Healthcare policy/Medicine/Politics

What we talk about when we talk about killing Obamacare

Posted on by David Dobbs / 0 Comment

 

We’re actually talking about killing our neighbors.

Late this month the Supreme Court is expected to rule on King v Burwell, a suit financed by the conservative right that seeks to use some trivial inconsistencies in phrasing to gut Obamacare in 37 states and possibly cripple it nationwide. That SCOTUS even agreed to hear the suit is a sign of how thoroughly he right has politicized the legislative branch.

The suit has yet to be decided. But that it has generated so much coverage underlines something that to my mind gets far too little attention: This suit, and the ferocious, endless attack on Obamacare is it part of, advances the right’s cause even if the court rules the subsidies are legal. They’re winning a partial and cruel victory even if they win. For the uncertainty over this decision — along the certainty that the right will continue to launch other legal challenges if they lose, because much of the right seems to live to kill Obamacare — is already destroying one of the ACA’s prime benefits, which is to give US citizens a sense of security, stability, and continuity about their access to healthcare.

Why are we to be denied this? Tens of millions of people in 37 states (those that will be directly affected if SCOTUS scuttles the premium subsidies that the suit claims are unconstitutional) now stand at risk of losing their healthcare or facing increases in premiums. My own family suffered a relatively minor version of this insecurity when we had to cancel a move from Vermont to Maine because Maine will be one of those states if SCOTUS rules against Obamacare.

The right is playing Russian roulette, only they hold their pistol, which they tirelessly reload when their longshot loads don’t fire, to the pulsing temples of their own constituents. They are perfectly willing and even eager to issue death sentences to people who work hard and pay taxes and simply cannot, lacking subsidies, afford healthcare in a system whose costs have run shamelessly out of control. The right is happy to have those people drop dead simply — preferably, it seems, after they’ve given every last cent and then some to a rapacious medical industry that refuses to be effectively regulated.

If you think this wild rhetoric, kindly read the second item below ( all three are from this week’s weekly briefing by the ACA Times), which shows that the right’s refusal to accept Obamacare Medicaid increases in 22 states is already causing 5,200 avoidable deaths each year.

Bill Would Address Impact of Possible ‘King’ Ruling – A Republican Congressman introduced legislation to help individuals who would lose their insurance subsidies if the Supreme Court rules in favor of the plaintiffs in the “King v. Burwell” case. A verdict in the case is expected by the end of June.acatimes.com/byr

Expanding Medicaid Could Save 5,200 Lives – The decision by 22 states not to expand Medicaid will result in 5,200 avoidable deaths each year, and hundreds of thousands of Americans not receiving needed medical care, says a White House Report. acatimes.com/djf

Hospital Bad Debt Declines in Expansion States – Unpaid bills declined at non-profit hospitals in states that expanded Medicaid during 2014, according to a study by Moody’s Investors Service. The reduction in bad debt averaged 13%, with some hospitals seeing a 40% decline. acatimes.com/xai

When does this stop? As a country we somehow take this ludicrous state of affairs as a given. Other countries simply cannot understand how we allow this. Neither can I.

Biology/Biotech/Culture/Culture of Science/Genetics/Healthcare policy/History of science/Medicine/Politics/Psychiatry/Published elsewhere

The limits of genetics – my essay at Buzzfeed

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BuzzfeedDNAWorthIllo
Illustration by Daniel Fishel for BuzzFeed News

A bit late to my own story here, as a reporting trip intervened, but but a couple weeks ago I wrote an essay for Buzzfeed about the overselling of medical genomics, which goes beyond hype in a way that distorts funding, science, and the public’s ideas about genetics.

We live in an age of hype. But the overselling of the Age of Genomics — the hype about the hope, the silence about the disappointments — gobbles up funding that we might spend better elsewhere, warps the expectations of patients and the incentives of scientists, and has implications even for people who pay genetics scant attention. Many hospitals, for instance, are now collecting genetic information from patients that they may market to “research partners” such as drug companies. Some take more care than others do to secure informed consent. (Had blood drawn lately? Read everything you signed that day?) It’s not just that they’re selling you this stuff. They may well be selling you. And the sale depends on an exaggerated picture of genetic power and destiny.

