Redux: A Disease, A Miracle Drug, and a Tale of Uncertain Survival

By: | January 25, 2018

Five years ago I wrote a post about Pat Elliott, a woman with chronic leukemia. She was trying to figure out how to pay for her medication. At the time, Gleevec cost about $5,000 a month. A generic version of Gleevec went on the market in 2016, but it still costs more than $4,000 a month. In Canada, however, a month’s supply of generic Gleevec costs less than $800 a month. President Trump has accused the pharmaceutical industry of “getting away with murder.” But yesterday the Senate confirmed Alex Azar, Trump’s pick to run Health and Human Services. Azar served as president of Eli Lilly USA. The price of their insulin tripled under his tenure. 

Phoenix is scorching in the summer, and Pat Elliott had been standing for hours. So she wasn’t alarmed one August day in 2009 to find her feet swollen. “It must be the weather,” Elliott thought. But they also ached. The pain was horrendous. So she called her doctor, and he told her to come in. Reluctantly she went.

Several blood tests and a bone marrow biopsy later, Elliott learned she had a type of blood cancer called chronic myelogenous leukemia (CML). Her white cell count was sky high, her spleen was swollen, and her kidneys were failing.

All cancer is the result of genetic abnormalities. In the case of CML, the problem is a genetic swap. The tip of chromosome 22 breaks off and attaches itself to chromosome 9, and a chunk of 9 fuses with 22. This swap results in the formation of a new gene, a chimera called BCR-ABL. The gene codes for an enzyme that drives cells to incessantly divide.

Two decades ago, the best treatment for CML was a bone marrow transplant, a dangerous procedure with only limited success. Back then just 30% of patients diagnosed with CML could expect to live five years. In 2001, however, the US Food and Drug Administration approved a new drug, Gleevec. The medicine disables the defective Bcr-Abl enzyme, halting the rampant cell division. Today, the five-year survival of CML patients taking Gleevec is 89%.

In his masterful cancer tome Emperor of All Maladies, Siddhartha Mukherjee recalls seeing the astounding effects of Gleevec for the first time: When he looked at the patient’s blood smear, he could find no evidence of the immature blast cells that characterize the disease. The cells were completely normal. “It was hard to reconcile this field of blood cells in front of my eyes with the diagnosis; not a single leukemic blast was to be seen,” he writes. “If this man had CML, he was in a remission so deep that the disease had virtually vanished from sight.” Continue reading →

Redux: The Really Big, Astounding Experiment That Changed Everything But Kinda Happened By Accident

By: | January 24, 2018

I published this story at the beginning of 2017, ostensibly as a way to promote my book. But I keep coming back to read it because the study is just so astounding. It’s one of those wonderful moments in science where the tiniest tweak unlocks a whole new world. If you read science magazines – and certainly if you read this blog – you know by now that lots of people are talking about placebos these days. They are real, they are scientifically important, they are distracting, they are good, they have something to do with chakras, they are bad, they are the next big thing, they are a bunch of BS.

In my recent book, Suggestible You, I spend a fair amount of time talking about them and meeting with the luminaries of an emerging field within psychology and neuroscience that focuses almost totally on placebos and the expectations that create them. And yes, they are all of those things and more.

Over the past five (oh, who am I kidding – ten) years working on this project, I’ve tried to draw together a number of themes that all the scientists studying placebos have in common – belief, expectation, pain relief, and the power of subconscious cues. But there’s one thing that ties almost all the modern furor over placebos that I totally missed: Fields and Levine.

Howard Fields and Jon Levine were a couple scientists who, back in the 1970s, showed that the placebo effect for pain was triggered by a flood of internal opioids, similar to the endorphins that give us a runners high, among many other pleasurable experiences.

