Medicine

Hand Transplant Transparency Nightmares

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Sheila Advento, who gained two hands at the cost of her kidneys, says she was never told of that risk, and her doctors could not produce any documentation that they ever did so. Photo by Dan Winters, all rights reserved.

This February WIRED published my investigative story “The Devastating Allure of Medical Miracles,” which pulls aside the operating room curtain to reveal an experimental field with serious lapses in transparency, ethics, and patient care, and astounding levels of patient suffering that have gone unreported. The abundant glowing press and publicity about these experimental transplants over the past 20 years in the US consistently conveys an impression of high success rates and few serious complications. In fact, out of roughly 30 hand-tranpslant recipients in the US, three patients have died of causes clearly or possibly tied to their transplants, seven have had their transplants removed, and at least ten have suffered serious, life-changing side-effects or complications. Several of these people told me they were not adequately told of these risks beforehand. Another 10 patients or so, meantime, have so far done pretty well, and the remaining 10 have outcomes in between these extremes.

One can — and should — argue over whether these numbers are acceptable for a procedure that enhances life rather than saving or prolonging it. (Even routine solid-organ transplants tend to shorten lifespan sharply.) But it is arguable — a basic requirement of medicine and science — that the researchers who’ve done this work should have made these numbers plain to the public so that they could be discussed frankly  by the field, the regulators, the public, and potential new patients. Yet these numbers were simply not available — were in fact hidden, with multiple complications and at least one death kept out of the public eye — until they were gathered and exposed by my 9 months of reporting, which drew on patient records and accounts, interviews and correspondence with transplant-center team members who gave me current (but unpublished) accounts of previously unknown bad outcomes and complications, and data collected by bioethicist Emily Herrington, of the University of Pittsburgh. (All these outcomes were then carefully independently fact-checked and confirmed.)

The human cost of both these complications and of the lack of transparency about them — a cost tallied in immeasurable pain and suffering, in death, debility, lost income, in patients’ feelings of abandonment, betrayal, and moral horror — is spectacularly high. Even at 8,000 words, the story that WIRED printed was too small to hold it all. The field continues largely as it did before.

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Climate Change Enters Its Blood Sucking Phase

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The brain of a yearling moose killed by ticks. Photo by David Dobbs.

Climate Change Enters Its Blood Sucking Phase,The Atlantic, Feb 21, 2019.

In northern New England, a climate-driven explosion in populations of moose ticks is decimating moose populations. They do so by literally sucking the life out of young calves during their first winter. In April 2019, I went into the snow of far northern Vermont with two young state field biologists to find the most recent calf to succumb. In one of the most gripping pieces of reporting I’ve ever done, I witnessed a grim necropsy done with such respect and care and sheer, unexpected beauty that it somehow gave me hope.

Despite the gore, the smell of digestion, and the animal’s emaciated state, the calf’s innards possessed an acute and unexpected beauty. His depletion—his body’s desperation to extract from itself every joule of energy—had turned the calf’s epithelia, the thin, stretchy linings that surround many organs, and which normally have a milky translucence marbled with pallid blotches of fat, into a gorgeously clear membrane. It was like a shrink-wrapped looking glass. When Debow pulled back the calf’s head and opened the underside of its throat, the animal’s thick windpipe, so cleanly displayed and perfectly formed and isolated, had the quality of a museum piece—with futuristic overtones, in its distinct, hoselike, mathematically regular segmentation, of the bones and strange tubes of the monster in Alien. No atlas or animation ever so beautifully displayed a trachea.

Get the rest at The Atlantic.

Biology/Brains and Behavior/Culture of Science/History of science/Medicine/Psychiatry/Published elsewhere

What does it mean when a clinical trial fails? Probably not what you think.

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Illustration © Eleanor Shakespeare, used by permission, all rights protected.

Today I published a story I’ve been working on, off and on, for exactly two years. “What Can We Learn When a Clinical Trial is Stopped” now online at both Mosaic and, as “Why a ‘Lifesaving’ Depression Treatment Didn’t Pass Clinical Trials“, at The Atlantic, looks at what a given clinical trial can and cannot tell us, and what it means when one fails.

I recommend you just go read the story — a strange one — at the site of your choice. But for those who like a teaser first  — the jacket copy, as it were — here you go:

I first wrote about neurologist Helen Mayberg’s innovative and rather radical depression treatment— the insertion of two humming electrodes deep into the brain — in the New York Times Magazine  back in 2006. At that point it was being hailed as the most promising advance in depression treatment in decades.