To be sure, medical genetics has chalked up some sweet victories. Our growing ability to spot rare mutations, for instance, is helping doctors diagnose and sometimes treat nasty rare diseases. Last fall, for instance, doctors in St. Louis sequenced an infant dying of liver failure, saw that he had inherited a rare mutation that both his parents happened to pass to him, devised a way to counter the mutation’s disruption of his immune system, and saved his life.

But when it comes to how genes shape the traits and diseases that matter most to us — from intelligence and temperament to cancer and depression — genetic research overpromises and underdelivers on actionable knowledge. After 110 years of genetics, and 15 years after the $3.8 billion Human Genome Project promised fast cures, after more billions spent and endless hype about results just around the corner, we have few cures. And we basically know diddly-squat.

I know — diddly-squat is rough talk. Yet this is hardly a radical claim. Geneticists and doctors outside of Big Genomics — people studying genetics in songbirds, sea urchins, monkeys, microbes, fruit flies, and roundworms, for instance — often voice it privately. Others are eager to tell us what genes can’t do or warn that “precision medicine” will let us down. One of the world’s most respected geneticists, Britain’s Steve Jones, gives quite an entertaining lecture on our humble state of knowledge.“The more we learn, the less we understand,” he says. “We know almost nothing of genetics.”

This essay merely makes public a discussion (and complaints) that have long aired in conference corridors. Unsurprisingly, I got some grief (as well as some amiable, constructive responses) from some of the parties who felt accused. Some tried to cast the essay as an isolated, misguided complaint, or an attack on science, or, in one case, as pandering to scientists jealous of the funding that flows to Big Genomics. Wrong, wrong, and wrong. Virtually all the criticisms and concerns I voiced in the essay were things I’d heard many times from other geneticists, including geneticists who are well-established and have secure funding. This isn’t an attack on science. It’s a discussion about how to do it well.

You can read the rest at What is Your DNA Worth?

Uncategorized

Robin Marantz Henig’s gorgeous story on a woman facing one death to dodge another

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Robin Marantz Henig is at her superb best in “The Last Day of Her Life,” a NY Times Magazine feature about a remarkable woman, Sandy Bern, who decides she’ll end her life before she loses her self to Alzheimer’s. At one point, as Bern’s power fades, her daughter, Emily, gives birth to Bern’s first grandchild. Little Felix makes Bern think there might be some things her new self is better at than her former.

She told Emily that her “new brain” might actually make her better suited to being a grandmother than her focused, hyper­analytical “old brain.” She seemed to have found a way of being that she liked, content to sing silly songs and make nonsense sounds for hours on end.

Emily liked her mother this way, too. It had sometimes been difficult to be Sandy’s daughter. As a child, Emily wanted to wear her hair long and take ballet lessons; Sandy, ever vigilant about gender stereotypes, nudged her to cut her hair and play soccer instead. But now Sandy didn’t seem to care about such things. Emily thought that her mother was taking pleasure in life in a way that the old Sandy could not have anticipated — and she found herself hoping that the joy her mother took in Felix might make her reconsider her intention to end her life quite so soon.

Which is hardly all the story.

This is gorgeous, deeply reported, deeply felt work — vintage Henig. It increases my pleasure at seeing the Magazine’s revival as a place that embraces such beautiful, brilliant, patient stuff.

 

Anthropology/Biology/Books/Brains and Behavior/Culture/Culture of Science/History of science/Politics/Readings

A rowdy, harrowing, vital book: My Times review of ‘Galileo’s Middle Finger,’ by Alice Dreger.

Posted on by David Dobbs / 6 Comments
Galileo's Finger
Galileo’s middle finger, Florence, Italy

I’ve a review of Alice Dreger’s latest book in this week’s New York Times Sunday Book Review; it just appeared online.

 

“Galileo’s Middle Finger” is many things: a rant, a manifesto, a treasury of evocative new terms (sissyphobia, autogynephilia, phall-o-meter) and an account of the author’s transformation “from an activist going after establishment scientists into an aide-de-camp to scientists who found themselves the target of activists like me” — and back again.

As its title suggests, the book is also a defiant gesture aimed at those who would deny empiricism. Yet this middle finger (Galileo’s actual middle finger, in fact, which Dreger stumbles across in Italy) is raised in affirmation as well. It points toward the stars that confirmed his cosmology — and toward empiricism’s power to create a fairer, more rational society. For Galileo is famous not just because he saw how the stars move. He’s famous because he insisted we see for ourselves how the world works, share what we see and shape our society accordingly.

