christ — I can’t hang around this joint all night, right? Seeya, honey!”

“See ya, Marlene.”

by Lucia Berlin, Maxima-Library |  Read more:
Image: A Manual for Cleaning Women: Selected Stories
[ed. For Tessa and Gary. From Lucia Berlin's "A Manual For Cleaning Women: Selected Stories. Had an emergency room experience lately and kept thinking about this story.]

Every Wrinkle is a Policy Failure

A lot of people blame their frown lines on their job, the tanning salon, or aging. I blame the government.

There’s a treatment for wrinkles—Botox and similar toxins that freeze your face in place.. It can be pricey. The average price of a Botox treatment is above $400, depending on how many doses or units you get injected. But Botox isn’t patented so why is it still so expensive?

 

Some of the cost comes from buying the chemical itself. Allergan which owns Botox doesn’t have a patent on it- but it does have a trademark for the brand name. And Botox isn’t just the botulism toxin that paralyzes your face- there are a few additive chemicals mixed in and Allergan’s manufacturing process is a trade secret.

But wholesale Botox is still kind of cheap- you can get it for $3.50 a unit but the price the consumer pays is around $20 in urban areas.

If you’ve ever gotten Botox or its equivalent, you know you are not getting highly tailored and personalized injections here- you can get a same-day appointment, walk in, get injected, and walk out.

This should not require a medical degree.

Unfortunately, in some states only physicians or nurses supervised by physicians are allowed to. The obvious solution is to just let more people inject Botox- I can’t imagine a state just fully deregulating injection rights, but allowing pharmacists (who already handle a huge share of vaccinations), pharmacy techs under pharmacist direction, or registered nurses could make getting Botox way cheaper and make the number of facilities where you could Botox way larger.

The cost savings to the consumer might actually be larger than what you would think given the difference in labor costs. There are already cheaper alternatives to Botox that work just as well like Dysport or Xeomin (which is pure toxin without the additives) . But in the U.S. where we’re already paying so much for labor, the cost difference of the injectable can be overlooked. But in other countries, Botox alternatives are outcompeting Botox.

Liberalizing injection laws would make Americans look younger and spend less per treatment.

Are You Using Tretinoin?

Botox regulations aren’t the only way the government tries to make us look our age.

I think most of my readers here are straight men but if I could give you some non-policy advice, it would be that you should consider using tretinoin. It’s a cream you can use for acne but unlike a lot of woo-based anti-aging products it actually works to reverse the effects of sun on skin aging. [ed. Retin- A, Avita, Renova, others]

Unfortunately, you need a prescription to use it even though it’s incredibly safe as long as you aren’t pregnant- and if it irritates your skin just stop using it. So every time I see an urgent care doctor for whatever reason at the end of the appointment, I always ask “could I have a prescription for this?” It has never failed.

Tretinoin is still pretty cheap but the necessity of the prescription drives up the price in terms of time and inconvenience. Federal rules require it to be prescription-only but states have a lot of discretion to make “prescription required” a fairly nominal requirement. For example, states could allow pharmacists to prescribe the cream so instead of scheduling a telehealth or doctor’s appointment, you just show up at the pharmacy and ask for it. States can also make laws friendly to telehealth.

While I think every state should do this as well as make it easy to inject Botox, Nevada or Florida seem like the perfect first-movers. Both attract a ton of tourists, both have a lot of sun (photoaging!), and both just have the Botox-friendly vibes. You could also throw in easy-to-prescribe finasteride rules to help out balding men.

by Cold Button Issues |  Read more:

Image: uncredited via

[ed. Botox and GLP-1's (Ozempic, Wegovy etc,). Everyone wants to look their best.]

Ask Not Why You Would Work in Biology, But Rather: Why Wouldn't You?

There’s a lot of essays that are implicitly centered around convincing people to work in biology. One consistent theme amongst them is that they all focus on how irresistibly interesting the whole subject is. Isn’t it fascinating that our mitochondria are potentially an endosymbiotic phenomenon that occurred millions of years ago? Isn’t it fascinating that the regulation of your genome can change throughout your life? Isn’t it fascinating that slime molds can solve mazes without neurons? Come and learn more about this strange and curious field! (...)

But I’d like to offer a different take on the matter. Yes, biology is very interesting, yes, biology is very hard to do well. Yet, it remains the only field that could do something of the utmost importance: prevent a urinary catheter from being shunted inside you in the upcoming future.