Almost every scientist I talked to who studies placebos mentioned their seminal 1978 paper. They get mentioned so much in the small world of placebo research that I started to think of them as some kind of mythical creature – the Fieldsnlevine. Just a little smaller than the Watsonncrick. It never occurred to me that they might be real people who put their pants on every day and occasionally pick up phones. Continue reading →

Juli Berwald on the Art of Growing a Backbone

By: | January 23, 2018

The lovely and absorbing new book Spineless: The Science of Jellyfish and the Art of Growing a Backbone, began when author Juli Berwald, a marine scientist turned technical writer, was factchecking an article about ocean acidification for National Geographic. She was asked to confirm a seemingly simple claim, made in a graphic, that jellyfish would be among the “winners” in an acidifying ocean. Berwald found herself in a sea of intriguing unknowns, and she eventually embarked on a years-long jellyfish odyssey that took her to Japan, Israel, and elsewhere.

This past weekend, her book tour brought her to Powells Books in Portland, Oregon, where we had a chance to talk about what she’s learned about jellyfish—and how much remains unknown. Continue reading →

Phone Hell

By: | January 22, 2018

Today marks the publication of yet another study telling us that our screens are making us miserable. Psychologist Jean Twenge at San Diego State University looked at survey results from more than a million U.S. 8th-, 10th-, and 12th-graders and found that those who spent more than an hour a day gazing into the rectangular abyss were unhappier and that gloom levels were correlated with screen time. The study also reports that teenagers are more miserable than they were in 2012 when apparently fewer of them had smartphones.

Now, I’d just like to point out some possible additional variables here. In 2012 Barack Obama won the presidency for the second time and as Atlantic journalist Molly Ball wrote, “his embrace of liberal stances on social issues, and the simultaneous victories for causes like same-sex marriage and marijuana legalization seemed to herald the dawn of a new, more liberal America.” So yeah…it might be possible that it isn’t the screen that is making us miserable, but what we see through it. Trump. Climate change. Men being horrible. Nazis. Rising inequality. Trump. Continue reading →

The Last Word

By: | January 20, 2018

Another week, another week of great reading here at LWON. We like to think so, anyway. Here’s what you missed:

Rose expands on an excellent article she did elsewhere (Rose, how could you?) on virtual reality and empathy…how donning the goggles theoretically can make you care but in practice might do something else entirely.

Ann tells us how astronomers are poets. And poetry gives a thing a whole different level of beauty.

Jessa offers a plea that we stop talking and start doing when it comes to climate change. Polar bears deserve better.

Sally reveals how steganography—the hiding of messages every which way—is evolving; the means and motives of embedding secrets are increasingly alarming and hard to combat.

And Ann also mourned the end of an Awl–and no, I’m not talking about the physical tool but something (a blog, if you must know) just as smart and pointed. Having the Awl made us all less stupid, so its demise is a real shame.

 

The Awl Died

By: | January 19, 2018

The Awl died. Or will die, in a couple of weeks. It was/is a website with the usual internet attitude – an awl, dear children, is a sharp pointed instrument for punching holes — but not the usual internet manners.  My Twitter feed is full of writers who were young a few years ago, who are sad for the death of The Awl and grateful for the chance it gave them to say what they needed to and in the way they needed to say it.  And they’re right, it was like a party in there, full of people with smart mouths and sharp eyes, funny and charming and sometimes boring and sometimes too revealing and you worried a little some might be self-destructive; but defying all human social tendencies, the party was friendly.  It was intelligent, idiosyncratic, and inclusive.

And when I say “inclusive,” I mean that they were, for a website that wasn’t a science website, open to including posts on science.  I wrote for them for a bit, early on.  I’d just written my third and fourth books back to back, had been underground for years, and when I came up for sunlight the whole publishing business had changed.  It was 2010 and staff writers were fallling out of the sky, freelancers’ print markets were going out of business, and nobody knew how to make money on the internet.  I stood there blinking in the sunlight, no ideas for another book, no ideas for stories even if I knew where to send them any more, wondering what to do next, and thoroughly sick of my own voice.  At that moment, Heather Pringle called and asked if I’d like to start a science blog, and I said “Sure.  What’s a blog?”  So I started reading blogs and websites and found a lot of resourceful people saying mean things in a clever way — but don’t read the comments, I did and dear God, are these people even house-broken?