Dreger brings a similar mission to ­activism and ethics. She insists that both be based on evidence, so that we respond to problems as they really are, rather than as we’d like to see them.

Dreger is not merely a lively writer but efficient as well — all the more important in a book as stuffed with adventure and information as this one. She brings in Galileo, for instance, early, swiftly, and gracefully, and in two punchy paragraphs tells the core of his tale. In two more she delivers his core wisdom:

Stop thinking that the authorities know what they’re talking about when they’re talking about natural causes and effects. Focus your mind on discoverable evidence. 

I should note that while Dreger (and I, for reviewing the book favorably) will be likely be attacked for being against some particular agenda, her point (and thus mine) is not about ends, but means. She wants people to pursue agendas, especially those concerning ethics, in a way that stays true to the facts.

Her fight in her chapter about transgender politics, for instance, is not with any particular transgender agenda, but with the willingness of one particular group of transgender activists, at one particular time, to pursue its agenda by ignoring credible evidence (and indulging in ad hominem attacks). That is, a small group of activists was not only willing to call her son a womb turd (seriously), but to ignore, and ask others to ignore, the credible evidence on which their target based his work.

Dreger lifts her middle finger (and Galileo’s), in short, not at people advocating for transgender rights and recognition (a cause she had worked for herself), but at anyone asking us let ideology trump facts. Evidence, she asserts, “is … the most important ethical issue in a modern democracy.” For only on empirical evidence — the actual reality of what is happening — can we base ethical action and behavior.

It’s a wildly entertaining book, chock full of amazing stories. And by its nature — and hers, for she is a lively, rowdy, funny, plainspoken writer and advocate —  bound to test almost any reader’s emotions at some point. Most likely you will object at some point to something here. The book’s strength is that it asks, even demands, that you object on the basis of fact.

Photo by Marc Roberts via flickr, some rights reserved.  

 

Culture/Photography/Readings

The frightening beauty of Sally Mann’s children

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L to R: Sally Mann's photo of her daughter, Virginia, on a 1990 cover of Aperture; a Wall Street Journal response; Virginia's response to the Journal. From the NY Times, copyrights Aperture, WSJ, Sally Mann.
L to R: Sally Mann’s photo of her daughter, Virginia, on a 1990 cover of Aperture; a Wall Street Journal response; Virginia’s response to the Journal. (From the NY Times, copyrights Aperture, WSJ, Sally Mann.)

Sally Mann on the frightening beauty of her children, in the New York Times Magazine. I find this an especially moving reflection.

That’s the critical thing about the family pictures: They were possible only because of the farm, the place. America now hardly has such a thing as privacy, at least not the kind we had at the cabin. How natural was it, in that situation, to allow our children to run naked? Or, put another way, how bizarre would it have been to insist on bathing suits for their river play, which began after breakfast and often continued long after dark, when all three would dive like sleek otters for glow sticks thrown in the pool under the still-­warm cliffs?

They spent their summers in the embrace of those cliffs, protected by distance, time and our belief that the world was a safe place. The pictures I made of them there flowed from that belief and that ignorance, and at the time seemed as natural as the river itself.

Uncategorized

Gourevitch and Langwiesche on GermanWings crash; play war and real war; Mad Men’s dark bright side.

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A Bewildering Crash. Philip Gourevitch at The New Yorker.

Just as the brevity of the flight, and the apparent spontaneity of the captain’s decision to leave the cockpit—to stretch a leg? or take a piss? or have a chat? We do not know—tells us that Lubitz could not have planned before he flew that day to crash the plane that way; and just as the locking of the door, and the pushing of the button that brought the plane down, tell us that he acted consciously and deliberately, so Lubitz’s breathing, unbroken by any attempt at speech, tells us that he chose not to explain himself. He knew that he was on the record. What did he think he was doing? What came over him? What possessed him? And why?

Is It Premature to Blame the Co-Pilot for the Germanwings Crash? William Langwiesche thinks so. Interview by Kia Makarechi at Vanity Fair.