Being catheterized is not a big deal. It happens to literally tens of millions of people every single year [ed. Really? Just checked and it's true, at least for millions.]. There is nothing even mildly unique about the whole experience. And, you know, it may be some matter of privilege that you ever feel a catheter inside of you; the financially marginalized will simply soil themselves or die a very painful death from sepsis.

But when you are catheterized for the first time—since, make no mistake, there is a very high chance you will be if you hope to die of old age—you’ll almost certainly feel a sense of intense wrongness that it happens at all. The whole procedure is a few moments of blunt violence, invasiveness, that feels completely out of place in an age where we can edit genomes and send probes beyond the solar system. There may be times where you’ll be able to protect yourself from the vile mixture of pain and discomfort via general anesthesia, but a fairly high number of people undergo (repeated!) catheterization awake and aware, often gathering a slew of infections along the way. This is made far worse by the fact that the most likely time you are catheterized will be during your twilight years, when your brain has turned to soup and you’ve forgotten who your parents are and who you are and what this painful tube is doing in your urethra. If you aren’t aware of how urinary catheters work, there is a deflated balloon at the end of it, blown up once the tube is inside you. This balloon keeps the whole system uncomfortably stuck inside your bladder. So, you can fill in the details on how much violence a brain-damaged person can do to themselves in a position like this by simply yanking out the foreign material.

Optimizing for not having a urinary catheter being placed into you is quite a lofty goal. Are there any alternatives on the table? Not practical ones. Diapers don’t work if the entire bladder itself is dysfunctional, suprapubic tubes require making a hole into the bladder (and can also be torn out), and nerve stimulation devices require expensive, invasive surgery. And none of them will be relied upon for routine cases, where catheterization is the fastest, most reliable solution that exists. You won’t get the gentle alternatives because you won’t be in a position to ask for them. You’ll be post-operative, or delirious, or comatose, or simply too old and confused to advocate for something better.

This is an uncomfortable subject to discuss. But I think it’s worth level-setting with one another. Urinary catheterization is but one of the dozens of little procedures that both contributes to the nauseating amount of ambient human suffering that repeats over and over and over again across the entire medical system and is reasonably common enough that it will likely be inflicted upon you one day. And if catheterization doesn’t seem so bad, there are a range of other awful things that, statistically speaking, a reader has a decent chance of undergoing at some point: feeding tubes, pap smears, mechanical ventilation, and repeated colonoscopies are all candidates.

Moreover, keep in mind that all these are simply the solutions to help prevent something far more grotesque and painful from occurring! Worse things exist—cancer, Alzheimer’s, Crohn’s—but those have been talked about to death and feel a great deal more abstract than the relatively routine, but barbaric, medical procedures that occur millions of times per year.

How could this not be your life goal to work on? To reduce how awful maladies, and the awful solutions to those maladies, are? What else is there really? Better prediction markets? What are we talking about?

To be fair, most people go through their first few decades of life not completely cognizant how terrible modern medicine can be. But at some point you surely have to understand that you have been, thus far, lucky enough to have spent your entire life on the good side of medicine. In a very nice room, one in which every disease, condition, or malady had a very smart clinician on staff to immediately administer the cure. But one day, you’ll one day be shown glimpses of a far worse room, the bad side of medicine, ushered into an area of healthcare where nobody actually understands what is going on. (...)

I appreciate that many fields also demand this level of obedience to the ‘cause’, the same installation of ‘this is the only thing that matters!’. The energy, climate change, and artificial-intelligence sectors have similar do-or-die mission statements. But you know the main difference between those fields and biology?

In every other game, you can at least pretend the losers are going to be someone else, somewhere else in the world, happening to some poor schmuck who didn’t have your money or your foresight or your connections to do the Obviously Correct Thing. Instead, people hope to be a winner. A robot in my house to do my laundry, a plane that gets me from San Francisco to New York City in only an hour, an infinite movie generator so I can turn all my inner thoughts into reality. Wow! Capital-A Abundance beyond my wildest dreams! This is all well and good, but the unfortunate reality of the situation is that you will be a loser, an explicit loser, guaranteed to be a loser, in one specific game: biology. You will not escape being the butt of the joke here, because it will be you that betrays you, not the you who is reading this essay, but you, the you that cannot think, the you that has been shoddily shaped by the last several eons of evolution. Yes, others will also have their time underneath this harsh spotlight, but you will see your day in it too. (...)