In 2008 the device maker St Jude, hoping to take the treatment to market, started a double-blinded trial designed to test it in 200 patients across North America.

In 2013 they very, very quietly halted it “for futility” after implanting only 90 patients. No data was released, no statements made about why. The silence was broken only in October 2017 — 9 years after the trial began — when The Lancet published the trial’s official report.

What happened? What does a “halt for futility” even mean? Why did the trial of such a promising treatment fail? What did it mean that it had? These seemingly simple questions actually proved quite hard to answer. Over the past two years, since I first heard about the halt, I’ve been working on answering them anyway. For the story on what I found, and what we can and can’t expect of clinical trials, see Mosaic or The Atlantic.

Brains and Behavior/Culture/Culture of Science/Healthcare policy/History of science/Medicine/Psychiatry

How Culture Shapes Madness, my latest at Pacific Standard

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“The Touch of Madness,” published online today in Pacific Standard magazine, is probably the most important article I’ve ever written.

In the fall of 2007, an incandescently brilliant young scholar named Nev Jones — a force and intellect such as few of us ever encounter — arrived at DePaul University to begin her PhD program in philosophy. Two years later she was out of the program, deeply psychotic, thoroughly terrified, and almost utterly abandoned. Four years later she emerged, a different PhD in hand, with a story to tell:

Culture, from the reigning medical views of madness to the subtle and sometimes violent responses of those around the afflicted, profoundly shapes the experience and expression of madness. And the way we in the West react to madness makes it far, far worse.

By this view, when people in mental distress are shunned and relegated to a class of others needing care away from the rest of us, they are pushed outside of culture precisely when they need it most. They may seem utterly detached from reality. But they will keenly comprehend their exile.

This idea is not original to Jones. It’s a demonstrable fact supported by decades of research and solid, multidisciplinary work. But Jones articulates this with particular power because she knows intimately both the related literature and the experience.

This is her story: A story of what it’s like to have reality refashion itself, as one wrinkle in fabric’s reality after another gather the world into folds; to watch as those around you run or drift away; to find yourself alone in a place where the labyrinths of psychosis feels safer than the isolation one faces in the ‘real’ world. It’s a story of brilliance, madness, betrayal, friendship, courage, and renewal. It’s also the story of how the rest of us can help by changing the way we view madness, and how we can better understand those around us who’ve experienced or will experience psychosis.

I have faith that, despite the inevitable imperfections of my telling here, you will never forget Jones’s’ story.

A brief excerpt:

Words started to look strange. She began experiencing “inarticulable atmospheric changes,” as she put it—not hallucinations, really, but alterations of temporality, spatiality, depth perception, kinesthetics. Shimmerings in reality’s fabric. Sidewalks would feel soft and porous. Audio and visual input would fall out of sync, creating a lag between the movement of a speaker’s lips and the words’ arrival at Jones’ ears. Something was off.

Another time she found herself staring at the stone wall of a building on campus and realizing that the wall’s thick stone possessed two contradictory states. She recognized that the wall was immovable and that, if she punched it, she’d break her hand. Yet she also perceived that the stone was merely a constellation of atomic particles so tenuously bound that, if she blew on it, it would come apart. She experienced this viscerally. She felt the emptiness within the stone.

The Touch of Madness, at Pacific Standard.

Healthcare policy/Medicine/Psychiatry/Writing

A Sane Person’s Privacy Nightmare

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A LinkNYC wifi tower. Photo by Billie Grace Ward, via flickr, some rights reserved.

At Slate today I examine the potential privacy nightmare posed by the emerging healthcare sector that wants to use data gathered from smartphone use to spot mental-health crises early and intervene before they get bad. The idea has huge potential for good — and for privacy disasters that could make the recent Equifax leaks look minor.

“You fucking dungeon!” the man, well behind us now, yelled one last time.

It was only later, when I tried to make sense of what he was yelling, that I realized that his cries voiced one of the most difficult and vital questions about how to use connected technology to aid the distressed. Who will have access to our most intimate conversations? In this man’s dungeon lurked a riddle.

A Sane Person’s Privacy Nightmare, Slate, Sept 25, 2007

 

Books/Culture of Science/Genetics/History of science/Readings

Should fitness share the stage with beauty? My review of Prum’s “Evolution of Beauty”

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Charles Darwin, 1883, by John Collier. National Portrait Gallery, London.