There’s the Bureau d’Enquêtes et d’Analyses (B.E.A.), which is the technical investigators—the equivalent of our N.T.S.B. They’re very cautious, when it comes to releasing information—too much so. But there’s also always, in France, a parallel criminal investigation, because deaths are involved, and a Napoleonic mindset requires this.

That’s who this prosecutor in Marseille is. These are not people who are experienced with airplane accidents. The quality of these criminal investigations varies, depending on the quality of the consultants they bring in. Sometimes they’re quite good, even better than the B.E.A. In this case, I don’t know.

Were this an N.T.S.B. investigation, we would see a very different kind of information release. I would expect that we would see a neutral release of what we found in the recorder, and not pointing the finger at the co-pilot. You can include that we heard breathing, and the pilot hammering on the door, and that the cruising altitude was reselected, but leave it at that at for a few days. Let others point fingers, I say.

Maybe the dark side of Mad Men is the bright side. By James Meek at London Review of Books.

Betty is on her second marriage. She broke with her previous husband, the Madison Avenue advertising executive Don Draper, when she found out he was lying about who he was, and was sleeping with another man’s wife; we saw him cheat on Betty with at least five other women: a commercial artist, a wealthy client, a 21-year-old Euro-drifter he met in Los Angeles, a flight attendant, and his young daughter Sally’s teacher. Betty suffers from chronic depression at a time when neither the diagnosis nor the pills to smother it are easy to come by. But what, here, is undermining what? What if, with or against our will, we aren’t shocked by the darkness beneath the surface, but childishly delighted by the prettiness of the surface shimmering over the darkness? What if the vintage fashion-shoot perfection of the Christmas scene leaves a more powerful impression on us than our awareness of the suffering of Betty and her children?

Real War: Yemenis Share Reports, Rumors and Wry Commentary Online as Bombs Drop. Robert Mackey at The New York Times.

"“there’s no electricity, we’re hiding in the hallway, can you tell me who’s bombing us?”

Play War: Homemade Recreational Battlefields. What you didn’t know about paintball’s landscapes. By Ruth Dusseault and Michael Shanks at Places.

Homemade recreational battlefields also draw heavily on the visual and spatial conventions of video games. Since Operation Desert Storm, 25 years ago, simulated war has evolved from the arcade into a vast subculture that comprises massive multiplayer online games as well as paintball and live-action role-play. Leagues and scenario championships have proliferated. Some organizers hold online “casting calls” where players sign up for roles ahead of an event. Myths and legends are sourced for designing missions and storylines. A war historian may be hired to stage the field.

Books/Culture/Read Two

Calvin and Hobbes walk into a bar. Grammar cop says Oh no they didn’t.

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From today’s Read 2 You’d think a column arguing that Calvin and Hobbes is the best comic strip ever couldn’t start an argument. Yet it does. Also, Mary Norris rocks.

Why Calvin and Hobbes was America’s most profound comic strip. Christopher Caldwell at The Wall Street Journal.

Two things set the strip apart. First, the artistry of it, from its broad color palette (on Sundays) to the dynamism and physicality of its brush-drawn figures. Calvin and Hobbes have their conversations on a toboggan as it flies off the lip of a mogul, or stretching their arms to balance as they cross a wobbly log over a creek, or tumbling through frames at the reader as they fight. Calvin is drawn as simply as Charlie Brown, but the dinosaurs that pass through his mind are drawn in the heavily shadowed photo-realism of 1950s comic books. Calvin’s fantasies are always more vivid, more real than reality.

It is these dreams that are the real subject of the strips: the city of Stupidopolis that Calvin builds out of sand castles and destroys, the Transmogrifier (actually a cardboard box) that will turn him into a tiger like Hobbes, the efforts of Stupendous Man to duck schoolwork and of Spaceman Spiff (“poised precariously over a percolating pit of putrid pasta”) to avoid the inedible meals that Calvin’s mother serves. (Calvin’s own preference is for a breakfast cereal called Chocolate-Frosted Sugar Bombs.)

It is these dreams that are the real subject of the strips: the city of Stupidopolis that Calvin builds out of sand castles and destroys, the Transmogrifier (actually a cardboard box) that will turn him into a tiger like Hobbes, the efforts of Stupendous Man to duck schoolwork and of Spaceman Spiff (“poised precariously over a percolating pit of putrid pasta”) to avoid the inedible meals that Calvin’s mother serves. (Calvin’s own preference is for a breakfast cereal called Chocolate-Frosted Sugar Bombs.)