Yes, things outside of biology are important too. Optimized supply chains matter, good marketing matters, and accurate securities risk assessments matter. Industries work together in weird ways. The people working on better short-form video and payroll startups and FAANGs are part of an economic engine that generates the immense taxable wealth required to fund the NIH grants. I know that the world runs on invisible glue.

Still, I can’t help but think that people’s priorities are enormously out of touch with what will actually matter most to their future selves. It feels as if people seem to have this mental model where medical progress simply happens. Like there’s some natural law of the universe that says “treatments improve by X% per year” and we’re all just passengers with a dumb grin on this predetermined trajectory. They see headlines about better FDA guidelines or CRISPR or immunotherapy or AI-accelerated protein folding and think, “Great, the authorities got it covered. By the time I need it, they’ll have figured it out.”. But that’s not how any of this works! Nobody has it covered! Medical progress happens because specific people chose to work on specific problems instead of doing something else with their finite time on Earth.

by Abhishaike Mahajan, Owl Posting |  Read more:

Image: uncredited

[ed. Just can't comprehend the thinking recently for cutting essential NIH and NSF research funding (and others like NOAA). We used to lead the world.]

My Mom and Dr. DeepSeek

Every few months, my mother, a 57-year-old kidney transplant patient who lives in a small city in eastern China, embarks on a two-day journey to see her doctor. She fills her backpack with a change of clothes, a stack of medical reports, and a few boiled eggs to snack on. Then, she takes a 1.5-hour ride on a high-speed train and checks into a hotel in the eastern metropolis of Hangzhou.

At 7 a.m. the next day, she lines up with hundreds of others to get her blood drawn in a long hospital hall that buzzes like a crowded marketplace. In the afternoon, when the lab results arrive, she makes her way to a specialist’s clinic. She gets about three minutes with the doctor. Maybe five, if she’s lucky. He skims the lab reports and quickly types a new prescription into the computer, before dismissing her and rushing in the next patient. Then, my mother packs up and starts the long commute home.

DeepSeek treated her differently.

by Viola Zhou, Rest of World |  Read more:

Image: Ard Su 

Fighting a Health Insurance Denial

Seven tips to help.

When Sally Nix found out that her health insurance company wouldn’t pay for an expensive, doctor-recommended treatment to ease her neurological pain, she prepared for battle.

It took years, a chain of conflicting decisions, and a health insurer switch before she finally won approval. She started treatment in January and now channels time and energy into helping other patients fight denials.

“One of the things I tell people when they come to me is: ‘Don’t panic. This isn’t a final no,’” said Nix, 55, of Statesville, N.C.

To control costs, nearly all health insurers use a system called prior authorization, which requires patients or their providers to seek approval before they can get certain procedures, tests and prescriptions.

Denials can be appealed, but nearly half of insured adults who received a prior authorization denial in the last two years reported the appeals process was either somewhat or very difficult, according to a July poll published by KFF, a health information nonprofit that includes KFF Health News.

“It’s overwhelming by design,” because insurers know confusion and fatigue cause people to give up, Nix said. “That’s exactly what they want you to do.”

The good news is you don’t have to be an insurance expert to get results, she said. “You just need to know how to push back.”

Here are tips to consider when faced with a prior authorization denial:

1. Know your insurance plan.

Do you have insurance through your job? A plan purchased through healthcare.gov? Medicare? Medicare Advantage? Medicaid?

These distinctions can be confusing, but they matter a great deal. Different categories of health insurance are governed by different agencies and are therefore subject to different prior authorization rules.

For example, federal marketplace plans, as well as Medicare and Medicare Advantage plans, are regulated by the U.S. Department of Health and Human Services. Employer-sponsored plans are regulated by the Department of Labor. Medicaid plans, administered by state agencies, are subject to both state and federal rules.

Learn the language specific to your policy. Health insurance companies do not apply prior authorization requirements uniformly across all plans. Read your policy closely to make sure your insurer is following its own rules, as well as regulations set by the state and federal government.

2. Work with your provider to appeal.

Kathleen Lavanchy, who retired in 2024 from a job at an inpatient rehabilitation hospital in the Philadelphia area, spent much of her career communicating with health insurance companies on behalf of patients.

Before you contact your health insurer, call your provider, Lavanchy said, and ask to speak to a medical care manager or someone in the office who handles prior authorization appeals.