The Times Sunday Book Review, six days ahead of the Sunday paper, published today my review of Richard Prum’s “The Evolution of Beauty” (and a few other titles). I found Prum’s book “a delicious read, both seductive and mutinous” — mutinous in particular against those he feels have entrapped evolutionary biology in an “impoverished, even corrupted” gene-centric view “of evolution in general, and in particular of how evolution has shaped sexual relations and human culture.”

This adaptationist view, which sees all selection as natural selection based on fitness, should make room for a view that sees sexual selection, which is exerted through mating choices based on aesthetics and pleasure, as an evolutionay force independent and sometimes contrary to natural selection.

He nimbly mines both the animal and human literature to show how, for one human trait after another, adaptationist explanations miss the mark while aesthetic explanations hit home. His catalog of Things Natural Selection Can’t Explain but Sexual Selection Easily Can includes homosexuality, a tendency toward monogamy, both sex’s taste and capacity for sex outside of female fertility periods, the deweaponization of the human male through the evolutionary shrinkage of almost every body part except the brain and the evolution of human paternal care, which is highly unusual among our fellow apes and close primate cousins. To name just a few.

Consider, for instance, this handful of well-known distinguishing human traits: our constant interest in sex, permanent breasts, big penises, and, last but hardly least, women’s orgasms. Except for constant sexual interest (and possibly female orgasm) in bonobos, none of these traits evolved in our fellow ape species. Prum argues that they evolved in humans because they help women evaluate men’s prosocial-pleasure potential. When sex offers orgasm at relatively low pregnancy risk, it provides a way not just to reproduce but to assess potential mates’ attention to female desires, tastes and choices. Essentially, Prum says, humans evolved to negotiate and have sex as a sort of display ritual. The boudoir is our bower.

Help yourself to the rest over at the Times.

Many thanks to the wonderful New York Times Sunday Book Review editors Parul Sehgal and Gal Beckerman, who supported this review so nicely; and to colleagues Nathaniel Comfort, Eric Johnson, and Daniel Lende, who helped me improve it greatly with sharp reads on early drafts. Any errors, god forbid, are mine.

 

Biology/Brains and Behavior/History of science/Medicine

Does autism happen the way we think it does?

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Illustration Kouzuo Sakai, courtesy Spectrum Magazine

My latest story, about how autism starts, starts like this:

One of the oldest ideas in autism — as old as the naming of the condition itself — is that it comes in two forms: one present from birth, and one that abruptly emerges in toddlerhood. The latter type, or so the idea goes, announces itself through a rapid loss of skills.

In this classic picture of ‘regression,’ a talkative, curious 2-year-old suddenly withdraws. He grows indifferent to the sound of his name. He begins to speak less than before or stops entirely. He turns from playing with people to playing with things, from exploring many objects and activities to obsessing over a few. He loses many of the skills he had mastered and starts to rock, spin, walk on his toes or flap his hands. It’s often at this point that his terrified parents seek answers from experts.

The distinction between regressive autism and innate autism has shaped both scientific and cultural views about autism (including the spurious vaccine-as-cause controversy). But it increasingly appears this divide may be illusory.

Get the full skinny at Rethinking regression in autism, at Spectrum.

Culture/Healthcare policy/Medicine

On John McCain’s False Heroism

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Major Thomas David Dobbs, my uncle, back in the day.

My latest at Slate went up a couple days ago, after John McCain performed a weeklong drama in which he first revived the Kill Obamacare movement and then, telling reporters, “Watch the show,”  helped bring it to a halt. It was a hero script, but I found it cruel and self-indulgent. I have another script to offer for his next show.

What My Uncle, a Fighter Pilot, Might Have Thought of McCain’s “No” Moment

Brains and Behavior/Culture of Science/Medicine/Psychiatry/Published elsewhere/Writing

Smartphone psychiatry? How NIMH director Tom Insel turned from brain scanners to social tech

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Thomas Insel, photo courtesy of The Atlantic.

Around this time, Insel told me recently, he’d just finished a talk describing the wonderful things the NIMH was discovering about the brain when a man in the audience said, “You don’t get it.”

“Excuse me?,” Insel said. “I don’t get what?”

“Our house is on fire,” the man said, “and you’re telling us about the chemistry of the paint. We need someone to focus on the fire.”