An argument about grammar breaks out in the comments.

Charles Klaniecki, 14 hours ago:

I write to the author re “From these situations emerges a social and a philosophical vision…”. Should it not be the following?: “From these situations emerge a social and a philosophical vision…” Otherwise, great essay.

Anna Chodakiewicz Wellisz 13 hours ago:

No, “vision” is the subject of the sentence, not “these situations,” which is why “emerges” is the correct verb; “these situations” is the object of the preposition. To see the syntax more clearly, try rearranging the word order: “A social and a philosophical vision emerges from these situations.”

Bruce Margolius 13 hours ago:

Anna would be correct if there were not a second “a”. But there is, so she’s wrong. If I have a red and a blue truck, I have two trucks, not a red and blue truck.

Anna Chodakiewicz Wellisz 13 hours ago:

>No, it’s really the subject, not the number of attributes, that matters in subject-verb agreements. The subject is “vision,” and the two adjectives that describe it do not make it “visions.” I suspect that is why the WSJ editors left the sentence be. At the risk of creating a verbal comic strip of sorts, I give you another example of a sentence, also with two attributes and two independent articles: “A brave and a wise man he is.” The syntax may be archaic, even awkward, but the man who is the subject of my sentence remains only one man, just as the vision, both social and philosophical, remains only one vision (the word “vision” rather than “visions” is our clue left by the writer). It is a somewhat pretentious sentence, but it is nevertheless grammatically correct. Signing off–

JEFF SWAIL 11 hours ago:

A brave and a wise man walk into a bar……

Anna Chodakiewicz Wellisz 10 hours ago:

If you want to have two men, or, technically speaking, a compound subject, here is how you would write it: “A wise man and a brave man walk into a bar…” Your sentence, as it stands now, has only one man, both brave and wise, doing the walking, and therefore, you have a subject-verb agreement error.

Despite the two modifiers (“brave” and “wise”), there is a simple third person singular subject (“man”), and so there needs to be a third person singular verb to match (“walks,” not “walk”): “A brave and a wise man walks into a bar…”

Whatever your intentions in writing this sentence, two modifiers really do not turn that particular man into two. Only adding another man could do that. I can’t ask you to trust me on this because there is no reason why you should, but I suggest that you look it up.

Regards.

This particular grammar cop does not do humor.

The New Yorker’s grammarian, Mary Norris, does:

Even something as ostensibly simple as the serial comma can arouse strong feelings. The serial comma is the one before “and” in a series of three or more things. With the serial comma: My favorite cereals are Cheerios, Raisin Bran, and Shredded Wheat. Without the serial comma: I used to like Kix, Trix and Wheat Chex.…

[t]he Internet is busy with examples of series that are absurd without the serial comma:

“We invited the strippers, J.F.K. and Stalin.” (This has been illustrated online, and formed the basis of a poll: which stripper had the better outfit, J.F.K. or Stalin.)

“This book is dedicated to my parents, Ayn Rand and God.”

And there was the country-and-Western singer who was joined onstage by his two ex-wives, Kris Kristofferson and Waylon Jennings.

 

Books/Brains and Behavior/Culture/Read Two/War/Writing

How you read, Alice Munro writes, and war comes home

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AliceMunroCover


 Here are three of the five items on today’s edition of my semi-regular “Read 2 of these and call me in the morning” mailing.

The life, death, and resurrection of Alice Munro’s stories. By Alice Munro. I’m having a delicious time reading Munro’s Selected Stories, 1968–1994 (Vintage, 1997), which I picked up a couple weeks ago while browsing a used bookstore in San Francisco. One exquisitely wrought tale after another. But the book is worth the price just for the introduction, where she talks about how she works and how some of the stories came together. Here, having written about beginnings, she writes about endings (to first full drafts) and what they reveal, or not, about whether the story is really done.