The good news is that your doctor’s office may already be working on an appeal.

Medical staffers can act as “your voice,” Nix said. “They know all the language.”

You or your provider can request a “peer-to-peer” review during the appeals process, which allows your doctor to discuss your case over the phone with a medical professional who works for the insurance company.

3. Be organized.

Many hospitals and doctors use a system called MyChart to organize medical records, test results, and communications so that they are easily accessible. Similarly, patients should keep track of all materials related to an insurance appeal — records of phone calls, emails, snail mail, and in-app messages.

Everything should be organized, either digitally or on paper, so that it can be easily referenced, Nix said. At one point, she said, her own records proved that her insurance company had given conflicting information. The records were “the thing that saved me,” she said.

“Keep an amazing paper trail,” she said. “Every call, every letter, every name.”

Linda Jorgensen, executive director of the Special Needs Resource Project, a nonprofit offering online resources for patients with disabilities and their families, has advised patients who are fighting a denial to specifically keep paper copies of everything.

“If it isn’t on paper, it didn’t happen,” she said.

Jorgensen, who serves as a caregiver to an adult daughter with special needs, created a free form you can print to help guide you when taking notes during phone calls with your insurance company. She advised asking the insurance representative for a “ticket number” and their name before proceeding with the conversation.

The silver lining is that most denials, if appealed, are overturned. (...)

For the sake of speed, some people are turning to artificial intelligence for help crafting customizable appeal letters. (...)

4. Find an advocate.

Many states operate free consumer assistance programs, available by phone or email, which can help you file an appeal. They can explain your benefits and may intervene if your insurance company isn’t complying with requirements.

Beyond that, some nonprofit advocacy groups, such as the Patient Advocate Foundation, might help. On the foundation’s website is guidance about what to include in an appeal letter. For those battling severe disease, foundation staffers can work with you one-on-one to fight a denial.

by Lauren Sausser, LA Times | Read more:
Image: Helen Quach/Los Angeles Times

[ed. PSA for future reference.]

Canada is Killing Itself

The country gave its citizens the right to die. Doctors are struggling to keep up with demand.

The euthanasia conference was held at a Sheraton. Some 300 Canadian professionals, most of them clinicians, had arrived for the annual event. There were lunch buffets and complimentary tote bags; attendees could look forward to a Friday-night social outing, with a DJ, at an event space above Par-Tee Putt in downtown Vancouver. “The most important thing,” one doctor told me, “is the networking.”

Which is to say that it might have been any other convention in Canada. Over the past decade, practitioners of euthanasia have become as familiar as orthodontists or plastic surgeons are with the mundane rituals of lanyards and drink tickets and It’s been so long s outside the ballroom of a four-star hotel. The difference is that, 10 years ago, what many of the attendees here do for work would have been considered homicide.

When Canada’s Parliament in 2016 legalized the practice of euthanasia—Medical Assistance in Dying, or MAID, as it’s formally called—it launched an open-ended medical experiment. One day, administering a lethal injection to a patient was against the law; the next, it was as legitimate as a tonsillectomy, but often with less of a wait. MAID now accounts for about one in 20 deaths in Canada—more than Alzheimer’s and diabetes combined—surpassing countries where assisted dying has been legal for far longer.

It is too soon to call euthanasia a lifestyle option in Canada, but from the outset it has proved a case study in momentum. MAID began as a practice limited to gravely ill patients who were already at the end of life. The law was then expanded to include people who were suffering from serious medical conditions but not facing imminent death. In two years, MAID will be made available to those suffering only from mental illness. Parliament has also recommended granting access to minors.

At the center of the world’s fastest-growing euthanasia regime is the concept of patient autonomy. Honoring a patient’s wishes is of course a core value in medicine. But here it has become paramount, allowing Canada’s MAID advocates to push for expansion in terms that brook no argument, refracted through the language of equality, access, and compassion. As Canada contends with ever-evolving claims on the right to die, the demand for euthanasia has begun to outstrip the capacity of clinicians to provide it.

There have been unintended consequences: Some Canadians who cannot afford to manage their illness have sought doctors to end their life. In certain situations, clinicians have faced impossible ethical dilemmas. At the same time, medical professionals who decided early on to reorient their career toward assisted death no longer feel compelled to tiptoe around the full, energetic extent of their devotion to MAID. Some clinicians in Canada have euthanized hundreds of patients.