“I heard that,” Insel told me. “I went home and thought, There’s truth to that. It’s not just that we don’t know enough. The gap between what we know and what we do is unacceptable.”

This is the story of how NIMH director Tom Insel, the most powerful psychiatrist in the world, decided to try closing that gap with smartphones — not as treatment, but as a way to assess mood, and then marshal the social and clinical support to intervene when need be.

The Smartphone Psychiatrist, at The Atlantic, July/August 2017

Biology/Biotech/Genetics/Medicine

Did the gene-drug revolution just arrive?

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Did the genomic revolution arrive last week, or was that just the snowstorm?

The answer depends on whom you listened to and what they thought of a study published on March 17 that showed a gene-based drug called Repatha reduced cardiovascular risk by 15%. Some called the study a triumph because it showed a drug developed through gene discovery could directly control a faulty gene’s output to therapeutic effect.

Others offered that the 15% reduction of cardiovascular risk was rather modest, being lower than the 20–25% predicted and not impressive next to existing drugs; opined that the drug is “an ingenious solution for a problem that’s mostly already solved; and noted that the the death rate itself didn’t change.”

It’s messy. My own quick take is that it’s a bit early to say Repatha settles the growing debate over whether we’re placing outsized bets on gene-based drug development. I’ve too many other commitments at present to get into this in any detail. Fortunately, Derek Lowe did get into it, three times. Amid the gush about the study’s results, his multiple examinations of this question remind us of how fraught and difficult these questions are.

Here are three snips from three his posts. I highly recommend reading all three in toto.

His quick first take, on March 17

This morning we have three-year data from Amgen and their drug Repatha (evolocumab), an announcement that has been eagerly awaited. And it’s honestly not all that impressive. There’s a 15% relative reduction in cardiovascular risk (heart attack, stroke, etc.) relative to placebo, but investors were looking for something more over 20%. Insurance companies were probably looking for that, too, and given the price they’d have been happier to see something more like 25%. Amgen is defending the data (as quotes in this Adam Feuerstein piece show), but I don’t think that’s going to do the job. The numbers shouldn’t have to be interpreted and spun; in a three-year study with over 13,000 patients in each arm, the numbers should be able to speak for themselves, and they don’t.

His March 20 post provides a thorough explanation — and then some perspective-taking:

The Amgen study, while successful, was not all that compelling. Yes, the relative risk for the composite cardiovascular endpoints used in the study went down, but not by as much as observers were hoping for (15% reduction versus 20 or 25%). And when you get down to overall mortality, there was no change at all, which has to be a disappointment. Amgen has been arguing that this was a relatively short study, and that the first measurements were also taken at a relatively early point in the treatment, and that the overall trend is for better numbers as the treatment goes on (which may well continue). But while these points may be valid, it’s a little rich for Amgen to be making them, because they designed this trial themselves, presumably to generate the most compelling results in the shortest amount of time. The fact that they’re having to make such arguments at all is a sign that the trial definitely did not come out the way that they’d hoped – you can be sure that the plan was not to have to say “Well, gosh, it’s really not bad if you look closely”.

and

What does this tell us, then, about genomics-based drug discovery? PCSK9 is about as compelling a story as we’re likely to see in this space, and if it has indeed come up a bit short, that’s food for thought. To be fair to Amgen, they may well be right about the continued improvements over longer-term therapy, in which case this story may have a better ending. But the slam-dunk game-winning ending is already gone. That may be the main lesson we can draw for now – here’s a terrific case, and it still didn’t blow everyone away when it finally got to multiyear human therapy. Everyone who’s following genetic-based clues to human therapy (a big crowd indeed) should keep this in mind.

In that second, longest post, he gives a hat-tip to the observer who called the study a triumph, saying that “PCSK9 is indeed the real thing, and just what people were expecting” back around 2000 when we sequenced the genome and thought it’d cure everything. It’s a conciliatory post. And yet…

So there’s a case to be made that this target really is the dawn of the era that we all thought was dawning years ago. I can appreciate the celebratory tone of Plenge’s post, but at the same time, if you’d told people back in 1999 how things had worked out, they would likely have been (at some level) horrified that (a) it took until the mid–2010s for something like this to happen and (b) that this is the main example that we can point to, and that the landscape is not littered with similar stories. That brave new world is not the one we live in, though, and for the one we’re in, this is a good result and we should make the most of it.