[Beginnings are] the easy part. Endings are another matter. When I’ve shaped 4the story in my head, before starting to put it on paper, it has, of course, an ending. Often this ending will stay in place right through the first draft. Sometimes it stays in place for good. Sometimes not. The story, in the first draft, has put on rough but adequate clothes, it is “finished” and might be thought to need no more than a lot of technical adjustments, some tightening here and expanding there, and the slipping in of some telling dialogue and chopping away of flabby modifiers. It’s then, in fact, that the story is in the greatest danger of losing its life, of appearing so hopelessly misbegotten that my only relief comes from abandoning it. It doesn’t do enough. It does what I intended, but it turns out that my intention was all wrong. Quite often I decide to give up on it. (This was the point at which, in my early days as as a writer, I did just chuck everything out and get started on something absolutely new.) And now that the story is free from my controlling hand a change in direction may occur. I can’t ever be sure this will happen, and there are bad times, though i should be used to them. I’m no good at letting go. I am thrifty and tenacious now, no spendthrift and addict of fresh starts as in my youth. i go around glum and preoccupied, trying to think of ways to fix the problem. Usually the right way pops up in the middle of this.

A big relief, then, Renewed energy. Resurrection.

Except that it isn’t the right way. Maybe a way to the right way. Now I write pages and pages I’ll have to discard. new angles are introduced, minor characters brought center stage, lively and satisfying scenes are written, and it’s all a mistake. Out they go. But by this time I’m on the track, there’s no backing out. i know so much more than I did, I know what I want to happen and where I want to end up and I just have to keep trying till I find the best way of getting there.

Reading is all about association. Nancy Andreasen on association cortices, “Secrets of the Creative Brain,” The Atlantic.

[T]he most extensively developed regions in the human brain are known as association cortices. These regions help us interpret and make use of the specialized information collected by the primary visual, auditory, sensory, and motor regions. For example, as you read these words on a page or a screen, they register as black lines on a white background in your primary visual cortex. If the process stopped at that point, you wouldn’t be reading at all. To read, your brain, through miraculously complex processes that scientists are still figuring out, needs to forward those black letters on to association-cortex regions such as the angular gyrus, so that meaning is attached to them; and then on to language-association regions in the temporal lobes, so that the words are connected not only to one another but also to their associated memories and given richer meanings.

You just did all that.

The things they carry home. By Thomas Gibbons-Neff at The Washington Post.

Even on the short overnight ops, sometimes we talked about things we knew we’d carry home. On a cold night in March 2010, Jeff brought up the kid he’d shot a month earlier, when the battle for the Afghan city of Marja was hot and there was no shortage of 15-year-olds picking up Kalashnikovs off the ground. Jeff had killed one of them with four shots from a heavy-caliber semi-auto that made a soft thud when the bolt released. The kid had a rifle, and even kids with rifles can kill Marines, Jeff had figured.

A few weeks later, we were on the side of the road watching for Taliban fighters digging bombs into the ground, and Jeff was telling me about it. He described the way the kid fell and how he wasn’t sure he’d done the right thing.

That was five years ago.

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Culture/Culture of Science/History of science/Medicine/Readings/The Orchid & The Dandelion

Changing Styles in the Meta-Narrative of Science

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J.S. Zerbe's 'multi-plane' in 1910, when, Thompson tells us, 'aircraft' was one of the most common words in patents. (Wikimedia Commons)
J.S. Zerbe’s ‘multi-plane’ in 1910, when, Thompson tells us, ‘aircraft’ was one of the most common words in patents. (Wikimedia Commons)

From Derek Thompson at The Atlantic:

In a series of papers studying the history of American innovation, Packalen and Bhattacharya indexed every one-word, two-word, and three-word phrase that appeared in more than 4 million patent texts in the last 175 years. To focus their search on truly new concepts, they recorded the year those phrases first appeared in a patent. Finally, they ranked each concept’s popularity based on how many times it reappeared in later patents. Essentially, they trawled the billion-word literature of patents to document the birth-year and the lifespan of American concepts, from “plastic” to “world wide web” and “instant messaging.”

…

The overall story, Bhattacharya told me, follows the shift from “atoms to bits”—from the loud world of trains and cars in the 19th century to the invisible life of software. But within that meta-narrative (and this is where the colors come in handy), you can see moments where one industry dominated the patent literature—like chemistry (black) in the 1930s, medicine (red) in the 1980s, and computers (green) in the last few decades.

And the serious winners are medicine and computers, which, Thompson says, “have reigned over patents like no two categories have dominated any previous period of invention in U.S. history.

This is a fun read and a good reminder (we can’t get them too often) that not just patents but science tends to reflect the cultural obsessions of an age.