The two-day conference in Vancouver was sponsored by a professional group called the Canadian Association of MAiD Assessors and Providers. Stefanie Green, a physician on Vancouver Island and one of the organization’s founders, told me how her decades as a maternity doctor had helped equip her for this new chapter in her career. In both fields, she explained, she was guiding a patient through an “essentially natural event”—the emotional and medical choreography “of the most important days in their life.” She continued the analogy: “I thought, Well, one is like delivering life into the world, and the other feels like transitioning and delivering life out.” And so Green does not refer to her MAID deaths only as “provisions”—the term for euthanasia that most clinicians have adopted. She also calls them “deliveries.”

Gord Gubitz, a neurologist from Nova Scotia, told me that people often ask him about the “stress” and “trauma” and “strife” of his work as a MAID provider. Isn’t it so emotionally draining? In fact, for him it is just the opposite. He finds euthanasia to be “energizing”—the “most meaningful work” of his career. “It’s a happy sad, right?” he explained. “It’s really sad that you were in so much pain. It is sad that your family is racked with grief. But we’re so happy you got what you wanted.”

Has Canada itself gotten what it wanted? Nine years after the legalization of assisted death, Canada’s leaders seem to regard MAID from a strange, almost anthropological remove: as if the future of euthanasia is no more within their control than the laws of physics; as if continued expansion is not a reality the government is choosing so much as conceding. This is the story of an ideology in motion, of what happens when a nation enshrines a right before reckoning with the totality of its logic. If autonomy in death is sacrosanct, is there anyone who shouldn’t be helped to die?

by Elaina Plott Calabro, The Atlantic | Read more:
Image: Johnny C.Y. Lam

Did Your Cancer Treatment Just Get Taken Away?

It starts with a little bump on your neck. You notice it when your hand brushes against it while you’re washing your hair, but at first you don’t pay it much attention. Then your spouse looks at your neck and asks you “What’s that?” It’s a little brown bump, maybe a mole. You think that maybe you should get it checked out by a dermatologist, but you forget to make an appointment, because work has just been so busy lately.

Then a few weeks later you look at the bump again, and it looks noticeably bigger. This time you call the dermatologist, but the soonest they can get you in is three weeks from now. By the time you’re in the doctor’s office, the bump is at least double the size it was when you noticed it. The doctor is tense and concerned, and he does a biopsy. Five days later you get the result over the phone: Melanoma.

“That’s cancer, right?” you ask, just to confirm, feeling something fall away in the pit of your stomach. “Yes,” the doctor’s assistant confirms. “That’s cancer.”

Cancer. The word is like the fall of an axe, cutting off the future you had imagined for yourself. Now instead, the days ahead are filled with surgeries, chemotherapy, radiation, CT scans, MRIs. You will never again entirely be free of the eternal gnawing fear of discovering that the cancer has spread. Your hair is going to fall out, you’re going to go under the knife, you’re going to be weak and sick. You’re going to to read everything there is to read about cancer, and it still won’t help. It may go into remission, or you may die, but your life will never read the same.

This story reflects the sad reality of life for millions of Americans. Cancer is the second most common cause of death, just barely behind heart disease, killing over 600,000 every year. And every year, almost 2 million Americans are diagnosed with new cases of cancer. Some kinds, like prostate cancer, are usually manageable; others, like pancreatic cancer and glioblastoma, are practically death sentences.

Now, there’s a common myth that cancer is an intractable disease that will never succumb to modern medicine. In 1971, President Richard Nixon launched the so-called “War on Cancer”; for many years, it was fashionable to say that cancer had won the war. But in fact, since around 1990, humanity has been making steady gains. Thanks to advances in early detection, screening, and various treatments, as well as the drop in smoking and a vaccine against a virus that causes cervical cancer, death rates have fallen at every age for almost every type of cancer. For a while this was masked by an increase in lung cancer from the smoking boom, but now that’s over too:

The problem is that since the population is growing steadily older, overall death rates are still higher than they were in Nixon’s day:

We’re delaying death from cancer, but not eliminating it.

In recent years, however, an explosion of new therapies has promised to accelerate our progress in treating the disease, changing the very nature of what it means to have cancer. The most promising of these are immunotherapies — medical techniques that use the body’s own immune system to attack cancer cells. And of those therapies, one of the most promising is mRNA vaccines.