That’s how I found The Awl.  It was run by Alex Balk and Choire Sicha, and though neither of them have run it for years now, I think they set up The Awl’s one-off combination of civility, humanity, and interestingness.

I dealt only with Choire.  Here’s Choire, and I’m cut-and-pasting sections from his emails without his permission:

Me:  Choire, do you want a post updating the post about Hanny’s Voorweerp?

Choire: DARLING!
Hello!
Hello from my underwater fish tank lair.
First order of business; who wouldn’t want this?
Second order of business: in the next few days things start calming
down and I want to talk to you!!!
Xo

Me: (later)  Here you go, Choire.

Choire: OH!
I LOVE IT!

The Awl-mourners on Twitter talk about their favorite posts and the ones I remember best is a series of posts by excellent, generous, and sadly late, Dave Bry, apologizing in detail to every person he’d ever neglected or been rude to.  The series was brilliant and so sweetly written and earnest that you felt you’d just apologized to all the people you’d been rude to.

The mourners also mention the comments section. The Awl commenters were not only civil, they were a sort of 4th Estate; you got the impression that the commenters were there to complement the writers, that The Awl was commenters + writers. That is, The Awl was what a blog ought to be, which is what writing ought to be: a conversation between two entities, neither of whom is expendable. I wrote a post once on physicists’ ways of estimating certainty and I don’t link to it now because it was made whole by the commenters’ applying estimates of certainty to their own lives, and for some reason, The Awl has removed all comments.

In 2010, we’d just started The Last Word on Nothing, some of us knew more or less what we were doing, and 200 viewers was a spectacularly good day.  One post suddenly headed due north, straight up and when I went to morning-read The Awl, I saw that Choire had linked to the LWON post the day before.  I wrote to thank him.

Choire: I actually sat down and made a routine for myself, a sort of jogging
path through the Internet, to ensure that I was going to cover the
things I wanted to this fall, and you were on it. Whee *jogs jogs
jogs*!

Me:  If you will, please keep us on your jogging path — my
co-bloggers are writing emails titled HOLY SHIT.  And thank you again.

Choire:   Hmm you guys have SUCH A QUALITY WEBSITE, and I’m afraid the people who would read you just don’t know you well enough yet!

Me:   Tell me what to do, Choire, and I’ll do it

Choire:  Hmm well we’ll just INSINUATE YOU. That’ll be step one.

And so he did.  He insinuated not only us but other websites and especially other writers, hundreds of them, especially young writers.  Who does this?  Somebody who knows in his bones how to make a community out of people who don’t know each other, who won’t ever meet, who now feel like the family home just got bulldozed, which is too bad but it’s still the family home.

Nobody still knows how to make money on the internet, except through foundation grants and salesmen; I remember when The Awl hired its first salesman and started paying writers, but apparently it wasn’t enough to last.

Me:  Dear Choire, thank you, thank you, thank you.  Our numbers are up.  Thank you.

Choire: Well you know. There’s people we have to take with us!

Let me say that again:  there’s people we have to take with us.

______

Photo of an awl:  Krissy and Dennis, via Flickr

 

 

 

 

 

Hidden in this picture

By: | January 18, 2018
a woman with a secret
She’s got a secret

When the ancient Greeks wanted to get something done, they really committed. In 499 B.C., in a bid to get out of an unpleasant job assignment, Histaeus, the leader of Miletus, plotted a rebellion against the Persian king Darius the Great. Elaborately coded missives sent to co-conspirators would only rouse suspicion. He needed something much sneakier. So Histaeus shaved his favorite slave’s head, tattooed the message on his scalp, and then waited for the hair to grow back. When the tattoo was sufficiently covered up, he sent the slave to visit his co-conspirator, who knew where to find the goods. 

This bit of stealth – not just sending a secret message but doing it in such a way that obscures any communication has taken place at all – is called steganography. In the 2500 years since Histaeus started his revolution, technology has helped steganography evolve, yielding methods from invisible ink to microdots, to secret bits stowed inside digital photos. But while this kind of thing makes for entertaining cocktail party chat, it has never borne much direct relevance to most people’s lives.

That’s about to change. Continue reading →