Yes, mRNA vaccines — the same kind of technology that we used to vaccinate Americans against Covid during the pandemic. But it works a little differently. These mRNA cancer vaccines aren’t something that everyone takes in advance, to prevent themselves from getting cancer — instead, they’re a type of therapy that you take after you get diagnosed with the disease. Often, the vaccines are personalized, meaning that they develop a specific vaccine for your particular cancer.

mRNA vaccines, in combination with other therapies, promise to contain many cancers, turning them from a death sentence into a manageable, non-fatal disease. These vaccines are currently in development to fight all of the biggest killers: lung cancer, colon cancer, pancreatic cancer, breast cancer, and melanoma. They’re even being used against glioblastoma, the most aggressive and common type of brain cancer. There are even some tantalizing results suggesting that mRNA could soon be used to create a universal cancer therapy.

Imagine how the story I told at the top of this post would go in an age of highly effective mRNA therapies. Instead of being sentenced to years of gut-wrenching fear, possibly followed by an agonizing death, someone diagnosed with cancer would simply sigh and realize that they would have to spend a bunch of money on treatments for the foreseeable future. That is the world toward which science is taking us.

And yet now all of this is in danger. The MAGA movement, which now holds near-absolute political power in America, has gone to war against mRNA technology. RFK Jr., Trump’s Secretary of Health and Human Services and a prominent vaccine skeptics, just canceled a large amount of federal funding:

The Department of Health and Human Services (HHS) announced this week it is beginning a "coordinated wind-down" of federally funded mRNA vaccine development.

This includes terminating awards and contracts with pharmaceutical companies and universities and canceling 22 investment projects worth nearly $500 million. While some final-stage contracts will be allowed to be completed, no new mRNA-based projects will be initiated, the HHS said.

Officially, all of the cancelled funding is supposedly for mRNA vaccines for upper respiratory illness — basically, Covid and anything that looks remotely like Covid. So officially, cancer research isn’t being cancelled — yet. But cancer researchers are terrified that this move will derail their whole field, and with good reason. The chilling effect of this funding cancellation will cause a general loss of enthusiasm for the technology.

If you’re a researcher developing an mRNA treatment for lung cancer, how would you rate your chances of RFK Jr. approving your therapy for mass use when it has “mRNA” in the name? If you’re a private funding organization, do you really want to fund a technology that the government — and a large chunk of the American electorate — has an irrational vendetta against? What lab is going to want to allocate resources toward a field that’s marked for destruction? And what aspiring researcher is going to want to dedicate their career to it? (...)

So it’s very possible that thanks to RFK Jr., the Trump administration, and the MAGA movement writ large, cancer vaccines will not be available nearly as soon as it looked like they would just a few months ago. Eventually, the technology will be developed, with some combination of funding from Europe, China, private companies, and so on. But in the meantime, many people — including many Americans — will experience the nightmare of a traditional cancer diagnosis, like what I described at the top of this post.

Why is this happening? Why is the U.S. government attacking the technology that offers us the greatest chance to defeat one of humanity’s oldest and most terrible scourges?

It’s pretty easy to trace the reasons historically. During the pandemic, the antivax movement took over the American right — possibly because of fear of needles, possibly as a macho way to express bravery against the virus itself, possibly because of instinctive dread of modern technology or expert consensus or government recommendations. But whatever the reason, Trump — despite having authorized the project that created mRNA vaccines, and despite wanting to take some deserved credit for defeating Covid — was forced to accede to the wave of antivax sentiment, and to ally with it in order to win reelection in 2024. Part of that meant hiring RFK Jr. and putting him in charge of HHS — a political marriage of convenience.

But fundamentally, it’s hard to fathom just how America arrived at this juncture. We’ve certainly seen both sides of the U.S. political divide embrace blatant lies in order to express solidarity. For the right, the biggest lie was always that climate change isn’t happening, or isn’t caused by humans. Climate denial might seem like a lie without consequences — after all, the worst harms from climate change are going to arrive decades in the future. But because green energy technologies also happened to become cheap, the right-wing dogma that anything “green” is bad is causing the MAGA movement to oppose the cheapest and most reliable energy sources available:

Not having cheap energy is certainly bad. But dying of cancer? You’d think that would be a bridge too far, even for Trump’s followers. But recall how during the Covid pandemic, right-wing types died in droves because they refused to take the life-saving vaccine: 

by Noah Smith, Noahpinion |  Read more:

Image: OurWorldInData